Coping WITH IBD
Coping with the Emotional Challenges of IBD
Some of the emotional challenges that are typical of those diagnosed with IBD are:
1. Self Esteem
2. Self Image
3. Depression
4. Anger
5. Grieving
6. Sense of loss that your life isn’t ever going to be the same
7. Feeling alone
8. Feeling different
9. Shame/Guilt
10. Embarrassment
(*Some of the items on this list were offered in Sherry Porat's presentation at the IBD conference on Nov. 3,2007)
We feel that the best way to explain how to deal with these challenges and others is to cover this page with the
personal explanations of others living with IBD. We will include our own challenges and how we cope them. If you
would like to add yours or if you would like a specific topic covered, please email us and we will add it! There is
also the ongoing discussion on the message board that covers this topic. Here is the link: http://ibdliving.
org/bulletin/viewtopic.php?t=1082
From Joey with Crohn’s Disease
1. Self Esteem, I have never really had a major problem with this particular issue but it does effect me from time to
time. It seems to be more of a problem when I feel very sick or i'm in alot of pain. I find that doing something I am
good at during these periods helps. If I can see for myself that I am still able to accomplish what I set out to do I
am still me. I am a guy it is hard for me to explain this. Lets say I feel real sick and weak, Normally most people
would want to hide away until the symptoms subside. This is when I push myself the most. One thing I try not to let
happen is to have my Crohn's stop me. I am not saying I go out and climb Everest but I will go to the park and take
a walk or go to the mall with my wife and shop or whatever. It is important for me to feel normal, without that I do
loose my sureness of myself.
2. Self image, This is one I do have a lot of trouble with. Most of my life I was in pretty decent shape. Not to say I
was ever a thin person but I was physically stronger and healthier. Since I was Diagnosed with Crohn's it is a
whole different story. I fight with my weight constantly now. Steroids and other meds I have taken and will probably
take again cause tons of weight gain. And with more weight I have a lower self image. Now I am a guy and it is
easier for me to deal with added pounds but it still sucks to have three different wardrobes in my closet. Healthy,
sick, and very sick. How do I deal with it? I do my best to eat healthy and exercise. Of course that isn't a perfect
answer but as long as I am trying to look good and I have done all I can it helps me deal with it. It doesn't hurt that
my wife likes a burly guy.
3 & 4. Depression and Anger, These are my biggest issues with IBD so I will answer them together, as they seem
to run together in my life. For me depression is a very big enemy. I have found myself extremely depressed both in
the past and at the present, and it usually coincides with my current health. The main problem is Along with my
depression comes a dark angry side of me I absolutely despise. I overreact and jump down peoples throats when
I am depressed. It seems to be a protective measure for me. I don't like people to worry about me and in the past I
would get others angry with me so they would leave me alone and I wouldn't have to show how I really feel. This is
not a good method of dealing with depression. More recently I am trying to get others involved. When I am feeling
down or sick I try to talk to my wife and friends to get that shoulder to lean on. So far this has been a dramtic
improvement for me.(Just ask my wife) As far as anger goes this is tough for me. I grew up in a family where men
didn't show much weakness. So it seems to be another defense mechanism for me. As I learn to deal with my
emotions I find it easier to control this side of me. (I try to take a step back from the situation and think about how
someone else would deal with it) Kind of look from the outside at what others see. It is working so far and
hopefully I will be able to do this without having to think so much about it.
5. Hopelessness, I don't really get a sense of hopelessness but I do feel very disappointed with things at times.
Like when I finally found the best Dr for me she decided to move 800miles away and I had to find a new Dr. Or
when a med causes a bad reaction. We bank alot of hope in the meds we take and when they fail it can really get
you scared or depressed. I try to take things in stride. I do lots of research on IBD so I know alot about the
medications out there and the others on the horizon. I also believe in fate and hope my path in life has a better
road up ahead. I try my best to keep my faith strong and believe God has smething planned for me and pray it
works out in the end.
6. Sense of loss. I was 25 when I was diagnosed and in a steady relationship with the woman I would later marry.
So for me my life was just getting started. The only thing IBD has done was change the direction not the
destination. Like I said earlier I do my best not to let it slow me down. Not to say it doesn't limit me but I find ways
to work around some of the problems they come along. I think the biggest issue for me is having the ability to use
a restroom when needed.(which can be very often) So I plan my trips and daily routines around this so I can strike
that worry off my list. I also do my best not to cancel plans I have made unless I am very sick and just don't have
the strength or willpower to do what was planned. But when you have understanding friends and family this issue
becomes alot easier to deal with. And if they can't then maybe talking to them to help them understand what is
going on will help. I belong to a Barbershop Chorus that does several shows a year and practices weekly. And not
once has this disease stopped my plans. Even if I felt poor.
7. Feeling Alone, I felt this when I was first diagnosed. I didn't know anyone with IBD. It isn't something most
people talk about in normal conversation so how would I know. And from what I can tell people that do suffer seem
to try and hide the fact they are sick. To me this is a silly move. It helps no one especially ourselves. This is were I
thank God and the Gov't for the World Wide Web. I did a search on crohn's and found a website chock full of people
that suffer from IBD. It was the first time after my diagnoses I felt like I was not alone. And as I have talked to others
that have IBD I realize there are alot of us out there. And the stories and experiences we share are probably the
best thing that ever happened to me. And as I learn more I do my best to help others with there issues due to IBD. I
get a very strong sense of well being helping others feel like a family and not a diseased person. This would also
relate to my self esteem.
8 & 9. Feeling Different or Shame, As far as I am concerned none of us should ever feel either of these. We aren't
different, if you saw me in a group of people you would never know I was sick. And I don't mean I hide how I feel, I
mean I don't look like some kind of diseased monster. I look just like everyone else. We shouldn't never feel
shame. IBD is not our fault. There is nothing we did that caused it and if you are looking at this you are trying to get
better. I see no shame in that.
10. Embarassment. I have heard other tell stories how they have had accidents in public places and how it makes
them sad or embarassed. And I have been there myself. One way I try to avoid something like that is to make sure
the places i go to have a public restroom and know how I feel that day. If I had to go to the bathroom 10 times
before lunch I know it is not the day to go to the park and walk around all afternoon. But when I do have my
moments of embarassment I try to make a joke and play it off or I excuse myself and leave the situation. I also try
to go places with someone else. Especially when shopping. I can't tell you how often I have to go to the bathroom
in the middle of food shopping and need to leave my cart stranded by itself. I would think this would be especially
helpful for IBDers with children. and If you do have an embarassing moment you have and allie in the situation.
Kind of like sharing the load so to speak.
Also from Joey with Crohn’s Disease
First In my humble opinion, Try to learn as much as you can about it would be first. It is amazing how little people
know about IBD in general.
Second, talk to your friends and family and help them understand what you are going through and how they can
help. This is hard to do but extremely important. When I first got sick my Wife (Girlfriend at the time) did not
understand why I would have to cancel plans or why I would be irritable one day and nice the next. The physical
and mental effects of this disease and the drugs we take for it wreak havoc on us. You guys know what I mean.
Third, Find a Dr you trust. I would say this should be first but if you do not know much about the disease you won't
know if you have a good Dr or not. If you can talk to your Dr and understand what they are saying to you or they
explain it so you understand it makes it much easier to wrap your mind around things like, New meds, exams and
procedures and even surgery.
Fourth, Support group(Either person to person or over the WWW)For me it was finding others that know what I am
going through that helped me really come to grips and start to feel somewhat normal again. When I was first
diagnosed I played the blame game. I thought it was my fault I was sick and so did my friends. I think that is the
main problem with IBD. They aren't even sure how it develops or if it is a bug, gene or ethnic trait. It isn't like other
autoimmune diseases, they all have a reason. Aids has casual encounters (Unprotected Sex), Sharing tainted
drug needles, and even blood transfusions by hospitals. There is a reason you get it. IBD sufferers aren't sure why
we have it.
Five, We have to realize that not everything we do is going to help. Sometimes the things that are working stop
working. Medications can stop helping or we can react poorly to them. This is very normal for IBD. I have run the
gamuts as far as meds go. From the antibiotics and 5-ASA meds all the way to experimental biologic medications.
