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Sick for a decade, still no relief

Hi everyone. My name is Hillary and I have been dealing with inflammatory bowel disease for nearly 11 years. Dealing with may not be correct... really, I have been suffering, and my entire family has been suffering right along with me. I have had a myriad of diagnoses by various doctors, everything from ibs to colitis to rare foreign diseases. I have had some doctors tell me its all in my head, while others suggested I just have a total colectomy. I have had temporary ileostomies, resections, and been on what seems like every medication known to man. My symptoms include diarrhea, rectal pain and bleeding, abdominal pain, and fatigue. I cannot eat without becoming horribly ill. I feel like I spend more time in the bathroom than anywhere else. I haven't been able to work since 2011. The pain is so excruciating at times that all I can do is lay there and cry. I recently started seeing a new doctor whom I get a really good vibe from. He is positive that I have Cohn's. So I have been taking Cimzia and prednisone for about 6 weeks now, but still no improvement. He said it could be another 6 weeks before I notice a difference. I feel... not terribly hopeful. I know that is a poor attitude to have, but I am so tired of getting my hopes up just to be let down. I am so tired of being sick and not being able to take proper care of my family. I feel worn out and discouraged. I would love to hear from some people that have been in similar situations. It would be great to mot feel so alone. Thanks :)
 

DJW

Forum Monitor
Hi Hillary and welcome.

My heart goes out to you. You've been through so much. That takes such a huge toll physically, mentality, and emotionally.

All I can say is don't give up hope. Look for small victories everyday.

Check out our undiagnosed forum. You will find a lot of great people there who can relate to your situation. I can't post a link on this device or I would.

Sending you my support.
 

Lady Organic

Moderator
Staff member
Dont give up, there will most likely be a solution. First a doctor you get a good vibe, is the the first step, so thats great news!!
I was really depressed too when my arthritis started 3 years ago and was getting confusing diagnosis by rheumy, no treatment seemed to work, to finally understood it was crohns arthritis. With time, symptoms gradually decreased, and now, it has come to a minimal level, which is a lot more acceptable.

what dose of prenisone are you taking and since when?
 
hoping that you consider also using some dietary modifications to help reduce your symptoms, it can really help in addition to drugs. Read the book breaking the vicious cycle, i have used some of these concepts to manage my disease for 6 years and never had any complications, i have also used little to no drugs. My advice is to do both and do everything you can to see what helps. removing refined sugar and sugary fruits has been the most helpful of all advice ive heard to reduce symptoms of diarhea, avoiding milk sugar(lactose) will help reduce diarhea quite a bit.
 
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