Alysia,

I have a very similar history to you as far as the chronic pouchitis, but no dysplasia findings so far in the pouch. However, I did have low grade dysplasia (LGD) in my colon before colectomy and am compelled to ask if you had LGD in your colon as well. This may be important. It has been important in my treatment as I am on an annual pouchoscopy schedule specifically because of it.

I am told pouch cancers are rare, and I am also told that the rectal cuff is the most likely area where cancer will be seen based on studies by the Cleveland Clinic. Your LGD finding in the pouch sounds somewhat anomalous. I don't recall anyone on the Board previously posting about it.

May I also ask how you have treated the pouchitis since 1996?

Let us know the results of your blue dye test. Good luck!

thanks for your response. I don't think I have had LGD before but to be honest I am not sure. And my doctor told me this is the first time he has seen this in the pouch so that is why I am so nervous. I don't usually post on this site too often but I do read some of the posting on here and have learned from this site.

As far as the pouchitis, Cipro works the best for me and I have also been on Flagyl. I also take 6mp and 1 lomotil in the morning. Unfortuantley I haven't found another antioboitic to rotate with and I started to ask my doctor today about Xifan and Augmentin and he said lets work on the LGD for now.

quote:

I don't think I have had LGD before but to be honest I am not sure.

I would talk to your surgeon and find out. It may be useful for your current Doctor to know. My GI, for some reason, is very concerned about my pouch because of the LGD history in the colon. I have had pouchitis much like what you describe, characterized as "mild simmering pouchitis", since 1995. Our histories are very similar as far as pouchitis. My treatment has been a rotation of cipro and flagyl, xifaxin and augmentin. I also take pentasa and entocort. I have not taken 6MP or any biologics. I was told it is the "last line" of treatment. My symptoms are essentially as you described or less. No pain and mostly things are under control.

Alysia,
First off, I am so sorry that you have to go through this..it is a major stressor to have to go through the tests, wait for results and then have to go through them again...It is really tough...
Just to answer the k pouch question...having a k pouch is not a difficult thing to live with...it is much easier than people think...for the most part...you have very few supplies to deal with...just a reusable tube, some lube and something to cover your stoma up with...it is a flat, tiny little stoma (thing pink bellly button)...your pouch sits in your abdomen, when you feel that it is full (you will know) then you go to the bathroom, put the tube into the stoma and the stuff pours out. When done you remove the tube, rince it out and wipe off the stoma then cover it with a pad or folded up kleenex.
I carry a little water bottle into the stall and use it to squirt the tube clean of irrigate the pouch if things are too thick in there...
You can eat most foods if you chew well, if not you avoid stuff like corn and peas but otherwise most stuff if ok. You can sip some prune or grape juice to thin things out in there.
If you have to have a new pouch built then it is still very major surgery..no fun but it is a one step process and you find yourself waking up with a k pouch.
If you would like some more info on the subject then post in the k pouch section of this forum or PM me..I will be happy to answer any questions you might have.
I hope for your sake that the tests come back negative and that everything is ok...
Sharon

Thanks again, and my doctor and surgeon work togehter (both out of Mount Sinai) so I know everything is all in my records and will talk to him when I see him.

I was nervous when I first started taking the 6mp but I get my blood checked regulary and so far all is good. It hasn't cured my pouchitis but it did help the nighttime incontinence though it takes a few months to work. Just incase you ever go that route.

Sharon,
Thanks for your post. Once I find out the results and if I do have to have the k pouch I will pm you as I will have questions. What determines if I will need a new pouch and how long would I be out of work?

Not to put the cart before the horse here...but...if for any reason your pouch would be considered too sick to keep then and only then would they consider removing it...(chronic and severe pouchitis or cuffitis (and with the cuffitis there are other things that they try first), ulcers, cancer etc would be reasons why a surgeon may consider removing the pouch but even then they may wish to rebuilt you a new one unless you are dealing with unmanagable incontinence...then they might start looking at other options. The usual options are either an end ileo or a k pouch (especially if you suffer from incontinence)...some surgeons prefer going to a loop before deciding on which way to go...others will accept the idea of choosing one or the other...A k pouch requires at least a week in hospital, 4-6 weeks convalecence with the indwelling tube (catheter) while you are growing your pouch and then usually another couple of weeks taking it easy (maybe going back to work part-time and avoiding the usual heavy pulling/pushing/carrying/lifting etc)
In the best case senario you feel comfortable with your k pouch after +/- 2 months...worst is usually about 3-4...if you have had a j pouch then the k pouch post op convalecence is a cake-walk...you just monitor your eating habits and avoid a few food groups until you and your k pouch become friends...there is no butt burn, raging diarhea, accidents etc...just the time it takes to get used to your new plumbing...
That said, it is still major surgery and not to be embarked on lightly.
I hope that for you it is unneeded but know that the opition is always there.
Hope that this helps
Sharon

Thanks again Sharon. I will keep you all posted next week. In the mean time I am reading some of the post on the kpouch corner. it is good toknow the worst case scenario so I can at least plan for it and hope for the best. I have a trip planned for Paris this summer so hopefully if I do need any surgery it can wait till after my trip.