I have had favorable effects from some, and I have also had life threatening reactions to others. This is the part
that is hardest for me to deal with. I have pretty much run out of medications. It can take a long time to find what
works for each person. Some are better off then others and God Bless them for that. but others have to try many
different combinations to find what works for them. We have to try and keep our head up during this period. We
have to discuss everything that is going on with our Dr's so they know what works and what doesn't. It isn't like a
bad cold where you take an antibiotic for ten days and suddenly you are better. Most of the meds we take are for
both remission and maintenance. They become a permanent fixture in our daily lives. Sorry a lot of reading in that
one.
Sixth, keep a diary. There are many different things the diary can do for used. The two main ones are for our Dr's
reference and for us. What do I mean? Well let’s say you keep a diary and you right down the meds you take, the
foods you eat along with how often you have to use the bathroom, when you get pain and the severity of it. As you
look at the diary you see you have more pain and go to the bathroom more often on Tuesday. So you read what you
eat on Monday night and see it is Pizza night on Monday every week. That may be a food you should avoid or limit. I
know I can't always remember what I ate the night before and without that reference I would have probably missed
it.
From Casey with Crohn’s Disease
Some things that help me when I am feeling down, depressed, or sick from IBD.....
Posting and talking with all of you every day , helping others with IBD, going to a CCFA support group meeting,
learning about IBD, talking on the phone with Amy
reading scripture, reading a devotion and praying
listening to uplifting music
using a heating pad, and pain meds, anti-nausea meds or anti-spasm meds
watching something funny, like Larry The Cable Guy, laughter is the best medicine for me , cracking jokes about
myself and IBD in general
doing something nice for myself, like getting a massage, going shopping if I am not too sick, getting my hair done,
buying new make-up
celebrating small steps, like graduating from clear liquids to full liquids, then to soft foods, lol!!!!!!
saying no to people asking me to do something that requires me to expell too much energy, and saving that
energy for my family and daily life, furthermore helping my stress level
yoga is great for me if I would get to doing it again, ugh
of course figuring out what foods and drinks hurt me and avoiding them
getting little things accomplished that make me feel better like. Doing a little housework, cleaning my desk off,
running a tiny errand, baking something, etc.
last but not least....counting my blessings, which are abundant , taking it day by day, and knowing that "this too will
pass".
From Baiba with Crohn’s Disease
The depression and anger I can definitely relate to. When I was first diagnosed, I was in denial of sorts; no, not
me, I can't have a chronic disease such as this. Then came the anger, not sure at who, maybe me, the doctors, the
world in general, God. Then came the depression. That one is the hardest to deal with and seems to be the one
that is taking the longest to go away, one day happy, one day sad.
The biggest one on this list, for me, however, is the feeling of loss. I feel like my old self is gone forever (and I
kinda liked her alot); that my old life is gone forever. That things wil never be like they were, that I will always be too
tired to laugh or too nauseated to eat the foods I love, or irritated beyond words from the medications we have to
take. This is the hardest pill to swallow (pun intended).
From Stacey with ulcerative colitis
Baiba, I can totally relate to how you feel. I've changed so many things from where I live, (when I was first
diagnosed I shared a bathroom with 4 other people, lol) to how I eat to where I go, to what seems like everything.
The denial and anger and frustration and right out desperation, the crying on the toilet, the crying myself to sleep,
oh man its been a rough road with this disease that is for sure.
And Casey I like a lot of your coping ideas too, I love getting my hair done or buying something nice and new
makes me feel pretty again ya know? =)
And Joey I totally relate to what you say about the medications. I've been through so many this past year. My
insurance just told me a few weeks ago I've reached my maximum for the year so they're refusing to pay for any
more of my drugs. (grr) The docs kept trying new things that just wouldn't work. It's been so frustrating. I'm still not
even sure what's working b/c I'm back on the prednisone again for the third time in a year. (double grr)
Here's my own lil response to amy's posted emotions:
How to cope/overcome by Stacey:
1. Self Esteem - tough one, i'm not even sure
2. Self Image - don't even worry about it when on the preddy....
3. Depression - Just remember it won't always be this bad....
4. Anger - Just let it out!!
5. Hopelessness - Watch a funny movie
6. Sense of loss that you life isnt ever going to be the same - Sense of gain in that you have a new life filled with a
goal to be healthy, better eating habits, and a deeper knowledge of, and a new relationship with your body
7. Feeling alone - IBDLIVING!
8. Feeling different - meh, who wants to be like everybody else anyway!
9. Shame - Hey, its a broken colon, not my fault.
10. Embarrassment - again, broken colon, just grin and bear it, don't let it get to u. face red, shoulders shrunken,
uh oh, can't find an empty bathroom... ah well. gotta do what ya gotta do.
I cope by talking about it, to as many people who will listen to me. For some reason this whole disease thing
makes more sense when I'm saying it out loud. When I let myself get caught up in my thoughts there's room for
thoughts like, 'why me' and stuff like that. But when I'm talking with my friends and family (and you guys!) for some
reason things start to make a little more sense.
At first I coped by searching all over for as much information as I could find. I searched the internet, I bought 3
books, I joined message boards, I hunted for people who understood on facebook, myspace, livejournal, ccfc, I
sent away for pamphlets, I went to a meeting for the ccfc, and I raised money and took part in the Heel n Wheel a
thon in June of last year.
For me having IBD is like being on a roller coaster and not knowing what the next turn is going to look like. Having
friends and family around who at least have an idea of what the ride looks like being there by my side gives me the
strength to get through the darkest days.
Most of all it's important for me to not let this disease make me feel embarrassed. I have funny words and terms
that I use at work or with my friends that shed a little light about what I'm going through, while still giving a little
wiggle room for people who are a wee bit sensitive to the technical terms. Like, uh oh! Bathroom time! And
everybody moves out of my way. lol
I'm determined to live my life as normally as I possibly can. It's hard sometimes for someone with IBD, but if you
can get over your fear of public bathrooms, port-a-potties, and the side of the road (lol) life becomes a little less
stressful.
Oh, did I mention that I also cope by carrying sanitizing wipes and hand sanitizer for those unfortunate port-o-potty
days? lol
One thing I loved about travelling through the US this past summer, rest stops! I wish we had them in Canada. Up
north they have rest-stops but they're glorified port-o-potties. In Southern Ontario, there's just food stops every so
often. It's rough.
From Jody with Crohn’s Disease
The only 2 things that come to my mind right now is 1. to become a part of this group or one like it. And 2. to involve
your family/friends in your treatment....let them go to doc appointments with you, etc. so that you develop your
support system. Also all should read the 100 Q and A book and share it with your support system.
Well, I guess I'm on a roll here. They should ask questions. I can only imagine what it must be like to be newly
Dx'ed and come here and read some of what we talk about! I think it might be confusing and scary if they hop into
the wrong thread. I don't know any way to protect them from that so they should know up front to ask about anything
that they don't understand or are concerned about.
Something that none of you have mentioned is a sense of being overwhelmed. For me, that is a biggy....it could be
partly age and the slowing down that comes with it.
Anyway, I look at my housekeeping...not nearly what it used to be. Cooking, who really wants to cook a meal when
they know they can't even think about eating it? Work, Dear Lord, I never knew a person could be as tired as I am
and still move. Joint pain...nuff said. I am sure there are others that I just don't have in mind at the moment.
When I let myself look at the big picture, I am so overwhelmed that I want to go to bed, assume the fetal position
and never move again. So I guess we need to include something about living in the moment so that it all doesn't
seem so big and overwhelming.
When I look at all of the things you have mentioned, I just think that they should know not to withdraw and isolate
themselves. I have been soooo guilty of that and still am at times.
I'm very honest with people. I flat tell them, I have crohn's. If they don't know what that is, I explain. This is what I live
with every day. If they are worth my time, they understand and give me my space. If not, I don't bother with them.
That is a luxury of age, you lose the drive to impress people...let them deal with it if they are too stupid or self
absorbed to at least try to understand.
From Joanna with Crohn’s Disease
Family, friends and forums.... I would be completely lost without this board!
Read as much as you can get your hands on, but at the same time remember alot of what you may read may not
effect you the same way. There are alot of scary stories, but you may never have to deal with those issues.
As for the accidents and feeling of urgency, i started packing around a bag with a depends, wipes, creams, a
change of clothes, etc. It gives me a sense of control and power if an uncontrollable situation arises.
