I am posting this to ask other's opinions
on my next steps based upon my jpouch experience to date.

After 6 very difficult months with my j pouch, I am going to have a discussion with my surgeon about removing it. I have had chronic, unrelenting pouchitis since before takedown that can only be managed with augmentin. It is now in
full force again after attempting to reduce my dosage from 875 mg (2 times daily) to 500 mg (2 times daily). In addition, I have been taking VSl3DS twice a day for months and pepto bismal/immodium combinations, canasa suppositories, cortifoam and every cream imaginable(numbing ones also, as well as zanax to try and help with my symptoms. I am at the point of not eating to ease the pain.

Last night I had to leave the table at the restaurant to wait in the car for my family and left my dinner uneaten at the table due to the burn and pain I had after using the restroom.

I have been absolutely miserable for the last week. I am barking at everyone in my family, crying most nights and only getting relief when I run from the toilet to the bath. The pain/burn and itch are unbearable. I am in the bathroom way too many times to count, passing literally nothing each time with constant straining and then I am in agony after until I get relief which can take up to an hour or more in the tub.

I am extremely discouraged at the moment and just need to find a way to feel well and move on with my life. I just never expected my health to be so much worse after this surgery than when I had UC and I do not want to take it out on my family members as I feel I have been lately as I feel so terrible and I am also very angry at this whole situation.

I am sorry for the long post but I feel so lost at the moment and no one understands just how bad I feel and my family is losing patience with me.

Has anyone else had this experience and if they have removed their pouch are they much healthier and happier? I am tired of trying to suck it up and I just want some quality of life back with no pain even if it means a perm ostomy.

Any advice is appreciated.

Check out the facebook site My Doctor Knows Me Best From Behind. She decided to go back to the illeo after a bad jpouch experience. Have you considered BCIR? I hope your doctor can help you.

The best advice I have for you is simply "just do it." The eight years I spent with my j-pouch were hands down the worst years of my life. Everyone tried to dissuade me from going back to the ileostomy, but I was so uncomfortable that I knew it was the right decision. One year post-op, and I feel like I have a new lease on life. Don't wait like I did.

I'm so sorry you are still having horrible time. There is a FB group, that a lot of us are in, and one group member just went back to an ileo. I think he had his takedown around the same time as yours.

Send me a PM if you are on Facebook and want to join the groups. There are two groups and you need to have a member add you to the group. They are closed groups so noone but members see the posts. It seems like you get answers to questions faster than on here.

I'm still in pain but nothing like you are going though. It doesn't sound like you've gotten any better than right after your takedown. So sorry you are still going through this.

The other guy couldn't handle pouchitis with his job that requires physical activity and he was fine with the temp ileo. He went back to a temp and didn't have his pouch removed yet.

I hope you have pain medication and the xanex is helping you too.

I'm still taking pain medication and xanex. I keep fighting dehydrated. Plus they are treating me for IPS which is like IBS treatment. I don't think it is helping. Do any of your feelings feel like IBS? I'm taking antispasmotics. Have you tried using anything like that?

Kjeane,
I am so sorry that you are suffering so much.
Have you been screened for allergies? You may also have sensitivies to certain foods that are agravating your pouchitis...have you tried (sorry to say this but It did work for me 20+yrs ago)...going off of everthing for a few days (nothing but fruit/fruit juice, tea and fluids (no milk products)...And then slowly bring back things like chicken breast, lean meats and fish...it may (or may not) help but it is worth the try before giving up on the pouch.
PM me if you want the full detox and I will walk you through it.
Hope that you get relief soon because it is not normal that you are suffering so much.
Sharon

Kjeane- I don't know how set you are on keeping your pouch. Are you able to go to the Cleveland Clinic? That's what I would do if I was in your shoes.

Just to let you know it took a full 8 months + for me to feel any relief after takedown. That is when I found the right mix of antibiotics/OTC pills for my pouchitis/cuffitis. Maybe it's time to try something other than Augmentin.

Like I said, it depends on how much you want to keep your pouch. I think you're justified in how you are feeling and what you are going through to go back to the ileo.

Kjeane - have you tried other antibiotics for your pouchitis? Speaking from experience, you can't stay on Augmentin forever without rotating to another antibiotic or it will lose its effectiveness. I've sucessfully been rotating it with Cipro and I'm going to start up on Pepto Bismol soon. Before considering pouch removal, know that there are at least 5 or 6 antiobiotics that work VERY WELL for pouchitis that people use. There are even more you can try that might work for you as they do for some. I could make a list of probably 12 that I know that people have tried.

