Crohn's Disease Forum » Your Story » New to the forum-old to the Crohns

04-11-2014, 05:47 PM   #1
Second e
Join Date: Apr 2014
Location: Massachusetts
New to the forum-old to the Crohns

I just want to say I'm glad this Forum is here and reading through many posts you all seem amazingly supportive and warm.
I was diagnosed pretty late at 33 years old after suffering with pain that just kept getting worse starting when I was 20. Primary doctor didn't know what was going on and neither did all the specialists he would send me to. It took a full blow obstruction that landed me in the ER and a next day CT Scan to discover what I had. When the doctor came in to tell me, "You have Crohns Disease." I exclaimed, "Yay!" clapping my hands, "What's that?!"
A few years later, after failing getting better taking the standard meds, I had a portion of my ilieum (10") removed at age 36. I felt great, I mean absolutely fantastic for about a year and then found out I was pregnant. Unfortunately for me my Crohns came back with a vengeance about 3 months after giving birth. I have been going through a long struggle trying to get this under control because I am at the end of my rope dealing with such severe pain. Glad to be here!
04-11-2014, 06:57 PM   #2
Senior Member
pink&green's Avatar
Hello and glad you found the forum have you spoken with your GI about your recent flare? Are you currently on any medication for your Crohn's?
Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

04-14-2014, 08:49 AM   #3
Second e
Join Date: Apr 2014
Location: Massachusetts
Hi! Thanks for the welcome! I have spoken to my GI and have done a series of tests again because about 3 years ago I started having what seemed a different problem. Generally when in a flare up I don't seem to feel pain until 8 to 12 hours after I eat. But now I'm getting pain within an hour after eating so I thought a different area was being affected somehow or it was something different. I went through months of testing and the only thing that showed up was that my affected area in my intestine was a slightly smaller diameter. I found a regular MD to go to as well and he thinks I may have some condition where my stomach lining is "allergic" to something and that is causing my discomfort. I know I'm being bad, but I am soooo tired of the process of getting no results and still being in pain that I've given up for a bit. I have been on medications before, Asacol, Sulphasalazine, Remicadee infusions and nothing seems to help except when I am put on Prednisone. Last time I was on Prednisone and I was starting to wean off and the pain came back as soon as I was down to 20mg a day, so I was told to up it and stay on it. It took me about 6 months before I could get off of it and I had gained so much weight I didn't recognize my face in the mirror. My joints start to ache as well while on it, but it's the only fail safe that works so far, but I've heard horror stories about being on it long term. As soon as I get up the energy to start pursuing the cause of pain again I will probably be looking for a new GI doctor. I hate to start fresh again, but it may be what is needed. Currently, I am only taking Imodium AD to keep me less frequent in going and I'm eating a very low fiber, no nuts, no seeds, no skins diet. Had a GREAT weekend and was able to eat thrice without issue.

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