I felt very alone until i found this site, it truly is my best life line, everyone can completely understand what i am
going thru, I can come on and whine, complain, or have a pity party and they lend me their 'ears' and support. I can
come on and tell them my fears, hopes and desires or I can come on and talk about my BM's without worrying
about offending anyone. My family is of course a great support but talking to others with IBD's is what truly helps.
The anger, hopelessness, sadness, and depression and the sense of loss that comes with this disease are the
next hardest and biggest hurdles besides the physical aspects. When I feel myself slipping into darkness, actually
i usually just find myself there all of a sudden, i have learned to try and find all the things i am thankful for. It is so
very hard sometimes, but i am thankful for family, friends, a roof over my head, clothes for my children, food on the
table, a smile from a child, a song from a bird, i try and find something good in everything around me. I also
remind myself that it could always be worse and there are others dealing with worse things that i am and that i can
get thru this. I also reach out to my IBD family, they are always here to help me out, give me suggestions or just
send hugs and prayers. I know later in the day or over the next few days or even weeks things will be better to
some degree.
I talk to anyone who asks me what is wrong, i start with a fairly simple explanation and if they ask more questions
they get the whole story. " I was running to the loo up to 20X's a day, terrible pains and bloody mucus in my stools....
Hey, they asked and this is my life as it has now become, i will be open and honest in what i am dealing with. If i
can pass on this knowledge about this disease, it gets the word out there.
Some days i find myself crying as i am making dinner for my family, feeling how unfair it is that i have to cook this
wonderful smelling food and not be able to eat it. All i would have to do is ask my husband to cook it and i am sure
that he would. I have to still learn how to reach out and ask for help with the simple things. I need to also learn to
slow down and rest when i need to. I find this a great challenge asking for help of any kind, after all i am the care
provider in my daily job and for my family. If i can learn to do this it will make my life that much more simple.
So in a nut shell, reach out, become informed, take control of what you can, and learn to ask for help. Most
important.....find a great support system! I found mine here.
From Jean-Pierre with IBD
Actually, I don't think that I cope with it.. I just live on as if nothing had changed. When I moved back here, in my
hometown, I just signed up to all the activities I did beforehand and went back to the exact same routine that I had
before. Of all the people I see on a regular basis, I'm the one that is always forgetting I have a stoma, usually I
remember only when I get hit in the gut as part of a joke or something
From Marie with Crohn’s Disease
Personally, the thing that has helped me cope with it the most is you guys, and mostly you Jippy. It's nice to have
someone that understands what I'm going through. Thank you so much.
Also, remembering to take it one day at a time. Remember that the bad days will pass and appreciate the good
days. Easier said than done though.
From Wendy with ulcerative colitis
This is all so new to me, that I am still figuring out how to cope!
A couple of things that I know for sure:
1. Don't be embarassed. From the beginning, I have been open with everyone that I have talked to about UC. I
wasn't sure, initially, whether to discuss it with my co-workers but decided to be open and honest about what was
going on.
2. Find someone to talk to. For me, that has been this board. When I haven't wanted to talk to my "real" family and
friends, I knew that I could come here and talk to my IBD family. I can ask any question that I have and get great
responses from people who have been there.
From Melanie with Crohn's Disease
Having a daily disease is something hard. It is hard for us with IBD. It is hard for family members of people of IBD.
It is hard for friends of people of IBD. I think the worst thing is not understanding IBD.
Understanding is I think is the most important thing anyone with IBD can do. I read lots of books & handouts from
my doctor and the library, I joined the CCFA (crohns and colitis foundation of America), I read up on my
medications, I searched for things I could do at home. I changed my diet. I started using the information that I
found and adding it into my life and the others that are close to me. This has been the most helpful form of coping
for me.
As for feeling alone and different from everyone else all I can say is finding this website has helped alot. Before
this I had never talked to anyone with crohn's and/or an ostomy. It is wonderful to talk to someone who knows just
what you are saying and how you are feeling. My husband has also helped me to know that I am never alone; I
have a wonderful family and two great kids. That I am still beautiful no matter how many scars I have.
When I am sick and unable to get out of bed I like to surround myself with things I enjoy. I keep books, magazines,
cd's and photos of my family where I can reach. I like to watch birds. So I lay where I can look out the window. It can
be really hard not being able to get out of bed or leave the house but I still try and do things that I enjoy and that
doesn't take lots of energy. (This keeps my spirits up. It also keeps things as normal as possible.) Playing cards,
watching movies, playing board games, reading, talking with family, playing small games with the kids and
daydreaming. I like to think of where I would go if my family and I could just pick up and go anytime we liked.
Knowing that I will feel better soon and that this is only temporary helps alot also.
Accept others help. I'm not less of a woman for admitting I need help.
The last thing I like to do is remind myself that I am not this disease. I am a whole person. I will not become "the
sick woman" and my identity is not wrapped around how sick I am and how I am feeling today. I am still Melanie.
From Jenny with Crohn's Disease
I am 23, and I am preparing myself for my first surgery to repair my damaged intestines. I am 23 I have lived, for
fourteen years with the diagnosis of Crohn’s disease, good and bad I have fought to never have this surgery. Now I
can’t help but look back and think what if. What if? What if I had had this surgery two or three years ago? What if I
had refused the medicines that made me sicker? What if I had said “no” to the feeding tubes? What if I quit
smoking years ago? What if I hadn’t abused my body with alcohol or drugs? What ifs plague me. And in the midst
of my what ifs are the memories that just keep coming back to me. As if in preparing for this surgery attempting to
be emotionally ready I can’t turn off this fourteen year old journey that has shaped me, guided me to my major in
college, guided me to seek out other Crohn’s patients, guided me to an EMT class, and guided me forward.
Propelling me. Say what you will about having a chronic illness, but never say that it doesn’t shape the way you
look at the world. Or the ways it guides you into decisions that would never had occurred to you before. Before
being sick.
------------------------
Now here are my other thoughts, I was diagnosed when I was nine years old, I went into remission and became
sick, really sick at 16. But I always saw blood, and had my first accidents in kindergarten. I was so embarrassed in
kindergarten after the first time I didn't tell anyone, I left my underwear on I felt like a baby. My mom taught me how
to be my own best advocate, how to secretly change in a public restroom...
I cope now today in so many different ways, the first one is when I have to use a public bathroom I tell myself I will
never see these people ever again..(my mom taught me that mantra...) I have had many many public accidents, I
learned how to clean myself up, I had too.
I would say learn a lot but not too much, for me I didn't want to or need to know about ng feeding tubes until I
needed one. Stories of people on liquid diets scared me when I was 16, when I needed to do them at 20 that's
when I needed to know...I don't always need to know the worst case scenario.
It is ok to call the G.I. on call at your hospital at 2am because you are scared of a new symptom. This has helped
me immensely, they help you get through the night...
You can loose a lot of blood before it's an emergency (I have had bleed outs, and panicked...) I wish I had known
this, dark red blood is internal, bright red is surface...and bleeding is ok..I tell myself this often.
finally I would like to add, if you are too embarrassed to tell people about the details of your illness, give them the
CCFA about Crohn's and Colitis pamphlet, tell them you will answer any question they have but the pamphlet will
explain it, and start the conversation...for me when I was in college it was the easiest way to explain it to new
people, and it worked out ok.
finally I have to tell myself I have an illness I am not an illness, like many people have pointed out...this may have
shaped me but its not me...
From Amy, with Crohn’s Disease
1. Self Esteem/ 2. Self Image – I combine them because they go hand in hand with me. These are hard for me
because I never thought too highly of myself in all honesty. I think that I have always been fond of the inside traits I
possess but I haven’t every really looked in the mirror and liked what I saw. Now, with my disease and meds
combined, I have my hair falling out, acne at times, thin and frail skin, poorer eyesight and bloating just to name a
few.
I have worked very hard to raise my self esteem and the way I see myself. I try to focus on myself when I can and
do nice things for myself. Although my Mom cuts my hair and I use store bought color, I try to keep it nice looking
because in all honesty it is falling out by the handfuls in the mornings and the Imuran has made it so curly
underneath that I have to straighten it everyday. I use nice make up and try to dress in the latest fashions. It might
be the sale item at Old Navy, but I feel good in it and that makes all the difference! I try to make myself up and
dress nice everyday so that I feel good about myself even when I don’t feel good inside. It works! It is all in the art
of disguise!!! LOL Take a little time for yourself and the reward is that you will feel better about yourself.
