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Hello fellow pouch people!

I am new here. Thanks so much for reading this.


I was diagnosed with UC at age 3. I took various drugs for a year, including prednizone and cyclosporin, and did not respond well to any of them. I had more than 5 blood transfusions. The pathologist found no signs of Crohn's. So I was sent to the surgeon.


I had a total colectomy, mucosal proctectomy, construction of pouch, endorectal ileal pull-through procedure with ileoanal anastomosis at age 4 1/2 in 1993. I had the take down surgery about 2 1/2 months later. Dr. Fonkalsrud preformed my surgeries at UCLA. I responded well to the surgeries and have been relatively healthy since, I just have pouchitis about once a year.


I saw Dr. Fonkalsrud for my follow-up care until he stopped seeing pediatric patients. I think I was about 12 when I stopped seeing him. I went to see another surgeon at UCLA for my follow-up care at that time. I went to him yearly, he would examine my pouch with a scope and usually manually as well. I was always awake for these exams and didn't do any prep.


When I went away to college in Chicago, I started having a lot of problems with pouchitis. My normal course of Flagyl did not work. So I saw Dr. Buchman, a GI specialist (not a surgeon) at Northwestern. He never did any kind of exam, he just gave me a prescription and sent me on my way. The other antibiotic he prescribed me (the one with an X in the name), didn't work either. He did mention, though, that when I was healthy again he wanted to do a procedure to take biopsies of the small portion of rectum I (supposedly) still have, the cuff, to rule out cancer. I say "supposedly" because I'm not entirely sure I even have any rectum remaining. My mother says Dr. Fonkalsrud did not leave any rectal tissue behind. But, we are not doctors, so what do we know. This is just what Dr. Fonkalsrud told us. I do have my surgical records on hand. Dr. Buchman did not read my surgical records. When I told him I thought it was odd that no surgeon had ever told me to have this procedure done before, he said "GI specialists actually read clinical trials. Surgeons read comic books. They wouldn't know what you need for follow-up care." Needless to say, I had a bad feeling about Buchman, so I didn't have the procedure and stopped seeing him.

Still suffering from pouchitis, and home in LA on winter break, I went to see Dr. Fleshner, a Colon and Rectal surgeon at Cedars Sinai and protege of Dr. Fonkalsrud. He looked inside my pouch with a scope, said "Yes, we have a case of Pouchitis here!" and prescribed me Cipro. The Cipro worked, and I was healthy again. Cipro is now my go-to pouchitis treatment, it works quite well for me.

My mother wanted me to have a doctor in Chicago in case of an emergency, so I went to see a GI at the University of Chicago. Can't remember her name, but she didn't say anything about needing cuff biopsies.

When I graduated, I moved to New York and started seeing Dr. Steinhagen at Mount Sinai. He examined me exactly how Fleshner did, with a scope, they inflate the pouch with air, I'm awake and it's uncomfortable, but at least it's fast. He said everything looked great and I just needed to see him once yearly or if I'm having problems.

Obamacare happened, and I turned 26. So I had to leave my parent's insurance and change to an HMO, which means I now have a primary care doctor. I went to see the primary care doctor recently. He said I should really be seeing a GI, and not a surgeon for my follow-up care. If I really want to go back to Steinhagen, he said he would be happy to send me back there, but I should try a visit with the GI.

So today I went to the GI he recommended, Dr. Oneto. She was very thorough with me, but again, no exam. She did schedule me for a pouchoscopy though. I agreed, but once I got home and read the prep guide, I freaked out. They want me to do a ton of prep (clear liquids only the day before and day of, take 4 laxatives and drink milk of magnesia, etc.) She will put me completely asleep, examine the pouch and the end of the small intestine, and take biopsies from the pouch, the cuff and the small intestine. My question is, is this necessary? Keep in mind, I am completely healthy, aside from the odd bout of pouchitis once a year or so. She asked me when I last had biopsies taken, I said I didn't know, probably when I had my surgery. She said this procedure is not urgent but I should have it done this year.

I am semi traumatized from all the medical bull**** I had to go through as a child. I really thought I was "done" with this. I understand that cancer can occur at any time, but a huge factor in my parents deciding I would have this surgery was that it would lower my likelihood of cancer. I was too upset when the Dr. told me I needed this procedure to ask why or even really think clearly.

Another thing I am very confused about is, why has no surgeon ever told me I needed this done? I've seen 4 different surgeons over the years, and not one told me I needed biopsies. The only other doctor who told me I needed this was the GI at Northwestern. Why is there such a difference of opinion between Surgeons and GI non surgeon specialists?

It's too late in the day now to reach Dr. Steinhagen here in NYC. I will call him tomorrow and let you all know what he says.

