After getting a temp ileo formed in October 2015 to divert my J pouch and assess my fistula fiasco, I am finally ready to say goodbye to the J pouch forever. I scheduled surgery for removal in early January. I had many good years with my J pouch, and am always a supporter of others trying the J pouch, but I know my time has come to go permanent ileostomy and Barbie butt. I have had a lot of issues dealing with menopause since 2015 but I finally feel mentally and physically ready to do this. I hate to sound like some hormonal psycho, but I had no idea that menopause could be such an annoyance and never thought I would have to worry about that in my early 40s. Does anyone else feel like their body is out to get them? I have been reading everyone’s past posts about this surgery to best prepare myself. If there is anyone else out there who is currently considering or planning J pouch removal, please feel free to contact me and maybe we can support each through it!! Here’s to happy stomas for us all!
There is life with a stoma!
A good one too.
I completely know the feelings that occur when you find that your J pouch has reached the end of the line. I had mine for 30 years and removal became necessary when I had recurrent high grade dysplasia and a malignant polyp in the anal canal. At that time, I was still of the mindset that I wanted an alternative to an end ileostomy, just as I did when I first decided to get a J pouch.
I updated my knowledge on the K pouch and learned about a modification of it called the BCIR. I read about the complications that some people experience with these procedures, including the 6-10% that the procedure would fail and I would need an ileostomy. Considering my lifestyle and feelings about the decision I was faced with, I accepted the risks and decided to have the BCIR. The surgery was difficult, particularly the removal of my J pouch, but everything turned out fine. I am now able to do all the physical activities I enjoy, eat almost any food and not have to worry about leakage, skin irritation or “accidents”. Most of the time, I am completely unaware of my procedure. Although my results with a BCIR have been excellent, I know that many people have had good results with their ileostomies and believe they made the choice that was best for them. Best of luck with your upcoming surgery.
Hi Lori, I have a call in for pouch removal surgery as well - hoping to get it scheduled in October. I totally understand the menopause issues! I've been experiencing it for over 10 yrs now and ready for it to end. I mean, like we need something like that over and beyond the jpouch issues right? Right now I'm reading "Prepare for Surgery, Heal Faster" by Peggy Huddleston. Someone on here (I wish I remember who) recommended it yrs ago. I'm scared to pieces to go through the recovery, but we're not getting any younger, so here goes. Feel free to contact me as well. I'll keep in touch and let you know how things go, and will be following your journey through this as well, thanks for posting!
Lori & N/A,
Sorry you are dealing with all of this. Menopause can be nasty but I think you will feel better without your problem j-pouches.
The recovery time for me was much better than it was from the colonectomy/j-pouch construction surgery. The healing from the Barbie butt was a bit annoying because it took months of sitting on waffle construction cushions or on one butt cheek. The midline incision healed much faster.
My surgery was at the Mayo Clinic and they supplied me with a stoma nurse contact listing for where I live. I needed her right afterwards and now see her annually for a checkup and annual ostomy supply prescription.
I also contacted every manufacturer for samples. They were great about furnishing samples of appliances, rings, fillers, wipes etc. I still get samples of new things & appliances as you never know if there is something better out there. You need to wait until after surgery to contact them as you might have a specific problem and they want to know what size your Ileo is.
Good luck! I hope we hear back from you after surgery.
I wish u well. This J pouch isn't all it's cracked up to be. I only have this j pouch 5 yrs and it's been 5 years of battling gas, 6-10 x output, burning, fatigue, in and out of dr's, test, new diets, new meds, vitamins. Basically baking and cooking everything from scratch, gluten free, lactose free, no spices. I have tried my best and I don't blame u for the removal. I am not as young and I know I could not go through any more surgery. My GI dr suggested when He fixes my hernia which is causing me problems that did come from the surgery. He says he could clean up rectal part that's causing my pain and try to stretch the pouch, this would be a 2 part surgery. I just don't have it in me so I am just going to keep going and take my good days and enjoy them and live life the best I can. I can't or won't take the risk that is involved in all this and pray that little piece connecting the pouch will heal. Bottom line that is my problem and causes all the chaos. I don't think for me the bag and stoma would help. I didn't take to it well when I had it temporary until reversal. The whole process nearly killed me. I think i'll well enough alone.
