• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Crohn's Nightmare

I am new to this and hope to gain some sort of support from other people that have Crohn's disease. I was diagnosed with a mild case of Crohn's disease back in April of 2011. What the doctor calls mild.... is certainly not what I have in mind for the word mild. I have always had stomach problems, as long as I can remember, even had my gall bladder removed many years ago. In 2007, I was told that I cannot tolerate gluten and have been gluten free ever since. THAT was hard, however, this Crohn's thing has thrown me for a freaking loop. The doctor offered no assistance, except wanting to put me on so many medications, I had no idea what was working and was was not. Since losing my job and insurance, in August of 2011, I have experienced more problems, based on stress and diet, I now know. I read a book on Crohn's a while ago and it indicated that a carb-free, sugar-free diet was best for those with Crohn's. I have been on this diet for 2 weeks and I hate food more than I did before. Also, in the last 7-8 months I have dropped 55 lbs, but have leveled off, thank god. However, it is SO frustrating to try and find things to eat that will not result in constant diarrhea, pain and cramping. Now, I eat only sugar-free foods, leaving me with chicken, eggs, fish and fresh fruit and vegatables. Very boring. My social life, what it was before, is now non-existent. I have a HUGE phobia of public restrooms, or those that are not my own, and fear going out of the house for any longer than an hour or so, based on the fact that I may have to use the bathroom. I'm so tired of living with this disease with little to no results and am frustrated with my doctor so much, that I want to find another one. But, to do that, I would have to start the process all over again, not to mention that I no longer have insurance. My life for the last 18 months has been miserable, lonely and depressing. Even thought my husband and family try to understand, I do not think that they can appreciate the pain and suffering that I go through. I have been taking Cimzia for almost a year now and see really, no results. I makes me nauseated and I lose my appettite for most of the month, between shots, and towards the end of the month, I begin to see signs of my appettite returning, however, a few days later, I am due for another shot. I am so done..... I don't know what else to do. :ymad:
 
Welcome to the forum and I am sorry you are having such a difficult time. I agree with you in that unless you havevthe disease people including physicians don't have a clue what kind of pain we go through. I think everyones pain tolerence is different but all patients with crohns have excruciating pain. I have had several accidents when I could not make it to the bathroom in time and it is very embarrassing but we can only do the best we can. I have been fighting this disease for 20 years and have tried every medication possible even though I get discouraged I find some comfort in talking with people on this forum to know that we are not alone and other people are goingvthrough a lot ofvwhat you are experiencing. My advice is to stay strong and head up as hard as it may be and learn as much as you can about the disease. There are a lot of good people on thisbforum with a lotbof experience that can help you.
Good luck!
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum, sizzlesteph!

I'm sorry you've had to go through so much. :(

Have you tried any maintenance medications other than Cimzia? If it isn't working for you, I'd suggest you talk to your GI about trying something else.

Is the diet you're trying helping at all? Our food sensitivities and success with diets varies quite a bit from person to person. There's no "right" diet for Crohn's. You can read about other diets' and forum members' experiences on them in the Diet, Fitness, and Supplements forum, here.

:hug: I hope things improve for you soon!
 
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