Personal Stories
Amy, 30 Crohn’s Disease since 1998
Co-Creator of IBDLiving.com
I was diagnosed with Crohn’s Disease in 1998 after several months of severe constipation, rectal bleeding and
bad abdominal pain. I was in and out of the hospital and after a colonoscopy, I was diagnosed. It took a few
months but once the GI was notified that the disease was in my paternal line, he knew what to look for. I think the
first half of my disease was very different from what it is now. I would go six to seven days without going to the
bathroom and would get very ill. I managed a few hospital trips and took some medicines but I had no respect for
the disease at that point in my life. I didn't appreciate just how bad it could get.
I was lucky enough to go in to remission when I became pregnant with my first son. I lived a great life filled with
Taco Bell burritos, salads, pizza and no right side pain! It was phenomenal. It lasted through my second
pregnancy, a total of almost four years, and then reemerged 11 days after my second son was born.
The reemergence has not been pretty or mild like the first go round. I have severe diarrhea, pain, bleeding, nausea
and have had two partial blockages in the first year. I have taken Entocort™, Asacol®, Prednisone, Imuran™ and
am currently taking an increased dose of Imuran and a second round of Entocort™. I have a stricture from scar
tissue that is near my terminal ileum. I had a CAT scan that revealed scar tissue bands have encapsulated my
appendix and drawn it up to be flesh with my small bowel. The scar tissue poses a problem for me because when
I lift my kids or push heavy things, it pulls and hurts as much as the spasms. The spasms have been getting so
bad that it feels like I am in childbirth all over again. I am having food blockages occasionally and I am doing
everything I can to keep going. It is tough and I find that I am increasingly exhausted and more frequently in pain. I
hope to try Humira or Remicade soon but I have been coughing up blood lately and they need to figure out the
cause of that. I had a clear x-ray and a clear CT Scan of the lungs so maybe it is a reflux thing!!! Remicade and
Humira are tough with little ones, but I think I will try anything but more Prednisone...!!!
I have resigned myself recently to the fact that I have to take the medicines. I put up a fight at first and thought I
could get away without them. A recent horrific flare and week long hospital stay has convinced me otherwise. I
inevitably will have to have a small bowel resection to remove the area that is strictured. Unfortunately for me, I
have the disease throughout my small intestine and in my colon as well, so surgery will not be beneficial in
removing my disease. Fortunately though, I have found a GI doctor that I trust and feel comfortable with. I am just
trying to do what I can to be home with my family and out of the hospital. This disease takes me on an emotional
roller coaster and most times I feel I am forced to make "the best of the worst" type of decisions.
I am blessed by my wonderful husband, John, and our two beautiful boys. Their patience, understanding and love
help me get my feet on the floor every morning. We are driven by our faith in God and we are inspired to do all that
we can to help others. My parents are angels from heaven. They are always there to help and give. I don't know
what I would do without them. Our family and friends give us the added strength and support that we need and so
greatly appreciate. I would be lost without my sister, Casey. Although I wouldn’t wish this disease on anyone, it is
nice to have her know what it is like to deal with Crohn’s everyday. I love her immensely. She introduced me to our
local CCFA Orange County support group. Their knowledge, compassion and unwavering support and friendship
have given me hope and strength. The message boards on this site have provided me with a group of people that
are like family. The support, friendship and genuine care from everyone on the board is a huge part of what keeps
me going. I am truly blessed to know each and every one of our members and I can't wait to meet the ones to
come...
Co-Creator of IBDLiving.com
I was diagnosed with Crohn’s Disease in 1998 after several months of severe constipation, rectal bleeding and
bad abdominal pain. I was in and out of the hospital and after a colonoscopy, I was diagnosed. It took a few
months but once the GI was notified that the disease was in my paternal line, he knew what to look for. I think the
first half of my disease was very different from what it is now. I would go six to seven days without going to the
bathroom and would get very ill. I managed a few hospital trips and took some medicines but I had no respect for
the disease at that point in my life. I didn't appreciate just how bad it could get.
I was lucky enough to go in to remission when I became pregnant with my first son. I lived a great life filled with
Taco Bell burritos, salads, pizza and no right side pain! It was phenomenal. It lasted through my second
pregnancy, a total of almost four years, and then reemerged 11 days after my second son was born.
The reemergence has not been pretty or mild like the first go round. I have severe diarrhea, pain, bleeding, nausea
and have had two partial blockages in the first year. I have taken Entocort™, Asacol®, Prednisone, Imuran™ and
am currently taking an increased dose of Imuran and a second round of Entocort™. I have a stricture from scar
tissue that is near my terminal ileum. I had a CAT scan that revealed scar tissue bands have encapsulated my
appendix and drawn it up to be flesh with my small bowel. The scar tissue poses a problem for me because when
I lift my kids or push heavy things, it pulls and hurts as much as the spasms. The spasms have been getting so
bad that it feels like I am in childbirth all over again. I am having food blockages occasionally and I am doing
everything I can to keep going. It is tough and I find that I am increasingly exhausted and more frequently in pain. I
hope to try Humira or Remicade soon but I have been coughing up blood lately and they need to figure out the
cause of that. I had a clear x-ray and a clear CT Scan of the lungs so maybe it is a reflux thing!!! Remicade and
Humira are tough with little ones, but I think I will try anything but more Prednisone...!!!
I have resigned myself recently to the fact that I have to take the medicines. I put up a fight at first and thought I
could get away without them. A recent horrific flare and week long hospital stay has convinced me otherwise. I
inevitably will have to have a small bowel resection to remove the area that is strictured. Unfortunately for me, I
have the disease throughout my small intestine and in my colon as well, so surgery will not be beneficial in
removing my disease. Fortunately though, I have found a GI doctor that I trust and feel comfortable with. I am just
trying to do what I can to be home with my family and out of the hospital. This disease takes me on an emotional
roller coaster and most times I feel I am forced to make "the best of the worst" type of decisions.
I am blessed by my wonderful husband, John, and our two beautiful boys. Their patience, understanding and love
help me get my feet on the floor every morning. We are driven by our faith in God and we are inspired to do all that
we can to help others. My parents are angels from heaven. They are always there to help and give. I don't know
what I would do without them. Our family and friends give us the added strength and support that we need and so
greatly appreciate. I would be lost without my sister, Casey. Although I wouldn’t wish this disease on anyone, it is
nice to have her know what it is like to deal with Crohn’s everyday. I love her immensely. She introduced me to our
local CCFA Orange County support group. Their knowledge, compassion and unwavering support and friendship
have given me hope and strength. The message boards on this site have provided me with a group of people that
are like family. The support, friendship and genuine care from everyone on the board is a huge part of what keeps
me going. I am truly blessed to know each and every one of our members and I can't wait to meet the ones to
come...
Casey, 33 Crohn's Disease since 2001
Co-Creator of IBDLiving.com
I always prided myself in healthy eating habits. Even through my teen years and twenties I chose the mixed greens
salad with grilled chicken and balsamic vinaigrette over the cheeseburger every time. I exercised and I always kept
up on the latest health news and enjoyed looking good! After giving birth to my second child at 27 years old via c-
section, it all changed. I was trying to take care of a baby and a 2 year old, but I was in the bathroom all the time
and my stomach always felt like it really hurt with pain and gas. Finally I gave into a trip to the doctor and they
diagnosed me with IBS. I lived off Tums® and Gas-X®, started losing weight rapidly and nothing made me feel
better, it was all I could do some days to just get out of bed.
It was the night before Valentines day, and I chose to eat a quick and unhealthy meal that I will never forget. After 2
hot dogs and some chips and dip, I laid down to go to bed and all of sudden my beautiful bedspread was now
covered in my half digested dinner. I barely made it to the bathroom and threw up for another 12 hours straight,
and it came out the other end as well, until I was just dry heaving blood and bile. My stomach pain was so bad, I
decided to go to the ER since it would not stop and it was 8am. After several days in the hospital and many tests
later, they finally found my small intestine swelled nearly shut on a small bowel series xray test that my sister had
told the doctor to perform. I was told I had “Crohn’s “ and sent home on a liquid diet and an order to see a G.I.
doctor.
Over the next year I tried many medicines and I landed myself in the ER a few more times with partial blockages
with the pain that was worse than natural childbirth. The CAT scan would show severe inflammation in my small
intestine and after a colonoscopy I was told it was in my large intestine as well. I tried Pentasa® which did not
help, and Remicade™ which worked wonderfully until I slowly developed an emerging allergic reaction after each
infusion and I was told I could no longer have it due to the possibility of anaphylactic shock the next time. I gave 6-
mp™ a whirl until I got very ill and was told it gave me a severe hemolytic that nearly killed me, and I tried Flagyl®
and Cipro® at the doctors request only to see my symptoms worsen. I had fevers, horrific joint pain that crippled
me on days, awful gas and needed to lay on the floor in pain usually in my right side anytime I ate anything. On a
rare occasion I would take Valium™ to help with my spasming pain, but it made me so nauseas I could not
tolerate it! Food became my enemy.
Eventually, I gave into the dreaded Prednisone™ and stayed on it for 8 months, and I felt great until the last couple
months I took a turn for the worse. I had terrible stomach pain, tons of diarrhea and major abdominal distention. I
would have nights of throwing up and thinking I was blocked, until one evening after I dinner the pain was so bad
and I could not stop vomiting. The paramedics had to carry me out of my bathroom into the ambulance as I
groaned and screamed to the hospital. The x-ray showed my entire system had shut down and stopped working
and I went into emergency surgery. The surgeon said due to the prednisone and sleeping medication I had been
taking, I had developed an upper intestinal impaction, and he took 5 feet out of cemented in stool, and had to cut
out my ileocecal valve and part of my large and small intestines. He said I was lucky to be alive and even though I
had terrible diarrhea, it was seeping down the sides of the impaction for possibly months and that my protein was
so low I was almost inoperable. The good news was that he took the parts of my intestines out that had the worst
of the Crohn’s .
Getting my strength back after the operation was the fight of my life, I had not one thing to eat for a week and a tube
stuck down my nose into my stomach sucking any contents out. My weight had plummeted to lower numbers than
I had ever seen, I looked awful. When I got back home to my 4 year old and a 6 year old and husband I was so
malnourished and it took months to get myself back to halfway normal, even though I pushed myself from day one
back to try and be a mom and wife again! The only thing that truly got me through was my faith in God and the
support of my family. My husband gave me so much emotional support and I remember my mom, dad and my
sister coming over to clean my house and help out with kids. Shortly after the surgery I experienced a heart
arrhythmia called SVT and had to have a catheter ablation, where the surgeon went into my heart and burned out
electrical pathways that were causing my heart to beat at 260 beats per minute, for hours at a time. My cardiologist
said the heart condition was genetic but was most likely brought out by the stress of the disease, surgery and the
prednisone.
Over the next year after the surgery, I had a lot of pain and diarrhea that would not quit, but I figured it was just side
effects of the surgery and not that the surgery had angered my intestine like my doctor warned me as a possibility.
I wasn’t throwing up, so I thought it could be because I have no valve. At the year mark, I noticed my system slowed
down and I was feeling good again, and it lasted about 2 months. Then the same symptoms came back again,
and I knew it couldn’t be because of my lack of valve! So here we went again, and the doc put me on Entocort™, a
lighter type of steroid with less side effects, and that was in the beginning of 2006. It did help a bit, but I was still
getting very ill and had no relief from the diarrhea and constant pain anytime I ate. Some days were better than
others, but mostly the quality of life was bad again and the joint pain had returned along with the chronic fatigue. I
had a colonoscopy that showed I was riddled with scar tissue and would need another surgery to clear it out in the
future. The scope actually got stuck and I had to scream through them trying to get it out.
Christmas night 2006 was the last straw, after eating a miniscule amount of food I had a terrible night and finally
gave in and called my doc again. He wanted to admit me to the hospital but I was able to talk him into 60 mg
Solumedrol™ shots and Humira®. Though Humira® is not approved for Crohn’s, studies shows it works just like
Remicade® and is an injection in the thigh or stomach every two weeks. After two weeks after injecting Humira®
and shots and moving to 40mg of Prednisone™ I got relief, and I am able to eat again for the first time really in
years, I am like a kid in a candy shop for now! I will be tapering off the steroids and relying on Humira® for now!
