Pouch removal feedback

My J pouch of 30 years had to be removed because of high grade dysplasia. I had my original surgery at Mayo and returned there for a second opinion, which confirmed the diagnosis of my GI. All they would do for me is give me an ileostomy, which I did not want for the various issues involved. I learned about the BCIR (similar to a Koch pouch) and had it done by Dr. Ernest Rhenke in Florida. The surgery was difficult, but I had no complications from removal of the J pouch and my bottom healed quickly. I had a full recovery in 3 months and have a very good quality of life.

The Koch pouch and BCIR are alternatives to an end ileostomy and avoid the need for an external bag. It is my understanding that Crohn’s rules out a Koch pouch or BCIR for most cases, but there are some exceptions. You may wish to ask your doctors at Mayo about this and ask to meet with one of their ostomy nurses for more information about an ileostomy. I wish you the best.
Bill

Thanks Bill. I'll make sure to inquire about the BCIR. I had the loop ileostomy for a couple months and it was a nightmare. They actually moved up my takedown as a result of non-stop leakage. I think I'm most worried about the whole Barbie/Ken butt. Sounds miserable initially.

Jed I can tell you my dad has lived very comfortably and heLthy with a fine functioning end ileostomy for over 25 years. Never a complaint. I know it's a tough decision, but if I ever have to remove my pouch, he is my inspiration for feeling healthy after adjusting. It sure beats a poor functioning pouch and all the meds we take to try and hold on to it which I too have been dealing with since my takedown over three years ago.

Thanks Jeane. I appreciate your input. The pouch removal/Barbie butt surgery is what I struggle with the most. I'm not as worried about the end Ileostomy although my prior experience wasn't very encouraging I'll have to admit. My loop ileostomy literally leaked from the moment I left the hospital until I had my takedown. The finality of the removal and end ileostomy also freaks me out. I keep thinking they'll discover a simple/effective treatment to address chronic pouchitis but if I go through with this surgery there's no going back.

I totally understand your concerns. I often have the same ones and wish there were an easy answer for those of us suffering from chronic pouchitis. Best of luck.

I had my pouch removed after 3 1/2 years of chronic pouchitis. BCIR and K-Pouch you can still get pouchitis. Since that was my problem, I couldn't see trying a different treatment that might have the same complication.

Had a perm end ileo done in 2001 (at the age of 30) with discounnected pouch then had pouch out in 2003. Never a moment of regret. Best thing I ever did.

Hello fellow ISU'er I have a Des Moines surgeon and Clive GI who sent me and my problem j-pouch to Mayo's too. All I can add is they have helped where no one here could. My j-pouch is classified as dysfunctional too and I'm doing fine with alternating antibiotics an also use canasa and sometimes anucort suppositories.

My GI at Mayo's is Dr. Ed Loftus Jr., just in case we have the same one. I expressed my concern regarding long term use of antibiotics, which I'm alternating between 2 and am using with high doses of VSL#3. The way he put it was that we take lower doses of antibiotics for pouchitis treatment. He's never seen anyone needing larger doses for any other health problems. I know he's been there at least since 1998 as that's where I saw him for a 2nd opinion.

Please let us know how things go and Good Luck

That doesn't address your current pouch removal problem. All I hear from anyone that has gone to a permanent ileo is their quality of life improves and they'd never go back. My adult daughter's friend tried to convince me to not have a j-pouch to begin with because she is so happy with her permanent stoma. PM me if you would like to talk to her.

I appreciate the info and support, thank you. I think what I worry about the most with continued antibiotic use is at some point those antibiotics become ineffective and God only knows what they've done to our normal flora(good bacteria) found naturally in our bodies. I've tried the VSL #3 with no positive results. I feel like all too many times physicians treat our symptoms with drugs instead of focusing on the cause and addressing that. After spending 15+ years with my surgeon in Des Moines I asked her just that and it was the last time I ever saw her, she sent me to Mayo. During that last visit I asked her nurse when it was just her and I in the room, "how many of your j-pouch patients are in the same boat as me?" She said almost all of them. That response really surprised me. The j-pouch was pitched as a cure for UC to me. It's been far from it in my experience. My Mayo doc actually thinks I was mis-diagnosed and have had Crohns all along. That was a tough pill to swallow as most of you know they likely would never do a pouch on a guy with Crohns. I hope this post doesn't sound too pessimistic but at times I feel completely defeated and it's hard to find that silver lining. I meet with my Mayo crew next week to discuss the end ileostomy/Ken Butt and my gut(pun intended) is leaning toward doing it.

