Going back to stoma and bags. Too early?

Our experiences are different but I wish I'd gone back to an ileostomy sooner than I did.  My j-pouch started downhill and kept picking up different problems and they all stuck around.  I understand your feeling like a quitter.  I felt like that too. I just went to a diverting permanent stoma with out having my j-pouched removed on  8/31.  The problem is that we can't will ourselves to get better.  I'm stubborn and caused myself more problems and pain by trying to get mine to work.  I used it for almost 5 years and really should have gone to an ileostomy 18 months ago.  Second guessing ourselves is normal.  I don't feel like a quitter as I feel much better!

Good Luck

I struggled 3 1/2 years w chronic pouchitis before going to the ileo and then getting pouch removed.  It isn't giving up, it's moving on.  It really is about your quality of life now and itf it matches what you want your quality of life to be.  Will going to the ileo improve your quality of life? By how much?  How important is that to you?  If you feel ready the. It isn't too early.  I hate that people feel obligated to stick it out if it isn't working for them.  Do what you feel will give you the life you want.  Regardless of how long you have had the pouch.

Pouch advancement really is the treatment for your situation, I think. What have you read here that makes you think it might be a poor choice? Nothing is guaranteed, of course, and the folks for whom things went badly tend to be on this site the most. The successes are only posting here occasionally.

Pouch advancement is delicate surgery. If I were in your shoes I'd probably travel to Cleveland and have Dr. Remzi do it.

I did this twice .. went back to a loop ileo, then another takedown and had some failures, then talked to Dr. Remzi at Cleveland Clinic who said my problems were "mechanical."  He suggested I go back to a loop ileo, think about it, and he'll give me a new pouch.  Two months almost to the day with my new pouch and I feel fantastic.

I am sorry you are having such issues.  If you are young, you may want to consider it, but you need a break right now!  I was happy to have the opportunity to feel great on an ileo .. and it gave me the health break and attitude to give it another go.  

Quality of life is Job 1!  

have you tried canasa suppositories for the cuffitis?  worked for me.  and humeria cured a serious fissure that i had tried everything on for years and years.  took humeria for pouchitis, which did not work for me, but it sure cleared up the fissure, as the doc said it would.

i'm in process of deciding whether to have the k pouch or bag.  going through doctor consults right now.  yup, understand what you are going through.  tough.  jan

I would say that the good thing about a pouch advancement is that it is considered a more minor procedure and thus "lower risk." That said, people who have pouch advancements have lower outcomes.

There is nothing wrong with having a bag. For me and a lot of people, it rid me of all of my GI symptoms. If you have psychological issues with it, meet people who have a permanent stoma and see how they deal with it. Put on a stoma bag, fill it with cornstarch and water, and see if you could deal with it.

IMO if you have been taking medications long enough that they should have helped you and they didn't you probably have more than a mechanical problem.  You have an IBD problem.

The following is from a paper about IPAA problems.  A study mentioned in this article finds that people with j-pouches due to FAP don't get pouchitis.  IMO it is because FAPers don't have IBD.  They don't have cuffitis either as it is UC.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780072/

Dr.Remzi of Cleveland Clinic is a co-author

Look under the "Pouchitis" heading and/or 2 paragraphs from Table 2

"......Salemans and associates reported a pouchitis incidence of 44% in patents with ulcerative colitis and a 0% incidence in patients with familial polyposis....."

Scott - Thanks for your response. I guess the fact that it is a delicate surgery makes me worried about what could go wrong? Not sure what that would be. Does this procedure have a high success rate, and will it have an impact on strictures and anal fissures?

Richard,

My surgeon left my j-pouch in and diverted to a permanent stoma.  I think anytime they operate on your pouch it is called an advancement - but that is a good question. The dilation I had under anesthesia was a procedure more than surgery. I don't plan on having my pouch removed if I don't need to.  It's pretty common to leave it in.  I wasn't mentally or physically up for that big of surgery all at once.

Good thing as I got a bit of pneumonia and a UTI. They gave me IV antibiotics while there and I came home still on an antibiotic. They kept me in there for 6 nights vs 2. A week after those antibiotics finished I was just diagnosed with the lingering UTI.  I'm hoping that is why I've been having such a hard time recovering. My stoma has been awesome compared to the temp one I had so I am encouraged.

All of our situations are different so there might me a reason to remove your pouch now.    

Actually, all pouch operations are not pouch advancement. Pouch advancement is to remove the retained rectal cuff in those patients with chronic cuffitis that does not respond to conservative treatment and the function is adverse enough for surgical repair.

With this surgery, the pouch is detached, the rectal cuff dissected out, and the pouch is "advanced" to a more direct anal anastomosis. Often, this can be accomplished transanally. The downside is that this has a greater risk of nerve damage or sphincter damage that may lead to permanent incontinence. It is also a rather painful recovery, so a diverting ileostomy is recommended during recovery. 

There are other salvage repairs that deal with the pouch itself, the inlet, releasing adhesions, or opening sinus tracts. It just all depends on what your particular defect is.

Jan

Pouch advancement is one definitive way to deal with cuffitis. A typical J-pouch is stapled (in a circle) to a short (1-2 cm) stup of rectum called a "rectal cuff." In cuffitis that rectal cuff becomes inflamed, sometimes creating unacceptable symptoms, and sometimes not responding to UC meds. The surgical treatment is to disconnect the pouch from the rectal cuff and remove the cuff. The pouch is then "advanced" to the innermost portion of the anal canal, and hand-sewn to it. Generally a mucosectomy is also performed, which scrapes off the mucosal lining that is susceptible to UC. When the *only* problem is cuffitis, and the procedure is done well by an experienced surgeon, it can create a huge improvement. The hand-sewn procedure with mucosectomy is a delicate surgery, and carries a higher risk of incontinence than the stapled procedure, which is why it's not generally done unless needed.

I don't think it will help anal fissures. If the stricture is at the anastamosis and caused by cuff inflammation, then pouch advancement should fix it. If the stricture is elsewhere, not so much.

I had pouch advancement with good results to the cuff. Unfortunately it did not stop pouchitis and just recently had to be emergency diverted. Personally, I hate the bag, having leakage problems, and even though I tried everything still have guilt that maybe maybe I missed something as I would give anything to to reconnected ASAP. 

Scott, in all my years of being on this site this is the first description of pouch advancement  and hand sewing that make sense to me. Thank you!

That is the reason I got a perm ileo as every time I've read comparisons here people say they are much better than temp ones.

Scott, you are right my chronic cuffitis was blamed for causing the strictures at the base of my pouch. I had them in the efferent limb too......

This last surgery was done laproscopic and she spent 3 hours removing the adhesions that were all over my abdomen.  My intestines were attached to the mesh that was put in place during my incisional hernia operation.  Plus they were all over - which is another reason my abdominal pain was so bad.  I am looking forward to weaning off of Norco pain medication as soon as I get over the UTI I'm fighting.  One more medication I will stop taking!  If you have any adhesions I hope your surgeon is going to lyse them while in there too.  I am trilled that it was done laproscopically as recovery time is much shorter.

Thanks to all for responses. A fascinating discussion. I'm going for the permanent ileostomy. Can someone tell me what makes the permanent one better than the temporary one? How serious are leakage issues with a permanent bag?

This permanent one is better as the temp one was uncontrollable and I spent most of my time emptying it.  So I had dehydration problems with it.  I also couldn't eat much with the temp.  That was 5 years ago so I don't remember it all.  I just feel better with the permanent one and can eat practically anything - too scared to try fresh fruits and veggies yet.  I do eat them but in protein smoothies.

I relied on all that I'd read on hear from others.  They were right, the perm one is much better.  

Good Luck

I made a protein smoothie but found that it just ran right thru me  I have a loop, does it do that with the end?

I have only had loops (three of them!) and have managed very well -- but I think one advantage of a permanent is that it is much closer to a circle than a loop. While this doesn't sound very important, I think it would be much better for managing and you'd get a much better fit from the wafer.  The loop could be more like a fat figure eight to cover .. but the permanent would only have one "hose" end?  

My loop is a circle. It only sticks out 1/2 inch. Usually ends are longer. I have no idea why I'm having issues. 

I know how that feels   I watched my Vicodin run into my bag during a visiting nurse visit 5 years ago.  She said "No wonder you are in so much pain, there goes you pain meds."  

Do they have you taking Metamucil?  The nurses were bringing it to me the last few days I was in the hospital. I don't remember if they want you to use Imodium like products with a temp.

No to metimucil

Why can't you use it?  I have it in gel caps but had to drink it in the hospital - yuk!

I too feel as though going to the permanent ileostomy is in a way "giving up" but the constant pain I am experiencing in between my pouch and my anus is blinding!!! I really don't know how much more I can take.