As others have said, its really up to you and how important having a pouch is to you. I take antibiotics every day, and I'll gladly continue to keep up with this my whole life it they keep working. With chronic pouchitis, maintenance is required, and you have to rotate meds. After too long on one antibiotic I could easily feel the same as you, but I switch as soon as I start to feel it's not working. As long as I keep up with it, I feel just fine and am as healthy as any other j-poucher w/o pouchitis.

My advice would be to try other meds before throwing in the towel (unless you already have run the gamut of antibiotics and alternative meds). You might just find one that works amazingly well for you to give you your quality of life back. :-)

I had the same questions as in the last post, whether management has been attempted by rotating on to other antibiotics. Augmentin is one of about 5 or 6 I have used regularly but right now I rotate every month from xifaxin/pentasa & PB at night as needed to cipro/flagyl/pentasa & PB at night as needed and at beginning/end of rotation. Rotating antibiotics has worked well for me. You seem to have adopted the mindset that you can't be on antibiotics and you have to constantly try to wean off and this may be a losing strategy. You may need to have a certain maintainance dosage beneath which your symptoms become unmanageable. For me, weaning off antibiotics leaves me in exactly the state described in your first post. So I don't wean off. It is like putting your hand on the stove, you learn it is hot and burns so you don't touch it.

On the other hand if the other antibiotics do not work or you agree with doctors who tell you that you constantly have to wean off antibiotics then things probably are not going to get better, unless you stay on the maintenance dose of Augmentin and then rotate on to something less efficacious and go back. And you may not want to do that but if it was me I would try the other antibiotic options if you have not done so already. I have been taking higher dosages of antibiotics than you continuously for 16 years and apart from the occasional yeast infection/oral thrush, my pouchitis is kept in a very manageable "simmering" state and my quality of life is good.

Good luck with your decision.

Thank you for your responses.

It seems I was doing fine on the augmentin at 875 mg twice daily until I requested to lower the dose to 500 mg twice daily. I was probably doing much better over the last couple of months on the 875 dosage. Within a week of reducing I completely fell apart. I missed a few days of VSL3DS and canasa also and here I sit, bloated, aching insides and sore behind. The flare was worse this time in that my anastomosis is so inflamed that I can barely pass stool through or insert the canasa and I find this confusing as others often have incontinence with pouchitis and that I do not have. My insides are sore though and my back end is very raw from all the straining to empty over the last week and the battery acid burn that comes with it.

I have been back at the higher level of augmentin for a few days and I am starting to feel somewhat human again. When I saw my GI doc about 2 months ago he gave me a prescription for flagyl and I have not started it as I would prefer my colorectal surgeon first approve it and to be honest I was afraid to try it due to the side effects. I was not ready to face the 'I need a new antibiotic' route as that just places my mind closer to the epic fail path of this surgery.

I also have a stricture and until I get dilated next month with biopsies done, I am not sure if I have chronic pouchitis or not and if the stricture is causing my issues or the pouchitis is worsening the stricture. It is like a cat and mouse game.

The last thing I want to do is give up my pouch but living like this is no picnic. I never get more than 4 hours of sleep and I am always tired and ache and honestly feel so much worse with this pouch than I ever did with 25 years of colitis. My colitis was pretty well controlled although chronic in nature and I stills say I would have never opted for this surgery if they did not scare me with the low grade dysplasia finding.

Sharon I will pm you as I would really appreciate your input. Thank you for the messages and thoughts, I am going to call my nurse tomorrow as she was on vacation. I may request an in office dilation as I cannot get into my surgeon until Jan for a dilation under sedation.

Thanks DJB,

I am going to discuss this at length with my surgeon. I know I am in denial and was hoping to live life medication free after having this surgery and I am bothered that I may require antibiotics indefinitely (and my GI doc always pushes me to get off them also). I think what worries me more is the day when they may no longer work for the pouchitis, so I was always hoping to be the 'hold out' situation and hopefully live with my pouch for as long as possible without resorting to meds. I know that is not possible now as I have had pouchitis since before my takedown (6 months now) that will not remit. I guess I am at the stage of trying to deal with more meds and finding the right ones that hopefully work for me to keep my pouchitis at bay or opting for surgery.
With how bad the pain was the last few days I would have cut my pouch out myself if I could have. Thank you for your response.