I'll put in my two cents also...

I'm singing the same tune as Jill. I had my jpouch for 15 years and just had it removed 6 months ago. K pouch was not an option as I have Crohn's and my GI said a K pouch may only lead me to more issues. Therefore, I have a perm ileo and am doing so amazingly well. No pain, no drugs, no leaks, not even that feeling that I need to run to the bathroom. Perm ileo is totally great right now.

I was sent to the Mayo for a 2nd opinion in 2012. I saw Dr. Susie Kane over the course of a few days and then was sent home to Maryland with the recommendation of an ileostomy within 7-10 days. I was so scared and put it off for a year and half.

My barbie butt healed great, but it takes a long time (6-7 weeks for me). I didn't do anything but recover for 8 weeks. I'm glad I did because now my perianal skin is completely cleared up (had setons, fistulas, skin tags, etc) since I had horrible Crohn's of the cuff and a mass next to it.

I liked your gut pun "And sometimes I hate my guts" is another one that I read that I laugh at- but today I'm loving what's left of my guts because they are working like normal (my normal, that is)!

Laura

Thank you Laura. Dr. Kane is on my case as well. I know everyone's experiences are different but I have to ask, on a scale of 1-10 with 10 being the worst how was your removal/Barbie butt surgery? What was the best and worst part of it? Can you walk/sit right away? I know this may be a little personal/graphic but where are the incisions and about how long are they? Do they cut open the same scar from the j-pouch surgery? Sorry for all the questions but any you feel comfortable answering would be really helpful.

In my experience, the colectomy was by far the worst surgery for me. I lost 25 pounds, spent 31 days in the hospital over 10 weeks time, had abscesses that had to drained, picc lines and iv antibiotics at home. The worst! The excision surgery was so much more straight forward, for me. I've read plenty of stories that are not the same.

My abdominal incision is the same for both my colectomy and excision (about a 22cm midline incision). This took about 6 weeks to heal this time. It was opened up in a few spots to help it heal and I think it was a good 6 weeks with gauze. But no infections, just time to heal it fully. My bottom was sutured on the inside, but I could feel a knot. They all dissolved over time.
To recap: my colectomy surgery was a 10/horrible and excision was a 5/half as horrible.

After surgery, you can sit up, but they recommend to not sit at an upright 90 degrees as this puts extra pressure where you don't need it. They recommended a recliner for sitting and I spent most of my time in bed and on the couch. Or sitting, but leaning on one side to keep the pressure off dead center. Yes, you walk the next day. I actually walked each and every day after surgery. Short distances at first, but all around my neighborhood in the very near future. Gotta walk and get that system working again.

No lifting. I didn't lift anything (not my toddler son, not a gallon of milk, not a grocery bag) for 8 weeks. This was beyond their recommendation, but I didn't want to mess up any of that healing. I ate lots of protein to heal also. Stay hydrated. I also was on major pain meds(4 of them) for at least 4 weeks. There was dramatic improvement in my healing at week 4. I had friends shopping, making meals, cleaning, etc for 8 full weeks. So glad I did. I was anticipating my colectomy recovery and 31 days in the hospital, but it was only 7 (because of ileus) and then one trip the ER for dehydration about 2 weeks out.

The worst part was the unknown- the fear I created of all the "what ifs". The best part is my butt doesn't hurt EVER. The best part is that I sleep all night long.