All in all this disease has been a constant struggle, but I will say my doctor is so wonderful and calls me
immediately back when I call him, he is my lifeline and I don’t know what I would do without his compassionate
care. Also, after my diagnosis I found the local Orange County Chapter CCFA support group and I have grown and
learned so much for years with such great and supportive others with Crohn’s and UC. During my surgery , a good
friend of mine “Jon” from the CCFA group came to the hospital and ran interference and provided much needed
support, which I will never forget. Through the years, his friendship and that of many others has made it easier to
deal with this disease. Since my sisters Crohn’s reoccurrence she has joined the CCFA group as well, and every
day we have each other for support and help, and to be honest I do not know what I would do without her
understanding and love. Our biological Father and Aunt who live in another state also have Crohn’s disease, so it
is genetic for us. Figuring out what to eat and not to eat has helped me as well, and ultimately my faith in God and
his love gets me through each day with hope. I also have the utmost gratitude for my parents and all the help they
give. I owe a huge gratitude to my husband who helps with everything, in such a tremendous way and to my kids
who are patient and loving. Without them, I would be lost. And…. I just have to laugh that a twinkie is better for me
now than a mixed greens salad!!!!!
Co-Creator of IBDLiving.com
I always prided myself in healthy eating habits. Even through my teen years and twenties I chose the mixed greens
salad with grilled chicken and balsamic vinaigrette over the cheeseburger every time. I exercised and I always kept
up on the latest health news and enjoyed looking good! After giving birth to my second child at 27 years old via c-
section, it all changed. I was trying to take care of a baby and a 2 year old, but I was in the bathroom all the time
and my stomach always felt like it really hurt with pain and gas. Finally I gave into a trip to the doctor and they
diagnosed me with IBS. I lived off Tums® and Gas-X®, started losing weight rapidly and nothing made me feel
better, it was all I could do some days to just get out of bed.
It was the night before Valentines day, and I chose to eat a quick and unhealthy meal that I will never forget. After 2
hot dogs and some chips and dip, I laid down to go to bed and all of sudden my beautiful bedspread was now
covered in my half digested dinner. I barely made it to the bathroom and threw up for another 12 hours straight,
and it came out the other end as well, until I was just dry heaving blood and bile. My stomach pain was so bad, I
decided to go to the ER since it would not stop and it was 8am. After several days in the hospital and many tests
later, they finally found my small intestine swelled nearly shut on a small bowel series xray test that my sister had
told the doctor to perform. I was told I had “Crohn’s “ and sent home on a liquid diet and an order to see a G.I.
doctor.
Over the next year I tried many medicines and I landed myself in the ER a few more times with partial blockages
with the pain that was worse than natural childbirth. The CAT scan would show severe inflammation in my small
intestine and after a colonoscopy I was told it was in my large intestine as well. I tried Pentasa® which did not
help, and Remicade™ which worked wonderfully until I slowly developed an emerging allergic reaction after each
infusion and I was told I could no longer have it due to the possibility of anaphylactic shock the next time. I gave 6-
mp™ a whirl until I got very ill and was told it gave me a severe hemolytic that nearly killed me, and I tried Flagyl®
and Cipro® at the doctors request only to see my symptoms worsen. I had fevers, horrific joint pain that crippled
me on days, awful gas and needed to lay on the floor in pain usually in my right side anytime I ate anything. On a
rare occasion I would take Valium™ to help with my spasming pain, but it made me so nauseas I could not
tolerate it! Food became my enemy.
Eventually, I gave into the dreaded Prednisone™ and stayed on it for 8 months, and I felt great until the last couple
months I took a turn for the worse. I had terrible stomach pain, tons of diarrhea and major abdominal distention. I
would have nights of throwing up and thinking I was blocked, until one evening after I dinner the pain was so bad
and I could not stop vomiting. The paramedics had to carry me out of my bathroom into the ambulance as I
groaned and screamed to the hospital. The x-ray showed my entire system had shut down and stopped working
and I went into emergency surgery. The surgeon said due to the prednisone and sleeping medication I had been
taking, I had developed an upper intestinal impaction, and he took 5 feet out of cemented in stool, and had to cut
out my ileocecal valve and part of my large and small intestines. He said I was lucky to be alive and even though I
had terrible diarrhea, it was seeping down the sides of the impaction for possibly months and that my protein was
so low I was almost inoperable. The good news was that he took the parts of my intestines out that had the worst
of the Crohn’s .
Getting my strength back after the operation was the fight of my life, I had not one thing to eat for a week and a tube
stuck down my nose into my stomach sucking any contents out. My weight had plummeted to lower numbers than
I had ever seen, I looked awful. When I got back home to my 4 year old and a 6 year old and husband I was so
malnourished and it took months to get myself back to halfway normal, even though I pushed myself from day one
back to try and be a mom and wife again! The only thing that truly got me through was my faith in God and the
support of my family. My husband gave me so much emotional support and I remember my mom, dad and my
sister coming over to clean my house and help out with kids. Shortly after the surgery I experienced a heart
arrhythmia called SVT and had to have a catheter ablation, where the surgeon went into my heart and burned out
electrical pathways that were causing my heart to beat at 260 beats per minute, for hours at a time. My cardiologist
said the heart condition was genetic but was most likely brought out by the stress of the disease, surgery and the
prednisone.
Over the next year after the surgery, I had a lot of pain and diarrhea that would not quit, but I figured it was just side
effects of the surgery and not that the surgery had angered my intestine like my doctor warned me as a possibility.
I wasn’t throwing up, so I thought it could be because I have no valve. At the year mark, I noticed my system slowed
down and I was feeling good again, and it lasted about 2 months. Then the same symptoms came back again,
and I knew it couldn’t be because of my lack of valve! So here we went again, and the doc put me on Entocort™, a
lighter type of steroid with less side effects, and that was in the beginning of 2006. It did help a bit, but I was still
getting very ill and had no relief from the diarrhea and constant pain anytime I ate. Some days were better than
others, but mostly the quality of life was bad again and the joint pain had returned along with the chronic fatigue. I
had a colonoscopy that showed I was riddled with scar tissue and would need another surgery to clear it out in the
future. The scope actually got stuck and I had to scream through them trying to get it out.
Christmas night 2006 was the last straw, after eating a miniscule amount of food I had a terrible night and finally
gave in and called my doc again. He wanted to admit me to the hospital but I was able to talk him into 60 mg
Solumedrol™ shots and Humira®. Though Humira® is not approved for Crohn’s, studies shows it works just like
Remicade® and is an injection in the thigh or stomach every two weeks. After two weeks after injecting Humira®
and shots and moving to 40mg of Prednisone™ I got relief, and I am able to eat again for the first time really in
years, I am like a kid in a candy shop for now! I will be tapering off the steroids and relying on Humira® for now!
All in all this disease has been a constant struggle, but I will say my doctor is so wonderful and calls me
immediately back when I call him, he is my lifeline and I don’t know what I would do without his compassionate
care. Also, after my diagnosis I found the local Orange County Chapter CCFA support group and I have grown and
learned so much for years with such great and supportive others with Crohn’s and UC. During my surgery , a good
friend of mine “Jon” from the CCFA group came to the hospital and ran interference and provided much needed
support, which I will never forget. Through the years, his friendship and that of many others has made it easier to
deal with this disease. Since my sisters Crohn’s reoccurrence she has joined the CCFA group as well, and every
day we have each other for support and help, and to be honest I do not know what I would do without her
understanding and love. Our biological Father and Aunt who live in another state also have Crohn’s disease, so it
is genetic for us. Figuring out what to eat and not to eat has helped me as well, and ultimately my faith in God and
his love gets me through each day with hope. I also have the utmost gratitude for my parents and all the help they
give. I owe a huge gratitude to my husband who helps with everything, in such a tremendous way and to my kids
who are patient and loving. Without them, I would be lost. And…. I just have to laugh that a twinkie is better for me
now than a mixed greens salad!!!!!
~~~
~~~
Below are personal stories of people living with Crohn's Disease and Ulcerative Colitis. If you would
like your story featured here, please email us at: stories@ibdliving.com
like your story featured here, please email us at: stories@ibdliving.com
Amanda Crohns' Disease Dx October 24, 2005 by an ER doctor
For as long as I can remember I have had bowel issues.. I was always constipated as a child so much my mom
even took me to doc and he said it was just normal for me. It would get so bad that it would actually make me
bleed. Then at 12 when I started my period it seemed that along with the C i had lots of cramping in my LRQ.. At 18
I was told it was endometriosis. Then at 21 they said cysts on my ovaries.
A little while later i went to my pcp for blood in stool and he said it was just a busted vein and not to worry.. So then
around the age of 24 I started having diarrhea. I would start to go in a store and have to leave and go home to
potty.. It was only a couple of times a day at first. I kept an eye on what i ate and there was no pattern. Along with the
D i had really bad cramping not just while i was on my period but it could strike anytime. My pcp said it was just my
nerves and put me on valium and it worked for a few months.
Then on August 20, 2005 I left my husband and my doggie Harley Davidson (who was my baby since i have no
children) died. And that really set the pain off.. Nothing helped. I was going to the potty up to 30 times a day.. I never
knew how important tp was until then lol... Well from all the stress I ended up in the ER and had all kinds of test ran
and then the doc said i think you have Crohn's disease.. The next day i had a sbft and it confirmed what 2 docs told
me.. I have been on asacol (which did not help me), pentasa, 6mp, imuran, remicade and pred..
So after a year of letting the doc put me on meds i took my health in my own hands and stopped all my meds.. I
had to stop 6mp due to nausea and remicade because I stayed sick on it. I started what a call a partial liquid diet. I
eat 1 healthy meal a day and the rest of the day i just drink liquids.. Boost with protein and multi-vit just to make
sure i get the vits i need.. I just had my blood work done today and my wbc count was 10.2.. I still have d 2-10 times
a day but i have more good days than bad now..
Also my husband and i wrote a book titled Waiting at Tomorrows Door: The diary of a Crohn's caregiver. It is short
but it lets you see the caregiver viewpoint and the Crohnie viewpoint.. It is short but while writing it i had been flaring
for almost a year. So my mind was out there somewhere.. lol i hope to put another one out with more things and
updates on both of us.. ok here is the link http://www.lulu.com/content/528618
For as long as I can remember I have had bowel issues.. I was always constipated as a child so much my mom
even took me to doc and he said it was just normal for me. It would get so bad that it would actually make me
bleed. Then at 12 when I started my period it seemed that along with the C i had lots of cramping in my LRQ.. At 18
I was told it was endometriosis. Then at 21 they said cysts on my ovaries.
A little while later i went to my pcp for blood in stool and he said it was just a busted vein and not to worry.. So then
around the age of 24 I started having diarrhea. I would start to go in a store and have to leave and go home to
potty.. It was only a couple of times a day at first. I kept an eye on what i ate and there was no pattern. Along with the
D i had really bad cramping not just while i was on my period but it could strike anytime. My pcp said it was just my
nerves and put me on valium and it worked for a few months.
Then on August 20, 2005 I left my husband and my doggie Harley Davidson (who was my baby since i have no
children) died. And that really set the pain off.. Nothing helped. I was going to the potty up to 30 times a day.. I never
knew how important tp was until then lol... Well from all the stress I ended up in the ER and had all kinds of test ran
and then the doc said i think you have Crohn's disease.. The next day i had a sbft and it confirmed what 2 docs told
me.. I have been on asacol (which did not help me), pentasa, 6mp, imuran, remicade and pred..
So after a year of letting the doc put me on meds i took my health in my own hands and stopped all my meds.. I
had to stop 6mp due to nausea and remicade because I stayed sick on it. I started what a call a partial liquid diet. I
eat 1 healthy meal a day and the rest of the day i just drink liquids.. Boost with protein and multi-vit just to make
sure i get the vits i need.. I just had my blood work done today and my wbc count was 10.2.. I still have d 2-10 times
a day but i have more good days than bad now..
