I'm sorry you're having so much trouble. Unless you find out what's causing your pain you can't predict whether surgery might help. "Pouch advancement" isn't the same as constructing a new pouch, so I can't tell what the doctor is recommending, and what the recommendation is based on. Do you have cuffitis?

If you have cuffitis (UC in the bit of remaining rectal cuff) and can't get it under control with medicine, pouch advancement can reduce the vulnerable tissue. It's generally hand-sewn (instead of stapled), and a "mucosectomy" removes most of the vulnerable lining. This procedure carries some increased risk of incontinence, which is why it isn't usually done as a first-line procedure. It can work very well, but only if it's done for the right reasons.

He has not given me an official diagnosis, just has tried over and over again to get the inflammation under control with no luck. He just mentioned this surgery of removing my pouch and creating another but I'd need to get a second opinion from this rectal surgeon he's sending me to in January. He then said, hmm it just seems like you had chrons from the get go! What!!
My husband is starting to think they don't know what is going on and just want to move me on to tge next person.

I think your husband has the right idea. Have you considered a vacation in beautiful Cleveland?

I think it would be folly to build a new pouch without any idea what's going wrong with the current one.

I think it would be in my best interest to try getting into somewhere like Cleveland. Answers would be nice because I feel I never get a solid answers, just a lot of maybe it's this or that etc... How hard is it to get into those known clinics?

Diagnosis always includes some "maybe it's this," but in skilled hands it drives to a conclusion, even if there are some blind alleys. I've not been to CC, so perhaps others can suggest a good way to get started there.

@Josh R.
Thank you for your advice and information, it really helps. Like I mentioned, I was confused and now I am just a little more confused with this info, only because my GI didn't mention the permanent end ileostomy. He literally said cut out the damaged, inflamed pouch, as we have approx 27" of intestine, and make a new one!!...?

You gave me a good foot forward to start on as far as asking questions with my current GI and whoever I can get into to see, hopefully one of the clinics you mentioned. I am not ready to give up and take the end ileostomy. Of course if I have no other options, then OK.

...I wanted to mention, he didn't use the phrase pouch advancement. I used that as my subject line because like I said I was confused as far as if what he suggested was called that. I definitely need a second opinion and I don't want to mess around with anyone locally, I want to see someone Josh mentioned.

I agree it sounds best to see a GI specialist closer to where you live and it sounds like Josh has given you some good alternatives. I go to Dr. Loftus at the Mayo Clinic in Rochester, but it's 3.5 hours away from me. Many have also been helped at the Cleveland Clinic in Ohio but it's even further from you. It makes it very difficult for follow-up appointments and annual appointments etc. to go to a facility too far away.

It is clear that you should go for a 2nd opinion. My GI of 17 years sent me to Mayo's after he couldn't get my cuffitis and other pouch issues to clear up using the textbook prescriptions. He said he was a generalist that treated the entire digestive tract and I needed an IBD specialist that focused on IBD diseases.

I hope you don't need further surgery!

Thank you. Do you still have your pouch? What did they do to get it under control?

lovedby2,

I am in the exact situation you are. I have been fighting chronic anal inflammation for over 2 years with no success. Pouch advancement surgery was recommended to me over a year ago and I am heading back to the surgeon next week after the holiday to discuss this again. I am not sure about you, but the pain for me the last month or so has been unbearable. I have bleeding, severe anal pain aLL the time that requires rectiv, licodaine numbing cream and hot baths. I can no longer use canasa suppositories as they are just too painful. I have been on Cipro for over a year.

I can post back after I see the surgeon. If you need advancement, they will do a mucosectomy and detach the pouch and drop it down and hand sew it. You should not need a new pouch. Do you have inflammation in the pouch as well or just the cuff and anal canal? I too think I really have crohns and not UC based upon all the anal issues I have had since takedown.

You described me to a T. The pain is unbearable and I too reach for the lidocaine but it doesn't always work, like you mentioned, it's so painful to insert anything in that area like canasas. Please keep me posted as far as what your Dr. Says.

Fortunately my cuffitis is under control, most of the time, with canasa daily and anucort on break through days. I can miss a day here and there but need to keep it under control. Canasa doesn't bother me.

I didn't try to use any of the foams I hear them talk about in here. Have you tried them Jeanne? I don't see how they'd work consistency because of the number of BM's we have.

I also got over the c.diff which was bad because I'd waited until my year to have anything looked at, that took me Flagyl off an on 8 months. I didn't get my IPS under control until a few months ago. It baffles me why I need to go on antibiotics sometimes to get it under control but I do. Once I started using prescription Imodium, Loperamide, like my GI told me to and changed my diet, on my own, to a softer one with less red meat I've been doing better. It's just been a 3 year observation of what works and what doesn't. I don't miss foods that make me feel bad. I don't crave greasy or spicy foods and I loved spicy foods before. It looks like I am one of those 3 year people. I still have adhesion daily pain, still have to treat daily for cuffitis or I will get a flare and have to be careful to avoid IPS problems but I've come a long way. 6 months ago I was considering pouch advancement surgery. 12/29 is the 3rd anniversary of my take down.

Cuffitis is horrible and and I don't know how jeanne has been able to stand the pain that sounds so much worse for so long. I hope you all find relief. I heard the other day that the anus or cuff or whatever in that area is one of the most sensitive in the body. I believe it as I can not believe how UC in 1-2 cm of cuff can be so painful, it's like the size of a quarter but hurts like hell! Then I see, if that are is messed with in pouch advancement surgery how we might be incontinent.

Oh no you don't need your pouch remove, just taken apart, the anal area stripped and hand sewn back. I had what you had 14 years ago. The pain was so bad I would cry. Just make sure you find a doctor that has done a lot of these. Your surgeon may not have ever done any that is why he is taking removal and makng a new one. One of the complications is anal in continence so u want an experienced surgeon. Probably at a large teaching hospital. I did not have any problems after this surgery and the pain was gone! I still get some small inflammation but it is managed with meds! never pain.

This is all good information and I will be bringing this up to my GI and the Dr. That he has referred me too. I'm not going with my original surgeon, as you mentioned, because i want someone who has jpouch experience. I'm in pain everyday and can't stand more than 30-45 minutes at a time. I need help and I hope to find help with this new Dr.