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Spooky
Had my pouchoscopy (without sedation) on 9/18. I've had it twice before with no sedation but this time was by far the easiest. The GI was great about walking me through everything. He'll be mailing me the report in a week or two, once the biopsies are back, so I'm sure I'll have more to add once I receive the full results, but in general, he thought the pouch looked quite good. No real inflammation, definitely no pouchitis at the moment. There is some redness along the staple line but he's not overly concerned about it. No evidence of dysplasia. Apparently even the cuff looked "okay," which actually surprised me because I've been pretty raw down below lately with some bleeding at times. He feels that's irritation/fissures and just to keep up with the creams (he basically said Calmoseptine is best and not to bother with the other brands, but I already knew that!). He doesn't see a need for canasa right now.

Anyway, at this stage, I only need annual follow ups unless something changes, with a pouchoscopy perhaps every 2-3 years or if I'm having symptoms.

All in all, good news!

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SpookySpookyMember
Thanks! Glad your scope went well, too. After all we go through, it is great to have some good news, isn't it? Smiler My last scope a couple of years ago showed an inflammatory process/subclinical pouchitis, so this is definitely an improvement. I'm still interested in seeing the full report but I'm very pleased with the results at this point.
Spooky
TE MarieTE MarieMember
I didn't have any medication for my last flex scope and found it fascinating when the doctor explained everything and showed me the construction scars etc.

It wasn't painless as I have cuffitis so I'm not recommending it for those of us that are having problems unless they are willing to put up with pain. Another positive to it is there is no recovery time needed and you can drive yourself.
TE Marie
SpookySpookyMember
Definitely echo what toughenough said. I would add that it was entirely my choice to have the pouchoscopy without sedation. I just wanted to get on with my day. Plus I could drive myself to the appointment, and no IV! Yay! Smiler As for the procedure itself, I would describe a feeling of pressure rather than any pain, but if you are worried, having issues with your pouch that might cause the scope to be painful, or even just feeling squeamish about things, then it might not be for you.

That said, it was fascinating to be walked through the whole pouch!
Spooky
CTBarristerCTBarristerMember
My pouch is not as good looking as yours, therefore my fascination with being walked through is outweighed by my desire to be sedated so I don't have to. I can look at the pics afterward which speak for themselves and which I have posted in another thread.

Regarding the timing of pouchoscopies, those who adhere to the Dr. Bo Shen theories of pouch maintenance opt for annual pouchoscopies due to the emerging statistical evidence of rectal cuff cancer in J Pouch patients, which is discussed in another thread. Since my pouch expert trained under Dr. Shen at the Cleveland Clinic and is a practicing Shenite, I have been bumped from once every 2 years to an annual pouchoscopy cycle (this also due to the Shenite belief that those with a history of dysplasia, as is my case, should be scoped annually). This may not be indicated in your case due to the seemingly good/better prognosis on your pouch, although I would discuss the issue with your expert.
CTBarrister
SpookySpookyMember
I know the information and current thoughts on the issue of rectal cuff cancer are changing. I did have questions about having the scope every 2-3 years instead of annually. However, the fact of the matter remains, my last scope prior to this one was 2.5 years ago, and both my surgeon and now my new GI have told me I don't require them annually unless I have symptoms. My surgeon has said it is an invasive procedure and he prefers not to do them that often. Obviously in a case like yours, where you do have ongoing inflammation, the incidence of cancer may be greater. I will certainly continue to ask my GI on follow ups. It could be that by the time my next appointment rolls around, the schools of thought will have changed again.
Spooky
L liz11Member
Please everyone read about the "shenite theories". I would suspect that Cleveland Clinic has the most jpouch patients anywhere in the world. Their theories are developed by treating these people. It is my understanding that Shen says anyone with a jpouch should be scoped yearly. They are finding increasing amounts of cancer and yearly scopes can detect that early. What is a measly scope once a year if it can prevent death.
L
SpookySpookyMember
Yes, I'm now being seen at Mt. Sinai.

I am aware of the Shenite teaching, and I have discussed the frequency of scopes and my concern about cancer risk with both my GI at Mt. Sinai and my surgeon at North York General, and I will continue to ask on my follow up visits. I personally have no issue with having a scope every year, but so far I haven't seen a doctor who would be willing to do them that often; they just don't think it's necessary and in fact, have advised against it. So I can only follow the advice of my doctors. As I said earlier, the schools of thought are always changing and perhaps by the time I have my next follow up, the recommendation will be different. But I will continue to self advocate. I would at least like to have one every other year.
Spooky
TE MarieTE MarieMember
I don't see why we should be scoped more often than we had colonoscopies. When I had problems, UC & diverticulitis, the scopes were more frequent. So I would think if all is ok we can go a few years with our pouches. I've had 3 this year so am planning on one next year because I've had problems.

I know the Cleveland Clinic and the doctors are great but they are not the only word on the subject. I believe those of us that go to the Mayo Clinics and to other prominent surgeons and GIs are well taken care of.
TE Marie

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