Forgive me, as this is part of my continuing series of "dumb questions" from the still learning perspective of a pre-pouch UC guy, but I was looking at pubmed studies on pouch function over time. Most of them conclude that over the years (after the initial improvement that most experience over a year or mr several years) long term, pouch function (continence, comfort, frequency etc) gradually worsens, and it is generally concluded that age and, more so it seems, pouch age are the culprits.

Does that mean that many of us who get pouches when young or middle aged will probably have to reverse the pouch in our senior years, or have them rebuilt? Is that kind of surgery (reversal or rebuilding) not much riskier if one is forced to do it at say, 70 or 80 or whatever?

Thanks-- Christopher UC

Gee...I hope not!! My pouch is 21yrs old and doing fabulously! Keeping my fingers crossed it stays that way too!

It depends on how you interpret the data. The way I read it is that as time goes on, you are more likely to have an episode of pouchitis, but not necessarily chronic pouchitis. Plus, as we age, in general, we are more likely to suffer with functional bowel problems and/or issues relating to continence. This is true whether or not we have had this surgery. Having loose stools all the time just makes it more likely to be a noticable issue. It does not mean that there is a time limit on the pouch and it will have to be replaced or removed at any future date. Obviously, if you develop chronic inflammatory issues, it will be a problem. The problem is that there really are not enough aging pouches out there to know one way or the other for sure. The technology is too new. Plus, the pouches that are 30 years old now are constructed differently than the ones constructed today, so the comparison may not be the same.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed...&itool=pubmed_docsum

Jan

I have been living with the J pouch for 15 years, and have not noticed any worsening in function which has remained constant once the pouchitis was successfully treated with antibiotics. At 44 years old, I am still relatively young but hopefully things will continue to be okay.

I know I read somewhere on this site a bunch of postings from "old-timers" who seemed very happy with their pouches. Also, pouches get better and better as surgeons gain experience and know-how, so I assume our chances of long-term success increase at the years go by. Those of us being pouched now should stand a better chance of success than those done 20 years ago. I got scoped yesterday. *!#!!, it hurt!! I've been walking around like John Wayne today. Anyway, the surgeon told me I have only 2 cms of my rectum left - enough to provide good control (which I have - never leaked), and to be honest I felt a wave of relief that my colon is gone and that all I have left is a healthy small intestine + pouch and a tiny bit of possibly troublesome rectum. I'm so glad I had the surgery. And...like we all say: there's no such thing as a stupid question! Just keep posting any questions you want

Thanks Jan and thanks Sophie... Yeah I guess it is very, very common to have these feelings of indecision and fear about going from the frying pan into the fryer. Sorry about the scope ouch... I would be hopeless in cscopes were it not for Demerol and the other stuff they wire up into me for discomfort- ironic that with little pouch it has to be as uncomfy as way into a colon (though I know that the most uncomfy bpart of a cscope is the actual insertion phase so I guess that is the same issue).

I am 'somewhat' atypical insofar as I am generally quite functional with UC (granted thanks to pred in flares like now though) with 0-2 BM's a day quite typical, so the very thought of going to 10 a day or whatever is 'typical' for so many is somehwta terrifying. But I have to think positive, and thanks for you all letting me keep up the unlimited 'stupid questions.'

Christopher

I can really understand you going through all of these questions if you're functioning pretty well. 2 BMs a day is pretty damn good really! But is this only achievable with pred? I have a friend who uses good ol' salazopyrine in very small doses and is fine so surgery is not an option right now. I would never have had surgery had I been able to manage my UC with safe drugs like Asacol and just have the odd week of pred now and then. But my UC was in a constant flare which went from bad to worse to absolutely awful so surgery was a must. Now it's been done, I'm just glad to be able to move on. I really wish you the best of luck in reaching a decision. Yours will definitely be an informed one, and I commend you on gathering as much information as you can while time is on your side

Hi Soph- always enjoy your posts and your compassion for others (seems to be the MO for gthis whole forum). I have been on and off pred for 9 years but mostly on rather low doses. Since I am completely allergic to every variety of 5ASA drug such as Asacol, Dipentum, salazopyrine or colazol, that explains my pred depedendence.

I think last year I made a huge mistake by going without pred completely for 6 months. Thought I was "free" of all drugs again (as I was for over 9 years after my initial two years of UC attacks over 20 years ago) but then gradually relapsed worse and worse. But to answer your question, on very low or no pred I have had long stretches of only having a series of BMs oin the space of an hour a little after breakfast, and then none for the rest of the day until the next morning.

In general, after my morning BM's I am done for the day. The exception is a flare that I resist increasing pred for. Especially after keeping on little or no pred for long stretches, I normally try to do everything under the sun (probiotics, food adjustements, supplements, DMSO on the skin, etc etc) to avoid increasing pred, then I try a relatively small increase, and if all of that fails (with massive pain, conbtinuous D, beginning of B, etc) then I finally bite the bullet and bump the pred more, to a level that starts bringing things back under control. Then, as is the case right now (30 mg pred), I face the problem of how to get off again. Well, you have all been there I know!