I try to better myself in the way that I eat, exercise and focus on the fact that although I can not eat salad and fresh
fruit, there are ways that I can stay as healthy as possible. I place blame on the med side effects rather than on
myself now. I allow myself the weight gain on steroids because one good flare and it goes away. I use ProActiv
skin care and it really keeps my acne at bay. All in all, what makes you feel good is worth its weight in gold!
3. Depression –Whether it is from steroids or the other medicines I am on or the fact that I have a chronic illness, I
fight this demon frequently. I can not fight my depression on my own. I know that. I need support from those
around me. Nothing pulls me out of my depression than the people on our message board and the people at my
CCFA group. It is just the simplicities that I find pull me back from the edge of the black hole. Laughing, crying,
joking and making light of what ails me turns my depression around. Sometimes it takes a while but with the
hands that I hold on to around me, they give me the strength that I sometimes can not find.
I described it best in a post that I will quote myself from: “It is very hard to walk the path of IBD. It is challenging to
say the least and it is beyond frustrating. There are ups and downs and more downs and then ups again. I think
that with a disease that has no cause or cure, it in itself is a black hole. It is what surrounds that black hole that I
believe keeps us all from going in...Each other. I think that we all stand around it, holding hands and as one of us
starts to step forward, there are ten more that step up to hold us back. Our families and friends are there too. Our
faith and our beliefs keep our grasp on each other tight. It is that grasp that I need so desperately at times.”
4. Anger – I think that most of my anger stems from our medicines. Most of my anger comes from the fact that
these horrible meds that I am forced to take, due to lack of options, make me have horrific side effects, long term
effects, and they treat my symptoms not my disease. I literally take a medicine that ups my risk of cancer. Now, it
isn’t decreasing my risk of cancer from my disease. It is just adding in another factor. I think the most anger
though is that if I don’t take these horrible meds, I will get sicker and could end up in the hospital away from my
kids and my family. Now, to combat the anger I look to advocacy. I do my best to create public awareness. I tell
everyone who will listen about IBD. Why? Because if more people know, more people will care and more will be
done.
5. Grieving – I never really grieved for the life I had before. Or if I did, I don’t remember it. I was 20 and I was foolish.
I didn’t do what the doctor told me and I made bad choices. Now, I am ten years in to it and can probably say that I
grieved it away with a cocktail and a cigarette. Those have both since become things of the past but at the time, I
didn’t get the full realm of what I had and what it could become. I know better now.
6. Sense of loss that you life isn’t ever going to be the same – I see it more as a loss of my freedom most of the
time. I don’t have the freedom to go and do like I used to. I have to plan out the simplest things because it will
affect me. I drink my coffee at a certain time in the morning so that I can run to the bathroom a number of times
before taking my kids to school. I don’t have the freedom to go camping in the woods anymore because quite
frankly, the forest doesn’t need that much toilet paper buried in it. Even if it is biodegradable. The comforts of my
home and my comfort zone are very important to me now and that zone gets smaller with the disease. Much
smaller.
7. Feeling alone – It is my number one goal to make people that have been diagnosed with this disease to not feel
alone. I was very alone at the beginning of my disease. It was a terrible place to be. I would sit on the toilet and fill it
with blood and have no one to talk about it with. It was very hard. It was scary. It was very isolating. Now
unfortunately but fortunately I have my sister who was also diagnosed. I haven’t been alone since she was
diagnosed. It is a tremendous support. Our site has added so much more support that I know in the depths of my
soul that I will never be alone again.
I think that is the one thing that makes me the most upset is that people with IBD feel alone. I hope that everyone
that feels alone can find us here and that they never feel alone again. I offer myself to every person out there with
IBD and you can call me or email me and I will always be here for you. Surround yourself with other IBDers. Go to
the Crohn’s and Colitis Foundation near you and sign up! Get in touch with others out there and that feeling of
solitude will go away and you will feel an overwhelming peace that you will never feel alone again.
8. Feeling different – I am different. I go to the bathroom sometimes 20 times a day. I puke my insides out just
because it is a new day in which my stricture might have swelled up too much and the food can’t get passed. I
have rectal and intestinal bleeding to the point that I am anemic. I have hemorrhoids and I use my 2 year olds
Desitin to calm them. I walk around every day with at a 4 on the pain scale of 1 – 10. The 4 is my normal day. My
bad days don’t measure on that scale. I have nausea like I am 6 weeks pregnant the moment my feet hit the floor.
I am a 30 year old mother of two and I can belch a sailor under a table. Am I different? Well, yes I am. But aren’t we
all different in some way anyways? I have brown hair and I am short and stocky. My sister is tall and slim with
blonde hair. I was different before I was even diagnosed.
I think that to counteract the feeling of being different, I have become more tolerable. I don’t get mad any longer
when I am waiting in line and someone rushes in front of me. Maybe they are rushing to avoid an accident? Maybe
they have IBD. Maybe not but it is easier to excuse now. I allow people to go ahead of me and I do not hold
resentment to the person who just cut me off. I have been there and I have barely made it myself. So all in all, we
were all different before we began. Now we can at least combine our differences to make them easier to bear and
easier to disguise!
9. Shame – I rid myself of my shame by opening my mouth. There is not a person in my life that doesn’t know that I
have Crohn’s Disease. I think that there is shame in silence and to be silent is to continue to feel shame. So, I talk.
I talk probably too much about it to the point that people may want me to be quiet. It is my one wish that those with
IBD feel no shame. There is nothing to be ashamed of in having a chronic illness. You didn’t cause it, you didn’t do
it and you should not feel ashamed that it happened to you.
10. Embarrassment – I think the moment I first felt embarrassed was my first c-scope when after it was all over
the nurse came in and patted me on the thigh and told me that I needed to pass gas in front of her to be able to
leave. Uh, excuse me??? Well, I did it. I was mortified. Cut to ten years later and the loss of all of my modesty in
having two children. I am in Target with my now four year old and while trying to pick out a birthday card I got the
unbearable urge to drop everything and run to the bathroom. I knew it was too far and I knew I wasn’t going to
make it. I did what I could. I grabbed my son and we ran into the “Family” bathroom. Sitting there my son was
yelling, “Mama, that is soooooooooo much poop. I have never heard that much poop before.” Oh yes, from the
mouths of babes. There was no faucet loud enough to drown it out. I cleaned myself up and then the moment
came when I knew I had to walk out the door. Well, as luck would have it, there was a line. A line for the family
bathroom. And yes, they ALL stared at me. What did I do? Well, I held my head high because not one of those
people know the strength that I have inside. To take a 3 year old to Target in the middle of a flare when I hurt so
bad and am so weak is triumphant. To be able to have made it to the bathroom in the time I did must have set
some kind of record.
And although I didn’t make it quite in time, it was the first of many dashes that I have made and there will be more
to come. I plan now for those moments with a change of clothes, wipes and such in the car. I keep Imodium on
hand and use it. I think the most important thing to do though is laugh. I laugh at myself all the time. I know that I
am not the only one! I know I am not the only one to have an accident in a public place. I know that I am not the only
one to have my hemorrhoids hurt so bad that I want to spray my behind with a fire extinguisher. It has taken me ten
years to get to the point that most of the things that happen are laughable. The others will pass and will be
forgotten. I will be embarrassed but then I will laugh about it and joke about it and I will turn the embarrassment in
to a way to make someone else laugh. It is true that laughter is the best medicine. It truly is for me. I allow my
embarrassment to humble me.
Dream your dreams and live your life to the fullest. It is okay to have the same dreams as before. It is okay to still
go to school to be a doctor. It may be hard but it is possible. It is okay to want to be teacher or a nurse. It is okay to
go to school. It is okay to do what you want to do. All you have to do is make the necessary arrangements to enable
yourself the easiest time possible. Line up your plans and put them in to action. Go after your dreams. It would
have been so wonderful to have accomplished them before, but now to accomplish them in the face of a chronic
illness is pure greatness.
I believe that the most important thing is to never lose hope. There is so much hope to be had in the fact of what is
on the horizon for us. There are new meds, new genes, new triggers and new ideas. There is so much to happen
and I pray that it is right around the corner. Because one day they will find the cause of IBD and once they know the
cause then they will find a cure. That cure and the end to all of these emotional challenges are on the horizon. It
will happen.