Prayer. That's my greatest recommendation. God was truly merciful to me this time! I had everyone I know pray for me. My trust was fully in Him to sustain and heal me.
Laura

Jed, I can only think of one thing to add to these incredibly encouraging posts: There is a WORLD of difference between an end ileo and a loop ileo. The loop is much more difficult, output is thinner, skin burns from leaks (you probably know all this already.) I don't know if you ever had an end ileo but it is a dream compared to the loop The end is what you get with pouch removal/ perm ileo surgery. I hope this helps.

Well Laura. All I can say is your story is inspiring. It's helpful to hear what others experienced. I'm bad with the what if's. It's easy to dwell on all the possible complications that could arise even though it's unlikely they will. I'm hoping my consult with the surgeon next week answers a lot of my questions and he's a down to earth guy who will shoot me straight. My GI journey is approaching 20 years and in the last couple I find myself wondering if non stop antibiotics and other drugs is the best we can do? But at this point it seems the only alternative is major surgery. A choice I wouldn't wish on my worst enemy yet here we are. I hate that part of this journey so many of us are on.

Lambie I've heard others say that and it's hard to believe there would be such a drastic difference but I've heard it from folks on this site as well as docs and surgeons I've spoke with. I sure hope I have a similar result with mine. You nailed it. The leaking, skin burn and watering output were the worst.

He'd,
As others and you have indicated, freedom from a continual sore butt, a full night of sleep and no more constant oral antibiotics, suppositories and rectal creams are most likely what will eventually have me make the leap to remove my pouch. Try and focus on the renewed health you will have after healing. I know it's a long road from here to there but stay strong.

You know - you're right. A couple of times a year I actually do sleep through the night and I always wake the next morning feeling like a million bucks!

My conversations with the surgeons always ended with me crying. I was so scared of that excision surgery. I just couldn't take the thought of permanent being permanent! My surgeon also shared that he takes out about 6 pouches a year. 60% heal well, but 40% not as well (meaning more surgery? complications? to scared to ask). It's a lot to consider! He just kept reassuring me that I will feel better after healing. And it's true for me! I read a few posts from people who say the 6 month mark is when they really feel good and have the hang of the ileostomy again. I would say for me, I felt great and had the hang of it all by 12 weeks. My stoma is a nice one, so say the ostomy nurses I've seen It's in the same spot as my temporary one. I HATED my first one and cried every time I had to change the wafer. This time? Like a pro from the start! Not a tear!

I tried everything before this surgery: antibiotics off and on, diet (SCD, GAPS), acupuncture, Remicade, minor surgeries. I have no regrets because I tried it all. Some of it really helped me for periods of time. It's just that my disease was progressing and I was out of options. Nothing was controlling the inflammation and fistulas by the end. I just had lab work done last week. Historically, my CRP or SED rates were always in the 20's. Today? 1 and 2. Amazing!

I hate disease and agree that it's just the pits! Chronic illness is so hard. We all deal with so much daily. I hope you too can find much relief in the next steps, even if the recovery takes a little while.
Laura

unless there really is no way to control my pouch issues i will not consider the permanent removal..in part because i have no guarantee that i will do as well as laurie..my record with my intestines has aways put me on the side of the low statistics(problems with controlling uc ending operation..only 33 per cent need it) problems with the uc cure of pouch( only 20 or less percent have chronic pouch after pouch surgery) in both instances ..i fell into the wrong side..i have no faith i would not fall into the same low number of people with problems of end illeo..nope i will take my chances with rotating antibiotics for now but still hoping i come across another way to control my pouchitis..

diet worked for awhile and in my hip pocket i have the possibility of using oregano oil..to switch off antibiotics..either long term or a break from those we all use..

right now i have an order for goldenseal i am to take from my new chinese med dr..and something else in pill form..

ISU Jed, Our surgeons are probably in the same medical group. Your doctor checked me out over the weekend once while I was hospitalized. I got the "this surgery is going to cure your UC" presentation before my surgeries too.

My GI referred to Mayo as he said my problems needed an IBD specialist and there weren't any in the area.

I discussed the long term use of antibiotics with my Mayo GI, Dr. Edward Loftus Jr. He said they prescribe lower doses for our j-pouches than are prescribed for other medical reasons. He's never seen a j-poucher have a problem when needing antibiotics for more serious reasons. We are all different, our ages, j-pouches, and things wrong with them.