Thanks for all the replies! I feel confident about life after this whole thing is done....it’s just getting to the “all done” part. Do they literally staple your butt shut or do they use stitches? Either way-is there anything (like stitches or staples) that need to be removed b/c that sounds extra scary! N/A-let me know when you have surgery scheduled. I am scheduled for the second week of January. I am trying to survive with my cranky stoma b/c we are going on vacay in November for my daughter’s 16 b-day. Hang in there TF! I hope you can continue to get by without surgery! Personally, nothing makes be feel crazier than impending surgery and hospital stays. Yuck!
The surgeon used staples to join intestine to tertum. No need to remove. I am 5 months in the stage of recovery with loperamide once a day. Bo abut 3 To 5 x a day.
Lori 726 Thanks Lori and I will pray for you and ur upcoming surgeries. It is a individual choice that we all have to make. Take care
Hi Lori, my date is Oct. 29th. I met w/my surgeon yesterday due to fistula probs., and we had a preliminary discussion re. the surgery. I go back (Cleveland clinic) on October 9 for 1-2 days of pre-op testing. I'll try to start a thread detailing the experience when the time comes. I hope your stoma behaves while on vacation and you have a great time!
To answer your question about stapling or stitches - mine must have been stitches as I didn't have to get them removed. My local stoma/wound care nurse helped me in healing my barbie butt as it took longer than expected to heal. It was no big deal. I don't know if that contributed to me needing to sit on a waffle cushion longer or not. It took months before I could sit on a hard surface. Recuperation was a breeze compared to dealing with my j-pouch that just kept getting worse.
I am no spring chicken as am in my 60's. I too had a horrible time with the temporary ileostomy in-between my j-pouch surgeries. I was in the hospital for 16 days after my first surgery because of it and suffered so much my take down was 8 weeks after the first surgery.
I wish I would have had it removed at least 18 months before I did. It was just over 5 years old when I had the removal surgery. I too had a limited diet and was on a lot of medications, including pain, and needed to give myself enemas in order to empty my j-pouch. It got so bad that I relied on other people here. They explained that a permanent ileostomy was much better than temporary one and were right. Is it better than a well functioning j-pouch? No, but I never had a well functioning pouch. It's better than my horrible temp ileo was. It gave me back a life. I can leave the house whenever I need to.
It is a difficult surgery but recovery was much better than my first j-pouch surgery. I too had a hernia operation. It was a breeze compared to these other surgeries. I hope your doctors are able to give you some j-pouch relief too.
TE Marie, thanks for the encouragement. I see my GI dr in a few weeks and will discuss all this with her and see how it goes. So Happy for you. God Bless
Thanks! I have had many past experiences of sitting on cushiony things thanks to fistulas and setons. I even bought my own chair for work once...hahaha. If I can sit on a hard surface some time in the future, I will be estatic!
FYI, you may not need to get the Barbie Butt, though maybe you want it as some people do. My pouch was removed in 2012 (I think) but the anus was left intact. This is not common but certainly not unheard of. I have done very well since, They scope it every 2 years takes 5 minutes, no sedation. It may not be appropriate for you, but I thought you should be aware of the possibility. I have an end ileo.
There seem to be two common surgical issues with pouch removal, adhesions around the pouch and healing of the butt wound.
I still have my little canal also.
No need to scope it. Never had it done.
But it does weep. Not past the opening. Just mucous and easily cleaned up. No big deal. It's sewn from the inside. Just glad I didn't have to go through the pain if having that removed. Although I didn't know she was gonna leave it. Glad she did. So far. Lol. It's been no problem..
Speaking of adhesions....... My j-pouch was diverted first and that was a lapro surgery. I'd had a hysterectomy before my j-pouch and hernia surgeries and they were all open. During the lapro surgery my Mayo surgeon spent 3 hours working on my adhesion/scars. 6 months later my j-pouch was removed in an open surgery and she spent another 5 hours on them. My abdomen was a MESS inside.
I was afraid they would come back as had heard of that in the past. If they are back they aren't bothering me much. I still have abdominal pain but it is nothing compared to what it was before she worked on my adhesion/scars.
These surgeries provided an added benefit as surgeons don't like to perform surgeries on adhesion/scaring alone.
HI Lori, I am considering also - my pouch is diverted since 2010. But I'm pretty over the leakage, and also question whether my arthritis ( and need for meds - anti tnf etc) may resolve with the pouch gone. The concerns holding me back are fear of yet another major surgery (!) and surgical menopause. My surgeon thinks I should / or may need to do hysterectomy - due to adhesions / concerns are further complications. So Ive been sitting on this decision for ages. PLease keep us up to date with your progress.