Some of the emotional challenges that are typical of those diagnosed with IBD are:
1. Self Esteem
2. Self Image
3. Depression
4. Anger
5. Grieving
6. Sense of loss that your life isn’t ever going to be the same
7. Feeling alone
8. Feeling different
9. Shame/Guilt
10. Embarrassment
(*Some of the items on this list were offered in Sherry Porat's presentation at the IBD conference on Nov. 3,2007)
We feel that the best way to explain how to deal with these challenges and others is to cover this page with the
personal explanations of others living with IBD. We will include our own challenges and how we cope them. If you
would like to add yours or if you would like a specific topic covered, please email us and we will add it! There is
also the ongoing discussion on the message board that covers this topic. Here is the link: http://ibdliving.
org/bulletin/viewtopic.php?t=1082
From Joey with Crohn’s Disease
1. Self Esteem, I have never really had a major problem with this particular issue but it does effect me from time to
time. It seems to be more of a problem when I feel very sick or i'm in alot of pain. I find that doing something I am
good at during these periods helps. If I can see for myself that I am still able to accomplish what I set out to do I
am still me. I am a guy it is hard for me to explain this. Lets say I feel real sick and weak, Normally most people
would want to hide away until the symptoms subside. This is when I push myself the most. One thing I try not to let
happen is to have my Crohn's stop me. I am not saying I go out and climb Everest but I will go to the park and take
a walk or go to the mall with my wife and shop or whatever. It is important for me to feel normal, without that I do
loose my sureness of myself.
2. Self image, This is one I do have a lot of trouble with. Most of my life I was in pretty decent shape. Not to say I
was ever a thin person but I was physically stronger and healthier. Since I was Diagnosed with Crohn's it is a
whole different story. I fight with my weight constantly now. Steroids and other meds I have taken and will probably
take again cause tons of weight gain. And with more weight I have a lower self image. Now I am a guy and it is
easier for me to deal with added pounds but it still sucks to have three different wardrobes in my closet. Healthy,
sick, and very sick. How do I deal with it? I do my best to eat healthy and exercise. Of course that isn't a perfect
answer but as long as I am trying to look good and I have done all I can it helps me deal with it. It doesn't hurt that
my wife likes a burly guy.
3 & 4. Depression and Anger, These are my biggest issues with IBD so I will answer them together, as they seem
to run together in my life. For me depression is a very big enemy. I have found myself extremely depressed both in
the past and at the present, and it usually coincides with my current health. The main problem is Along with my
depression comes a dark angry side of me I absolutely despise. I overreact and jump down peoples throats when
I am depressed. It seems to be a protective measure for me. I don't like people to worry about me and in the past I
would get others angry with me so they would leave me alone and I wouldn't have to show how I really feel. This is
not a good method of dealing with depression. More recently I am trying to get others involved. When I am feeling
down or sick I try to talk to my wife and friends to get that shoulder to lean on. So far this has been a dramtic
improvement for me.(Just ask my wife) As far as anger goes this is tough for me. I grew up in a family where men
didn't show much weakness. So it seems to be another defense mechanism for me. As I learn to deal with my
emotions I find it easier to control this side of me. (I try to take a step back from the situation and think about how
someone else would deal with it) Kind of look from the outside at what others see. It is working so far and
hopefully I will be able to do this without having to think so much about it.
5. Hopelessness, I don't really get a sense of hopelessness but I do feel very disappointed with things at times.
Like when I finally found the best Dr for me she decided to move 800miles away and I had to find a new Dr. Or
when a med causes a bad reaction. We bank alot of hope in the meds we take and when they fail it can really get
you scared or depressed. I try to take things in stride. I do lots of research on IBD so I know alot about the
medications out there and the others on the horizon. I also believe in fate and hope my path in life has a better
road up ahead. I try my best to keep my faith strong and believe God has smething planned for me and pray it
works out in the end.
6. Sense of loss. I was 25 when I was diagnosed and in a steady relationship with the woman I would later marry.
So for me my life was just getting started. The only thing IBD has done was change the direction not the
destination. Like I said earlier I do my best not to let it slow me down. Not to say it doesn't limit me but I find ways
to work around some of the problems they come along. I think the biggest issue for me is having the ability to use
a restroom when needed.(which can be very often) So I plan my trips and daily routines around this so I can strike
that worry off my list. I also do my best not to cancel plans I have made unless I am very sick and just don't have
the strength or willpower to do what was planned. But when you have understanding friends and family this issue
becomes alot easier to deal with. And if they can't then maybe talking to them to help them understand what is
going on will help. I belong to a Barbershop Chorus that does several shows a year and practices weekly. And not
once has this disease stopped my plans. Even if I felt poor.
7. Feeling Alone, I felt this when I was first diagnosed. I didn't know anyone with IBD. It isn't something most
people talk about in normal conversation so how would I know. And from what I can tell people that do suffer seem
to try and hide the fact they are sick. To me this is a silly move. It helps no one especially ourselves. This is were I
thank God and the Gov't for the World Wide Web. I did a search on crohn's and found a website chock full of people
that suffer from IBD. It was the first time after my diagnoses I felt like I was not alone. And as I have talked to others
that have IBD I realize there are alot of us out there. And the stories and experiences we share are probably the
best thing that ever happened to me. And as I learn more I do my best to help others with there issues due to IBD. I
get a very strong sense of well being helping others feel like a family and not a diseased person. This would also
relate to my self esteem.
8 & 9. Feeling Different or Shame, As far as I am concerned none of us should ever feel either of these. We aren't
different, if you saw me in a group of people you would never know I was sick. And I don't mean I hide how I feel, I
mean I don't look like some kind of diseased monster. I look just like everyone else. We shouldn't never feel
shame. IBD is not our fault. There is nothing we did that caused it and if you are looking at this you are trying to get
better. I see no shame in that.
10. Embarassment. I have heard other tell stories how they have had accidents in public places and how it makes
them sad or embarassed. And I have been there myself. One way I try to avoid something like that is to make sure
the places i go to have a public restroom and know how I feel that day. If I had to go to the bathroom 10 times
before lunch I know it is not the day to go to the park and walk around all afternoon. But when I do have my
moments of embarassment I try to make a joke and play it off or I excuse myself and leave the situation. I also try
to go places with someone else. Especially when shopping. I can't tell you how often I have to go to the bathroom
in the middle of food shopping and need to leave my cart stranded by itself. I would think this would be especially
helpful for IBDers with children. and If you do have an embarassing moment you have and allie in the situation.
Kind of like sharing the load so to speak.
Also from Joey with Crohn’s Disease
First In my humble opinion, Try to learn as much as you can about it would be first. It is amazing how little people
know about IBD in general.
Second, talk to your friends and family and help them understand what you are going through and how they can
help. This is hard to do but extremely important. When I first got sick my Wife (Girlfriend at the time) did not
understand why I would have to cancel plans or why I would be irritable one day and nice the next. The physical
and mental effects of this disease and the drugs we take for it wreak havoc on us. You guys know what I mean.
Third, Find a Dr you trust. I would say this should be first but if you do not know much about the disease you won't
know if you have a good Dr or not. If you can talk to your Dr and understand what they are saying to you or they
explain it so you understand it makes it much easier to wrap your mind around things like, New meds, exams and
procedures and even surgery.
Fourth, Support group(Either person to person or over the WWW)For me it was finding others that know what I am
going through that helped me really come to grips and start to feel somewhat normal again. When I was first
diagnosed I played the blame game. I thought it was my fault I was sick and so did my friends. I think that is the
main problem with IBD. They aren't even sure how it develops or if it is a bug, gene or ethnic trait. It isn't like other
autoimmune diseases, they all have a reason. Aids has casual encounters (Unprotected Sex), Sharing tainted
drug needles, and even blood transfusions by hospitals. There is a reason you get it. IBD sufferers aren't sure why
we have it.
Five, We have to realize that not everything we do is going to help. Sometimes the things that are working stop
working. Medications can stop helping or we can react poorly to them. This is very normal for IBD. I have run the
gamuts as far as meds go. From the antibiotics and 5-ASA meds all the way to experimental biologic medications.