Best, Christopher

But your doc recommends surgery now, right? Hard decision. Your flares are like I was all the time. I always had diarreah, always had blood and during flares I was on the loo a lot (like every hour in a small flare, every 15 mins in a bad one - night and day. I slept on the bathroom floor). Even on pred (40 mg) I had slight bleeding, and the minute I started weaning off it got really bad again (on 10-5 mgs I was having over 100 bms a day, losing enormous amounts of blood and having to have fluids through an IV). I'm inclined to say wait a bit longer if you're doing so well as you are, but on the other hand you don't want to end up in a huge flare that has you spiralling into ill-health very rapidly. Maybe it would be an idea to check how long a waiting list you'd be facing if you decided to wait with the op. Even as ill as I was last summer, the docs said to me "you can always cancel at the last minute if you get better in the meantime" so they were keen on not operating unless it was really necessary. And i was in a BAD way, so that's saying something! At least through this site you know that life can be very good after surgery, if that's what you decide to go for

Hi and thanks, Soph. No, the GI's are recommending against surgery at this time, but rather just 6-months surveillance, saying it is quite possible that things could be stable for years more. My gut (pun intended) instinct is to not make any big decisions like that until a second view of what for me was a new development (dysplasia).

As for symptoms, well if pred was a "safe" maintenance drug I could live pretty well, almost like a normie except with some degree of chronic gut pain daily, no blood, etc. Of course, pred is not a safe maintenance drug (certainly not in anything ut very low doses) so that changes things right there even without the dysplasia.

A year ago I was on 0 pred (no drugs at al actually) for 6 months with just occasional blood in mucus and several loose or soft BM's a day in the space of an hour, after breakfast, followed by feeling fine all day except for some mild gut pain, then I was on low dose pred for a few months and eventually started into this 30-mg pred-suprressed flare that I am fighting to quell.... living ok except for the pred. Trying Imuran for a couple months now as well as Trichuris Suis Ova (TSO), a.k.a. pig whipworm eggs for 3 months now. Even excepting Imuran and the TSO, I was able to manage with next to no pred (2-5 mg) most of the time, with doses below 15-20 mg even for short flares, thanks to my low carb SCD diet, probiotics, etc., that all seemed to keep symptoms dampened. But the past 6 months this alone hasn't worked anymore.

My plan: to be in a solid remission before I face the surgery, if possible.

Christopher

Chris, I think you have very good goals. Ideally, everyone should try to be in remission and on no more than 20mg prednisone at the time of surgery. It makes sense to have a second look at the dysplasia (particularly since the dysplasia of inflammation is difficult to discern from the dysplasia of precancer).

However, I am sure you are seeing the writing on the wall. It seems for you it is just a matter of when you will have surgery and it is nice to be able to have some amount of control in that aspect. I was in a similar boat where surgery was recommended due to 20+ years after a diagnosis of pancolitis and my GI was getting nervous about missing a cancer during colonoscopies (cancer in UC tends to be a flat lesion, not a polyp and often arises in tissue that was not previously dysplastic). So, I had made plans to have surgery in a year or two, when my kids were older and less in need of me (I know, there are always reasons to postpone).

Then, I had a flare that matched my initial flare, except it was refactory to prednisone. By the time I had surgery six months later, I was on 80mg prednisone and on an elemental liquid diet. Even then, the UC was fulminating with constant bleeding and I was close to needing a transfusion. It made surgery more difficult and I had a lot of complications.

Somewhere here there is a point. Oh, yeah, just don't wait too long trying to get into the perfect drug free remission.

Jan

Oh right, sorry - I couldn't remember if your docs wanted you to get the surgery now. If they'd had the worm pills here I'd have given them a try too! Imuran worked reasonably well for me, but it killed my skin. I became incredibly photosensitive and my face got huge blisters from normal daylight. The skin specialist worried about skin cancer, the GI docs worried about UC flares .
Apart from Asacol supps if I start bleeding (UC in the 2 cm I have left of my rectum), I'm off all meds now. It is pretty good, I have to say. The road to recovery after surgery was NASTY in my case, but worth it nonetheless. I think you have to approach surgery like a project with a beginning, middle and end. There will be tough times, but hopefully the result will be good and you can start a healthier life eating more varied food, enjoying a life without the side effects of daily medication ****tails. If you go for the surgery option, make a plan for yourself - what to take to hospital etc. - and make agreements with friends and family to help you out! You'll appreciate any help to make food, clean your home, do laundry etc., and having friends who can come over and cheer you up is really important too. With the support of friends, at home and on this site, you can get through the hard times and look forward to the good times - they will come!
ps: Love the way an innocent word like ****tails gets automatically censored with ****!