The diagnoses that immediately come to mind are:

Cuffitis- inflammation of the retained rectal cuff, a return of UC, pretty common. Treatment is mesalamine or hydrocortisone suppositories.

Fissure- a tear in the anal anal that causes severe pain associated with bowel movements.

Anal Stricture- a constraction of the scar at the anastomosis (surgical join) of the pouch and anus.

Jan

Hi Jan
I too am having bleeding. It was once a week but now it seems to have increased to every day.
I noticed that you had a few ideas as to what it could be and I am wondering if all of them need to be diagnosed through a scope?
Unfortunately my amazing surgeon retired and I am having a difficult time getting an appointment with the new surgeon and no one else will see me.
Thanks for your help...again.
Crick

Actually, all of them should be able to be reasonably discerned by only a digital exam (finger sweep). The fissure more so by visual inspection of the anus and everting the anal canal.

Really, no one else will see you? Have you tried seeing a gastroenterologist? These really are not surgical issues (at least not in the early stages).

Jan

My gastro doc who referred me to my surgeon told me he does not see J-Pouch patients.

I have an HMO plan and have to go where they send me.

I find it a little shocking that a gastroenterologist just flat out will not see j-pouch patients! It seems nonsensical to me, but I guess they are entitled to define their own practice. I wonder if it is due to some sort of "turf war" sort of thing going on in that area. I have heard about a number of colorectal surgeons telling their patients to see no one else but them once they have surgery.

I have Kaiser HMO, and I am required to see Kaiser physicians only. I never had any trouble seeing a GI after my surgery, although some were more knowledgeable than others. Plus, any of them could confer with my surgeon as needed, since it is the same system, and records are shared.

I do know that other HMOs can be more limiting, and you are confined to the group you choose. I wonder if you could ask your GI if there were any other GIs he could recommend that would accept j-pouch patients? Did you ever ask why he did not see j-pouch patients? To me it is like refusing ileostomy patients.

I guess I live in a dream world...

Jan

quote:

I find it a little shocking that a gastroenterologist just flat out will not see j-pouch patients! It seems nonsensical to me, but I guess they are entitled to define their own practice. I wonder if it is due to some sort of "turf war" sort of thing going on in that area. I have heard about a number of colorectal surgeons telling their patients to see no one else but them once they have surgery.

Just to perhaps shed a little more light, I got the impression from the GI resident I saw earlier this week that there is a belief that j-pouch patients take up an inordinate amount of office time, and that is perhaps why some GIs might choose to limit their practice. I saw the resident with my GI and a med student since it's a teaching hospital, and the resident basically made a comment to the med student that "pouch patients often have problems and need to be seen repeatedly."

So we might be seen as an annoyance to some GIs, particularly those who aren't themselves interested in pouches. That being said, I also know that surgeons can be rather territorial - it could be that is a factor as well.

Makes some sense I guess, in a business management sort of way, since GIs tend to run busy practices. But I would also think that folks with any of the other chronic diseases, like IBD, GERD, and IBS would also be repeat customers. But the j-pouch and other gut sugeries are unique because of the overlap of surgical and medical care, and some coordinating may be needed. Plus, each doctor tends to have his own area of special interest, like liver, stomach, or whatever.

My own GI is only taking liver disease patients as new patients now, although he honored my request to see both my husband and son.

Maybe even specialty liability plays into it too, like how many GYN docs have stopped doing obstetrics in their practice.

Just a curiostity...

Jan

Exactly; some of these doctors become so sub-specialized that they tend to nitpick what comes in (e.g., I work in insurance and we send clients for a lot of disability assessments. One of our consulting orthos has limited his practice to hand surgery only--and he whittled that down from upper extremity *LOL*). However, on the other hand, I also believe that a doctor who previously treated you, even if he/she isn't qualified or able to treat your current problem, that it is their responsibility to refer you on a to a physician who is capable, rather than just leave you hanging. GIs in particular are busy and it's sometimes hard to get a foot in the door, so your former doctor should advocate for you and help you out. Just my opinion, though--and perhaps in an ideal world.

If it helps, any (general) GI so content with professional mediocrity that they exclude J-pouchers is one you're better off without, IMO.

My GI did not state "Why" and I did not ask. About 2-months after my TD, I kind of felt like my surgeon left me hanging since he did not request me to make a follow-up appointment.

I was having some problems with frequency of stools and pain with gas.

It would be more convenient for me to see my GI logistically, so I figured since I graduated through the HMO referral sequence to my Surgeon, It would make sense that I would downgrade through the same sequence after my TD.

When I tried to get a referral to return to my GI and make an appointment, my GI called me at home and asked me about my medical issues. He said that he does not see Pouch patients, but he would call my surgeon personally and relay my concerns.

I then made another appointment with my surgeon and on the next visit, he did spend a bit more time with me and prescribed meds that helped tremendously.

While I do respect my Surgeon (not sure about the like) and he is very pleasant, I get the sense he has a bit of a God-Like persona in that he is super positive about my J-Pouch and that I should just be living a GREAT life with no complications. This attitude can be intimidating at times as I am afraid to state any negative aspects of my pouch out of fear he will "poo-pooh" (no pun intended) my concerns.

This is why I made a video of my very visible symptoms when I am digesting food so that he would believe me that I was indeed having complications.

My GI referred me to an IBD specialist at Mayo, 4 hours from there, as he nor my surgeon knew what else to do for my cuffitis after it did not go away after months of cuffitis or anucort suppository use.

He said that he treats the entire digestive tract and that I needed an IBD specialist. He had no problem doing the pouch scope, taking biopsies and treating me. It was just when it didn't respond to the treatment that he referred me.

I've had other pouchers warn of ER rooms as all doctors don't realize how small J-pouches are, so scoping is a big deal. Maybe that is why some GI's don't want to treat j-pouchers.