In the meantime, any answers or input will be so graciously appreciated. 

Sorry this is so long!


In short:

Pouchoscopy: Is it necessary? If so, why?

Surgeons vs GI specialists: Why do they have such conflicting opinions?

Also would love to hear from any others who have had pouches 20+ years, what has your follow up care been like?


Thanks again!

All my best to you,




Last edited by MIAcolon
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Gina, what a story!  You really have been through the ringer.  Pouchoscopy is a necessary evil.  My son just had one 2 weeks ago at Weill Cornell.  There is no prep!  You don't have a large bowel. So there is nothing to prep for.  The only thing Jeff had to do was not eat 8 hours before.  That was it.  His GI did the scope.  Before that, the surgeon had done them.   But he is new to all this as well.  The secretary or nurse just gave you the general instructions.  I would call them and double check, but my son has had 6 of them in the last 10 months and never was there a prep involved. As far as biopsies , Jeff had biopsies taken two weeks ago.  I'm not sure about all the other pouchscopies Because he has only had his pouch less than a year and currently he is diverted.  And he was always given light sedation, just like when you have a colonoscopy.   Good luck, you will be okay!  


Hi there.

So, yeah, scopes should be part of your aftercare. However, I had mine constructed at age 19 in 1991, and I didn't get scoped for YEARS. I never had any problems for the longest time, so I just didn't bother. I was scoped around maybe 2005 or so, after a bout of likely pouchitis, and all was good. Then not again til maybe 2010. The past 3 years, I've been scoped a number of times because of strictures and fistula issues (new issues, sad face).

My surgeon's prep was always nothing to eat after midnight, but to assure a good view, I take a half dose of Milk of Magnesia at bedtime, then do a small tap water enema in the morning. It's true we *don't* need big preps, but you have to do something to clear things out a little, be that no food for a bit (some report their docs request a liquid diet the day before). There's no right or wrong answer here, but that you don't need MASSIVE preps. You could try Miralax too, it's more gentle than some. For me, magnesium works quite well though.

Surgeons and medical specialists DO work differently, as a rule, I've found. I'm an ICU nurse, years ago was an oncology nurse. Surgeons work and move fast; medical specialists work much slower.  This is my own observation. While I loved my surgeon (can no longer see him; he's in semi-retirement at the VA), his time with me at appointments was shorter and just focused on doing or not doing things. He's excellent at what he does, he just doesn't over spend time with me.

My medical GI is awesome. He will sit and spend 40 minutes with me at appointments. He considers farther into the "why" of why things are happening. He's more flexible about medical care (surgeon wouldn't really consider that my issues were IBD related, even though my fistula has no connection with my anastomoses or pouch; GI considered that it did likely have a connection, especially since my kid was dx with indeterminate or Crohn's type colitis).

That isn't to say there aren't thoughtful surgeons and medical GIs who are abrupt. I've met some on the other sides, one GI I met barely batted an eyelash about my complicated history, blew in and out in 10 seconds and only said I needed a DEXA scan to look at my bones, that was it, in our whole 10 seconds; dropped him). But generally speaking, I feel they tend to be the way I spoke in the previous paragraph, as a rule. I think again, as a rule, most surgeons when you no longer have a "surgical need" wish you to also f/u with a med GI because *most* issues after surgery tend to be medical and not surgical. I had to involve both, with my fistula, but pouchitis does not need treatment by a surgeon. If you have a surgeon who is willing to keep you for aftercare, great, but I think more of them feel that after surgery issues are over, it's worthwhile to see and maintain a good GI doctor.

And don't let biopsies scare you. Any scope will and should include them.

Last edited by rachelraven

I echo Rachel's thoughts.


In addition, if you are concerned about the prep, call the office back and get clarification. Be sure to have the nurse ASK the doctor to review the prep specifically for you, explaining that you have NO colon. When the doctor schedules these things, often he does not specify that you are different, so the staff hands out the standard prep instructions. So, don't let them insist that "this is what WE do and YOU must do it." 


Whether or not you still have some rectal cuff is not a given. A surgeon might say the entire colon is removed and not point out that a tiny rim of rectal tissue is left behind for technical reasons. Most j-pouches do have some cuff. But, even those that do not, still need the periodic scoping and biopsies, just because of the IBD history.


It would be nice if there was consistency on treatment and monitoring protocols, but philosophies are varied and some doctors are slower to change their ways than others. Plus, there are those who just don't have much, if any, experience with j-pouches. I would hope that those docs would be eager to learn from their patients, but sadly that is not always the case. Most of us have had our share of cold fish or disinterested doctors. You just have leave them and move on. For me, I need doctors I can talk to and who listen to me.



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