.

kjeane,

16 years ago I had all the same questions. What will be the long term impact of taking antibiotics? What if they stop working? I went through a parade of non-effective treatments including probiotics, rowasa enemas, cortifoam enemas, and when I went off the antibiotics basically I ended up feeling like you. It was very frustrating but I feel as though partially it was the mindset of doctors trying to do everything to get me off antibiotics and not fully appreciating the suffering that was occurring when that was attempted. It was then that I realized I could not get off them. My doctors told me I was basically a "guinea pig" as to what would happen taking them long term. But there are more than a few of us who have what is called chronic antibiotic dependent pouchitis. Personally, I would rather have my J Pouch and take antibiotics than the alternative which is a permanent ileostomy. But that is my personal decision. You may come to a different decision but I would hate to see you give up without at least trying other antibiotics and giving them a chance to work. If they provide relief you may feel like you want to keep your J Pouch. It sounds like you have not exhausted your treatment options but ultimately it is your body and you have to do what you feel is right for you. Good luck.

I'm the opposite of DJBHusky. I would rather have my perm ileo and be drug free and diet free - which I am. Everyone has a different perspective on this.

Most important before you see your surgeon is to really understand what you consider a quality life. Are you ok with long term antibiotics if they work and your pouch functions well and you have no pain? Or do you want to try for med free? What kinds of other things are you willing to do - adjust diets or activities, try holistic approaches, etc...How much of your life - short term being the day to day and long term being over the course of years - to making the pouch work? There isn't a "right" answer to this - everyone is different.

You need to understand what you want, what you are willing to do and how much time you want to invest. Then you can have a productive conversation with your surgeon. Just know that no matter what you choose there are no guarantees. You could choose perm ileo and still have issues, or have new issues. Or you could choose to try different drug therapy and have it not work. You just have to know going in that you are making the right choice for you and then move ahead with hope.

Let me know if you want info on pouch removal. Even though it is very complicated surgery, I recovered very quickly (walking a mile on my own within 2 weeks of surgery) with no complications. It was my easiest surgery, I believe because they finally got rid of the problem. I have not had GI issues since - that was 2001 for the perm ileo and 2003 since the pouch removal.

i agree about going to see Bo Shen. He really helped me and I still have an illeo. he is so worth checking out even if it just an internet consultation...Cleveland Clinic does this.

Thank you everyone. I really appreciate all your varying opinions. I honestly think I am just so worn down from being chronically ill with chronic UC for almost 25 years and now my jpouch for 6 months, albeit a very trying 6 months.

Sometimes I wish I opted for this surgery earlier in my disease course and at a younger age (I am 48 this year) as I would not be so worn down from chronic illness and maybe the surgery would have been more successful than it seems to be thus far.I looked to this surgery to cure my illness and now my emotional state has been severely impacted based upon my last 6 month's experience coupled with feeling more ill than I ever have in my life.

I need to somehow clear my head and start writing my pros and cons down and have a serious discussion with my surgeon after this. I want to believe I can deal with a permenant ostomy if I feel better, but I was so anxious to get rid of it when I had it and every time I am considering it all I can do is cry at the moment. I worry I may decide to exhaust all options prior to going that way and then suffer for more years in between.

I told my husband last night that UC robbed me of so many good years of my life that I refused to let this surgery do the same. I am now off to bed after getting 4 hours of sleep last night with the hopes of getting some more rest this eve so I can possibly think clearer tomorrow and come up with my game plan. Thank you again for your responses.

It seems like it comes down to a personal decision but at base is the question: can you accept your level of well being/pouch function achieved with what medications are available. I think complicating the question is the relatively short time you have had the pouch. Your situation is somewhat similar to mine in that I also had UC for 25 years and it didn't much affect my life... until I got cancer. I am about 13 months out and have determined to make my decision next summer. Our symptoms are different, my big issue is incontinence, burn and pain very much secondary. I have tried Cipro, Flagyl, Xiflaxin, recently your dose of Augmentin and Sulfasalazine only Flagyl has helped much and I wont stay on it permanently. plus it didn't help enough. My pouch looks pretty good except for some inflammation it just doesn't work very well. At its best it is OK at its worst I am ready to rip it out, on average it is not good. What I have noticed is that I am adapting to poor poor pouch function that is not doing things I would "normally" do. I think this is a very slippery slope. The good thing is I did well with the loop ileo and given my age I don't really have a vanity problem or not much of one so if I ditch the pouch it will be without much regret.