I have had favorable effects from some, and I have also had life threatening reactions to others. This is the part
that is hardest for me to deal with. I have pretty much run out of medications. It can take a long time to find what
works for each person. Some are better off then others and God Bless them for that. but others have to try many
different combinations to find what works for them. We have to try and keep our head up during this period. We
have to discuss everything that is going on with our Dr's so they know what works and what doesn't. It isn't like a
bad cold where you take an antibiotic for ten days and suddenly you are better. Most of the meds we take are for
both remission and maintenance. They become a permanent fixture in our daily lives. Sorry a lot of reading in that
one.
Sixth, keep a diary. There are many different things the diary can do for used. The two main ones are for our Dr's
reference and for us. What do I mean? Well let’s say you keep a diary and you right down the meds you take, the
foods you eat along with how often you have to use the bathroom, when you get pain and the severity of it. As you
look at the diary you see you have more pain and go to the bathroom more often on Tuesday. So you read what you
eat on Monday night and see it is Pizza night on Monday every week. That may be a food you should avoid or limit. I
know I can't always remember what I ate the night before and without that reference I would have probably missed
it.
From Casey with Crohn’s Disease
Some things that help me when I am feeling down, depressed, or sick from IBD.....
Posting and talking with all of you every day , helping others with IBD, going to a CCFA support group meeting,
learning about IBD, talking on the phone with Amy
reading scripture, reading a devotion and praying
listening to uplifting music
using a heating pad, and pain meds, anti-nausea meds or anti-spasm meds
watching something funny, like Larry The Cable Guy, laughter is the best medicine for me , cracking jokes about
myself and IBD in general
doing something nice for myself, like getting a massage, going shopping if I am not too sick, getting my hair done,
buying new make-up
celebrating small steps, like graduating from clear liquids to full liquids, then to soft foods, lol!!!!!!
saying no to people asking me to do something that requires me to expell too much energy, and saving that
energy for my family and daily life, furthermore helping my stress level
yoga is great for me if I would get to doing it again, ugh
of course figuring out what foods and drinks hurt me and avoiding them
getting little things accomplished that make me feel better like. Doing a little housework, cleaning my desk off,
running a tiny errand, baking something, etc.
last but not least....counting my blessings, which are abundant , taking it day by day, and knowing that "this too will
pass".
From Baiba with Crohn’s Disease
The depression and anger I can definitely relate to. When I was first diagnosed, I was in denial of sorts; no, not
me, I can't have a chronic disease such as this. Then came the anger, not sure at who, maybe me, the doctors, the
world in general, God. Then came the depression. That one is the hardest to deal with and seems to be the one
that is taking the longest to go away, one day happy, one day sad.
The biggest one on this list, for me, however, is the feeling of loss. I feel like my old self is gone forever (and I
kinda liked her alot); that my old life is gone forever. That things wil never be like they were, that I will always be too
tired to laugh or too nauseated to eat the foods I love, or irritated beyond words from the medications we have to
take. This is the hardest pill to swallow (pun intended).
From Stacey with ulcerative colitis
Baiba, I can totally relate to how you feel. I've changed so many things from where I live, (when I was first
diagnosed I shared a bathroom with 4 other people, lol) to how I eat to where I go, to what seems like everything.
The denial and anger and frustration and right out desperation, the crying on the toilet, the crying myself to sleep,
oh man its been a rough road with this disease that is for sure.
And Casey I like a lot of your coping ideas too, I love getting my hair done or buying something nice and new
makes me feel pretty again ya know? =)
And Joey I totally relate to what you say about the medications. I've been through so many this past year. My
insurance just told me a few weeks ago I've reached my maximum for the year so they're refusing to pay for any
more of my drugs. (grr) The docs kept trying new things that just wouldn't work. It's been so frustrating. I'm still not
even sure what's working b/c I'm back on the prednisone again for the third time in a year. (double grr)
Here's my own lil response to amy's posted emotions:
How to cope/overcome by Stacey:
1. Self Esteem - tough one, i'm not even sure
2. Self Image - don't even worry about it when on the preddy....
3. Depression - Just remember it won't always be this bad....
4. Anger - Just let it out!!
5. Hopelessness - Watch a funny movie
6. Sense of loss that you life isnt ever going to be the same - Sense of gain in that you have a new life filled with a
goal to be healthy, better eating habits, and a deeper knowledge of, and a new relationship with your body
7. Feeling alone - IBDLIVING!
8. Feeling different - meh, who wants to be like everybody else anyway!
9. Shame - Hey, its a broken colon, not my fault.
10. Embarrassment - again, broken colon, just grin and bear it, don't let it get to u. face red, shoulders shrunken,
uh oh, can't find an empty bathroom... ah well. gotta do what ya gotta do.
I cope by talking about it, to as many people who will listen to me. For some reason this whole disease thing
makes more sense when I'm saying it out loud. When I let myself get caught up in my thoughts there's room for
thoughts like, 'why me' and stuff like that. But when I'm talking with my friends and family (and you guys!) for some
reason things start to make a little more sense.
At first I coped by searching all over for as much information as I could find. I searched the internet, I bought 3
books, I joined message boards, I hunted for people who understood on facebook, myspace, livejournal, ccfc, I
sent away for pamphlets, I went to a meeting for the ccfc, and I raised money and took part in the Heel n Wheel a
thon in June of last year.
For me having IBD is like being on a roller coaster and not knowing what the next turn is going to look like. Having
friends and family around who at least have an idea of what the ride looks like being there by my side gives me the
strength to get through the darkest days.
Most of all it's important for me to not let this disease make me feel embarrassed. I have funny words and terms
that I use at work or with my friends that shed a little light about what I'm going through, while still giving a little
wiggle room for people who are a wee bit sensitive to the technical terms. Like, uh oh! Bathroom time! And
everybody moves out of my way. lol
I'm determined to live my life as normally as I possibly can. It's hard sometimes for someone with IBD, but if you
can get over your fear of public bathrooms, port-a-potties, and the side of the road (lol) life becomes a little less
stressful.
Oh, did I mention that I also cope by carrying sanitizing wipes and hand sanitizer for those unfortunate port-o-potty
days? lol
One thing I loved about travelling through the US this past summer, rest stops! I wish we had them in Canada. Up
north they have rest-stops but they're glorified port-o-potties. In Southern Ontario, there's just food stops every so
often. It's rough.
From Jody with Crohn’s Disease
The only 2 things that come to my mind right now is 1. to become a part of this group or one like it. And 2. to involve
your family/friends in your treatment....let them go to doc appointments with you, etc. so that you develop your
support system. Also all should read the 100 Q and A book and share it with your support system.
Well, I guess I'm on a roll here. They should ask questions. I can only imagine what it must be like to be newly
Dx'ed and come here and read some of what we talk about! I think it might be confusing and scary if they hop into
the wrong thread. I don't know any way to protect them from that so they should know up front to ask about anything
that they don't understand or are concerned about.
Something that none of you have mentioned is a sense of being overwhelmed. For me, that is a biggy....it could be
partly age and the slowing down that comes with it.
Anyway, I look at my housekeeping...not nearly what it used to be. Cooking, who really wants to cook a meal when
they know they can't even think about eating it? Work, Dear Lord, I never knew a person could be as tired as I am
and still move. Joint pain...nuff said. I am sure there are others that I just don't have in mind at the moment.
When I let myself look at the big picture, I am so overwhelmed that I want to go to bed, assume the fetal position
and never move again. So I guess we need to include something about living in the moment so that it all doesn't
seem so big and overwhelming.
When I look at all of the things you have mentioned, I just think that they should know not to withdraw and isolate
themselves. I have been soooo guilty of that and still am at times.
I'm very honest with people. I flat tell them, I have crohn's. If they don't know what that is, I explain. This is what I live
with every day. If they are worth my time, they understand and give me my space. If not, I don't bother with them.
That is a luxury of age, you lose the drive to impress people...let them deal with it if they are too stupid or self
absorbed to at least try to understand.
From Joanna with Crohn’s Disease
Family, friends and forums.... I would be completely lost without this board!
Read as much as you can get your hands on, but at the same time remember alot of what you may read may not
effect you the same way. There are alot of scary stories, but you may never have to deal with those issues.
As for the accidents and feeling of urgency, i started packing around a bag with a depends, wipes, creams, a
change of clothes, etc. It gives me a sense of control and power if an uncontrollable situation arises.
