Community Forum

 I know crohns is tough to live with; but I sometimes feel guilty complaing when i know there are other people that have desieses that are so much worse.

It helps though to speak to others who can understand what you are going through. Even though i have been on meds for years my stomach problems never have fully disapeared. The newest thing i have been experiencing for the past three weeks are loud stomach noises-- im ean they are so loud people look at you. my stomach is huge-- though my doc saids there is no inflamation, go figure.

I just hope i can get some of the symptoms under control.

 Reply posted for cdpgirl.

It's hard not to complain, but I don't want others to feel bad for me. When I first told my boyfriend he was very protective of me. When I would go out and do things he would get mad because I was 'sick' and it could put me in the hospital. 

 Reply posted for stuckonyestrday.

Hey Liz.

I recently had an issue with a friend because they didn't understand my attitude about having Crohn's and feeling misunderstood by others. I told them I wished people would understand that I have this disease and how it effects me rather than doing things to make me feel worse about it in the tiniest of ways out of ignorance. I said, I felt so weakened mentally sometimes because, for example, my father walks faster than I do (joint pain), or because my family is physically competitive and I am excluded from their aura of acceptance, or that I live in a dorm and everyone offers me junk regardless of my statements about the disease, etc; mainly I felt left out from feeling connected to humanity because so many connect with one another through food and activity. Especially through food, as it is included in society as a part of many celebratory and spiritual events/experiences. 

My friend thought it was a bad attitude to have, wanting people to treat me in a way that was more Crohn's-aware after I informed them of the disease, and he told me, "maybe it's because I haven't been there, so I don't know where you're coming from, but I don't like what you're saying."

So I realized... (after being mildly upset by the friend "perpetuating" my feelings of misunderstanding rather than getting it and being there for me as a friend "SHOULD" :P) that I could embrace his honesty, in that my Crohn's-free friend is right; people who aren't experiencing this aren't going to understand. There's going to be a lot of misunderstanding between myself and those who don't have Crohn's as opposed to myself and those who do. I understand that much now. And so if I want to be understood... or "complain"... I come here... :) where there's a lot of support, understanding, and wonderfully informative complaining.

Take care and stay in the community; it's soul-food.

=Carla

 Reply posted for liz.

Like everyone else has said, I understand completely. As far as the noises, there are times I've been in my college classes...for example taking my last final exam...and you just feel like everyone around you can hear it (even if they can't). Either all eyes are on you are you feel like they are. It's as if someone passes gas and gets embarassed about everyone looking at them...except for us that sort of thing happens all the time.

And for the complaining...I get that too. I tried to explain to all my friends so they'd understand in case of accidents/emergencies where I disappeared to and all that. But sometimes I feel like I talk too much about it or like people might think "Okay, so you have Crohn's, get over it...there are worse things." The thing is though, I've never had any medical issues before this so it's still all so new to me even though it's almost been a year since I first had symptoms. At one point, a friend of mine was diagnosed with cancer and I just thought "Wow...and look at what I've been complaining about. Maybe there's no cure but at least it's not fatal." But now I just try to realize..you know what..there IS pain, it IS serious, and your health DOES suffer from it...your life DOES change. And I think we do need to remind people of that sometimes because it's easy to forget. Don't get me wrong though, I'm very thankful for the health I do have, and that my situation is not worse off. But I can't help being afraid of what a future with Crohn's might mean for me. I'm terrified about the possibility of having to have surgery. =(

 Reply posted for liz.

I know exactly what you mean when you feel like you're complaining too much to others. I'm always struggling to not sound so much like a wimp sometimes. It's a good habit to believe that others have it worse, because I think it helps you appreciate others while adjusting to a troublesome lifestyle with crohns or colitis. But honestly, if I were you, I wouldn't focus on making people uncomfortable. If they know your situation well, they understand. If they don't know what your deal is, it doesn't really matter what they think of you anyway.

 Reply posted for liz.

I know how you feel Liz, and dont feel any remorse for complaining, because it can be the best thing for you to get your feelings out.   I am 22 and I have Chrons Disease and have had it for my entire life.  I feel what you go through with the stomach noises.  Its hard to be in a quiet college classroom when your stomach is making gurgling noises.  I end up fidgeting and try to distract peoples attention when I think they hear it.

 Reply posted for liz.

I wouldn't use the word "complain" -- the fact is you have a disease -- a serious disease -- and merely telling people you have it is not complaining.  I feel strongly about this, because one of the reasons I'm in as bad a shape as I am currently, is because I never shared w/ my friends and loved ones the pain and anxiety I was going through.  I have been complaining a lot lately, and I feel better that those closest to me are aware of my condition.  Good luck!

 Reply posted for liz.

I know too well what you mean about the noices. When I was working and in the middle of a meeting my stomach would go off making all these loud noices and everyone would look at me like I must have skipped lunch. My undertanding is that it was caused from a stricture and that food gets stuck and then you start with the noises. Ask your Doctor about it.

One of my daughters was diagnosed about 6 months ago with Crohns and now she knows what I go thru and we both find it nice to have each other to talk to about how we are feeling and what we are going thu.

 Reply posted for liz.

Why compare yourelf to others? Is the pig feel guilty, shameful, or inadequate because it has a shorter neck than the giraffe? NO! Your problems may seem minor to others but the fact is it's happening to you and not to them so that makes it major!!!!! I think you deserve to feel bad about your situation. Yes, there may others out there worse off than you and it's great to appreciate what you have but equally there's others out there that have it better off than you and there's nothing wrong with wanting a better quality of life. After all it's the squeeky wheel that always gets the grease. So, if you don't speak up you shall not receive. I always figured there are only two reasons people complain about things. 1) They are looking for a solution i.e. sugesstions from others. 2) They want to be understood. Think about that.

 Reply posted for liz.

TOTALLY understand...  I have pancolitis, no fun, but I am managing well and hardly miss a beat!  I am 100% diet at this point, no drugs at all and in full remission, and of course really loving life (it's been a rough year and a lot of different drugs).  For your stomach noises and bloat I would really look into your diet and figure out what is causing in.  I would suggest taking out dairy for a bit and carbonated drinks, that seems to cause a lot of bloating and noises for me..  I think sometimes the sugar can cause it to?  Good luck, it's always something, isn't it!  I feel your pain! 

 Reply posted for liz.

I know how you feel about complaining.  But what i've come to realize is this is a disease that there is no cure for and it really does effect your life.  So just like some one else has a disease it effects them in different ways as well.  I think it helps to be able to talk to others who have it to really understand what you are going through.