people's opinions about crohns

I had a conversation with a friend that frustrated me today. I was diagnosed a long time ago and then had a great remission for years. This past year I have been flaring (ignoring a lot of the early warning signs - fevers - sore joints - more D - telling myself it was nothing and that I would be fine) until it built into a major flare on my holiday and for the first time I am on prednisone and trying to figure it all out (along with a small bowel follow through that showed narrowing in the ilieum and cecum).

Anyway, as we were talking today she basically suggested that "lifestyle" and "being connected with my body" would be really helpful and I felt basically blamed for having crohns and like it is something that is / should be within my control or that I manifested somehow. No doubt stress impacts crohns, but it doesn't cause it. I am the kind of person who mistakenly believes I can control things that I can't (which actually harms me because then I ignore symptoms and go on holidays when I shouldn't). If anything, I need to believe LESS that I can control this and accept the fact that I have a disease that likes to rear it's ugly head when it wants, and I need to get medical intervention more often. Sure, I'll do what I can to be healthy - but this isn't my fault. I have been really constipated on the prednisone and when I told her I hadn't gone in 5 days and didn't even have an urge (my bowels felt frozen) she even seemed to suggest that somatic counselling might help the constipation. Seriously?!

Crohn's crosses all personality types, ages, people, etc. No matter how stressed etc people without crohns get they can't "manifest" strictures, narrowing, anemia, and fevers!

How come we often get blamed for our disease? So frustrated...and sad that this is the way she thinks. Now every time I get sick I know I can't go to her for support because I will be thinking that she thinks somehow I have "failed"...
I'm feeling sad and hurt that a good friend was perceiving me that way...



The good news is I "manifested" a release of the constipation today (through the use of an extra dose of lactulose on the advice of my specialist)...

Your friend is utterly wrong, but people will believe what they believe. And what they believe nowdays is that you can control everything in the universe with the power of positive thinking alone. This includes diseases, of course. Just think yourself better and you will be better. It really is as simple as that to them. You can reason 'til you're blue in the face that Crohn's stems from a faulty immune response, triggered by any one of a thousand, currently unknown, factors, and that there is a genetic susceptibility towards having the faulty immune response, but I suspect it will be as water off a duck's back.

Stress is also part of life. To have a stress-free life you would pretty much have to be a monk living alone in a cave, practising transcendental meditation 18 hours a day. Stress, in itself, is not necessarily a bad thing. It only becomes bad when you start to feel extremely trapped, anxious, worried, etc. and there is no obvious end in sight. But it does not cause everybody to start getting serious physical diseases. Some folks who live the most exemplary, stress-free (as far as possible) lives still end up getting horrible diseases, while others remain in reasonably good physical health, no matter how traumatic their lives. It's not hard to think of examples.

That said, too much stress undeniably has a short term impact on some folk's bowels. I don't roll that way, but stress and anxiety will go straight to some people's guts. In that sense, stress can worsen existing Crohn's flare-ups. I doubt it has any significant impact on the long-term prognosis of the disease, however. I wouldn't rule it out absolutely, but I doubt it.

Phew. *collapses* Anyway, with regards to your friend my advice would be to just not talk about your disease with this particular friend. I know, it sucks. But not everybody will be sympathetic/receptive to your disease. You have to find the ones who are.

I also think that part of this belief that our minds control our bellies is based on thousands of years of not knowing anything else. It took something like 20 years for the medical establishment to believe that H. Pylori causes ulcers, instead of "worry."

As a young teen I had awful stomach aches and the only advice I got from my parents and the GI they consulted was that I should "not keep my worries inside so much."

Now that my 10 year old daughter has the same pain, I have put her on a PPI, talked to her about lactose and GERD, and NEVER NEVER told her to stop worrying. Of course, it is always a good idea to think about your stress when you are feeling badly; self awareness is the first necessary step to emotional health. But this has very little to do with stomach aches or diarrhea or IBD.

I can sympathize. My father is a physician (retired for 20 years now) and when I told him my daughter had been diagnosed with Crohn's, he immediately told me I had over-scheduled her and stressed her out.  Wow, how's that for support?  I don't talk to anyone about her disease now except her GI.

I had a friend the other day ask me if anyone had "told me to eat an apple a day" to fix my Crohn's. I nearly laughed out loud... I tried to explain that actually our specialist *doctors* advice Crohn's patients to avoid most fiber unless your body does alright with it (low residue). I mean, I can eat an apple without trouble, but the idea that it might "fix" me is so silly. I could not believe it... I can't count the number of times friends say something that is off-base. It's just ignorance and their own fortune that they've never had to actually *learn* about the disease. Most of them are ignorant about all chronic illnesses, Crohn's being only one.

Hugs to you! It's always good for a smile/laugh, once it stops hurting that is!

I always get told that I need to eat more fruits and veggies and I would feel better, Believe me, I wish I could.

This is why forums are so useful because people who don't have this DD just don't understand. In fact, I didn't REALLY understand until I had my major flare this year. Life was not a bowl of cherries before but OMG I had no idea how bad it could get.

Advice: With a very serious burning eyeball stare tell your friend " YOU have NO idea what this disease is like and around the world even in 5000 year old chinese medicine NO ONE knows how to cure it! I know you mean well but this is NOT my fault and isn't cured by tutti fruitti yougurt.................."

Even my mother, a nurse, didn't understand. I have learned to forgive the ignorant but I don't let them get away with it whether I like the person or not.

People blame us for this disease for one reason. It makes them feel better about their lives. They aren't worth your time. Sorry, I am 58 and I have heard everything from a physician telling me just to go home and relax (1973) to if I could just find the right foods, I'd be fine. The upside is that I learned not to let it hurt my feelings and I don't try to defend myself. Over the years, I became content. We live in a different world, but that world can teach alot! Hang in there.

I just had to chime in on this thread as well since I've also heard everything under the sun in regards to Crohn's disease. People who don't have it simply do not understand what it is like. That's all there is to it. I think they make the association that since it is digestive in nature and we can control what we put in our digestive system then that= changing your diet will cure you. Of course some people have trigger foods but many (like me) can eat anything. Specific foods are not my trigger although I am always trying to improve my diet and eat natrally and healthfully. It seems so obvious to some people that it must be something lifestyle or diet related, how can it not be? But if it were that easy then I promise you I would not be in the position! Also I think another factor is the fact that everyone's Crohn's disease manifestations are very different, so if they heard somewhere that a friend of a friend had crohn's and something like a lactose free or gluten free diet worked for them, then they think that would be the case for everyone. Also, a lot of people with very active disease can still look normal and healthy so it's hard for someone to understand how sick they truely are. Crohn's disease symptoms and triggers both can vary quite widely and even change over time. It's just too hard for other people to really realize what we go through.