I felt very alone until i found this site, it truly is my best life line, everyone can completely understand what i am
going thru, I can come on and whine, complain, or have a pity party and they lend me their 'ears' and support. I can
come on and tell them my fears, hopes and desires or I can come on and talk about my BM's without worrying
about offending anyone. My family is of course a great support but talking to others with IBD's is what truly helps.
The anger, hopelessness, sadness, and depression and the sense of loss that comes with this disease are the
next hardest and biggest hurdles besides the physical aspects. When I feel myself slipping into darkness, actually
i usually just find myself there all of a sudden, i have learned to try and find all the things i am thankful for. It is so
very hard sometimes, but i am thankful for family, friends, a roof over my head, clothes for my children, food on the
table, a smile from a child, a song from a bird, i try and find something good in everything around me. I also
remind myself that it could always be worse and there are others dealing with worse things that i am and that i can
get thru this. I also reach out to my IBD family, they are always here to help me out, give me suggestions or just
send hugs and prayers. I know later in the day or over the next few days or even weeks things will be better to
some degree.
I talk to anyone who asks me what is wrong, i start with a fairly simple explanation and if they ask more questions
they get the whole story. " I was running to the loo up to 20X's a day, terrible pains and bloody mucus in my stools....
Hey, they asked and this is my life as it has now become, i will be open and honest in what i am dealing with. If i
can pass on this knowledge about this disease, it gets the word out there.
Some days i find myself crying as i am making dinner for my family, feeling how unfair it is that i have to cook this
wonderful smelling food and not be able to eat it. All i would have to do is ask my husband to cook it and i am sure
that he would. I have to still learn how to reach out and ask for help with the simple things. I need to also learn to
slow down and rest when i need to. I find this a great challenge asking for help of any kind, after all i am the care
provider in my daily job and for my family. If i can learn to do this it will make my life that much more simple.
So in a nut shell, reach out, become informed, take control of what you can, and learn to ask for help. Most
important.....find a great support system! I found mine here.
From Jean-Pierre with IBD
Actually, I don't think that I cope with it.. I just live on as if nothing had changed. When I moved back here, in my
hometown, I just signed up to all the activities I did beforehand and went back to the exact same routine that I had
before. Of all the people I see on a regular basis, I'm the one that is always forgetting I have a stoma, usually I
remember only when I get hit in the gut as part of a joke or something
From Marie with Crohn’s Disease
Personally, the thing that has helped me cope with it the most is you guys, and mostly you Jippy. It's nice to have
someone that understands what I'm going through. Thank you so much.
Also, remembering to take it one day at a time. Remember that the bad days will pass and appreciate the good
days. Easier said than done though.
From Wendy with ulcerative colitis
This is all so new to me, that I am still figuring out how to cope!
A couple of things that I know for sure:
1. Don't be embarassed. From the beginning, I have been open with everyone that I have talked to about UC. I
wasn't sure, initially, whether to discuss it with my co-workers but decided to be open and honest about what was
going on.
2. Find someone to talk to. For me, that has been this board. When I haven't wanted to talk to my "real" family and
friends, I knew that I could come here and talk to my IBD family. I can ask any question that I have and get great
responses from people who have been there.
From Melanie with Crohn's Disease
Having a daily disease is something hard. It is hard for us with IBD. It is hard for family members of people of IBD.
It is hard for friends of people of IBD. I think the worst thing is not understanding IBD.
Understanding is I think is the most important thing anyone with IBD can do. I read lots of books & handouts from
my doctor and the library, I joined the CCFA (crohns and colitis foundation of America), I read up on my
medications, I searched for things I could do at home. I changed my diet. I started using the information that I
found and adding it into my life and the others that are close to me. This has been the most helpful form of coping
for me.
As for feeling alone and different from everyone else all I can say is finding this website has helped alot. Before
this I had never talked to anyone with crohn's and/or an ostomy. It is wonderful to talk to someone who knows just
what you are saying and how you are feeling. My husband has also helped me to know that I am never alone; I
have a wonderful family and two great kids. That I am still beautiful no matter how many scars I have.
When I am sick and unable to get out of bed I like to surround myself with things I enjoy. I keep books, magazines,
cd's and photos of my family where I can reach. I like to watch birds. So I lay where I can look out the window. It can
be really hard not being able to get out of bed or leave the house but I still try and do things that I enjoy and that
doesn't take lots of energy. (This keeps my spirits up. It also keeps things as normal as possible.) Playing cards,
watching movies, playing board games, reading, talking with family, playing small games with the kids and
daydreaming. I like to think of where I would go if my family and I could just pick up and go anytime we liked.
Knowing that I will feel better soon and that this is only temporary helps alot also.
Accept others help. I'm not less of a woman for admitting I need help.
The last thing I like to do is remind myself that I am not this disease. I am a whole person. I will not become "the
sick woman" and my identity is not wrapped around how sick I am and how I am feeling today. I am still Melanie.
From Jenny with Crohn's Disease
I am 23, and I am preparing myself for my first surgery to repair my damaged intestines. I am 23 I have lived, for
fourteen years with the diagnosis of Crohn’s disease, good and bad I have fought to never have this surgery. Now I
can’t help but look back and think what if. What if? What if I had had this surgery two or three years ago? What if I
had refused the medicines that made me sicker? What if I had said “no” to the feeding tubes? What if I quit
smoking years ago? What if I hadn’t abused my body with alcohol or drugs? What ifs plague me. And in the midst
of my what ifs are the memories that just keep coming back to me. As if in preparing for this surgery attempting to
be emotionally ready I can’t turn off this fourteen year old journey that has shaped me, guided me to my major in
college, guided me to seek out other Crohn’s patients, guided me to an EMT class, and guided me forward.
Propelling me. Say what you will about having a chronic illness, but never say that it doesn’t shape the way you
look at the world. Or the ways it guides you into decisions that would never had occurred to you before. Before
being sick.
------------------------
Now here are my other thoughts, I was diagnosed when I was nine years old, I went into remission and became
sick, really sick at 16. But I always saw blood, and had my first accidents in kindergarten. I was so embarrassed in
kindergarten after the first time I didn't tell anyone, I left my underwear on I felt like a baby. My mom taught me how
to be my own best advocate, how to secretly change in a public restroom...
I cope now today in so many different ways, the first one is when I have to use a public bathroom I tell myself I will
never see these people ever again..(my mom taught me that mantra...) I have had many many public accidents, I
learned how to clean myself up, I had too.
I would say learn a lot but not too much, for me I didn't want to or need to know about ng feeding tubes until I
needed one. Stories of people on liquid diets scared me when I was 16, when I needed to do them at 20 that's
when I needed to know...I don't always need to know the worst case scenario.
It is ok to call the G.I. on call at your hospital at 2am because you are scared of a new symptom. This has helped
me immensely, they help you get through the night...
You can loose a lot of blood before it's an emergency (I have had bleed outs, and panicked...) I wish I had known
this, dark red blood is internal, bright red is surface...and bleeding is ok..I tell myself this often.
finally I would like to add, if you are too embarrassed to tell people about the details of your illness, give them the
CCFA about Crohn's and Colitis pamphlet, tell them you will answer any question they have but the pamphlet will
explain it, and start the conversation...for me when I was in college it was the easiest way to explain it to new
people, and it worked out ok.
finally I have to tell myself I have an illness I am not an illness, like many people have pointed out...this may have
shaped me but its not me...
From Amy, with Crohn’s Disease
1. Self Esteem/ 2. Self Image – I combine them because they go hand in hand with me. These are hard for me
because I never thought too highly of myself in all honesty. I think that I have always been fond of the inside traits I
possess but I haven’t every really looked in the mirror and liked what I saw. Now, with my disease and meds
combined, I have my hair falling out, acne at times, thin and frail skin, poorer eyesight and bloating just to name a
few.
I have worked very hard to raise my self esteem and the way I see myself. I try to focus on myself when I can and
do nice things for myself. Although my Mom cuts my hair and I use store bought color, I try to keep it nice looking
because in all honesty it is falling out by the handfuls in the mornings and the Imuran has made it so curly
underneath that I have to straighten it everyday. I use nice make up and try to dress in the latest fashions. It might
be the sale item at Old Navy, but I feel good in it and that makes all the difference! I try to make myself up and
dress nice everyday so that I feel good about myself even when I don’t feel good inside. It works! It is all in the art
of disguise!!! LOL Take a little time for yourself and the reward is that you will feel better about yourself.