Also my husband and i wrote a book titled Waiting at Tomorrows Door: The diary of a Crohn's caregiver. It is short
but it lets you see the caregiver viewpoint and the Crohnie viewpoint.. It is short but while writing it i had been flaring
for almost a year. So my mind was out there somewhere.. lol i hope to put another one out with more things and
updates on both of us.. ok here is the link http://www.lulu.com/content/528618
~~~
MarJo, 33 Crohn's Disease, since 2006
Before September 5th of 2006 I had never even heard of Crohn's Disease. “They” say that Crohn’s disease is
triggered by a stressful event….I had just finished planning a large church festival, became separated from my
husband of 10 years and was beginning to be a single mother of 3 ,who worked full time and was going to school
full time. (Is that stressful?).
So for a few weeks I was experiencing pain in my lower right side but dismissed it as minor. Well on the
September 5th I woke up and thought that I was giving birth. The pain was so intense. But despite the pain I still
managed to drive to the ER. They got me right in and gave me a CTscan. After 6 hours of waiting and the pain
being so horrible, the ER doctor informed me. "You my friend have Crohn's Disease." I was sent home to digest
that information and then report to our family doctor the following day. My family doctor felt that the ER doctor was
wrong and stated it was my gallbladder. I was sent home again to wait. I was unable to eat, drink or even get out
of bed. I had to take a leave from work, withdraw from school and miss a huge part of my children’s life. Finally I
had my initial appointment with the GI and with a colonoscopy was officially told I had Crohn’s Disease.
She put me on Asacol and told me to come back in two weeks. However, during those 2 weeks the pain was
unbearable. My children were functioning, my husband was managing the house and my parents were doing
verything they could to make it better. I wasn't eating therefore I wasn't going to the restroom. Finally, after the two
weeks I went back to the doctor… I had lost 20 pounds and was dehydrated and admitted into the hospital. After a
CT scan it was determined that I had micro perforations in my small intestines and needed emergency surgery. I
was transported by ambulance and surgery was performed.
However, when I woke up life was forever altered. I was given an ileostomy for the infection in my intestines
was so severe that 15 inches of my bowel was removed and due to the severity of the infection the doctor’s had to
leave my entire abdomen open to close from the inside out. Recovery was difficult but I had WONDERFUL family
support. I had home health come in 3 times a week to change my wound and lost a little of me. My body was
forever altered.
But living with an ostomy was brutal. It wore me mentally. I felt as if I was half a person. But man could I eat. I
eat everything that I wanted because it just went right through me.
Finally, on January 12th I had my closure surgery and was looking forward to life with Crohn's but then an
abscess formed and I was readmitted and had another surgery. Once at home I had another large wound and
had to have home health come in again and care for my wound. I took Prednisone to jump start my bowels and
was one of the lucky ones to stop shortly after coming home. I eventually started taking Entocort and remained on
that for 3 months. I currently am taking Imuran and will be attempting Remicade to decrease my continuous flares.
Since all this has occurred I have lost my job, my friends no longer call and were actually mad at me for being
sick so long and not returning to work sooner. It is my family that has been remarkable.
I have been active with the my local CCFA, walked in with my team in the Guts and Glory walk and am on the
planning committee for the 2008 Take Steps Walk in Cleveland, Ohio.
My wound is still NOT closed. It has been open for over a year. I have had 2 more surgeries to attempt to close
the wound however it remains open. My surgeon remains remarkable and we have all our faith in him and
University Hospitals.
This disease truly can be depressing and my journey is not over only just beginning. I still find it difficult to talk
about being sick and get irritated that it is a life long disease. But with my faith, my family and IBDliving, there are
days that I can see the light at the end of the tunnel.
Before September 5th of 2006 I had never even heard of Crohn's Disease. “They” say that Crohn’s disease is
triggered by a stressful event….I had just finished planning a large church festival, became separated from my
husband of 10 years and was beginning to be a single mother of 3 ,who worked full time and was going to school
full time. (Is that stressful?).
So for a few weeks I was experiencing pain in my lower right side but dismissed it as minor. Well on the
September 5th I woke up and thought that I was giving birth. The pain was so intense. But despite the pain I still
managed to drive to the ER. They got me right in and gave me a CTscan. After 6 hours of waiting and the pain
being so horrible, the ER doctor informed me. "You my friend have Crohn's Disease." I was sent home to digest
that information and then report to our family doctor the following day. My family doctor felt that the ER doctor was
wrong and stated it was my gallbladder. I was sent home again to wait. I was unable to eat, drink or even get out
of bed. I had to take a leave from work, withdraw from school and miss a huge part of my children’s life. Finally I
had my initial appointment with the GI and with a colonoscopy was officially told I had Crohn’s Disease.
She put me on Asacol and told me to come back in two weeks. However, during those 2 weeks the pain was
unbearable. My children were functioning, my husband was managing the house and my parents were doing
verything they could to make it better. I wasn't eating therefore I wasn't going to the restroom. Finally, after the two
weeks I went back to the doctor… I had lost 20 pounds and was dehydrated and admitted into the hospital. After a
CT scan it was determined that I had micro perforations in my small intestines and needed emergency surgery. I
was transported by ambulance and surgery was performed.
However, when I woke up life was forever altered. I was given an ileostomy for the infection in my intestines
was so severe that 15 inches of my bowel was removed and due to the severity of the infection the doctor’s had to
leave my entire abdomen open to close from the inside out. Recovery was difficult but I had WONDERFUL family
support. I had home health come in 3 times a week to change my wound and lost a little of me. My body was
forever altered.
But living with an ostomy was brutal. It wore me mentally. I felt as if I was half a person. But man could I eat. I
eat everything that I wanted because it just went right through me.
Finally, on January 12th I had my closure surgery and was looking forward to life with Crohn's but then an
abscess formed and I was readmitted and had another surgery. Once at home I had another large wound and
had to have home health come in again and care for my wound. I took Prednisone to jump start my bowels and
was one of the lucky ones to stop shortly after coming home. I eventually started taking Entocort and remained on
that for 3 months. I currently am taking Imuran and will be attempting Remicade to decrease my continuous flares.
Since all this has occurred I have lost my job, my friends no longer call and were actually mad at me for being
sick so long and not returning to work sooner. It is my family that has been remarkable.
I have been active with the my local CCFA, walked in with my team in the Guts and Glory walk and am on the
planning committee for the 2008 Take Steps Walk in Cleveland, Ohio.
My wound is still NOT closed. It has been open for over a year. I have had 2 more surgeries to attempt to close
the wound however it remains open. My surgeon remains remarkable and we have all our faith in him and
University Hospitals.
This disease truly can be depressing and my journey is not over only just beginning. I still find it difficult to talk
about being sick and get irritated that it is a life long disease. But with my faith, my family and IBDliving, there are
days that I can see the light at the end of the tunnel.
~~~
Amy, 32 Crohn's Disease since 1996
My story starts in 1996. It all started with severe pains after eating and just plain exhaustion. I went to the Doc and
was told that I was probably suffering from stress. Ok so I was put on anti-depressants. I hated them and they
did nothing to help with the pain I was constantly in. So I went back to he Doc and was told I needed to have a
colonoscopy. I went through with this test and the doctor told me I had IBS and sent me on my way. That night I
broke out with a high fever and the pains were so bad I could not move. My Mom took me to the ER and I was
admitted due to an elevated Sed rate. After 3 days they released me and said I had chronic Appendicitis. I was
referred to a surgeon that requested a CAT scan first. This is what finally showed that I had Crohns. I was
immediately put on Asacol and Prednisone. After 2 weeks of no relief and pain so severe I could not move my
body they admitted me back in the hospital and set me up for surgery. They brought in the gallon of stuff to drink to
help “clean” me out. Every time I took a sip I would throw it up. So lucky me had to have a tube inserted (while I
was awake) through my nose that went to my stomach and the nurse would come in every couple minutes and
inject the liquid through the tube into my stomach. They also came in and gave me a central line(pic line). All I can
say is this was one of the worst nights in my life up until then. So the next day was surgery day and I was so
scared. I had never even heard of crohns disease up until this point. I was told after the surgery that not only had
they removed 26 inches of my Small intestine but while we were in there we removed your appendix. Also I had
an abscess on my bladder; I laughed and said I told you it hurt when I would pee. After 28 days in the Hospital I
was sent home on Prednisone, Asacol, and some antibiotics. I had just turned 21 and was not at all happy with
the meds and the moon face. Finally, I was taken off the Prednisone and I would say my life almost returned to
normal for about 5 years. I had a few flare ups but, it was nothing I couldn't handle.
Then it all started again in June 2001. I tried my best to control it myself. I refused to go to the hospital or the
Doctor’s. I just didn't want to go through it all again. I guess I thought maybe it will just go away. Boy was I
wrong!! I had just started a new job in March and didn’t know what to do. I was so sick I finally let my Mom take
me to the ER and there I was for another 32 days. I had to have another surgery. At least this time I was ready for
the pic line and tube in my nose. This time they put it in during my surgery so I didn't feel it ripping the cartilage in
my nose. I think they took out 17 inches of my sb. I'm not saying this surgery was better but I was definitely more
prepared for what was to come. This time I was released on Asacol, antibiotics, and 6MP. I was again OK for
about 3 yrs. I started to have really bad flare ups again and was put back on Prednisone. They also started me on
the Remicade treatments. Everything seemed to be calming down but I started to have really bad joint pain. My
Doc did some blood work and I guess it showed really high ANA levels. They immediately stopped my Remicade
and said I was having “lupus like syndrome”. I guess it was a side effect from the med. Again I was put through
all kinds of cat scans and MRI of my elbows. It got so bad my elbows kept getting stuck in positions and they were
actually crooked. After all the testing I was told I had Avascular Necrosis aka Dead Bone Disease. This is caused
by prolonged use of Prednisone. Great I said now what???? I have since had surgery on both my elbows due to
collapse of the joints, and I’m currently recovering from a knee replacement. All from the one medicine that
seemed to help me with my flare ups. I also am currently trying to avoid a third surgery. I recently swallowed a
camera so the docs could see how my disease is progressing. The results showed ulcers and strictures
throughout my surgery site. I am back on Remicade, and Prednisone. I also have to take potassium and B-12
injections due to malabsorption. I am also on Pentesa and 6MP. I am currently undergoing testing for a heart
problem. They have already determined it is a form of Tachardia, but they need to see why it is happening. They
have told me that they think it is Mitral valve prolapse. Again, I say Great, bring it on I'm ready for anything LOL.
My story starts in 1996. It all started with severe pains after eating and just plain exhaustion. I went to the Doc and
was told that I was probably suffering from stress. Ok so I was put on anti-depressants. I hated them and they
did nothing to help with the pain I was constantly in. So I went back to he Doc and was told I needed to have a
colonoscopy. I went through with this test and the doctor told me I had IBS and sent me on my way. That night I
broke out with a high fever and the pains were so bad I could not move. My Mom took me to the ER and I was
admitted due to an elevated Sed rate. After 3 days they released me and said I had chronic Appendicitis. I was
referred to a surgeon that requested a CAT scan first. This is what finally showed that I had Crohns. I was
immediately put on Asacol and Prednisone. After 2 weeks of no relief and pain so severe I could not move my
body they admitted me back in the hospital and set me up for surgery. They brought in the gallon of stuff to drink to
help “clean” me out. Every time I took a sip I would throw it up. So lucky me had to have a tube inserted (while I
was awake) through my nose that went to my stomach and the nurse would come in every couple minutes and
inject the liquid through the tube into my stomach. They also came in and gave me a central line(pic line). All I can
say is this was one of the worst nights in my life up until then. So the next day was surgery day and I was so
scared. I had never even heard of crohns disease up until this point. I was told after the surgery that not only had
they removed 26 inches of my Small intestine but while we were in there we removed your appendix. Also I had
an abscess on my bladder; I laughed and said I told you it hurt when I would pee. After 28 days in the Hospital I
was sent home on Prednisone, Asacol, and some antibiotics. I had just turned 21 and was not at all happy with
the meds and the moon face. Finally, I was taken off the Prednisone and I would say my life almost returned to
normal for about 5 years. I had a few flare ups but, it was nothing I couldn't handle.
