How often are you meant to have a pouchoscopy?

I had my first surgery two years ago and I just had my first scope the other day. My surgeon told me to come back in a year for another. Not sure if he is going to do one every year but I think it should be one at least every couple of years. I would get one done if I were you....just my 2 cents.

I was recently advised by my pouch specialist that Dr. Bo Shen (USA pouch expert) advised him that pouchoscopies should be done annually because of the concern at Cleveland Clinic with the amount of rectal cuff cancer cases they are seeing. Because of said advice, I was elevated from a once biannually to a once annually cycle. With my former specialist, I was told once annually, and the only time since 1992 that I went two years without a scope was the last 2 years, 2010-2012. During those two years I experienced shocking deterioration in my pouch despite not feeling any symptoms.

Some here will tell you annual scopes are not needed if there is no inflammation/pouchitis demonstrated on scope but I heard this line of reasoning refuted by the Shenites, who believes that we all have microscopic inflammation in the rectal cuff. I actually have not had any problems there as with cuffitis but I was told that my history of dysplasia warrants a concern that those areas should still be biopsied every year.

If you have not been scoped since 2006 you really should be going for one under any reasonable analysis.

Mine started off annually. Then as things were progressing with no issue, my surgeon said we could push it out to 2 years.

(Cue ER visit, fistula and probably Crohn's diagnosis, and I'm now waiting on my second scope in as many months!)

My thinking has always been better safe than sorry. And I'm happy to get it checked regularly. I went through a lot to get this lovely functioning pouch, and I want it to stay that way.

I had UC long enough to the point that I needed annual colonoscopies
done. Having this surgery and then annual pouchoscopies to follow up
just seems like common sense.

Hi,
I was just told by my doc that I should get it done every 2 years. She said if I had my colon removed because of colon cancer then it's every year. I have had my pouch 2 1/2 yrs now & I personally have already had done 2 scopes & am going in for my 3rd soon. I had some minor stricture issues so they put me under to dialate and did pochoscopy while I was under. I like that it's been checked 2 times already. I like knowing that all looks good-not that I expect a diagnoses of cancer but knowing that I have unusual plumbing, I like to be sure that it's structurally in good shape.

It depends on what disease you have and the reasons for getting them done. My friend has a jpouch and UC, had colon cancer at 17 and hasn't had a check up in 10 years. I guess nobody told her to get looked at again, but she claims her doctors sucked and at that age nobody really talked to her like an adult.

I have to get scoped every 3 months as of right now but I have FAP.

I have two colorectal surgeons...long story. One believes on yearly scopes. One used to see me yearly but after 10 years of no problems, he advised scoping me every three years. So.....I see surgeon #1 yearly and plan to see surgeon #2 every third year! I'm taking no chances...knock on wood!

once every 1 to 2 years is what my dr says.

I'm apparently on the 10-year plan.... Same with mammograms. And yes, I'll have only myself to blame. Do as I say not as I do.

kathy

Wow thanx so much to all who replied to my question.
So most of you say at least every 1-2years. Originally i was told i'd get a pouchoscopy done every two years too but when that time came up my surgeon said my pouch seemed fine and to get it done next time. Then next time came around and again i was told next time should be fine. Well that next time is in August and again i don't know if i'll get one done because when i rang to confirm my appointment i tried to organize to get a pouchoscopy done too but they wouldn't book it for me because they said my surgeon wanted to assess me first... But in saying that i go through our Public health system over here and my surgeon has told me in the past that he would prefer me to go private health system because then he could do a pouchoscopy more often then what i can get in the public system. At first i saw my surgeon every year then it got pushed out to 2years and last time he said after my app in August i could push my appointments out to 5years,does that seem too long a gap between check up's?
Thanx again for all your experiences with getting pouchoscopies

For me, 5 years would seem a bit long between scopes. I don't like surprises. I'd rather be sure than sorry. On the other hand, it sounds as though you are doing very well for your doc to feel you don't need frequent scopes. Congratulations.

Yeah i think i'm not like most of you on here,in that i only had UC for a total of 2-3months before i got my colon removed,thats all my body could handle because it came on really aggresive,really fast.
I was pregnant with our first at the time too,so they don't know if it was a case of bad timing or something in the pregnancy triggered it,but it was a scary thing to deal with when your pregnant and never even heard of the disease before.
I think i'd feel better being seen every 2years,but i don't know if they'll let me be seen that much,but i can always ask i suppose. Thanx for your feedback CeeeeCeeee

quote:

J-Pouch Forums

Oh dear! Last time I had a pouchoscopy was over 21 years ago! Do not have a j pouch but either a S or W pouch.. cannot remember. Have been referred to colo-rectal dept in hospital next week as having some problems.

Does one have to be 'prepared' for a pouchoscopy beforehand or it be done at any visit?


Thanks

TK

I have a BCIR and I have no prep before my scopes. I believe you some like people to go on liquids 24 hours prior. Not sure what else for jpouches. Every doctor is a bit different.

Doctors are different on the prep for J Pouch. Mine has usually been fasting after Noon the day before and a Fleet enema in the early morning. The amount of fasting and the laxative used differs with every doctor.

This is all new to me.. I always thought after having any type of pouch, you should not or cannot have an enema and should not take laxatives.