That's a scenario I've kicked around many times through the years - do I just stay on the meds and see what happens down the road or not. My concern is that all medications have side effects. Antibiotics in particular tend to lose their efficacy over time. I've already seen that with Flagyl, doesn't work as well and I get massive headaches while on it. I know we're all unique and the way we treat our ailments needs to be individualized but I think for me I hate being dependent on meds and I'm hoping the removal surgery will alleviate this long term. I hope to process through this a bit more in depth with my Mayo crew in a couple days then make a decision.

Medications do indeed have side effects. So does surgery, though we ussually use different language for the unintended effects of surgery. It's best not to compare the worst case of choice A with the best case of choice B.

The continued reliance on meds certainly is an option but if I'm off antibiotics for 1 maybe 2 days things start going south in a hurry. It literally feels like UC all over - frequency and urgency. I honestly don't think I could hold down a job or engage in other activities without the daily antibiotics. That's what has me looking at alternative options. My Mayo GI concurs that the end Ileostomy is probably the best option at this time. But the finality of that procedure scares me. There's no guarantee it's the right choice. I don't see hope in the comtinued med route but there is a glimmer of hope that the end ileostomy procedure goes off without a hitch.

I think the key is whether the antibiotics are working well - at least that's what's important to me. So far, at least, I've been able to find antibiotics that I tolerate well and my GI tract is functioning very nicely. I think it would be an error to treat that (the need for antibiotics) as a problem warranting surgery. If, OTOH, the antibiotics aren't really doing the trick, or cause unacceptable side effects, that's a different matter entirely.

Rebecca, I was 6 months from dx to j-pouch. I had chronic pouchitis from minute one. And my pouch removal was a TOTAL AND COMPLETE SUCCESS. I recovered from that surgery better than any of my others. My body just did not like the j-pouch and was so happy it was out that I snapped back faster than any one thought possible.

I think in addition to whether or not the antibiotics work, one has to consider what the long term implications of continual antibiotic use are...its a personal issue but I did not want to have the drugs in my system continuously...

Clearly pouches fail, and pouch removal can be quite successful. I'd caution against vague concerns about long-term antibiotic use. There are real things that medications do, so I don't suggest using them lightly, but the "monster under the bed" method isn't the best way to assess risks in life. That additional surgery is likely to create additional adhesions, and those carry a lifelong risk, too.

There are many things to factor into a decision and one is age. I am pushing 60 and don't have as long of life expectancy and many j-pouchers.

I elected not to take biological medications because the risk wasn't worth it. I felt I was ultimately going to need the surgeries. I respect someone else's similar decision to not rely on any LT medication.

I'm not ready to have anymore surgeries but who knows if or when that might change. I have too much adhesion pain from 5 surgeries and the thought of more surgery is a huge deterrent for me.

If anyone contemplating j-pouch surgeries is reading this, I'd strongly suggest that you have laproscopic surgery. Throw in a robot to assist lapro surgery if possible. You should have faster recuperation from the surgeries and fewer adhesions, if any.

I felt like we had some interesting feedback from this thread and I appreciate that. One of the focuses seemed to center around whether a person is willing to commit to lifelong dependence on meds, primarily antibiotics or look at surgical interventions. After meeting with my Mayo crew and discussing pros and cons I've scheduled the removal for the beginning of December. I'll do my best to chronicle my surgical experience and recovery in hopes it may help others down the road.

I hope your upcoming surgery improves your quality of life and look forward to hearing about your recovery

Good luck - it was a huge success for me and hope the same for you!

Scott - respectfully, concern about long term antibiotics is hardly monster under the bed thinking. There are plenty of concerns both personal and societal about long term use. Side effects can develop at any time and there is no way to know if damage from side effects could be worse because of long term use.

Antibiotics aren't supposed to be for long term use so there isn't reliable test info on the implications of such.

As a society we are facing super bugs because of frequent and long term antibiotic use. While this alone wouldn't be my reason for avoiding long term use, it is part of it.