I try to better myself in the way that I eat, exercise and focus on the fact that although I can not eat salad and fresh
fruit, there are ways that I can stay as healthy as possible. I place blame on the med side effects rather than on
myself now. I allow myself the weight gain on steroids because one good flare and it goes away. I use ProActiv
skin care and it really keeps my acne at bay. All in all, what makes you feel good is worth its weight in gold!
3. Depression –Whether it is from steroids or the other medicines I am on or the fact that I have a chronic illness, I
fight this demon frequently. I can not fight my depression on my own. I know that. I need support from those
around me. Nothing pulls me out of my depression than the people on our message board and the people at my
CCFA group. It is just the simplicities that I find pull me back from the edge of the black hole. Laughing, crying,
joking and making light of what ails me turns my depression around. Sometimes it takes a while but with the
hands that I hold on to around me, they give me the strength that I sometimes can not find.
I described it best in a post that I will quote myself from: “It is very hard to walk the path of IBD. It is challenging to
say the least and it is beyond frustrating. There are ups and downs and more downs and then ups again. I think
that with a disease that has no cause or cure, it in itself is a black hole. It is what surrounds that black hole that I
believe keeps us all from going in...Each other. I think that we all stand around it, holding hands and as one of us
starts to step forward, there are ten more that step up to hold us back. Our families and friends are there too. Our
faith and our beliefs keep our grasp on each other tight. It is that grasp that I need so desperately at times.”
4. Anger – I think that most of my anger stems from our medicines. Most of my anger comes from the fact that
these horrible meds that I am forced to take, due to lack of options, make me have horrific side effects, long term
effects, and they treat my symptoms not my disease. I literally take a medicine that ups my risk of cancer. Now, it
isn’t decreasing my risk of cancer from my disease. It is just adding in another factor. I think the most anger
though is that if I don’t take these horrible meds, I will get sicker and could end up in the hospital away from my
kids and my family. Now, to combat the anger I look to advocacy. I do my best to create public awareness. I tell
everyone who will listen about IBD. Why? Because if more people know, more people will care and more will be
done.
5. Grieving – I never really grieved for the life I had before. Or if I did, I don’t remember it. I was 20 and I was foolish.
I didn’t do what the doctor told me and I made bad choices. Now, I am ten years in to it and can probably say that I
grieved it away with a cocktail and a cigarette. Those have both since become things of the past but at the time, I
didn’t get the full realm of what I had and what it could become. I know better now.
6. Sense of loss that you life isn’t ever going to be the same – I see it more as a loss of my freedom most of the
time. I don’t have the freedom to go and do like I used to. I have to plan out the simplest things because it will
affect me. I drink my coffee at a certain time in the morning so that I can run to the bathroom a number of times
before taking my kids to school. I don’t have the freedom to go camping in the woods anymore because quite
frankly, the forest doesn’t need that much toilet paper buried in it. Even if it is biodegradable. The comforts of my
home and my comfort zone are very important to me now and that zone gets smaller with the disease. Much
smaller.
7. Feeling alone – It is my number one goal to make people that have been diagnosed with this disease to not feel
alone. I was very alone at the beginning of my disease. It was a terrible place to be. I would sit on the toilet and fill it
with blood and have no one to talk about it with. It was very hard. It was scary. It was very isolating. Now
unfortunately but fortunately I have my sister who was also diagnosed. I haven’t been alone since she was
diagnosed. It is a tremendous support. Our site has added so much more support that I know in the depths of my
soul that I will never be alone again.
I think that is the one thing that makes me the most upset is that people with IBD feel alone. I hope that everyone
that feels alone can find us here and that they never feel alone again. I offer myself to every person out there with
IBD and you can call me or email me and I will always be here for you. Surround yourself with other IBDers. Go to
the Crohn’s and Colitis Foundation near you and sign up! Get in touch with others out there and that feeling of
solitude will go away and you will feel an overwhelming peace that you will never feel alone again.
8. Feeling different – I am different. I go to the bathroom sometimes 20 times a day. I puke my insides out just
because it is a new day in which my stricture might have swelled up too much and the food can’t get passed. I
have rectal and intestinal bleeding to the point that I am anemic. I have hemorrhoids and I use my 2 year olds
Desitin to calm them. I walk around every day with at a 4 on the pain scale of 1 – 10. The 4 is my normal day. My
bad days don’t measure on that scale. I have nausea like I am 6 weeks pregnant the moment my feet hit the floor.
I am a 30 year old mother of two and I can belch a sailor under a table. Am I different? Well, yes I am. But aren’t we
all different in some way anyways? I have brown hair and I am short and stocky. My sister is tall and slim with
blonde hair. I was different before I was even diagnosed.
I think that to counteract the feeling of being different, I have become more tolerable. I don’t get mad any longer
when I am waiting in line and someone rushes in front of me. Maybe they are rushing to avoid an accident? Maybe
they have IBD. Maybe not but it is easier to excuse now. I allow people to go ahead of me and I do not hold
resentment to the person who just cut me off. I have been there and I have barely made it myself. So all in all, we
were all different before we began. Now we can at least combine our differences to make them easier to bear and
easier to disguise!
9. Shame – I rid myself of my shame by opening my mouth. There is not a person in my life that doesn’t know that I
have Crohn’s Disease. I think that there is shame in silence and to be silent is to continue to feel shame. So, I talk.
I talk probably too much about it to the point that people may want me to be quiet. It is my one wish that those with
IBD feel no shame. There is nothing to be ashamed of in having a chronic illness. You didn’t cause it, you didn’t do
it and you should not feel ashamed that it happened to you.
10. Embarrassment – I think the moment I first felt embarrassed was my first c-scope when after it was all over
the nurse came in and patted me on the thigh and told me that I needed to pass gas in front of her to be able to
leave. Uh, excuse me??? Well, I did it. I was mortified. Cut to ten years later and the loss of all of my modesty in
having two children. I am in Target with my now four year old and while trying to pick out a birthday card I got the
unbearable urge to drop everything and run to the bathroom. I knew it was too far and I knew I wasn’t going to
make it. I did what I could. I grabbed my son and we ran into the “Family” bathroom. Sitting there my son was
yelling, “Mama, that is soooooooooo much poop. I have never heard that much poop before.” Oh yes, from the
mouths of babes. There was no faucet loud enough to drown it out. I cleaned myself up and then the moment
came when I knew I had to walk out the door. Well, as luck would have it, there was a line. A line for the family
bathroom. And yes, they ALL stared at me. What did I do? Well, I held my head high because not one of those
people know the strength that I have inside. To take a 3 year old to Target in the middle of a flare when I hurt so
bad and am so weak is triumphant. To be able to have made it to the bathroom in the time I did must have set
some kind of record.
And although I didn’t make it quite in time, it was the first of many dashes that I have made and there will be more
to come. I plan now for those moments with a change of clothes, wipes and such in the car. I keep Imodium on
hand and use it. I think the most important thing to do though is laugh. I laugh at myself all the time. I know that I
am not the only one! I know I am not the only one to have an accident in a public place. I know that I am not the only
one to have my hemorrhoids hurt so bad that I want to spray my behind with a fire extinguisher. It has taken me ten
years to get to the point that most of the things that happen are laughable. The others will pass and will be
forgotten. I will be embarrassed but then I will laugh about it and joke about it and I will turn the embarrassment in
to a way to make someone else laugh. It is true that laughter is the best medicine. It truly is for me. I allow my
embarrassment to humble me.
Dream your dreams and live your life to the fullest. It is okay to have the same dreams as before. It is okay to still
go to school to be a doctor. It may be hard but it is possible. It is okay to want to be teacher or a nurse. It is okay to
go to school. It is okay to do what you want to do. All you have to do is make the necessary arrangements to enable
yourself the easiest time possible. Line up your plans and put them in to action. Go after your dreams. It would
have been so wonderful to have accomplished them before, but now to accomplish them in the face of a chronic
illness is pure greatness.
I believe that the most important thing is to never lose hope. There is so much hope to be had in the fact of what is
on the horizon for us. There are new meds, new genes, new triggers and new ideas. There is so much to happen
and I pray that it is right around the corner. Because one day they will find the cause of IBD and once they know the
cause then they will find a cure. That cure and the end to all of these emotional challenges are on the horizon. It
will happen.
| Updated 11/14/07 |
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. |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |