I am on a lot of medications, but not for pouchitis. They are for my enteropathic arthritis, which would still be there even with an ileostomy. So, no, it does not bother me to know I am on more medications now than in 1995 when I had my colectomy. I figure that there is no truly carefree solution, more of a trade off, and you just have to decide which trade offs are acceptable to you. Plus, I did not have the colectomy in order to be medication free (and I was not given assurances I would be). I had my colectomy because I was bleeding to death...

Pretty much everyone who has opted for an ileostomy after a troublesome j-pouch is satisfied with their decision. I imagine there is that tipping point.

Jan

I am in a very similar situation with chronic pouchitis, cuffitus and recurring anal stricture since takedown two years ago. I have been very frustrated with my outcome as i too was told no more colitis and medications. I have more medications in my cabinet thsn before surgery ( xufaxin, cipro, augmentin, xanax, ambian to sleep, Imodium, Canasa suppositories and anucort suppositories, cortisone creams to name a few). I never used a suppository in 25 years of UC nor did I ever have any anal issues like I do now ( burning, bleeding, irritation often). I have been on and off cipro (more on than off) over the last two years.

Why do I keep my pouch? I would rather deal with the extra meds than have an ostomy. I never liked the ostomy and the lack of freedom I felt it imposed on me. After two c sections and two major abdominal surgeries, I am not in any rush to have another major abdominal surgery with pouch removal unless I have run out of options or I am so miserable i cannot take it anymore. Although my pouchitis is chronic, I have had far worse days than the last few months have been so I keep on plugging. As bad as some days are with chronic pouchitis, that is also very treatable with antibiotics when I wAnt to take them, I hope to keep my joouch for the rest of my life. This may be a very optimistic thought on my part being that I am an otherwise healthy 49 year old with hopefully many more years ahead of me, but I'm sure going to give it my best effort.

The short answer is that a colectomy gets rid of ulcerative colitis, but it does not get rid of the autoimmune disorder in your body of which the UC is just one of many different possible manifestations. The autoimmune disorder cannot be surgically removed from your body. It can only be treated as it manifests.

Jan mentioned RA and then there is pouchitis and myriad other possible manifestations of the same underlying problem with your immune system. That problem has not gone away and it isn't going to go away, but the manifestations might be a whole lot easier to deal with because of surgery. That's the way you have to look at it. That's the only way you can look at it, because it is the reality of the situation.

I agree with what you are saying about the bigger picture of autoimmune disease. However, since I am only on these medications for pouchitis, I was looking for people in a similar situation and I was curious if being on all of these meds concerns them, and if they think about having the pouch removed.

Michael, I have had the J Pouch since 1992 and have been on antibiotics chronically for pouchitis since 1995. Of course it is a concern. I asked my GI point blank about the long term effects of antibiotics back in the 1990s and he said "you da guinea pig on that." But I have never thought about giving up the J Pouch because the meds are mostly working in my case to control the symptoms of pouchitis.

Sounds like you have had great success with your j pouch for many many years and if taking some antibiotics now keeps you feeling well, I wouldn't even consider going thru another huge surgery. That's just how I would see it for myself too.

While the idea of being medication-free is a pleasant one, I think we have to carefully distinguish between meds with unacceptable side effects vs. being grumpy because we need medication. Perhaps the surgeon overpromised, but that disappointment can't be the most useful way to decide if things are okay or not.

don't know if I am average or not.... before takedown and pouch, I was on 1 medication: immodium.

After, the list is huge. I listed it elsewhere, and actually only listed half of them - the other half I have standing scrips for, but don't take regularly.

I've been med free for 22 years. I feel blessed, but also am aware that that is no reason to breathe completely easy, for things can change quickly. I have needed a random Cipro script here and there, though. I'm currently taking Culturelle and Florastor, with some Black Strap molasses thrown in for good measure. I'm the opposite, lately, and have needed some MOM for being *too* thick at times, but eliminating potatoes, heavy breads, noodles, etc. has helped that.

There are some here who have actually had their jpouches removed for the same reason you mention - they didn't want to be on antibiotics long-term. Kissmyostomy is one who comes to mind - you might contact him and discuss how he feels since he went back to permanent ileostomy; pros, cons, regrets (if any), etc.

quote:

There are some here who have actually had their jpouches removed for the same reason you mention - they didn't want to be on antibiotics long-term.

The question that is begged is whether long term antibiotic consumption creates a concrete risk warranting consideration being given to removing the J Pouch. I am not aware of what that concrete risk would be. I have asked my GI doctors this question for years and the answer I have gotten is, "you are the Guinea Pig on that." If a J Pouch is removed it should not be removed based on suspicion and fear and hunches. It should be removed because it is not functioning properly or the treatment needed to get it functioning properly creates risks that outweigh the benefits of living on with the J Pouch.

If I have to take antibiotics to keep my pouch then I will take them every time. They don't effect me where I can tell I am on them and I might die before a drug actually kills me or does major damage, so I prefer to live in the moment. If I stress about the long term I won't live my life. I picked this surgery to have a better quality of life, for me a bag was not quality of life.

This really bothers me as well and I would remove this in a heartbeat but I am extremely scared of pouch removal surgery? Also, like others since this is autoimmune removing the pouch still might not be the answer.

I am just like you. I have been waiting the day for over 20 years to get rid of this pouch. They about killed me from the original surgery, and am afraid the removal surgery will finish me off. My mom has had an ileostomy for 50 years, never has had any problems, never had to take any antibiotics, and here i am constantly on drugs trying to make life manageable. The j pouch is definitely an over rated surgery. The only reason the so called succes rate is so high is because in most peoples mind it is about image success, by not having a bag on your side. If they measured it just by health success, then the j pouch is a loser.

Yup. Could not agree more. I'm on more drugs now than with UC and after my bad surgical experience I am very scared to have someone go in and try and clean up the aftermath. I would advise anyone asking to try and retain your colon for as long as humanly possible even if with meds ( assuming it is not a life or death crisis) as there is no promise you will not need them after surgery.

Amen Jeane

I'd still would have made the same decision because hind sight is always better. I don't think we would or are giving proper advice to those seeking information about j-pouch surgeries by telling them to do whatever to keep their colons. I didn't know I would be in the 4% that get cuffitis and that I'd have chronic cuffitis. I would never advise someone to take a medication that could cause cancer in the long run to not have surgery that has an overall 95% long term success rate.

We need to remember we are in the minority plus we still have our j-pouches. Are you not doing the same thing some of you are proposing telling those facing the j-pouch surgery in the first place - taking medications? If you hate it now you hated it then. You all had a 95% chance of getting off of drugs when you faced surgery and went for it (if you had the same information I had). We are all 100% upset we aren't in the 95%!

I'd might suggest a permanent ileostomy for a while, before determining if one wants a j-pouch might be a better idea than jumping right into a j-pouch. I would never suggest someone keep a sick colon that might rupture or otherwise compromise their health. I also would never suggest someone take a medication that I refused to take.

I'm mad as hell that I'm still struggling with this and the myriad of all my other health problems. So please don't attack me. I just disagree with you.

I think people may have different interpretation of what it means to keep your colon as long as possible. Most good colorectal surgeons would recommend that folks exhaust their medical options before having surgery. This is, arguably, quite consistent with a moderate understanding of "keep your colon as long as possible." It's *not* the same as "keep your colon if there's cancer in it" or "keep your colon if it's close to killing you" (or even "keep your colon if it's making every day a misery").

People of all different ages are here. Most of us, as we age, will find ourselves on some medications. It's not the end of the world, and it's often much better than the alternative. Avoiding medication is a poor reason to have surgery unless there are unacceptable side effects, and even then is far from guaranteed.

I had my pouch removed after 7 years and it was the best decision of my life! It was a hard road after surgery but the freedom I was given back was worth it so completely. This bag is a miracle and I thank god for it, it gave me a life again. Please don't live with the misery of a rotten pouch, I did for 7 years and that was longer than I should have.

Ve spoken with my surgeon twice about remodel and he won't do it. My GI also was for it. HOw do people just go get there pouch removed?

I think that the key is that you cannot force your surgeon to do something he does not want to do. When other folks have encountered this, they just kept seeking other opinions/assistance until they found a surgeon who listens with compassion. One thread I find sort of consistent is that many surgeons abhor the idea of removing a perfectly good pouch (especially one that they built!). But, they also tend to minimize the misery of poor pouch function. The pouch can be pristine, but if it does not work correctly, then it is a huge issue. There are a multitude of reasons why function can be poor, and it is a compassionate surgeon that accepts that notion.

It is a shame that you should have to abandon your surgeon over this, but that is what you probably have to do. He is not living your life. I suppose it is possible that you might still have good function, but it probably depends on how much you want to have your life controlled by it. I am not sure if I could eliminate so much of my diet to save my j-pouch. I suppose I would if I would have the same issue with an ileostomy, but that probably is not the case.

Jan

i do not think that is true about jpouch being a loser if the alternative a bag were removed....most operations are quite successfulis my understanding..success being most people are happier after having the operation..

now in my case i had issues from day one but actually reversed in that i was on many drugs ,antibiotics in particular for 7 years straight but now am antibiotic free after 7 years..thats really good news for me but truth be told i would have continued as long as i could keeping my pouch over getting a bag...what may happen down the road i do not know but i will do what i can to hold on to it unless i feel the trade offs are not working for me..