Then it all started again in June 2001. I tried my best to control it myself. I refused to go to the hospital or the
Doctor’s. I just didn't want to go through it all again. I guess I thought maybe it will just go away. Boy was I
wrong!! I had just started a new job in March and didn’t know what to do. I was so sick I finally let my Mom take
me to the ER and there I was for another 32 days. I had to have another surgery. At least this time I was ready for
the pic line and tube in my nose. This time they put it in during my surgery so I didn't feel it ripping the cartilage in
my nose. I think they took out 17 inches of my sb. I'm not saying this surgery was better but I was definitely more
prepared for what was to come. This time I was released on Asacol, antibiotics, and 6MP. I was again OK for
about 3 yrs. I started to have really bad flare ups again and was put back on Prednisone. They also started me on
the Remicade treatments. Everything seemed to be calming down but I started to have really bad joint pain. My
Doc did some blood work and I guess it showed really high ANA levels. They immediately stopped my Remicade
and said I was having “lupus like syndrome”. I guess it was a side effect from the med. Again I was put through
all kinds of cat scans and MRI of my elbows. It got so bad my elbows kept getting stuck in positions and they were
actually crooked. After all the testing I was told I had Avascular Necrosis aka Dead Bone Disease. This is caused
by prolonged use of Prednisone. Great I said now what???? I have since had surgery on both my elbows due to
collapse of the joints, and I’m currently recovering from a knee replacement. All from the one medicine that
seemed to help me with my flare ups. I also am currently trying to avoid a third surgery. I recently swallowed a
camera so the docs could see how my disease is progressing. The results showed ulcers and strictures
throughout my surgery site. I am back on Remicade, and Prednisone. I also have to take potassium and B-12
injections due to malabsorption. I am also on Pentesa and 6MP. I am currently undergoing testing for a heart
problem. They have already determined it is a form of Tachardia, but they need to see why it is happening. They
have told me that they think it is Mitral valve prolapse. Again, I say Great, bring it on I'm ready for anything LOL.
Joe, 34 Crohn's Disease since 1998
I was misdiagnosed with irritable bowl syndrome for about 5 or so years before I decided to go to a
Gastroenterologist. My GI also thought I had Irritable Bowl but sent me for a Upper GI and lower bowl study to just
make sure and found the Crohn’s Disease in my terminal Ileum and colon. So far pretty normal stuff.
My GI started me on Asacol but I had a reaction to it (hallucinations). So he put me on Pentasa I handled that fine. I
ended up going on Prednisone 60mg a short time later because I was having trouble in the bathroom. You know
what I mean. This did not seem to help it just caused me to be irritable, bloated and fatigued.
He then started me on Remicade in the spring/summer of 1999. But I think it was to late for it to have any real
affect on the Crohn’s. Then came Y2K, (yes the year 2000) I will not forget that year. It started off great I got married
to my fiancée Karen on Memorial Day weekend. But then it all went downhill from there (not the marriage). My
mom passed away about three weeks after my marriage from thyroid cancer. That puts a real damper on the
whole newlywed thing. And then a month later my father in-law passed away from lung cancer. They say stress
can cause your symptoms to flare up I don’t know who they are but their right.
I ended up going into the hospital for a week from Fistulas in my lower bowel. That is when they started me on
Cipro and Flagyl I would end up being on these for about a year. This is about the time I started looking for a new
Doctor, as the one I was seeing liked to leave the country for weeks at a time and I did not like anyone else in his
group.
During this time I was visiting the ER about once a month to help me get past the pain I was in. They did not know
what else to do but give me a shot Demerol or Delaudid. I ended up finding a new doctor about 40 miles from my
home. It is also when we decided that we would need to make him understand I was in trouble. My wife and I had
a real hard time convincing him of my situation. He thought I was addicted to pain meds. It seems I didn’t show
what I was feeling in my face or attitude somehow I mask it.
That all changed when my wife called him at 2am crying because she could not stand to see me suffer anymore. I
had surgery in November 2000. They took out about a foot of intestine from my Terminal Ileum back and a couple
of other small resections. They also did exploratory surgery to uncover an infection that was surrounding my
kidneys and would have caused me to go sepsis and might have killed me if it were not found. You should have
seen the look on the Doctor’s face when he found out how sick I really was.
They also found out that I have diverticulitus and decided that it would be best to give me a temporary colostomy to
help it heal. That was reversed in March 2001. After that I felt great for a few years. That is until 2005. I was
hospitalized in April 2005 for Diverticulitus. Boy does that have some teeth. Pain like I have never felt before. I
could not hide that if I tried. I also found out that Diverticulitus can come back; no one ever told me that before. This
is also when I found my new GI doctor. He is great he really seems to care. Definitely something I’ve not
experienced before. Anyway it seems my Crohn’s has flared up again but at first I didn’t know. Somehow I did not
feel it (no pain but a big infection).
I started back up on the Remicade 10mg infusion but it didn't seem to help. We tried doubling the dosage but I
had to stop taking it because I had a very bad reaction to it (Anaphylactic) and it is just to dangerous to try again. I
was also on Entocort 9mg it helped a little but then it just seemed to stop. He tried to put me on Imuran but I had a
reaction to it (Kidneys almost shut down). At my last colonoscopy my GI said it looks like I am need surgery again.
I have almost total blockage in my Sigmoud colon and I show alot of infection in the area just past my terminal
ileum in the large intestine.
I am not into the idea of surgery. Who would be? I have tried tons of other stuff that I did not mention in this story
but none of them have helped.
As of late I am currently taking Cipro/Flagyl 1000mg each I have been on these for more than a year now and
Prednisone 30mg for about 4 months. I have some bad days and some real bad days. But I keep trucking on. I am
finding it harder and harder though.
I try not to let my crohn's stop me but this course of action is taking it's toll on me. I end up pushing myself to far
and that is bad.
I was misdiagnosed with irritable bowl syndrome for about 5 or so years before I decided to go to a
Gastroenterologist. My GI also thought I had Irritable Bowl but sent me for a Upper GI and lower bowl study to just
make sure and found the Crohn’s Disease in my terminal Ileum and colon. So far pretty normal stuff.
My GI started me on Asacol but I had a reaction to it (hallucinations). So he put me on Pentasa I handled that fine. I
ended up going on Prednisone 60mg a short time later because I was having trouble in the bathroom. You know
what I mean. This did not seem to help it just caused me to be irritable, bloated and fatigued.
He then started me on Remicade in the spring/summer of 1999. But I think it was to late for it to have any real
affect on the Crohn’s. Then came Y2K, (yes the year 2000) I will not forget that year. It started off great I got married
to my fiancée Karen on Memorial Day weekend. But then it all went downhill from there (not the marriage). My
mom passed away about three weeks after my marriage from thyroid cancer. That puts a real damper on the
whole newlywed thing. And then a month later my father in-law passed away from lung cancer. They say stress
can cause your symptoms to flare up I don’t know who they are but their right.
I ended up going into the hospital for a week from Fistulas in my lower bowel. That is when they started me on
Cipro and Flagyl I would end up being on these for about a year. This is about the time I started looking for a new
Doctor, as the one I was seeing liked to leave the country for weeks at a time and I did not like anyone else in his
group.
During this time I was visiting the ER about once a month to help me get past the pain I was in. They did not know
what else to do but give me a shot Demerol or Delaudid. I ended up finding a new doctor about 40 miles from my
home. It is also when we decided that we would need to make him understand I was in trouble. My wife and I had
a real hard time convincing him of my situation. He thought I was addicted to pain meds. It seems I didn’t show
what I was feeling in my face or attitude somehow I mask it.
That all changed when my wife called him at 2am crying because she could not stand to see me suffer anymore. I
had surgery in November 2000. They took out about a foot of intestine from my Terminal Ileum back and a couple
of other small resections. They also did exploratory surgery to uncover an infection that was surrounding my
kidneys and would have caused me to go sepsis and might have killed me if it were not found. You should have
seen the look on the Doctor’s face when he found out how sick I really was.
They also found out that I have diverticulitus and decided that it would be best to give me a temporary colostomy to
help it heal. That was reversed in March 2001. After that I felt great for a few years. That is until 2005. I was
hospitalized in April 2005 for Diverticulitus. Boy does that have some teeth. Pain like I have never felt before. I
could not hide that if I tried. I also found out that Diverticulitus can come back; no one ever told me that before. This
is also when I found my new GI doctor. He is great he really seems to care. Definitely something I’ve not
experienced before. Anyway it seems my Crohn’s has flared up again but at first I didn’t know. Somehow I did not
feel it (no pain but a big infection).
I started back up on the Remicade 10mg infusion but it didn't seem to help. We tried doubling the dosage but I
had to stop taking it because I had a very bad reaction to it (Anaphylactic) and it is just to dangerous to try again. I
was also on Entocort 9mg it helped a little but then it just seemed to stop. He tried to put me on Imuran but I had a
reaction to it (Kidneys almost shut down). At my last colonoscopy my GI said it looks like I am need surgery again.
I have almost total blockage in my Sigmoud colon and I show alot of infection in the area just past my terminal
ileum in the large intestine.
I am not into the idea of surgery. Who would be? I have tried tons of other stuff that I did not mention in this story
but none of them have helped.
As of late I am currently taking Cipro/Flagyl 1000mg each I have been on these for more than a year now and
Prednisone 30mg for about 4 months. I have some bad days and some real bad days. But I keep trucking on. I am
finding it harder and harder though.
I try not to let my crohn's stop me but this course of action is taking it's toll on me. I end up pushing myself to far
and that is bad.
~~~
Christina, 54 Crohn's Disease & Ulcerative Colitis
My story is a long one, so how about I start & just give some highlights so you all don't get stuck with a giant
novella.
I was born in Japan & had lived in Europe and Asia until my teens, so any doc that even had a desire to help me
always jumped to the conclusion that I was suffering with parasites. And when my tests came back clean, well
they just dropped the ball on me. I don't think they believed me when I would tell stories of arriving home, putting
the key in the front door, getting the feeling that I needed a bathroom & never making it to the bathroom in that
short time & distance. I was fortunate ~ well in some respects ~ that I was hospitalized for 3 months with
something totally unrelated and while I was in there, my new doc said that he was bound & determined to find out
what the hell was wrong with my gut. And that's when I was given my Crohn's, Erosive Gastritis & UC dx. But the
years that I suffered were torture. That was in the mid-70's and then I had my first resection in '86.
I turn 54 on Easter Sunday. I had an emergency save my life ileostomy and colostomy on my 50th birthday in
2003. I was supposed to be going to my surprise birthday dinner with bunches of friends but ended up in the ER
instead. My ostomies were to be temporary for about 3 months, I was on the operating table way too long ~ end
result was a much less than perfect stoma. Actually, it was more like the stoma from hell. But what the heck, can
survive for just a few months. But then I decided that I didn't want to be reconnected ~ loved my newfound
freedoms that ostomy gave me. So went back last July to have my stoma relocated while they repaired a few
hernia. I now have a perfect "Rosebud" straight-shooting stoma in a convenient location.
I am currently waiting to hear back from my gastro to see if he's okay with my request to postpone the removal of
the little bit of colon I have left until the first of Sept. I just don't have the time nor the inclination to go through
another bowel surgery right now. Scopes showed that my colon "is ravaged with CD and colitis" although I don't
feel as bad as he thinks I should feel. My gastro says that I have the most aggressive case of Crohn's Disease
that he's ever met in his entire career. Oh joy, oh rapture, thank you so very much!
I am on the Board of Directors for the IQP (IBD Quilt Project), help out with GYGIG in Seattle, member of UOAA &
CCFA, have a stained glass business with studio in my home, sell my SG in an artist coop (work the shop four
days a month) gift shop in an exclusive marina/yacht club area on Lake Washington (equals tourists with heavy
wallets), never have enough hours in the day or days in the week to tick off all the items on my to-do list.
My story is a long one, so how about I start & just give some highlights so you all don't get stuck with a giant
novella.
I was born in Japan & had lived in Europe and Asia until my teens, so any doc that even had a desire to help me
always jumped to the conclusion that I was suffering with parasites. And when my tests came back clean, well
they just dropped the ball on me. I don't think they believed me when I would tell stories of arriving home, putting
the key in the front door, getting the feeling that I needed a bathroom & never making it to the bathroom in that
short time & distance. I was fortunate ~ well in some respects ~ that I was hospitalized for 3 months with
something totally unrelated and while I was in there, my new doc said that he was bound & determined to find out
what the hell was wrong with my gut. And that's when I was given my Crohn's, Erosive Gastritis & UC dx. But the
years that I suffered were torture. That was in the mid-70's and then I had my first resection in '86.
