Crohn's Disease Support Group

I was diagnosed with crohn's after coming down with pyoderma gangrenosum! I probably was misdiagnosed as a child when a dr. said I was developing a stomach ulcer...however after a colonoscopy and biopsy it is for sure...I have crohn's! I'm curious how many others do not suffer from the intestinal symptoms as much as they do the joint pain and stiffness. And fatigue! is this really common? I find that I simply cannot function unless I get 9-10 hrs of sleep a nite. That's a lot of wasted time as far as I am concerned. I am not close to retirement age yet so I have to work. I am the sole support of myself. Do any of you suffer from resentment at having to give up life time for sleep time in order to function on a daily basis? How many of you suffer from co-workers who think you are exaggerating your fatigue and just simply do not understand THE DISEASE? I am really interested in hearing from you ...here or at my personal email address of: netflixqueen@yahoo.com

Maybe I should have joined a support group a long time ago....for some real understanding.

Please help with your inputs!

Post edited by: waltersbf, at: 09/14/2009 02:19 PM

I have found that nobody understand how you feel unless they feel it for themselves. I'm going on 20 yrs of people not understanding.

thank you for your info. It helps to know others DO understand. Do you know of any good informational sites that I can print info for to give to my work place on fatigue and stress?

Not really. If I need to find something, I just use google. I have been all messed up for quite a while, but I am just now learning about CD myself. I go to the Dr. tomorrow. I am going to have him test me for it. I do understand how you feel about other people though. They just don't get it. I don't know how many times I have been told "Can you hold it?" No! When I've got to go, I've got to go.

Yes and it's pretty sad when you know where the bathrooms are in every store you shop in!

Oh, I know. I should have a job directing people to the toilet.

I have more physical symptoms than intestinal. I sometimes have a constant burning sensation across my lower abdomen and back. I do not have diarria unless I am super stressed. My bowel movements are pretty normal, other than the fact that I go 3 times a day. For me it is more fatigue and muscle/joint pain. I have not had a follow-up with my GI since my diagnosis so I'm not sure what we can do for relief. I am hoping for B12 shots and some kind of iron supplements that I can tolerate. I have ulcers on my intestines so iron pills kill me! I also have anxiety and mild depression which I have learned can be atributed to Crohn's. That is kind of a relief because at times I have thought I was going mad!

OMG! your symptoms sound so like mine! not so much intestinal unless I get upset or stressed. In fact my dr told me a lot of people like myself who are on the heavy side get misdiagnosed because a lot of doctors assume if your not paper thin it can't be crohns....

Funny you should say that. I used to be very thin, but I suffered a "burnout" about 6 years ago. This was right around the time I was complaining about severe intestinal problems and was diagnosed with IBS. My doctor prescribed an antidepressant which caused me to gain 30 lbs. From then on I have been a bit chubby. I believe that I also may not have been taken seriously because I was no longer rail thin!

Having said that, I have to admit that the antidepressant took away anxiety and in turn, my intestinal symptoms improved.