Alysia,

First, I would like to say I am sorry you are having this experience. My situation is similar to yours and DBJ's with chronic pouchitis treated with antibiotics. I also had suspected LGD in my colectomy path, but it was later deemed indefinite. I too need annual scopes and biopsies due to this and I seem to have them even more often due to the chronic nature of my pouchtiis combined with my stubbornness and continual attempt to get off antibiotics with little success.

When they found LGD (or what they thought) in my colon, they watched me and scoped me every 6 months. I had several clean scopes followed by one questionable, which led me to jpouch surgery. I am certain your surgeon will not want to jmp the gun on this due to the low occurrence of cancer in the jpouch, but I also thing those of us with chronic pouchitis are at a much higher risk of this occurring than jpouchers who do not have chronic pouchitis.

Have you been treating your pouchitis with medications this entire time and has your pouch ever been free of inflammation during your 16 years with it?

Jeanne,
I have pretty much been treating the pouchitis for most of the 16 years. In the beginning there were times I was free of inflammation or it has been mild. I have been on cipro most of the time as that seems to be the only antibiotic that works for me. Unfortunately now I am immuned to it but if I go off I feel worse so my doctor tells me to continue taking it. I want to try Xifan which is one I have not tried to see if I can rotate with the Cipro. When I saw my doctor yesterday he was more concerned with the dysplasia so he didn't prescribe me anything. My pouchitis really doesn't bother so for now I am okay, just waiting patiently for my results. I just don't want to go through another major surgery again. Once was enough for me and I feel for the people on here that have gone through multiple.

Good news today. My results came back and no dysplasia. Still a lot of inflammation but I laready new that. My doctor is still concerned and wants me to come back in 4-6 months for another pouchoscopy. But for now I am thriled..it was really scary hearing that he had never seen this before in a pouch.

Thanks everyone for your responses and helping me get through this difficult time. I really appreciate the support.

That is great news! You must feel like a weight has been lifted off of your shoulders.

As far as bringing that inflammation down....did you discuss with him the possibility of going on Entocort?

Great news Alysia!! We will be praying for good scope results when you go back. Please update us as to how your condition is and we hope it improves with the meds.

Very good news! Sounds like this was the dysplasia of chronic inflammation, which is difficult to discern from dysplasia that may be of the precancerous type. Your doctor is wise to have you keep a close eye on it.

Jan

Thank you everyone!

then I would try the Cimzia.

But since we are on the subject, does anyone have any thoughts on Cimzia?

Jan, I think you replied once to me about Cimizia but I can't remember what your thoughts were.

Thank you all again for your support!
Alysia

Ok, I really hate my laptop because I just spent a long time typing a message and I must of deleted most of it

So in a nutshell CTBarrister, I think we have the same surgeons, Dr. Bauer and Dr. Gorfine who by the way are awesome.

Anyway my gastro says my last option to try is Cimzia and I am scared to go on that especially since I feel okay. I also discussed Cimzia with Dr. Gorfine and he feels if I am doing okay with the 6mp he thinks i should just stay with that since that medication has been around longer and they don't know the long term effect yet. The 6mp has not cured by pouchitis but if has reduced by nightime incontinence so I feel like it is doing something.

quote:

So in a nutshell CTBarrister, I think we have the same surgeons, Dr. Bauer and Dr. Gorfine who by the way are awesome.

Yes, Dr. Gorfine either assisted or led on all 4 of my bowel surgeries. He is an excellent surgeon. Dr. Bauer is great too.

Don't know how long you have been on the 6MP but my understanding is it takes some time before the results become palpable.

I am sorry that you had to go through 4 surgeries but at least we do have great surgeons and are lucky to live close to NYC. My surgery for the jpouch was done in one step.

I started the 6mp January of 2010. There has not been much difference in my scopes in regards to the inflamation but the 6mp has significantlly reduced my nightime incontinence. And yes it did take about 4-6 months since I noticed a difference.