I turn 54 on Easter Sunday. I had an emergency save my life ileostomy and colostomy on my 50th birthday in
2003. I was supposed to be going to my surprise birthday dinner with bunches of friends but ended up in the ER
instead. My ostomies were to be temporary for about 3 months, I was on the operating table way too long ~ end
result was a much less than perfect stoma. Actually, it was more like the stoma from hell. But what the heck, can
survive for just a few months. But then I decided that I didn't want to be reconnected ~ loved my newfound
freedoms that ostomy gave me. So went back last July to have my stoma relocated while they repaired a few
hernia. I now have a perfect "Rosebud" straight-shooting stoma in a convenient location.
I am currently waiting to hear back from my gastro to see if he's okay with my request to postpone the removal of
the little bit of colon I have left until the first of Sept. I just don't have the time nor the inclination to go through
another bowel surgery right now. Scopes showed that my colon "is ravaged with CD and colitis" although I don't
feel as bad as he thinks I should feel. My gastro says that I have the most aggressive case of Crohn's Disease
that he's ever met in his entire career. Oh joy, oh rapture, thank you so very much!
I am on the Board of Directors for the IQP (IBD Quilt Project), help out with GYGIG in Seattle, member of UOAA &
CCFA, have a stained glass business with studio in my home, sell my SG in an artist coop (work the shop four
days a month) gift shop in an exclusive marina/yacht club area on Lake Washington (equals tourists with heavy
wallets), never have enough hours in the day or days in the week to tick off all the items on my to-do list.
~~~
Jod Crohn's Disease
My mother was terminal with COPD, but her biggest complaint was problems with her bowels. They never did
diagnose her problem, but she was miserable with it. I should have felt sorrier for her!
She passed away just after my 42nd birthday. Low and behold, she wasn't any more than burried and I began to
have gut pain. I had already had 1 hernia repair and just figured at first that the hernia was back. The pain would
come and go but was bearable at first. Then came the fits of diarrhea. Finally one night, I was up till 2 AM with
horrible pain, D and major vomitting. Went to the ER. They pretty much told me I was pschyco and sent me home.
By morning, I was begging for a doc that would help me even if it was a vet!
By 2 PM that day, I was in surgery for a hernia that didn't exist. These episodes continued and finally they could
see that I was having partial obstructions. They blamed scar tissue, endometriosis, you name it. I even had 1 ER
doc want to give me an enema and send me home. This was many partial obstructions later. I had to threaten a
law suit to get him to call in X-ray, then he acted like he was the one who suspected a bowel obstruction to begin
with, big jack-ass!
This went on for about 7 yrs when finally my surgeon saw a stricture on the CAT scan.....he diagnosed my Crohn's
and put me on my first meds. What a wonderful relief! I had probably been in and out of the hospital 40 or 50
times and had probably 35 partial bowel obstructions. I then had a resection of my small bowel. Life has not been
great, but it is better when you have a Dx, meds and people who know what they're dealing with!
That's how it happened for me.
My mother was terminal with COPD, but her biggest complaint was problems with her bowels. They never did
diagnose her problem, but she was miserable with it. I should have felt sorrier for her!
She passed away just after my 42nd birthday. Low and behold, she wasn't any more than burried and I began to
have gut pain. I had already had 1 hernia repair and just figured at first that the hernia was back. The pain would
come and go but was bearable at first. Then came the fits of diarrhea. Finally one night, I was up till 2 AM with
horrible pain, D and major vomitting. Went to the ER. They pretty much told me I was pschyco and sent me home.
By morning, I was begging for a doc that would help me even if it was a vet!
By 2 PM that day, I was in surgery for a hernia that didn't exist. These episodes continued and finally they could
see that I was having partial obstructions. They blamed scar tissue, endometriosis, you name it. I even had 1 ER
doc want to give me an enema and send me home. This was many partial obstructions later. I had to threaten a
law suit to get him to call in X-ray, then he acted like he was the one who suspected a bowel obstruction to begin
with, big jack-ass!
This went on for about 7 yrs when finally my surgeon saw a stricture on the CAT scan.....he diagnosed my Crohn's
and put me on my first meds. What a wonderful relief! I had probably been in and out of the hospital 40 or 50
times and had probably 35 partial bowel obstructions. I then had a resection of my small bowel. Life has not been
great, but it is better when you have a Dx, meds and people who know what they're dealing with!
That's how it happened for me.
~~~
Emma, 10 Ulcerative Colitis dx at age 6
Story submitted by Emma's Mom
Emma was 6-1/2 when she was diagnosed. Spent 11 days in the hospital then. Started on steroids (which she
remained on for 9 months) and Asacol and Prevacid. Then stopped Asacol and started Pentasa. After 6 months of
being diagnosed she was put on 6 MP (dose varied from 25-37.5-50 depending). Stopped Pentasa and started
Colazol.
She started remission after about 10 months of being diagnosed and stayed in remission for 1 year. During this
time she was on 6MP 50mg, Colazol 750mg 3 times a day (I think) and Prevacid.
Then in August of 2005 (at this time she had UC for 22 months) she started flaring just a little bit. She would flare
and we would treat it with Canasa rectal suppositories and sometimes Cipro or Flagyl. Then she would be okay
for a month or so and then bleed again. We did this until about June 2006. Then she started getting worse and by
July she was having nausea, vomiting, decreased appetite along with flaring (for her it was lots of blood, BM's
about 5-10 a day at the time). At that time she was on a LOT of meds - Colazol, 6 MP, Prevacid, Flagyl, Alinia and
Canasa supp. We stopped all of it except Alinia I think, 6MP and started back on steroids. By August she was really
bad, never left the house, tons of blood and going 20-30 times a day. Explosively! This is when she started waking
at night to poop too. We were going to try IV steroids at home by the nurse couldn't get a line started so we aborted
that thought. We then put her on Remicade. We had to d/c the 6MP since she was starting Remicade so we did
that. She seemed to improve after Remicade with her BM's decreasing to 5-6 a day I think.
But within a week or so she was right back where she started. We tried Remicade 3 mores times (last one was
November 2006) with the last dose being at max 10mg. It never seemed to work after the 1st one. So then we tried
injectable methotrexate once a week. I'm not too sure if it did much. We tried this for 12 weeks or so. At the same
time we tried a spice called curcumin at 2 gm a day. I do think this helped a bit. But she still all this time was
pooping at least 10 times a day, super bloody, having accidents and waking at night running to the bathroom.
By January she had quit eating and had lost 20 pounds within weeks. She was depressed and in pain. She was
hospitalized the end of January and given a colonoscopy. (Oh, BTW, she had a colonoscopy in August which
showed just the last 15cm of the rectum was involved). This colonoscopy showed pancolitis everywhere even back
washing into the TI. The doc said we had run out of options and it was time for surgery. She was in the hospital for
4 days on IV steroids and IV fluids.
Emma freaked out and we all were quite upset. We made the decision to take her home instead of rushing into
surgery. We had to prepare Emma (and my husband!) for this big decision. We stayed home for 10 days. During
this time Emma was started on Prozac to help with the anxiety of surgery, she spoke with a psychologist and we
read about surgery. We also hooked up (through DragonPack) with a family with a 10 year old DD who had the
surgery. She was the one who really helped Emma decide to have surgery and come to terms with it.
On February 14th we admitted Emma back into the hospital. She was very anemic so she had a blood transfusion
(family members had donated the week before for her). Th next morning she went into surgery. She was very weak
and sick. By this time her liver was affected and she was still anemic and her platelets were sky high. This made
surgery very dangerous. After less than 3 hours the surgeon came out to tell us she was very sick and that he
couldn't complete the surgery. We had planned on doing a two-step surgery where she would only have tha bag for
less than 2 months.
She recovered pretty good. Had some problems with eating & vomiting in the following days but by day 8 she got to
come home. Actual pain from surgery was very minimal. Her intestines were swollen from surgery so digesting
food caused some cramping.
She is off all meds except Prozac now. She feels great, has a great body image and loves having a bag! She cares
for it herself even! She now can have sleep overs and go places with friends. Oh we also did different diets too that
never worked.
She has 2 more surgeries but she will be healthy for these so we are ready. Surgery has been such a blessing.
Everyone that has had it agrees.
Story submitted by Emma's Mom
Emma was 6-1/2 when she was diagnosed. Spent 11 days in the hospital then. Started on steroids (which she
remained on for 9 months) and Asacol and Prevacid. Then stopped Asacol and started Pentasa. After 6 months of
being diagnosed she was put on 6 MP (dose varied from 25-37.5-50 depending). Stopped Pentasa and started
Colazol.
She started remission after about 10 months of being diagnosed and stayed in remission for 1 year. During this
time she was on 6MP 50mg, Colazol 750mg 3 times a day (I think) and Prevacid.
Then in August of 2005 (at this time she had UC for 22 months) she started flaring just a little bit. She would flare
and we would treat it with Canasa rectal suppositories and sometimes Cipro or Flagyl. Then she would be okay
for a month or so and then bleed again. We did this until about June 2006. Then she started getting worse and by
July she was having nausea, vomiting, decreased appetite along with flaring (for her it was lots of blood, BM's
about 5-10 a day at the time). At that time she was on a LOT of meds - Colazol, 6 MP, Prevacid, Flagyl, Alinia and
Canasa supp. We stopped all of it except Alinia I think, 6MP and started back on steroids. By August she was really
bad, never left the house, tons of blood and going 20-30 times a day. Explosively! This is when she started waking
at night to poop too. We were going to try IV steroids at home by the nurse couldn't get a line started so we aborted
that thought. We then put her on Remicade. We had to d/c the 6MP since she was starting Remicade so we did
that. She seemed to improve after Remicade with her BM's decreasing to 5-6 a day I think.
But within a week or so she was right back where she started. We tried Remicade 3 mores times (last one was
November 2006) with the last dose being at max 10mg. It never seemed to work after the 1st one. So then we tried
injectable methotrexate once a week. I'm not too sure if it did much. We tried this for 12 weeks or so. At the same
time we tried a spice called curcumin at 2 gm a day. I do think this helped a bit. But she still all this time was
pooping at least 10 times a day, super bloody, having accidents and waking at night running to the bathroom.
By January she had quit eating and had lost 20 pounds within weeks. She was depressed and in pain. She was
hospitalized the end of January and given a colonoscopy. (Oh, BTW, she had a colonoscopy in August which
showed just the last 15cm of the rectum was involved). This colonoscopy showed pancolitis everywhere even back
washing into the TI. The doc said we had run out of options and it was time for surgery. She was in the hospital for
4 days on IV steroids and IV fluids.
Emma freaked out and we all were quite upset. We made the decision to take her home instead of rushing into
surgery. We had to prepare Emma (and my husband!) for this big decision. We stayed home for 10 days. During
this time Emma was started on Prozac to help with the anxiety of surgery, she spoke with a psychologist and we
read about surgery. We also hooked up (through DragonPack) with a family with a 10 year old DD who had the
surgery. She was the one who really helped Emma decide to have surgery and come to terms with it.
On February 14th we admitted Emma back into the hospital. She was very anemic so she had a blood transfusion
(family members had donated the week before for her). Th next morning she went into surgery. She was very weak
and sick. By this time her liver was affected and she was still anemic and her platelets were sky high. This made
surgery very dangerous. After less than 3 hours the surgeon came out to tell us she was very sick and that he
couldn't complete the surgery. We had planned on doing a two-step surgery where she would only have tha bag for
less than 2 months.
She recovered pretty good. Had some problems with eating & vomiting in the following days but by day 8 she got to
come home. Actual pain from surgery was very minimal. Her intestines were swollen from surgery so digesting
food caused some cramping.
She is off all meds except Prozac now. She feels great, has a great body image and loves having a bag! She cares
for it herself even! She now can have sleep overs and go places with friends. Oh we also did different diets too that
never worked.
She has 2 more surgeries but she will be healthy for these so we are ready. Surgery has been such a blessing.
Everyone that has had it agrees.