I don't want an ostomy. I hated my temp and it was full of gass, had leakage issues, etc. There is the "vanity" issue, or more like what I consider the psychosocial issues/adjustment, along with the "hassle factor" of worrying about and dealing with leaky bag, odor, bulging bag, etc.

My temp was many years ago and I assume there is better "technology" these days, reducing the leak issues and other challenges. And I understand that an end ileo is likely to have fewer issues than a loop (temp). But when I had my ostomy, I had psychologocal issues, hassles, had to bring supplies when I traveled, spare clothes/supplies in case of leaks, etc.

For me, when I had UC, my objective was to TRY EVERYTHING possible to keep my colon, even if that meant meds, for as long as possible. I dind't opt for a pouch to get off meds. My colon was a diseased hot mess megacolon ready to rupture, and I was happy that I could get j pouch since my only other alternative was perm ostomy.

Now I have dealt with many ups and downs over the years, and am dealing with chronic pouchitis treated by heavy duty meds. For me, I have decised that I will see the med course out and will get the perm ostomy if/when my quality of life is no longer tollerable and if/when I run out of medical options. If Immuran and biologics had been available when I had my colon I certainly would have tried them, so why not give them a try now (and I did, and the Immuran is working!). Yes, there are some minimal long term risks. I fell head first down some stairs last winter and shattered several bones in my risk. I still go up and down stairs today. The cancer risk of Immuran is small but real, although not tested on people with pouchitis, but rather with a different diseases. More recent studies that look at a wider range of diagnoses don't show the same risk. I stand a MUCH greater risk of being killed in a car accident than I do of dying of cancer due to Immuran, but driving is a risk I take multiple times a day, every day - why not stay home? Walk? I am willing to assume a certain ammount of risk to enhance my quality of life.

There are docs out there who will remove pouches in people who are having issues and no longer want to be on drugs. If this is what you want, you will just have to find one of those docs. I respect that an ostomy with no drugs is a better outcome for some, where a pouch with drugs is better for others. We each have to grapple with these tough decisions. Each method of treatment has its upsides and downsides and its risks. There is no easy answer.

I'll chime in to say that my jpouch has been awesome for the last 14 years and even though I'm having a little trouble lately with either upstream intestinal issues or pouchitis (not entirely sure yet - I just started a thread seeking opinions), it's still waaaayyyy better than my UC days (unremissive, medicinally managed to 5-8 painful stools a day, 24/7 with occasional hospitalization needed for antis and fluids) and waaayyy better than the interim bag. I'm thinking there are a ton of success stories out there so I don't think anyone mislead you in saying how great it can be. I'm truly sorry you haven't had the relief that most of the success stories have. It doesn't always work out I suppose.

I am glad you posted this question as it is one that is on my mind too. I have needed to rotate antibiotics for 4 years for pouchitis. Even with all of this medication, I also have a lot of issues with itching in the cuff and the skin surrounding the rectum.

Despite my frustration I am not willing to go through another major, risky surgery. Given I have a lot of skin issues now, I would worry I might have them with an ostomy site as well.

When I learned 4 years ago that my colon had to be removed (UC damage and dysplasia) I was given 2 choices, ostomy or J-pouch. What I was not given were statistics of any sort to help me make the decision. Maybe they don't exist! Ideally, one would want to know at a crossroads like that, facts to compare the 2 choices. Success rate, how much maintenance, medications, doctor visits, patient satisfaction, etc. for J-pouch vs ostomy.

I am trying to make the best of the choice I made. Would I have a more care-free existence if I had gone for the bag? Maybe. What I have now is not "low maintenance" and it carries some worry BUT I have my life back and am so glad to have this new set of annoyances rather than the debilitating symptoms of UC.

bet you have not tried the elimination diet yet.sounds like you had a great run 20 years but things change for everyone for all kinds of illnesses etc..

sure i was disappointed that i would after surgery require almost all drugs i used with uc and more or that i felt as bad as i did with my colitis just different bad..but i am persistent had to get over the outcome i expected and deal with what i have..eventually i discovered antibiotics to control my severe issues..did it in a heartbeat..than i found my body began to resist the antibiotics so i rotated them 4 or five different ones..there were no absolutes about the effect antibiotics would have on different individuals so it seemed a reasonable way to go..than i had some bouts with c-diff (again everyone does not have same outcomes) thought it might be good idea to see if i could get off antibiotics..thats when i tried the scd diet ..low carbs,no grains or starchy ones,low sugar and was amazed to find overall i could get off antibiotics at least since mid dec..still working on tweaking it..added imodium to slow me down another issue i had..never fell into the group of 6 b.ms in 24 hour group..it helps slow e down and in part firm things up..still working on how many is right number

for me i would hardly give up on my pouch with still things to try if i were you and if antibiotics worked i would do that ..maybe you will get another 20 years!!