can this be treated?? I don't want to lose my pouch
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Yes, they'll prob start you on a biological like humira/ remicade/stelara and also cipro long term.
Does this mean that I may have Caron's??
I have chronic ulcers in my jpouch, mainly on the suture lines. I also have chronic low lying inflammation in my pouch upon biopsy and no diagnosis of crohn's (six years with pouch) .
I do not take cipro or any other meds unless I am experiencing pouchitis. Are you having pouchitis symptoms? My pouch funtion is not bad except when I am experiencing a flare up of my stricture at my anastomosis, which raises it's ugly head at times (more often than not) .
My surgeon indicated most pouches have some level of inflammation in them at all times with no symptoms. I do not see this as a real concern for losing your pouch unless you are unable to control the symptoms and your pouch function is very poor.
There are different opinions about treating inflammation, even as severe as ulceration, if it isn't bothering you. If it is bothering you (or just needs to be treated) then the treatment depends on the location: if the ulcers are at the rectal cuff then it's called ccuffitis, and it's treated a lot like a tiny-but-troublesome case of UC, often with mesalamine suppositories or enemas. If the ulcers are elsewhere in the pouch then they are usually just a sign of pouchitis, and a 10-14 day course of Cipro will often clear it right up. Good luck!
Thanks for all the awesome replies. I am just now waiting on biopsy results and a direction for getting this under control. My symptoms are pouchitis like with constant urges to go to bathroom and pain and also nighttime leakage. No good night sleep in a while. ��
Becky, if it's pouchitis many people have enormous relief after just a few doses of Cipro.
When my GI scoped me last week and said he'd found pouch ulcers, my first question was "Does that mean Crohn's?" (as he'd mentioned Crohn's of the pouch during our last appointment when we talked about strictures). He said not necessarily, for reasons others have mentioned.
How ready are you to receive those biopsy results? I jump about a foot in the air every time my phone rings and then get annoyed when it isn't the doctor's office.
I am absolutely terrified!! He said we should have results in 3-5 days
There's a good chance that the biopsy results won't give you a definite answer. They are often just read as inflammation, more or less. If it were my body I'd want to have started Cipro already, and change course if the biopsies suggested a reason to.
I was wondering why he did not prescribe me anything. I am miserable. Just giving up on eating. It hurts too bad.
Becky,
Call your doctor's office tomorrow. Ask for a prescription of cipro or snother antibiotic. You should not be suffering like this. Let us know how you make out.
My thoughts exactly!!
I had my pouchoscopy by DR SHEN a few months after takedown, and he also stated I had ulcers at the suture line as well, he stated this is very "normal".
I have my annual pouchoscopy scheduled for July so we will see
Yes that is where mine are......
I have had scattered uocerations in the J Pouch for 23 years. I initially treated with rotating antibiotics and since late 2015 with Remicade. The Remicade significantly improved inflammation in the J Pouch. My scope this past Monday May 22 showed the Pouch continues to look good but there are uocerations in the ileum above the J Pouch which have been more resistant to Remicade. This pattern has been observed for a while now. However despite the chronic inflammation my quality of life is good.
Your biopsies will likely show inflammation but not cancer. J Pouch cancers are very rare and usually the area of concern is the rectal cuff. That area should always be biopsied (annually if your inflammation is chronic and/or you had dysplasia in the colon before it came out- I check positive on both counts).