Does your surgeon planning on a future surgery to take down your loop?  I have no plans on every using my j-pouch again.  Even though I am still fighting the nasty UTI I picked up in the hospital I can see things are much better than with my loop.  I'm having some pain at the bottom of my pouch and some mucus and blood comes out daily.  I was told to expect it.  Are you producing anything?  I know mine isn't waste as it isn't the color of my poop.  I can't tell if the source of the pain is j-pouch related or from the UTI.  These antibiotics are making me feel bad. When they are finished I might have to email my surgeon.  Hopefully it's all UTI pain. 

Have you been evaluated for a UTI? That might be contributing to your pain.  Have you seen your PCP?  It might be a good time to visit them and do a urine test.  

I am still needing Norco pain medication and was hoping to be tapering off of it by now.  Nothing is ever as I expect it to be.  

I have mucous and blood.  was just scoped. I have diversay colitis. Canasa did not help, trying short chain fatty acid

Hockadoo, I'm sorry for all the trials!

I had terrible cuffitis and fistula problems and eventually a Crohn's diagnosis.  I too was on Remicade. Long story short, I had my 15 year old pouch removed and a perm. ileo. in April 2014.  I'm doing amazingly well!  I agonized over the decision for YEARS.  For me, it's the best decision as the pouch and cuff are gone, so are any pills, pain and doctor's appts.  God is so good!  

Laura

This discussion has been helpful.  A week ago I had a CT-scan in preparation for meeting with my colo-rectal surgeon to discuss removal of my j-pouch and giving me an end ileo.  For the last year I have been seriously leaking especially with any movement after meals.  So I haven't been able to really exercise, and just in general it has been effecting my life enough that I'm ready to do without the pouch.  I know it is easier surgery to just leave the pouch in and do the ileo, but when I had the initial loop ileostomy between my original surgery and take-down in 1997, the pouch passed so much mucus etc, that I really don't want to take a chance that I'll have a different kind of leakage to deal with.  This needs more discussion with the surgeon, and I suppose what the CT-scan shows will have bearing, but the whole deal is what I'm heading for now.  The idea of the bag doesn't exactly thrill me, but I managed it  in the 10 weeks between my initial surgeries, so I guess I'll be able to deal with it.  My meeting with the surgeon to decide finally what to do and to schedule the surgery is October 15.  Any other input is always welcome.

i have found it more informative to speak with a gi doc who specializes in problems with j pouches, rather than to speak with the surgeon.  in my experience the surgeons are very focused on the surgery and not so much the pouch function.  have you tried PT/bio-feedback, or might the leakage have something to do with your diet, or is it cuffitis or pouchitis?  not sure where you are located and the availability of other docs, so please take my suggestions as being out of context.  good luck, and please report back, janet 

Dennis, three years ago I faced the decision about having my j pouch removed due to the presence of high grade dysplasia.  There was no option to leave it in and I was strongly against having the bag and its quality of life issues.  I was fortunate to find a surgeon who gave me a BCIR and removed the j pouch at the same time.  The surgery went well, I recovered quickly and now have a very good quality of life.  The k pouch is a similar procedure.  There are  complications that are experienced by a minority of patients (as also with an ileostomy) that should be considered when making your decision.  Lots of information on these procedures is available online and could help you formulate questions for your CR surgeon.  Since there is no going back once your j pouch is removed and your bottom sewn shut, you will want to see if anything can be done to improve the functioning of your pouch. The bottom line is that you want to feel good about whatever procedure you decide to have. Here’s wishing you the best!

Laura - Thank you so much for your response. It helps to hear your good news. 

AllyKat - I hated the five months I had a bag before takedown surgery. And now, strangely, I yearn for it. I have accepted - after almost two years - that I am one of the 5 percent to 10 percent for whom a J-pouch just doesn't work. As Carly Simon put it: "I haven't got time for the pain." I'm 63 and I still have a life to live. Whatever you do, I wish you the best of luck. It's a difficult and challenging journey. 

Judyk - I, too, initially felt as if I were giving up. It took quite a while to get over that. But, like you, the pain is too damn much. I hated the five months I had a bag before takedown surgery. And now, strangely, I yearn for it (have not yet had surgery). I have accepted - after almost two years - that I am one of the 5 percent to 10 percent for whom a J-pouch just doesn't work. Whatever you do, I wish you the best of luck. It's a difficult and challenging journey. 

For a totally - and I mean totally - different view on this topic, check out the survey I posted essentially asking the same question. Like the woman who has had a pouch for 20 some years and, according to her, has had no problems. Do these people really exist?

My husband thought the same he did not want to give in, he has not looked back since having the permanent ileostomy , we have been over seas on long flights , he now eats what he likes, he now has a quality of life, his j-pouch was just hell for 8months,good luck.