First My History and Diagnosis:
When I first showed symptoms of IBD, it was July 2003, and I could have diarrhea up to 40 times a day, severe abdominal pain after eating, low grade fever (99.5 degree), and joint pain. It took 1 1/2 years of every diagnostic test until I swallowed a pill camera which found two small bleeding ulcers in my lower ileum. Finally I was diagnosed with Crohn’s.
I was then put on Asacol, but soon developed an allergic reaction. Then, tried Imuran (6MP) for one year before elevated experienced liver enzymes. By then, disease was in remission so went off meds. Managed disease with "clean" diet: all organic high soluble and insoluble fiber diet, lean protein, whole grains, no white/simple sugar or flour, no trans fats, no artificial ingredients or hormones, caffeine, etc.
Moved from CA to IA, new GI doc. He questioned if I had Crohn’s and ordered the more updated Prometheus Test which was conclusive for Crohn’s.
Nov 2009 had swine flu and then experienced severe left abdominal pain and chronic diarrhea and started shedding mucosal lining. Was put in Flagly by GP. Then, pain becomes worse, moves to right abdominal area, radiates to back. GP then prescribes Cipro three days later. He prescribes Toradol for pain which turns out to probably exacerbate my abdominal pain and diarrhea. Pain gets worse, GP orders CAT scan one week later. It is clean. Every time I call my GP in pain, he tells me to go to ER to get a shot of Toradol. I end up in ER four times in one week, ruling out appendicitis, bladder infection, kidney stones, etc. The doctors refuse to Xray by abdomen because of radiation exposure already with CT Scan earlier.
For most of my visits to ER, blood drawn was drawn for sed rate, white blood cell count, C reactive protein - all normal, which would normaly rule out infection or inflammation. I am not making any progress. I call my GI doc who had been out of town and ask for a referral for a new GP. I get in the next day.
By the time I see the new GP, I have been throwing up bile for one week, nothing to eat for two weeks, severe diarrhea for 8 - 10 weeks, with my bowel shutting down for the last four days. I am so severely dehydrated that I can't stand unaided. I have no mucous in my nose or mouth. He orders an abdominal Xray and my left colon is extremely distended (shows black on x-ray). My potassium and chloride numbers are way off. I am hospitalized with IV fluids and steroids. It takes two days on the highest speed IV fluids to start urinating!
I left the hospital after three days (they wanted me to stay five but the food was horrible!) and was put on 60 mg prednisone which I've tapered to 55mg. I just stared 50mg Imuran (6MP).
My abdomen is still distended and I'm grappling with what to eat. The prednisone is causing me to have formed, harder stools than usual. So, I've upped my fiber which I would not usually do during a flare. My anus has felt irritated for the last week or so, but then today, the pain was a deep throbbing, and upon examination, I found a huge blue/purple mass. Went to urgent care and turns out to be a protruding thrombosis hemorrhoid and am seeing a surgeon on Monday who may remove the blood clot. I’m afraid to have a bowel movement as it is extremely painful to sit, walk – it hurts just on its own. I also have some perineum pressure which is new for me. I’ve never had any hemorrhoid issues with Crohn’s … help – any ideas!!!!
What I learned from the above acute flare is that I never have elevated sed rates/wbc/CRP (my GI doc said he is the only Cohn’s patient he has ever seen this anomaly in) so I do not present like a normal Cohn’s flare. Has anyone else had an acute flare and had normal blood tests?
The CAT scan shows that I have never (was previously misdiagnosed twice) have had diverticulitis. I will never take Toradol again as it exacerbates the very problem it is trying to treat – abdominal and back pain. What I desperately needed from my first ER visit was IV fluids to give my bowel a rest.
I also need a GP who is a partner with my GI doc and can manage an acute care. I felt helpless, going to the ER four times in one week, only to be sent home, all the while getting sicker and sicker.
How do you get through an acute flare? I was ill equipped to know what to do. I’ve learned that most of the ‘sports drinks’ give me diarrhea. My new “cocktail” now is pedialyte (for electrolytes) and equal parts filtered water (the pedialyte alone tastes awful) plus a splash of no-sugar fruit juice. Small sips work much better than guzzling!