Community Forum

Hello everyone, I'm new in this forum, though I've been reading it for several days now and find it really helpful. Makes me feel less alone :)

I decided to join today because I just had my worst ever Crohn's disease flare up after my diagnosis in 2005 when I was 15 years old, and coming with this flare is also a terrible sense of guilt and I just wish I could talk to someone about this feeling who will understand me. I feel like if I would have been different, more attentive to my contidion it wouldn't have gotten this ugly, to the point now I might need surgery.

When I was diagnosed, I was told that if I behaved I might never need surgery. And now, maybe I do need the surgery after all. But I have read that around 75% of Crohn's patients need surgery at least once in their lives, so maybe it is a result of Crohn's disease and I am not to blame?

Can someone please tell me, have you ever felt guilty about what's happening to you because of your Crohn's, and how do you cope with it? The least I need is to feel like this is my fault. But I just know that I am to blame at least to some extent because I wasn't insistent enough in getting my treatment (so many difficulties with my health insurance not covering my medications, finding a doctor, etc...). Makes me wish I could turn back time and do things differently. I feel so guilty and sad about what's happening to me, I just need some words of support. Thanks to anyone who can reply to me. 

Reply posted for sonya breeding.

i was diagnosed 3yrs ago try different options none seems to work try to stay health and eating healthy aswell have help alot. what have you taken?

Reply posted for CrohnnieGirl.

Hello!  I was diagnosed in 1992 at the age of 22.  I was actually shamed by family members saying I ate the wrong foods....etc.  I was so sick, I thought doing my student teaching was a waste of time.  Luckily, I went into remission for about fifteen years.  Having a mild flare up now, but thinking positively.  26 years later, and in one year, I will retire from teaching.  I learned to accept what I help and decided that I will control my disease, it doesn't control me! I think overall this disease has made me a stronger person.  Hang in there!

Reply posted for CrohnnieGirl.

I was 14 when i was diagnosed with ulcerative colitis am now 21. I feel like if my mom had another kid maybe i wouldnt have this. i think why do i have to go through this and take all this medicine. My medical bills are stacking up from office visits and bloodwork and hospital stays. I cant even medically work now i am just stuck at home with nothing to do and no one to talk to who fully understands wat i go through. I completly understand the feeling of guilt.

Reply posted for CrohnnieGirl.

I’ve never had feelings of guilt. You have nothing to feel guilty about. I have had occasionally feelings of “why me?”  But I have never been one to feel sorry for myself. There’s nothing like sitting on the lobby of your hospital for a while and watch all the really sick people walk, limp, roll by.  I saw a guy I recognized from church go by, he had both legs amputated. He was diabetic (as am I) but he had it much worse than I do.  And I don’t have cancer, which my father battled three Times.  There’s always someone worse off than you are. And there are new meds. When I was dealing with colitis there were none of the bio.logics available today.

Reply posted for CrohnnieGirl.

I hate to hear you are feeling this way...I am 29 and was dignosed when I was 12; have had 1 surgery, tried every drug FDA approved and not approved, some multiple times - don't respond, have never been in remission, probably around 10 hospital stays just this year and on the cusp of another surgery. Due to becoming sick at such a young age, I have never lived on my own financially. Thankfully I am blessed with amazing family that are able to help but I feel guilty all of the time  - feeling that I am the biggest burden to those I care about and love. I do not feel like I did anything to deserve this disease and I truly hope you do not think you brought this horrible disease onto yourself. I do not know if you are at all spiritual, but even though I have spent years mad at God, feeling forsaken and forgotten, I know he would never "punish" me by throwing Crohn's at me. I know it sounds dumb but would you tell a cancer patient that being sick is all his own fault? I hate the double edged sword Crohn's disease is when compared with cancer...People have a basic understanding of cancer, possible physical and emotional tolls, and sympathy, all in all. Severe Crohn's disease?...not so much. From a fellow guilt-laden Chronie - THIS IS NOT YOUR FAULT, you did nothing to deserve this hell,and even if you had listened to the doctors more tentatively before - doesn't mean anything would be different than it is now. It is no way to live in the land of if's...just torturing yourself. Have you told your family and friends you feel this way? If not, do you have a psychologist and told him/her? I was raised you don't talk about feelings...My IBD clinic while in college required me to see their on staff therapist. Unfortunately, that did not end well, but I have come across therapists since who have made the world of difference. Even just saying some of these negative thoughts outloud to another person was helpful.