This is a personal decision and I don't criticize those who opt to take the meds. That's their decision. Please don't assume that my decision was made lightly, without thought and consideration.

Jill, I'm not criticizing anyone's decision, and I apologize if I inadvertently made it seem that way. Decisions made under uncertainty are difficult and personal. I'm certainly not suggesting that long-term antibiotics are something to be desired. I *am* suggesting that when a decision must be made about two paths, and both paths include risks and unknowns, it's usually an error to exaggerate the risks of one path, or ignore the risks of the other.

I think responsible antibiotic use is an important social issue, but I don't believe that means *anyone* should compromise their individual health in the name of prevention of superbugs. I respectfully disagree with your idea of how antibiotics were "meant" to be used. IMO they are meant to be used in whatever ways do the most good and the least harm. I don't think there's any room in that analysis for imposing a made-up philosophy of antibiotic use. Nevertheless, like any medication, they are more likely to have more consequences in ten years of use than 10 days. As far as the alternate (surgical pouch removal) path, some will get a great result, some will get a terrible result, and many will fall in between. It isn't a choice between awful antibiotic hell and post-surgical bliss.

Folks, I'd like to add my two cents. Our j-pouch journeys can be very stressful for sure. We are all different in how we view them, how we react to them, what's most important to us, what is the hardest for us to tolerate, how anxious/depressed/overwhelmed our experience makes us feel, etc...
There is no cookie cutter approach. We each need to evaluate our own experience. One person may want to save his pouch at any cost because he finds the thought of a bag very stressful. Another may be worried about a surgery. Another may be worried about constant meds needed to make the pouch work. Another may be young and concerned about how a bag would fit into a relationship. Another may be tired of being the "patient" because it makes his role as caregiver harder. Another may bo so stressed over missing yet another thing that she doesn't want to miss ONE more because life is too short. SO many aspects go into the decision regarding whether or not to keep one's pouch or have it removed and no one can answer for you. When I thought about how I wanted to live my life and how much stress my j-pouch was causing me, causing endless migraines even when hydrated, making me feel isolated, I knew I needed to try for more peace in my life. It became so clear to me and all the peripheral concerns didn't matter. Is this surgery major? Absolutely. Will recovery be major? Yeah. Will I need to find a new normal? Definitely. But it is undoubtedly the right answer for ME. We know there are side effects to everything. What will give you the most peace? Answer that, listen to your gut (no pun intended) and then you will know what is right for you.

All this discussion highlights for me how there are no easy or clear answers in regard to whether saving a problem pouch is worth the effort. I am certain that is why most who face the choice tend to struggle with it.

Bottom line, it all boils down to quality of life and what risks you feel you can live with. Each case is different, so comparisons are not really accurate.

For example, removing my pouch would not make my life drug free, since I take drugs for related but independent disease. I hope I don't have to face pouch removal, as I fear intolerance of appliance adhesives. My skin is extremely sensitive. But, I would not want to live as a bowel cripple either.

Jan

I wanted to thank everyone for the insightful feedback and dialogue on this thread. Scott and Lamb did a great job of presenting concerns any of us need to process through in regards to not only our pouch health but our overall health as well. Jan - the other day at Mayo they tested me for potential allergies to all the ostomy supplies they recommend and some others as well. Reassuring as they were all negative. Just wanted folks to know you can do this in advance to alleviate any worries.

Wow, what a great concept Jed! There have been a few here who could have used that before opting for the ostomy. In particular, one who who was allergic to every single appliance. He eventually had to travel to get a continent ileostomy.

I am going to remember this in case I need it in the future. Thanks again.

