J-Pouchers need to check for rectal cancer?

It is a valid concern. Even more so if there is a history of frequent pouchitis.
I have had a j pouch since 1998, and just this year discovered that I should have been scoped every few years as a precaution.

Recently I met an old acquaintance from the industry I work in,and I asked how his j pouch was. He informed me that in 2008 he developed j pouch cancer and it had to be removed. His pouch was about 16 years old,and suffered frequent pouchitis.

Hearing this made it all the more real.

I've never heard of that. I also, thank goodness, do not have a pouchitis problem. Knock on wood. Throwing salt over my shoulder.

I have heard that we should be scoped every once in a while, but even with insurance... deductible, out of pocket, geez that's a bunch of money. I guess I'll give a call.

It is a totally valid concern, but your GI should be the one checking on it. If you had cancer or dysplasia in your colon, or have had pouchitis, the rectal cuff should be scoped and biopsied every year. This is per my GI who worked with Dr. Shen at CC where they have seen rectal cuff cancers develop in some J Pouch patients, mostly those who had cancer/dyplasia with their colons, or long term inflammation in the pouches.

I get checked every year, by my GI.

Honestly, if you have a history of cancer of dysplasia in your colon before it was taken out, you should not be shocked. The rectal cuff cancer risk is well known and failure to diagnose it might be deemed malpractice. This should have been discussed with you by the Doc prior to any digital insertions.

OB/GYN docs have the highest malpractice insurance premium rates of any doctors, and they have to do more testing than others. Her insurer might very well require that protocol with her J Pouch patients. I have heard of many OB-GYNs leaving the practice as the insurance cost is just too much. For that they can thank their sue-happy patients.

I agree this should have been discussed before the digital insertion! Especially since this was not a GI or CR surgeon.

I got a j-pouch from having uncontrolled UC at about the 4 year mark, so there was no displasia and no one, not even my surgeon has ever mentioned the chance of cancer in the rectal cuff that remains. Still, I'll call and make an appointment tomorrow. All good advice. Thanks.

If you have not had cancer or dysplasia or a significant pouchitis history, it is a very very remote concern. However the stat I heard from my Doc was that about 5% of the J Pouch patients had developed cancer in the rectal cuff in the Cleveland Clinic study, but most of those were patients who had dysplasia or cancer in colon or long term pouchitis. I don't know that it means there is a zero risk but you are probably in the very low risk category. I am a higher risk because I had dysplasia.

By the way, putting aside the "surprise factor" you mentioned, I have never been bothered by the rectal exams I have had. My thought is that with an OB-GYN doc they probably think it is not a big deal since they are probing areas that are very private to begin with as part of their normal duties. Maybe she is desensitized to it all, but a discussion or "heads up" to you was definitely in order beforehand, and I don't recall any of my GI docs ever giving me a digital exam without an advance warning.

Thanks CT. That's good news, and pretty much what I was thinking I'd hear.

About the other, I honestly didn't know what I was feeling at first because it had never happened before. I'm realizing that I didn't even get the obligatory, "You're going to feel a little pressure..." Apparently she forgot all the warnings that day.

My ob/gyn doc has always does a rectal exam. I think that's standard for a patients annual exam. I trust her and she knows I had surgery.

My ob-gyn gave me a multi-digit rectal exam about a year and a half ago. It was a surprise for me too! I developed a painful stricture and also a lot of back and pelvic pain afterwards. Ugh! yeah, I will not ever again allow any medical personnel to come near my lower half without explaining to me why they cannot do a rectal, for me , that is one painful experience I do not wish to repeat.

Exactly. They are not familiar with whatever our surgeons have done down there. I have been in pain since that day, too. I'm having to use nupercaine and stay close to the bathroom for the third day already.
I could have prevented it if she had only warned me about what she was going to do.

At the time, my surgeon had me take hot baths with Epsom salts to help ease the pain. Walmart has some with scents like lavender or chamomile for only around $5. It helped a lot. My surgeon did dilations often for a number of months after that. I still must watch the amount of fiber that I eat because I will narrow down there still. frustrating because my OB/GYN had been previously told by me to never, ever do a rectal exam on me. we also spoke about the surgery directly before she did my exam. I believe she was not paying attention and just doing a routine or habit for her. It caused me enough pain for weeks afterward that my surgeon said he would order a muscle relaxant if I chose. This from the surgeon who would only order one Darvon every four hours for pain relief four days after my first surgery which included J-pouch formation and total proctocolectomy. His attitude is almost always just deal with the pain, but not so after that OB/GYN exam. He said the pain was from trauma to the area. A heating pad helped a lot to my back too. I am sorry to hear this happened to you. I think maybe a checkup by your GI or surgeon would not be a bad idea. Good luck and hang in there!

As I mentioned previously rectal exams should only be done by your surgeon or your GI. If the OB-GYN docs are doing it, they are doing it for malpractice/liability reasons. I got $10 that says if I do the research, I find a case where an OB-GYN was sued due to failing to diagnose rectal cancer or some other rectal problem. OB-GYN docs are the most sued medical specialty docs, and their malpractice insurance is off the charts expensive. I suspect that malpractice insurance/liability concerns is what is driving these surprise rectal exams. Welcome to our litigious society, which aggressively overtests and overprocedures in order to stem the tide of litigation.

I am so sorry to hear about all that you went through, Phoenix. Thanks for the encouragement.

CT, I think you hit the nail on the head.

I will be proactive about this issue at each exam in the future. I also made an appt. with my CR surgeon. All's well in the end. Haha, in the end!

I was actually scheduled to have a pouch scope (once every 2 years), but my employer has moved to a high-deductible insurance plan.

The pouch scope would cost at least $1,045, which I simply cannot afford to do every 2 years.

I can afford to have health insurance or I can afford to go to the doctor. . .apparently not both.

So, guess I'll have to just hope for the best and not have scopes done. Anyone else in this situation?

Dog,

If you are on a 2 year scope plan, it's likely you have not had dyplasia, cancer or pouchitis of a chronic nature, otherwise you would (or should) be on an annual plan. I have health insurance and my copay on my scopes is $500. In my case, I have to do it annually and I have to pay. The alternative is to have a cancer develop and not get treated until it's too late to do anything about it. Which would not be a prudent approach.

For those who have no history of dysplasia, cancer, or long-term pouchitis, it's much less of a risk. But it is still a personal decision if one wants to roll the dice with one's own health. As Clint Eastwood once said, "do you feel lucky?"

http://www.youtube.com/watch?v=u0-oinyjsk0