Tan

Hello Vanessa

I am a bit nervous as not had any type of examination for the pouch for over 20 years. Starting to get some problems with intermittent pain and discomfort - worse at night.

Oddly enough, fizzy drinks kind of help!

Tan

I just had my takedown in April and I was told to come back in a year for pouchoscopy. Don't know the frequency after that.

quote:

This is all new to me.. I always thought after having any type of pouch, you should not or cannot have an enema and should not take laxatives.

For the pouch to be scoped and for the doctor to get adequate pictures, it has to be cleansed of stool. This is accomplished by taking enemas. I personally think a warm water tap enema will do the job but for 20 years I was told to take a Fleet enema which is a bit harsher and cramps you out a bit. It leads to explosive diarrhea for about 2 hours but after that you are clear.

My pouchoscopy pics can be seen here:

http://j-pouch.org/eve/forums/...921/m/7917065126/p/3

Getting a bit worried now.. just got letter from hospital to see them urgently next week - the letter is from Cancer dept. I cannot get colon cancer because I don't have a colon anymore but still have part of rectum... can you still get rectum cancer?

Tan

unfortunately you can get cancer anywhere. Have you had any other cancer diagnosis in the past, or dysplasia ??

I was told that after the J-pouch surgery, the chances of getting rectal cancer in the remaining tissue is less than 1%. Guess that is why it is important to have scopes at regular intervals. One of my surgeons says yearly scopes are necessary. My other surgeon has me on a three year schedule for scopes after ten years of annual scopes with no problems.

I have been on the 3 yr plan since my surgery in 2007.

Rectal cancer is the worst type to have. I would just get annual scopes, it is not that big of a deal when you are talking about health. I sometimes think people think it can't happen to them or give odds. I had rectal cancer and anyone can get it. I wish I could do annual scopes I go every 3 months for pouch and upper scopes. It's a pain but that is my routine.

Thank you all for the replies. Very helpful. I had many post op complications after my total colectomy that in subsequent years resulted in bi-lateral hip replacements and further revision (due to steroid therapy), an massive abscess wound below belly button after colectomy etc etc.

I was treated at the Royal Free Hospital in London under the care of Mr Adam Lewis who was the Sarjeant Surgeon to The Queen and maybe still is. I had many complications but Mr Lewis really helped me through and was brilliant. After many months in hospital, he always said to just call his secretary if ever had any problems and he will get me back in. This happened on a few occasions and i think at least twice I had to go back in theatre because of a blockage. The last time I was in was over 20 years ago but never asked to come back for routine appointment and quite honestly, been 100% ok.

Now I get intermittent pain int he rectum area - a feeling of wanting to go with short bout of spasms. Worse at night at times but once I relieve myself I am ok but kinda sore. If I walk around I am ok but something is lingering down below .. almost like a dull ache.

Stools are normal and not bloody at any time. Feel a bit run down and get the odd mild temperature. Apart from the issues of the hip-replacements 'playing up' and this new problem down below, I am fine.

Precautions being taken at this time are no spicy foods (well I never did eat spicy food before, just not eating any ... even very mild) drinking more water, taking a priobotic drink everyday like Yakult and praying for the best!!

Will be 50 this year, guess I will request regular check-ups from now on but the hospital should have written to me... they do that for my orthopedic, anti-coagulant and diabetic clinics.

Will let you all know what happens - not afraid of the tests - well except the blood test.. apparently its easier getting blood out of a stone, my veins are so bad!

Tan

I previously posted another thread that my pouch doctor put me on an annual pouchoscopy plan this year due to heightened concerns about cancer of the rectal cuff:

http://j-pouch.org/eve/forums/...127007026#3127007026

My pouch specialist is a protege of the famed Dr. Bo Shen (a leading USA expert on J Pouches) and Dr. Shen told him the Cleveland Clinic is seeing increased instances of rectal cuff cancer. My pouch doctor said everyone has microscopic inflammation in their pouch/cuff so the old notion of "scope 'em every year only if there is a problem" is being tossed out the window.

J Pouches have a track record only going back a little more than 20 years and now that we are 20 years out from when they started being commonly done, such that there is enough statistical evidence in place, a track record is forming as to the risks attendant to leaving that rectal cuff in place and how it behaves over time. This is statisical evidence based on people who have had J Pouches for a long period of time, which is only now being compiled and analyzed since they did not exist in large numbers prior to about 1990 or so.

I suspect your hospital is being proactive and you should not be unduly alarmed, they are just waking up to the recently accepted fact that the current thinking on the timing of scopes for all patients who have rectal cuffs is changing. It is changing but not everyone is feeling those winds of change yet.

quote:

DJBHusky

Thank you for the extensive and informative reply. I don't seem to be having any symptoms of potential rectum cancer (blood, diarrhea, etc) but generally feel someone has stuck something up my butt!

Anyway, what if it is cancer, what do they do? Remove the rectum and close the pouch and back to ileostomy? Also I had a W or S pouch.. don't know if that makes any difference.

Tan

The last time I had one was 2.5 years ago. At that time the surgeon said there wasn't really a need for them if I wasn't having problems. It's considered an invasive procedure. BUT I know that thoughts on this are always changing. I no longer see my surgeon, but I've been referred to a new GI so I'm hoping that he'll do one. I'll certainly ask about it at the appointment.

I had no signs of rectal cancer when I had it. So that is scary to really think about.