Jan

isu perhaps this may help..if you stay with the pouch and have refractory pouchitis(chronic ) than yes right now in time the answer is antibiotics and to manage it better is to rotate the antibiotics...if you tolerate the antibiotics then you should not be so fearful of what it may do to you in future i think..i have spoken to my latest dr. melted in l.a ..he has been recommended to me from dr. shen who is my dr. in cleveland..he i very knowledgeable and he asked me what reservations i had about antibiotics..i told him fear of the resistance..he said the good news is if you are off them for a period of time your body will be able to use it again and i have found that to be true..as far as all the good bacteria they kill well they are killing a lot of the bad bacteria that my body accumulates and causes me terrible symptoms..so one has to try to replace the good with probiotics,perhaps a starch and sugar free diet...its the price we pay to keep the pouch if it just has issues like pouchitis..

otherwise the choice is removal..

the doctors cannot necessarily know exactly what is the cause because its very complicated and that and other answers are still being studied..what they do know is antibiotics help control it..

Do any of you want to have your pouch removed but the surgeon is hesitant and keeps saying, "give it more time"? I have had my pouch since June 2012, takedown December 2012, and immediately had cuffitis and Crohn's in the pouch from the get-go. I had a diverting ileostomy created March 2013, and had to have numerous small bowel resections above the pouch due to recurring Crohn's. I had an ileostomy reversal in March of this year, and have been using my Jpouch since then. I am on meds for the Crohn's but still have annoying but not life-threatening inflammation (like I had above the pouch). I continue to use the bathroom 20x a day, urgency and pain when I go, and waking up atleast 3 times at night to use the bathroom. My decision to remove the pouch is for quality of life purposes, yet my surgeon sees me as out of the hospital (I had a 6 month stay until April of this year) and wants me to give the pouch more time. But in my head, I know how great life was between the pouch creation and the first ileostomy reversal, and I am tired of waiting when I can put this all behind me once and for all, hopefully! I feel stuck! If a person hates their ostomy and has the option for a reversal then a surgeon will hear their concern, so why can't a surgeon do the same when someone hates their pouch and loved the ileostomy?

colonless commodore,
I don't understand your surgeon either. I'm confused as a surgeon's job is usually to perform surgery to save the life of the patient or as in your case to improve your quality of life. How does your crohns disease factor in here? One wants to keep as much of their intestines as possible but on the other hand it doesn't make sense to keep your j-pouch if it's causing the resections above it. Does your pouch have anything to do with the resections? It appears to me that you clearly tried to keep your j-pouch. Your 6 month hospital stay and attempts to get your j-pouch to function properly show that. I think you need a second and/or third opinion. ISU Jed has done that by going to the Mayo Clinic. He didn't want to keep accepting his original surgeon's opinion either. I know a guy that went back to an stoma 6 months or so after his take down. He suffered from chronic cuffitis and could no longer do to his physically demanding job. He did leave in his j-pouch for the time being. Have you considered to going to a stoma and leave your pouch intact but unused again? If I understand your post correctly, you've already tried this.

It's your life and your body.

My experience at Mayo has been exceptional. Everyone I've had contact with has been down to earth and very professional. The physicians and surgeons have all given options but always say,"we're going to do what you want to do". I've always felt like my voice is being heard.

As many of you know I'm roughly 2 weeks out from my end Ileostomy/Ken butt surgery. As I've looked back at the last 20 years I came up with this - I have no identity. Seriously, the list of drugs, diets and lifestyle changes is endless. So many times I'd get excited about a new diet or drug or probiotic that would supposedly help my pouchitis. And maybe things would improve for a few days or even weeks but inevitably they all failed. You guys know some of these lifestyle changes are tricky and take a lot of effort - low FODMAP, paleo.. Each new drug comes with a laundry list of side effects as well. So through the years I've committed countless times to each new attempt only to have it fail. Takes it toll physically and emotionally. I can't tell you how many times I've thought,"ok, this is going to be the diet that works". Oops, guess not. How about this drug... Nope, let's try this one. Back to my initial lack of identity comment, I guess for the last 20 years my identity has been the guy who's tried every diet and drug under the sun and has finally reached my limit. I cannot and will not continue to condone treatment that addresses the symptoms only, not the cause. I despise being dependent on drugs, period. I realize there's always the chance after my surgery I'll need to go back on certain drugs but I'm willing to take that chance. When it's all said and done I'm hoping my new identity or at a minimum nickname will be "buttless and gutless". Great name for my band if I had one or any musical ability for that matter