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!
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?
All my best to you,