~~~
~~~
Mark Ulcerative Colitis
Dear All, My story I'll keep as brief as possible.I'm in my 40's ordinarily extremely healthy & seldom sick in 25years
working I've had about two weeks off sick. Last September i was having a long weekends holiday off work,
working on the home and my back was hurting very badly, in fact in the end so badly i could barely move, the pain
was difficult to say the least Id been ill for a while several months typically for a male, not talking about blood and
strange explosive bowel movements some with blood some with mucus: some with both.
Following months of problems and a delay seeing a specialist because the doctors mixed my address and data
base info up, out of desperation we booked a consultation with a private specialist, two days later and much pain
and weight loss experienced, the consultant said hospital now this morning your very ill, and had been for some
time its funny but as he said those words i thought games`up you are ill ( this is no game ) 8 days in which i was
told your looking down the barrel of surgery & it was most likely ,ended up with no surgery and although i have to
take tablets every day ill accept that, the knife is not for me
My horror at realising i was actually very ill (and for some time) the weight loss was awful i lay awake at night
drifting into and out of sleep sweating constantly going to the toilet 20 times a day, was there no magic pill? Surely
i will awaken and the birds will sing and i can go home recovered just an injection maybe or a course of special
pills, the nurses so nice and help full will find a cure a little something anything
I have a job, work to do, my dog to walk, my weekend cottage to finish and a motorcycle to ride in the late summer,
the answer as we now know is regrettably no magic pills or potions.
But i wont give up trying to live normally UC is a weakener but not a show stopper. I'm determined to enjoy life
walk my Labrador, drink beer eat bar b que food and now my strength is back ride my fireblade
Recently a work colleague asked are you still ill, i responded without thinking no I'm not ill any more i just have to
take some tablets every day. I have experimented with all food stuffs, beers OK, hard alcohol not good, rice & fish,
lean red meats fine, fast foods not so good, best of all fresh fruits as mid day nibbles seems to be of great benefit.
Kind regards to all Mark.
Dear All, My story I'll keep as brief as possible.I'm in my 40's ordinarily extremely healthy & seldom sick in 25years
working I've had about two weeks off sick. Last September i was having a long weekends holiday off work,
working on the home and my back was hurting very badly, in fact in the end so badly i could barely move, the pain
was difficult to say the least Id been ill for a while several months typically for a male, not talking about blood and
strange explosive bowel movements some with blood some with mucus: some with both.
Following months of problems and a delay seeing a specialist because the doctors mixed my address and data
base info up, out of desperation we booked a consultation with a private specialist, two days later and much pain
and weight loss experienced, the consultant said hospital now this morning your very ill, and had been for some
time its funny but as he said those words i thought games`up you are ill ( this is no game ) 8 days in which i was
told your looking down the barrel of surgery & it was most likely ,ended up with no surgery and although i have to
take tablets every day ill accept that, the knife is not for me
My horror at realising i was actually very ill (and for some time) the weight loss was awful i lay awake at night
drifting into and out of sleep sweating constantly going to the toilet 20 times a day, was there no magic pill? Surely
i will awaken and the birds will sing and i can go home recovered just an injection maybe or a course of special
pills, the nurses so nice and help full will find a cure a little something anything
I have a job, work to do, my dog to walk, my weekend cottage to finish and a motorcycle to ride in the late summer,
the answer as we now know is regrettably no magic pills or potions.
But i wont give up trying to live normally UC is a weakener but not a show stopper. I'm determined to enjoy life
walk my Labrador, drink beer eat bar b que food and now my strength is back ride my fireblade
Recently a work colleague asked are you still ill, i responded without thinking no I'm not ill any more i just have to
take some tablets every day. I have experimented with all food stuffs, beers OK, hard alcohol not good, rice & fish,
lean red meats fine, fast foods not so good, best of all fresh fruits as mid day nibbles seems to be of great benefit.
Kind regards to all Mark.
Mark Ulcerative Colitis
In the fall of 1991, I became very sick. All my family and friends became very worried. I went to the hospital-emg.
room 5 times. All they could tell me was, "I had a virus. This went on for 3 months. My eyes were all red and I
couldn't walk by my self. The cramps were so bad, I some times couldn't' breath. I couldn't eat or drink anything.
Water would not even stay down. I was very dehydrated, and starved. And all this time, no one knew what was
wrong with me.
Well, after about 3 months, I began to loose the fight. I am half Sioux (American Indian), all that seemed to keep
me going, was hearing my sister say, "Mark, you're a brave little Indian." But when the pain got too much for me, I
could hear my self say, "let go and the pain will be over."
After loosing my fight, I was sitting in my easy chair when I saw what to this day, I can't forget. On the other side of
the room, I saw something coming down very slowly. When I could make out what it was, the room I was in was
gone. It was as if I was in nothing. The angle I saw was three times as tall as me. I felt no pain at all. I felt love
more then words could ever say. It was as if I won a school ball game and every one loved me. Behind the angle,
I saw a light. It looked miles away, but I wanted to go into it. I thought the angle was going to take me there, but
it did not. It was talking to me and its mouth didn't move. I understood every word.
It said, "go back! You need to go back! It's not your time! Your work is not finished yet!" Then, I felt a strong since
of sadness. Then the room came back and I felt the pain again.My family came over to take me to another Dr..
That's when I found out I had "ulcerative colitis".
I was put on meds.and within two weeks, I could walk again. I cuuld eat again too. The cramps still hurt and I still
bleed some timed, But I'm happy to be alive!! Every day, I try not to feel sorry for my self, and thank God that I can
see another sun rise. It's a new blessing every day that I can see another sunset as well.
Well, It been 16 years now. Mom and Dad are gone and I think my work still isn't finished!!
But I'm happy to be alive!!
In the fall of 1991, I became very sick. All my family and friends became very worried. I went to the hospital-emg.
room 5 times. All they could tell me was, "I had a virus. This went on for 3 months. My eyes were all red and I
couldn't walk by my self. The cramps were so bad, I some times couldn't' breath. I couldn't eat or drink anything.
Water would not even stay down. I was very dehydrated, and starved. And all this time, no one knew what was
wrong with me.
Well, after about 3 months, I began to loose the fight. I am half Sioux (American Indian), all that seemed to keep
me going, was hearing my sister say, "Mark, you're a brave little Indian." But when the pain got too much for me, I
could hear my self say, "let go and the pain will be over."
After loosing my fight, I was sitting in my easy chair when I saw what to this day, I can't forget. On the other side of
the room, I saw something coming down very slowly. When I could make out what it was, the room I was in was
gone. It was as if I was in nothing. The angle I saw was three times as tall as me. I felt no pain at all. I felt love
more then words could ever say. It was as if I won a school ball game and every one loved me. Behind the angle,
I saw a light. It looked miles away, but I wanted to go into it. I thought the angle was going to take me there, but
it did not. It was talking to me and its mouth didn't move. I understood every word.
It said, "go back! You need to go back! It's not your time! Your work is not finished yet!" Then, I felt a strong since
of sadness. Then the room came back and I felt the pain again.My family came over to take me to another Dr..
That's when I found out I had "ulcerative colitis".
I was put on meds.and within two weeks, I could walk again. I cuuld eat again too. The cramps still hurt and I still
bleed some timed, But I'm happy to be alive!! Every day, I try not to feel sorry for my self, and thank God that I can
see another sun rise. It's a new blessing every day that I can see another sunset as well.
Well, It been 16 years now. Mom and Dad are gone and I think my work still isn't finished!!
But I'm happy to be alive!!
~~~
Nita, 46 Crohn's Disease for 27 years
I was 19 years old and was sitting in my living room folding my 2 month old baby girl's clothes when I stood up to
put them away and I felt this small cramp in my stomach, I remember wondering to myself, " what was that?" and
it passed in a few seconds and I put the clothes away. Soon after that I got the flu, ( so I thought!) and I started
throwing up and had bad diarrhea. That went on for a few days and I got a little better but my stomach was
cramping and the poos wouldn't go away.
I thought no big deal, I'll be fine, then one evening my husband and I were going to go out to dinner, I really didn't
feel like it because I was so tired but I would go, I went and got my dress clothes out and put my new dress pants
on and went to look in the mirror and they fell off of me! I was shocked, I didn't realize how much weight I had lost.
That was just the beginning. I started having these bad pains that felt like hard labor and the weight flew off of me.
I was so tired when I got up in the morning that I would pray for night to hurry up and come so I could go back to
bed, but I kept pushing myself to keep going. I had a new born baby to care for.
Then one day my Mother and I went shopping and right in the middle of the store I started having these pains
again. I would turn white and I just sat down in the middle of the store floor until the pain finally passed. My
Mother started insisting that I see a doctor. I tried to ignore what was wrong with me because I was afraid I had
cancer and didn't want to face it. My Mom got me in to see a doctor and he ran test after test but found nothing. So
in a few weeks I went to another doctor, same thing, test after test but he found nothing. I was about to give up
and just die, no one could find out what was wrong. I continued with the poos and pain that was so bad it doubled
me over and I would just freeze because it hurt to bad to move and God help you if you tried to touch me as that
made it hurt worse too.
Every time I would try to eat I would throw up. I would be so hungry but as soon as I smelled it, bam, throw up time
and potty time . One afternoon weighing now only 90 pounds ( I am 5' 7") my Mom came over to care for me. I
walked to my living room from my bedroom and couldn't make it any farther, my mom picked me up and carried
me to her car and took me to her house and called the AMA for a specialist. She found one that would take me
right away. She took me and he ran 1, yes 1, test ( small bowel series) and told me I had Crohn's disease. I was
ecstatic!!!! Finally someone found what was wrong, now I can be treated.
He told me that another month and I would have been dead. He put me on prednisone and azulfadine and in
weeks I was feeling much better, thank God! I went on this way for years and had small flare ups but nothing like
it was. Then when I got divorced. I couldn't afford my medicine and started to get bad again, the pain and poos
and throwing up started all over. I had already met my now husband and he asked me to marry him and we did,
but only 6 months after the wedding I got really bad and I kept ignoring it. One morning I woke up to get the kids off
to school and I could barely make it out of bed. I told my daughter Emily to call her dad( my Hubby) and she did
and he rushed me to the hospital.
I had a blockage and had it for about a month. The doctor told my husband that if I had any family that he had
better get them here because he didn't think I was going to make it through the night. Me hearing this, I thought
BULL! I have kids! They put me on 300 mg of prednisone a day and I got better. A few months later I decided to
get the flu shot, within a week after I was in pain, my stomach swelled up immensely, and I couldn't eat and was
throwing up. Okay, I got the flu from the shot I thought!! WRONG!!!! The poos hit and after about a week it went
away, then 2 weeks later the same thing happened. A week later I was fine, then 3 weeks later again, then I was
fine. I went to my doctor and he said I was having a bad reaction to the flu shot, (okay, ) and that I would have to
wait til it was out of my system.
A year later, I was bed ridden, pain so bad I could hardly breath. My stomach so swollen I thought it was going to
burst, I would throw up constantly. My kids would take turns staying home from school to care for me, I looked like
a living skeleton. I was as white as a ghost and so skinny, I probably weighed about 85 pounds, then I would get
better for a week and then I was bed ridden for 2 weeks again. This went on for almost year. I missed out on so
much because the doc thought I had a bad reaction and stupid me thought the same, it never occurred to me that
it wasn't. Especially after almost 2 years!!!! But it wasn't the same as when I first got Crohn's, the symptoms were
different this time so I didn't think it was my disease.
The suffering I went through was unreal. I would just lie in bed in such bad pain, my husband would sit by the bed
and try to help me but I was dying . Finally, one day I was lying in bed in so much pain, my stomach was so
swollen that I looked pregnant. I remember laying there thinking that it would be so easy to give up, give in to the
pain and end it all. I new if I did that I would die right there right at that time, and I almost gave in. Then I heard my
kids in the living room and I couldn't do it. My husband came home from work and he took me to the hospital and
my doctor met me there. He looked at me and told me that my stomach was swollen because my intestines were
getting ready to burst, ALL THIS TIME I suffered like that. They took me in for surgery and I was the happiest patient
I think they ever saw, I couldn't wait to get that stuff cut out of me, if it only lasted a week it was a week without pain.
That was 12 years ago and I am in perfect health!!! I have been in remission ever since. I gained a lot of weight but
I don't care, I am healthy!!!!! No pain, no pills or meds no nothing!!!!
