Aggressive treatment for crohn's

[Jane8808]

I am a 46 year old desperate to save my j- pouch!16 years age I was diagonsed with ulcerative colitis. My entire colon was removed . I had a temporary iliostomy then 3 months later experienced a successful reversal. Today I am recovering from a ruptured bowel, I once again have an iliostomy, and have been diagonsed with Crohn's disease. The first line of treatment was 4 weeks on  Pentasa and Rowasa. Following a scope last week, the crohn's is clear in the small intestine and I am feeling pretty good. (still 30 lbs underweight). However, the j-pouch is still inflamed. What treatments have been successful? My doctor is discussing enbrel, humara, injections to try to save the pouch. I am willing to try as long as I am not setting myself up for serious side effects from the meds. Anyone have a similar experience?

[Jane8808]

Wow. So let me clarify, you were iil ,diagonsed with UC, had colon removed, given a j- pouch, right?
And now jpouch is gone due to  pouchitis( inflammation)? And they think you had Crohn's all along? WOW. I thought i was the only one that felt like a serious medical misdiagnosis .
8 Weeks ago, I was told I had crohn's all along instead of UC, too. My pouch is very inflamed and I am being sent to Clevland Clinic to get a second opinion on how to proceed saving it. They question pouchitis too.
Over the years I took cipro and probiotics to control the pouchitis. It seemed to work until I had a perforation in July.  I was a bit slack on my diet over the years, but Now I avoid soda's, and limit sugar and dairy.
The treatment discussed 2 days ago was taking both humara and embrel combined to attack the inflammation and save the pouch.
1. Did you ever have a combination treatment?
2. They say you still have pouchitis, with no jpouch?
I 'm not giving up. Just trying to figure out what's ahead of me. Ph 4:4-6 is my support. I will keep you in my prayers too.

[Bucketman]

I can appreciate where u are coming from.  First diagnosed with UC, then went thru every medication known to control it.  Was losing battle & my life.  Finally had large intestine removed & later the j-pouch.
Inflammation is constant. Dr calls it Pouchitis, now taking probiotics in the billions range & it seems to help a small amount.
Oh then my Gastr physcian said oh i think you have Crohnes instead of UC.  Go figure!!!  ( I am a little sarcastic, but then I have earned that little bullet lol)  Sugar, carbonated drinks, smoking, all these things are sooo off limits. The  Cimzia injections have worked for awhile, now being switched  to Humira.  I have to keep trying because i know somewhere out there a cure is waiting for us. My family & I will keep you in our thoughts & prayers.  Keep smiling:))  NEVER GIVE IN!

Bucketma

[avtmom]

My son (12 yrs old) has was on Remicade for about a year and then we moved on to Humira.  Neither were able to control his Crohn's, BUT he did not suffer any of the "worst case" side effects either.  They were both good at controlling his pain and clinically he looked really good.  Crohn's has been a very sneaky adversary for us...difficult to identify, find and control.  We are looking at Tysabri now.

I wish you much success!