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[Unusual Presentation]

Hello to everyone. I guess I'm a newbie. My story of Crohn's' is far from typical.
In 1992, I had my first colonoscopy. I was sick with dehydration and low grade fever The prep was very poor; But, the endoscopist reported continuous inflammation from rectum to 1/2 up the descending colon (L side) with a small
skip area. He couldn't see past the splenic flexure d/t the poor prep.
Recieved IV fluids subsuqently mesalamine enemas which worked wonderfully.
Then started Azulfadine (oral 5 ASA)
Remained on maintenance Az.... until in a stressful period of my life in 1995 I had the dose of AZ..increased to max d/t mild abdominal pain, cramping and mild diarrhea ..Ended up with pneumonia and severe anemia.
(Fast Forwarding here)---Switched to Asacol (doesn't have sulfa) no further anemia. Stayed on Asacol from 1995 having occassional flares in my IBD
which were treated with short course of steroids or mesalamine enemas
inducing remission each time.
In 2004, I stopped taking meds for IBD. Anytime I felt symptoms were coming on, Best diet, maximum rest and destressing kept the symptoms
in check. Until Dec 2014 when the above didn't work for my crampy LLQ
abdominal pain. My family doc gave me a short course of steroids.
remission attained until late May 2015. Then began to have relatively severe
abdominal pain with BM's (Strangely 1 BM/day) Soon BM's passed small balls
of stool with mucous (Still 1 BM/day) otherwise asymptomatic.
Fast fowarding, BM's suddenly stopped. None for 5days otherwise asymptomatic with normal appetite. Tried a saline enema with good
results (enema showed I was impacted). Unfortunately, subsuqent BM's
once again occurring with pain prior to the BM.
Had a colonoscopy June 5, which showed moderately severe inflamation in the sigmoid colon and mild inflammation in the ascending colon.
Put on Apriso (another brand name for 5 ASA i.e Asacol) Some improvement over two weeks. Pain with bowel movements stopped ( until today) but I'm having intermittent crampy LLQ abdominal pain along with occasional nausea.
I understand not giving someone steroids right away given this scenario. Infectious agents such as amoeba can cause patchy colitis (Although like Crohn's disease usually present with diarrhea, mucus ect.) I'm awaiting my lab and stool test results. I'm gonna call the GI doc after results to try to get him to prescribe Prednisone--unless stool shows something.
The maintainance of remission rate for mesalamine only for ulcerative colitis (UC),is approx. 65%. It is lower for Crohn's.
My sister was diagnosed with Crohn's colitis 3 1/2 years ago. She's been on
Asacol for maintenance and had only one flare. She was very sick and received IV steroids then followup mesalamine.
So, it appears that I've had Crohn's disease in very mild form for about 23
years! All things considered, one could say I've been lucky.

 

[Unusual Presentation]

In lieu of edit, mesalamine and Crohn's disease is only used for Crohn's colitis.
Small intestinal disease (i.e ileitis) is much more difficult to treat.

 

[DJW]

In lieu of edit, mesalamine and Crohn's disease is only used for Crohn's colitis.
Small intestinal disease (i.e ileitis) is much more difficult to treat.

Crohn's disease can be found anywhere from the mouth to anus. Crohn's is the blanket term.
It can then be classified further to include specific locations. Ileitis would be located in the ileum or crohn's colitis in the colon etc.

 

[Unusual Presentation]

Just a clarification for DJW. Crohn's disease can be a severe life threating and life altering disease. I know of someone who was in the hospital for 6 months getting Intravenous feeding d/t severe inflammation of much of her small intestine (Plenty of other horror stories in this forum)
DJW was quite right to say Crohn's can occur anywhere in the digestive system.---I limited my discussion to Crohn's Colitis.
By the way, I'm struggling with a new GI doc now. Mesalamine treatment alone
has only a 45-55% success rate of attaining remission of Crohn's COLITIS.
Meanwhile, I'm on day 17 post start of Mesalamine and I'm going to have to take it easy at work and probably make quite a bit less money.
Called doc today to try to get Prednisone (in my intro, I stated that I have relapsed before while taking mesalamine)
He won't give me Prednisone unless he sees me. Now I have to travel 85 miles each way on Fri. (2 days from now) to recieve prednisone.
A consistent problem with many doctors is that they've never been patients with a chronic condition. Prednisone (at 60mg) decreases my symptoms markedly within 2 days. (SHORT TERM in most people it is very safe) Why should I have to suffer for weeks to wait for a coarse of treatment that has only a 50% chance of recieving an adaquate response?!
Note I realize that there is a role in taking mesalamine for Crohn's colitis.
Almost all of the literature mentions it as a medication to maintain remission;
EVEN for mild colitis.