Crohn's Disease Forum » General IBD Discussion » No diagnosis w/extreme pain

10-06-2017, 08:42 AM   #1
Join Date: Sep 2010
Location: Pensacola, Florida
No diagnosis w/extreme pain

Ok so here goes. This may be long, but forgive me as I have so many issues and not answers to what is going on. I have been in the worst flare since I was diagnosed with crohns 11 1/2 years ago. I had my colonoscopy and endoscopy done the last day of Feb. 2017 and my doc said my colon has looked the best it ever has and my endoscopy was fine too. It started 2 1/2 months ago and I have went downhill ever since. The pain is completely indescribable right below my belly button and the worst of the pain starts right after I eat. I have had every blood test done (all negative), abdominal scan done (negative), CT scan done (negative) except for showing I have some impressive large growths (cysts) on my liver and inflammation on the left side of my large intestine. All kinds of stool samples (negative) except for blood in my stool. No c-diff, no infections of any kind and my doctor is at a complete loss. Prescribed me Prednisone which he just extended that for another month and norco for pain which I don't take until the pain gets so bad I feel like I am going to pass out. I have the runs constantly and my insides just shake and tremble all the time from the minute I wake up until the minute I go to bed. It does not matter if I have liquids to eat or solids, it does not stop the pain or the runs and within 15 minutes of eating, the pain gets so intense under my belly button, that I am sitting on the toilet for at least a minimum of 20-30 minutes with water and blood running out of me and it gets so bad, I feel like I am going to puke and pass out all at the same time. Feels like somebody is pulling all of my intestines out the front of my stomach. I just saw my doctor yesterday and he just does not know what it is and he is a very good and through doctor as well. I have no fistulas at all either. I do have tons of tiny fissures on my rear which are so sore, I can barely walk. He prescribed me some kind of creme I have to get custom mixed at a special pharmacy which I have not priced yet and it is actually for high blood pressure which made no sense to me, but he did explain it. I was in too much pain to absorb what he was telling me. This is the most miserable I have been since I have had this disease and have never experienced this ever with the crohns. Does anybody or has anybody gone through what I am going through and found an answer or reason this is going on like it is. I am ready to give up. I have almost lost my job because I just cannot work for the pain I have. I look fine, but I am definitely not fine inside. I am far beyond desperate for some help here. Anybody??????? I am terrified something else is going on that is hidden, but I don't see how it could be at the same time.
10-06-2017, 08:57 AM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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I am sorry for all you are going through. I hope you get answers soon and can feel better.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.

Crohn's Disease Forum » General IBD Discussion » No diagnosis w/extreme pain
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