I left out a lot of details mainly because it would be a five page letter if I told everything, but at the time I was
diagnosed Crohn's was considered rare. There was only 3 medications to treat with and if none of them worked,
you died!!! It has come a long way since then. I will never forget my husband, kids and my Mother how they would
sit by my bed and care for me. I never gave up. I came close but I didn't give up. With a positive attitude you can
over come anything!!! It is one of the most embarrassing disease to have, you never know when the poos will hit
and its always when your not at home. I pooped myself so many times and I felt just humiliated but all in all, you
can beat it. I always tried to keep the attitude of, I have Crohn's, it doesn't have me! The struggle just to walk from
one room of the house to another was awful, it would just wear me out to walk 15 feet. Now I throw a thousand
bales of hay during hay season in a day and not be as pooped out as I was then. Faith, love and a lot of prayers,
never ever give up!
I was 19 years old and was sitting in my living room folding my 2 month old baby girl's clothes when I stood up to
put them away and I felt this small cramp in my stomach, I remember wondering to myself, " what was that?" and
it passed in a few seconds and I put the clothes away. Soon after that I got the flu, ( so I thought!) and I started
throwing up and had bad diarrhea. That went on for a few days and I got a little better but my stomach was
cramping and the poos wouldn't go away.
I thought no big deal, I'll be fine, then one evening my husband and I were going to go out to dinner, I really didn't
feel like it because I was so tired but I would go, I went and got my dress clothes out and put my new dress pants
on and went to look in the mirror and they fell off of me! I was shocked, I didn't realize how much weight I had lost.
That was just the beginning. I started having these bad pains that felt like hard labor and the weight flew off of me.
I was so tired when I got up in the morning that I would pray for night to hurry up and come so I could go back to
bed, but I kept pushing myself to keep going. I had a new born baby to care for.
Then one day my Mother and I went shopping and right in the middle of the store I started having these pains
again. I would turn white and I just sat down in the middle of the store floor until the pain finally passed. My
Mother started insisting that I see a doctor. I tried to ignore what was wrong with me because I was afraid I had
cancer and didn't want to face it. My Mom got me in to see a doctor and he ran test after test but found nothing. So
in a few weeks I went to another doctor, same thing, test after test but he found nothing. I was about to give up
and just die, no one could find out what was wrong. I continued with the poos and pain that was so bad it doubled
me over and I would just freeze because it hurt to bad to move and God help you if you tried to touch me as that
made it hurt worse too.
Every time I would try to eat I would throw up. I would be so hungry but as soon as I smelled it, bam, throw up time
and potty time . One afternoon weighing now only 90 pounds ( I am 5' 7") my Mom came over to care for me. I
walked to my living room from my bedroom and couldn't make it any farther, my mom picked me up and carried
me to her car and took me to her house and called the AMA for a specialist. She found one that would take me
right away. She took me and he ran 1, yes 1, test ( small bowel series) and told me I had Crohn's disease. I was
ecstatic!!!! Finally someone found what was wrong, now I can be treated.
He told me that another month and I would have been dead. He put me on prednisone and azulfadine and in
weeks I was feeling much better, thank God! I went on this way for years and had small flare ups but nothing like
it was. Then when I got divorced. I couldn't afford my medicine and started to get bad again, the pain and poos
and throwing up started all over. I had already met my now husband and he asked me to marry him and we did,
but only 6 months after the wedding I got really bad and I kept ignoring it. One morning I woke up to get the kids off
to school and I could barely make it out of bed. I told my daughter Emily to call her dad( my Hubby) and she did
and he rushed me to the hospital.
I had a blockage and had it for about a month. The doctor told my husband that if I had any family that he had
better get them here because he didn't think I was going to make it through the night. Me hearing this, I thought
BULL! I have kids! They put me on 300 mg of prednisone a day and I got better. A few months later I decided to
get the flu shot, within a week after I was in pain, my stomach swelled up immensely, and I couldn't eat and was
throwing up. Okay, I got the flu from the shot I thought!! WRONG!!!! The poos hit and after about a week it went
away, then 2 weeks later the same thing happened. A week later I was fine, then 3 weeks later again, then I was
fine. I went to my doctor and he said I was having a bad reaction to the flu shot, (okay, ) and that I would have to
wait til it was out of my system.
A year later, I was bed ridden, pain so bad I could hardly breath. My stomach so swollen I thought it was going to
burst, I would throw up constantly. My kids would take turns staying home from school to care for me, I looked like
a living skeleton. I was as white as a ghost and so skinny, I probably weighed about 85 pounds, then I would get
better for a week and then I was bed ridden for 2 weeks again. This went on for almost year. I missed out on so
much because the doc thought I had a bad reaction and stupid me thought the same, it never occurred to me that
it wasn't. Especially after almost 2 years!!!! But it wasn't the same as when I first got Crohn's, the symptoms were
different this time so I didn't think it was my disease.
The suffering I went through was unreal. I would just lie in bed in such bad pain, my husband would sit by the bed
and try to help me but I was dying . Finally, one day I was lying in bed in so much pain, my stomach was so
swollen that I looked pregnant. I remember laying there thinking that it would be so easy to give up, give in to the
pain and end it all. I new if I did that I would die right there right at that time, and I almost gave in. Then I heard my
kids in the living room and I couldn't do it. My husband came home from work and he took me to the hospital and
my doctor met me there. He looked at me and told me that my stomach was swollen because my intestines were
getting ready to burst, ALL THIS TIME I suffered like that. They took me in for surgery and I was the happiest patient
I think they ever saw, I couldn't wait to get that stuff cut out of me, if it only lasted a week it was a week without pain.
That was 12 years ago and I am in perfect health!!! I have been in remission ever since. I gained a lot of weight but
I don't care, I am healthy!!!!! No pain, no pills or meds no nothing!!!!
I left out a lot of details mainly because it would be a five page letter if I told everything, but at the time I was
diagnosed Crohn's was considered rare. There was only 3 medications to treat with and if none of them worked,
you died!!! It has come a long way since then. I will never forget my husband, kids and my Mother how they would
sit by my bed and care for me. I never gave up. I came close but I didn't give up. With a positive attitude you can
over come anything!!! It is one of the most embarrassing disease to have, you never know when the poos will hit
and its always when your not at home. I pooped myself so many times and I felt just humiliated but all in all, you
can beat it. I always tried to keep the attitude of, I have Crohn's, it doesn't have me! The struggle just to walk from
one room of the house to another was awful, it would just wear me out to walk 15 feet. Now I throw a thousand
bales of hay during hay season in a day and not be as pooped out as I was then. Faith, love and a lot of prayers,
never ever give up!
~~~
IBDLiving
Merchandise:
Merchandise:
Nichola, 38 Crohn's Disease since age 17
Hello, my name is Nichola Hamilton and I am originally from Invercargill, Southland ,New Zealand. I have lived on
the Goldcoast Australia since 1989.
I kept very good health up until the age of 17 years and I loved Hockey, Horse-riding and working in a pharmacy. All
of a sudden I became very ill, very quick. I started vomiting, diarrhea, loss of weight and the doctor thought I had a
virus. My weight dropped to 48 kilos and I am 173cm tall so a big weight loss. At the time I was to be bridesmaid
for my sister on the Goldcoast and just managed to get over for the wedding, however very weak. When I returned, I
was straight to hospital and tests were performed and found out I had Crohn's Disease. I was treated with
prednisone and salazopyrin and it managed to settle.
My Mum was in hospital too and she was diagnosed with cancer and only lived a few months. Mum was 58 and a
terrible time for the whole family. I really had no idea how Crohn's would affect my life and just boxed on.
I kept well until 1992 and medication stopped working and I needed a temporary ileostomy, the operation went well,
however I had complications with bowel obstruction and infection. I was very very ill and blessed to be here. Over a
few months with antibiotics all settled. Six months later I was reversed so tummy back to normal, in early twenties,
I like the idea.
I kept well until 1995 then my disease had travelled to the rectum and I needed a permanent ileostomy, I was in
severe pain, bleeding, and house bound. No control over the rectum and very glad to have the bag back. At this
stage I had the large bowel removed and part of the small and rectum. 280Cm left of small bowel. During the years
I was in and out of jobs and relationships and this was very trying at times.
In the Oct 1999, my dreams were shattered and I needed a total hysterectomy, as my gynecological parts had been
affected. I had the operation and I was very unfortunate that I ended up with a csf leak in the brain from an accident
from an epidural. I came out with terrible head pain and a huge adjustment in life as was in agony every day. I now
have cranial osteopath treatment and conventional, a balance in both I believe in.
Since then I have had multiple operations on my stoma and moved from one side to another as retraction
problems for years. I have now endured 15 operations over twenty years. Two years ago I was diagnosed with SVT
of the heart and have to be very careful as recently had two small heart attacks after a virus. The beat goes out
easily.
Due to suffering depression I decided to sit and write a book to share my journey in life with fellow Crohn's Disease
sufferers and just published in June this year, a dream come true. At present I am studying to be a Professional
Counsellor and looking forward to graduating next year. In the book I share my journey with Crohn's over twenty
years and how I dealt with the adversity of living with Crohn's. I would love to share my story with any other fellow
Crohn's sufferers or families.My motto is to take each day as it comes and always look for the sun. My website is
www.climbingtheladderoflife.com
love and light Nichola
Hello, my name is Nichola Hamilton and I am originally from Invercargill, Southland ,New Zealand. I have lived on
the Goldcoast Australia since 1989.
I kept very good health up until the age of 17 years and I loved Hockey, Horse-riding and working in a pharmacy. All
of a sudden I became very ill, very quick. I started vomiting, diarrhea, loss of weight and the doctor thought I had a
virus. My weight dropped to 48 kilos and I am 173cm tall so a big weight loss. At the time I was to be bridesmaid
for my sister on the Goldcoast and just managed to get over for the wedding, however very weak. When I returned, I
was straight to hospital and tests were performed and found out I had Crohn's Disease. I was treated with
prednisone and salazopyrin and it managed to settle.
My Mum was in hospital too and she was diagnosed with cancer and only lived a few months. Mum was 58 and a
terrible time for the whole family. I really had no idea how Crohn's would affect my life and just boxed on.
I kept well until 1992 and medication stopped working and I needed a temporary ileostomy, the operation went well,
however I had complications with bowel obstruction and infection. I was very very ill and blessed to be here. Over a
few months with antibiotics all settled. Six months later I was reversed so tummy back to normal, in early twenties,
I like the idea.
I kept well until 1995 then my disease had travelled to the rectum and I needed a permanent ileostomy, I was in
severe pain, bleeding, and house bound. No control over the rectum and very glad to have the bag back. At this
stage I had the large bowel removed and part of the small and rectum. 280Cm left of small bowel. During the years
I was in and out of jobs and relationships and this was very trying at times.
In the Oct 1999, my dreams were shattered and I needed a total hysterectomy, as my gynecological parts had been
affected. I had the operation and I was very unfortunate that I ended up with a csf leak in the brain from an accident
from an epidural. I came out with terrible head pain and a huge adjustment in life as was in agony every day. I now
have cranial osteopath treatment and conventional, a balance in both I believe in.
Since then I have had multiple operations on my stoma and moved from one side to another as retraction
problems for years. I have now endured 15 operations over twenty years. Two years ago I was diagnosed with SVT
of the heart and have to be very careful as recently had two small heart attacks after a virus. The beat goes out
easily.
Due to suffering depression I decided to sit and write a book to share my journey in life with fellow Crohn's Disease
sufferers and just published in June this year, a dream come true. At present I am studying to be a Professional
Counsellor and looking forward to graduating next year. In the book I share my journey with Crohn's over twenty
years and how I dealt with the adversity of living with Crohn's. I would love to share my story with any other fellow
Crohn's sufferers or families.My motto is to take each day as it comes and always look for the sun. My website is
www.climbingtheladderoflife.com
love and light Nichola
~~~
Cathy Crohn's Disease Dx April 2007
When I was younger (like around 12) I had some slight pains in my abdomen and something that would feel like
movement all the time. I was given a few tests and my mother told me they had captured a piece of my intestines
spasming. Then to the best of my memory it went away and everything went smashingly for the next 10 years or
so.
So fast forward to 6 months after my baby boy is born and we are in 2001. I drink a glass of milk and notice that
within half an hour i have the worst pains and gas ever. I quickly learn i can no longer tolerate milk and attribute it
to having a baby. Everyone always says your body changes after you have a baby anyway so it was a good excuse.
Then about a month later I had a horrible episode of some sort of bowel evacuation! I must have went 30 times
and had the sorest butt around for days!! I attributed it to not eating properly. I promised myself I would eat better
and I did try.
A year later I had my first "flare up". I had been having some strange pains like i had to go to the bathroom, but i
didnt. They just kept getting worse and worse to the point where i couldn't walk and then after a few hours they
subsided; which is when i make the biggest mistake ever. I ate a hot pocket! A cheeseburger hot-pocket and ten
minutes later i was in severe pain. My husband said he had had a bad feeling about me and came home to check
on me; i was curled up in a ball crying. He took me to the ER where they stupidly said they could find nothing
wrong besides some inflammation. They kept me overnight and when i still had diarrhea they said they wanted to
do exploratory surgery to see what the problem was. They took out my appendix and said i had some
inflammation and to see a gastro if i thought i had crohn's. Did i forget to mention my mom has crohn's and at this
point she started getting the hint i had it too.
I did see a gastro and right before i was supposed to have a colonoscopy i lost my health insurance. I never went
back.
So let's say about 3 years ago I started having really severe pains every time I ate. Silly me kept saying I probably
had really, really bad gas problems. They would stick around for a few weeks than go away sometimes for
months. Until December of 2006 when I began having painful flare episodes once every few months until it got so
bad one night i was up for 8 hours having what felt like labor pains and throwing up. I finally am seeing a dr now
and just got done with a round of the usual tests; colonoscopy, small bowel follow through, cat scans, xrays,
blood work etc etc. I was hospitalized in august of 2008 for a blocked bowel and am now on prednisone and
pentasa. I have recently found out i have strictures in my small bowel and am hoping that i can find a medicine
that will give me a good amount of remission without being on steroids some time soon. It is just amazing how
quickly it went from being a small problem to a very severe one and i suggest if you are reading this and are still in
the small pains and wondering what's going on phase you get to a dr ASAP before it gets out of hand.
When I was younger (like around 12) I had some slight pains in my abdomen and something that would feel like
movement all the time. I was given a few tests and my mother told me they had captured a piece of my intestines
spasming. Then to the best of my memory it went away and everything went smashingly for the next 10 years or
so.
So fast forward to 6 months after my baby boy is born and we are in 2001. I drink a glass of milk and notice that
within half an hour i have the worst pains and gas ever. I quickly learn i can no longer tolerate milk and attribute it
to having a baby. Everyone always says your body changes after you have a baby anyway so it was a good excuse.
Then about a month later I had a horrible episode of some sort of bowel evacuation! I must have went 30 times
and had the sorest butt around for days!! I attributed it to not eating properly. I promised myself I would eat better
and I did try.
A year later I had my first "flare up". I had been having some strange pains like i had to go to the bathroom, but i
didnt. They just kept getting worse and worse to the point where i couldn't walk and then after a few hours they
subsided; which is when i make the biggest mistake ever. I ate a hot pocket! A cheeseburger hot-pocket and ten
minutes later i was in severe pain. My husband said he had had a bad feeling about me and came home to check
on me; i was curled up in a ball crying. He took me to the ER where they stupidly said they could find nothing
wrong besides some inflammation. They kept me overnight and when i still had diarrhea they said they wanted to
do exploratory surgery to see what the problem was. They took out my appendix and said i had some
inflammation and to see a gastro if i thought i had crohn's. Did i forget to mention my mom has crohn's and at this
point she started getting the hint i had it too.
I did see a gastro and right before i was supposed to have a colonoscopy i lost my health insurance. I never went
back.
So let's say about 3 years ago I started having really severe pains every time I ate. Silly me kept saying I probably
had really, really bad gas problems. They would stick around for a few weeks than go away sometimes for
months. Until December of 2006 when I began having painful flare episodes once every few months until it got so
bad one night i was up for 8 hours having what felt like labor pains and throwing up. I finally am seeing a dr now
and just got done with a round of the usual tests; colonoscopy, small bowel follow through, cat scans, xrays,
blood work etc etc. I was hospitalized in august of 2008 for a blocked bowel and am now on prednisone and
pentasa. I have recently found out i have strictures in my small bowel and am hoping that i can find a medicine
that will give me a good amount of remission without being on steroids some time soon. It is just amazing how
quickly it went from being a small problem to a very severe one and i suggest if you are reading this and are still in
the small pains and wondering what's going on phase you get to a dr ASAP before it gets out of hand.
~~~
Marissa, 20 Crohn's Disease Dx April, 2005
Back in 2000 i was getting stomach pains and bloody constipated stool. My mother being in the medical field knew
something was wrong and took me to my pediatrician at the time since i was only in 7th grade. He then referred
me to a GI doctor. She did a colonoscopy and tested me for what i believe to have been IBD but they all came back
negative then i got tested for a milk allergy and that came back positive. So i would just back away from milk and all
my symptoms would disappear. Then the summer before my senior year of high school the bloody BM came back,
i backed away from milk like i normally did and no change. I then got referred back to the same GI and she started
doing more tests, she put me on medicines since she wasnt sure if it was UC or CD. She even guessed IBS at
one point cause there was very little physical sign of disease in my intestine. Within 10 months I went though 5
colonoscopies, a 5 day stay in the hospital for dehydration and malnourishment, 2 endoscopies, medicine after
medicine after medicine to try to find what would work, my doctor had to finally resort to Remicade since i wasn't
responding well to the other medicines from all there side effects. I also was a honor roll student with dreams of
going away to a 4 year university. When i was going though all of this in High school i got depressed because i
knew i wouldnt be able to go that far away from my doctor and i knew i needed to be near people who could take
me to my Remicade treatments and tests. Also in High school my school nurse threatened to hold me back
because she thought i was lying about being sick, i dropped from being number 18 in my class to number 50 in a
matter of months since, i missed over a month of school total and was just not concentrating in classes. I also had
to graduate high school with all the side effects of the prednisone, the weight gain, facial hair, etc. I was then able
to go into remission by February 2006 and have been in a mild form of remission since then. My life is now kind of
back to normal, I am now 20 years old and am finally realizing my dreams of going back to school, and living away
from home. I am about an hour from my home town and i get my 2 year degree in 18 months thanks to an
accelerated program i found. I still have to watch what i eat and pay attention day to day at how i feel but its a lot
better then feeling awful all the time and not being able to do things with friends.
Back in 2000 i was getting stomach pains and bloody constipated stool. My mother being in the medical field knew
something was wrong and took me to my pediatrician at the time since i was only in 7th grade. He then referred
me to a GI doctor. She did a colonoscopy and tested me for what i believe to have been IBD but they all came back
negative then i got tested for a milk allergy and that came back positive. So i would just back away from milk and all
my symptoms would disappear. Then the summer before my senior year of high school the bloody BM came back,
i backed away from milk like i normally did and no change. I then got referred back to the same GI and she started
doing more tests, she put me on medicines since she wasnt sure if it was UC or CD. She even guessed IBS at
one point cause there was very little physical sign of disease in my intestine. Within 10 months I went though 5
colonoscopies, a 5 day stay in the hospital for dehydration and malnourishment, 2 endoscopies, medicine after
medicine after medicine to try to find what would work, my doctor had to finally resort to Remicade since i wasn't
responding well to the other medicines from all there side effects. I also was a honor roll student with dreams of
going away to a 4 year university. When i was going though all of this in High school i got depressed because i
knew i wouldnt be able to go that far away from my doctor and i knew i needed to be near people who could take
me to my Remicade treatments and tests. Also in High school my school nurse threatened to hold me back
because she thought i was lying about being sick, i dropped from being number 18 in my class to number 50 in a
matter of months since, i missed over a month of school total and was just not concentrating in classes. I also had
to graduate high school with all the side effects of the prednisone, the weight gain, facial hair, etc. I was then able
to go into remission by February 2006 and have been in a mild form of remission since then. My life is now kind of
back to normal, I am now 20 years old and am finally realizing my dreams of going back to school, and living away
from home. I am about an hour from my home town and i get my 2 year degree in 18 months thanks to an
accelerated program i found. I still have to watch what i eat and pay attention day to day at how i feel but its a lot
better then feeling awful all the time and not being able to do things with friends.
~~~
| IBD Living©2007, All Rights Reserved. No Part of this website shall be copied or used without the expressed written consent from the owners of IBD Living. |
| Last Updated 1/30/2008 |
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| Take Steps with IBDLiving to find a cure for IBD. Click Here! |
~~~
Katy, 11 Ulcerative Colitis Dx February 2007
I was diagnosed with ulcerative colitis in February 2007 and am one of the youngest victims of UC. I was only 10
when i was diagnosed and have now learned to live with my disease and think i am special to have it. It was only
in October 2006 on holiday in Tunisia when i realised something was wrong. I kept having severe stomach
cramps and was loosing energy by the minute. When we got back my mum took me to the GP who put me on a
coarse of antibiotics and said i was going to be fine. I took it for to weeks but i then felt worse. We then went back
to the GP and finally they admitted me to our local hospital, Ealing.
Ealing hospital did not have doctors who specialised in gastroenterology and they thought i had salmonella and
kept me in a room on my own because they thought i was infectious. They put me on one iron tablet a day and a
week later they discharged me.
I stayed at home for a few weeks before a went back to school, i kept taking the iron but i knew they weren't doing
me any good. I went back to school for a few days but i couldn't take it any more. I told my parents and we went
back to the GP foe the third time. She finally admitted me to Chelsea and Westminster hospital and it was a bit far
from home but it was worth it. They gave me at least four blood transfusions and a dose of albumin. This was
helping but my energy was still poor and i still had stomach cramps. I had my first colonoscopy in February and
there was a long wait, I couldn't eat for two and a half days and was on a drip half the time. When it was finally
over the told me i had ulcerative colitis and it was a bit of a shock at first, so many questions i wanted to ask. I
was discharged in April 2007 with a lot of medicines, at least seventeen a day. I had to take eight steroids a day,
3 asacol, 2 calcium supplement and various other medicines. I was all well and better then, but a recent flare-up
in September 2007 because of stress came up and i went into hospital for four days, had another colonoscopy
and was put on 8 steroids a day again. Now in 2008 i hope not to have another flare-up for at least 2 years.
I was diagnosed with ulcerative colitis in February 2007 and am one of the youngest victims of UC. I was only 10
when i was diagnosed and have now learned to live with my disease and think i am special to have it. It was only
in October 2006 on holiday in Tunisia when i realised something was wrong. I kept having severe stomach
cramps and was loosing energy by the minute. When we got back my mum took me to the GP who put me on a
coarse of antibiotics and said i was going to be fine. I took it for to weeks but i then felt worse. We then went back
to the GP and finally they admitted me to our local hospital, Ealing.
Ealing hospital did not have doctors who specialised in gastroenterology and they thought i had salmonella and
kept me in a room on my own because they thought i was infectious. They put me on one iron tablet a day and a
week later they discharged me.
I stayed at home for a few weeks before a went back to school, i kept taking the iron but i knew they weren't doing
me any good. I went back to school for a few days but i couldn't take it any more. I told my parents and we went
back to the GP foe the third time. She finally admitted me to Chelsea and Westminster hospital and it was a bit far
from home but it was worth it. They gave me at least four blood transfusions and a dose of albumin. This was
helping but my energy was still poor and i still had stomach cramps. I had my first colonoscopy in February and
there was a long wait, I couldn't eat for two and a half days and was on a drip half the time. When it was finally
over the told me i had ulcerative colitis and it was a bit of a shock at first, so many questions i wanted to ask. I
was discharged in April 2007 with a lot of medicines, at least seventeen a day. I had to take eight steroids a day,
3 asacol, 2 calcium supplement and various other medicines. I was all well and better then, but a recent flare-up
in September 2007 because of stress came up and i went into hospital for four days, had another colonoscopy
and was put on 8 steroids a day again. Now in 2008 i hope not to have another flare-up for at least 2 years.