My thoughts and prayers are with you
I had my 30 year old j pouch removed December 6, surgery was 6 hrs of digging through scar tissued, 25 staples and visceral sutures in my barbie butt, all healed easily but my stoma is awful and needs revision sooner than later. My surgeon will not do it so I am seeking another next week. I am getting stronger each day at 66! I am surprised I had no pain after surgery either. Now I just need to find a good appliance until a revision. Mine are leaking on top where my stoma sinks and I have tried everything. I have severe skin allergies to tapes and even non latex flanges, skin prep and barrier rings. I had a loop ileo 2 years ago after fistula repair and never wanted to be reconnected. My last two years were not good, my great j pouch was never the same. My first surgery 30 years ago took a good year to fully recover an I was 34. It is not a speedy recovery. Best to all.
I got my J-pouch in 2004. I had an amazing recovery after the initial surgery, but had to have my pull down rescheduled due to infections and abscesses. My recovery was good though and although I never really felt like I got rid of the ulcerative colitis, I pushed through. Fast forward to 2019.... I am so tired of the pouch. I am tired of the leakage, the gassy, uncomfortable feeling of always having to go to the bathroom and the embarrassment when having to use a public restroom, which is often. I'm tired of trying to figure out which foods are okay ( what might be fine today, may cause problems tomorrow). Is having the pouch removed and going back to the ileostomy better? I know it may vary for everyone, but what is the quality of life for those that have dumped the pouch and gone back to a bag? I'm on the edge of making the decision and am afraid of making the wrong one. Have the appliances changed since 2004? I know I had some leakage issues around the stoma area every so often way back then. I could deal with that if my quality of life was better.... Any advice would be welcome!
Wendy, I can personally relate to the problems that you are having with your J pouch. You may already have read the post that I made in this thread a year ago about my decision to have my J pouch removed. Since that time, I wrote an article entitled, “Researching My Options” that was published in the UOAA magazine “The Phoenix”. This article can also be viewed on the Quality Life Association’s web page (www.qla-ostomy.org) under the “News” tab. I am now on year 7 with my BCIR and no longer have the problems that you mentioned in your post. While there are no guarantees, the vast majority of those with BCIR’s and the closely related K pouch have had very good results. Please send me a PM with any questions that you have or would just like to talk.
I had my pouch diverted 2 yrs ago, and then removed about 1 yr. ago due to abscesses and fistulas, strictures, severe cuffitis, and other not-so-fun stuff. My dx. had changed to Crohn's.
Doing fine with the stoma, although to be sure, having a stoma was a difficult thing to wrap my head around and I still have periods where I wish things were different. Having said that, I finally learned how to get a good seal with my wafer - that took some time. The stoma "equipment" has indeed changed since I had my temp stoma in '93. There are protective rings to wear under the wafers, paste that contains no alcohol, velcro closures on the bags (wonderful), and more. The ostomy companies are so helpful and provide samples at your request.
My health has been good and life is indeed better. Emptying the bag is done in less than a minute, no pain, no straining! I eat (and drink) nearly everything, but do avoid things like raw vegees, nuts (my choice, just don't want to push it).
I'm sure you're discussing all your issues and options with your surgeon(s). And of course, if you decide on surgery (removal or BCIR), just try to be sure you have a surgeon who has lots of experience with the procedure.
I wish you the best.
The appliances have improved since I had my temp ileo in 2010. I really like the velcro closures. I'm glad I got rid of my j-pouch as it was running my life. The ileo and it's maintenance is light years ahead of living with my j-pouch. I probably don't eat differently other than my occasional lettuce on a sandwich but this is the same as with my j-pouch. I can't do raw veggies or fruit except for bananas and and some cooked veggies bother me. I get around all of that by getting my fruits and veggies in a smoothie daily. It does produce more output than other food but not too bad or I'd change.
You didn't say if you had chronic cuffitis, pouchitis etc. I had them both plus strictures that kept closing up. It sounds like you probably do have something medical going on. If you haven't checked that out I'd do it first. I was on rotating antibiotics and cannasa suppositories 365 days a year. I had to stop using 2 of the best ones because of side effects so nothing was working it was just held at a low roar. It is good that I don't need them anymore and no more scopes!
I take more more Imodium than with my j-pouch but that's nothing.
I've read all opinions about pros and cons of jpouch removal and know that every person has different expectations but I'm scared to death to have my j pouch removed and opt for permanent bag and barbie but. When I had the temporary bag back in 2008 it was an awful and traumatic experience because the bags didn't stick to my skin and I tried all kinds of wafers, paste etc I'm not saying that having a j pouch has been easy I still have the urgency, the diarrhea and bowel incontinence at nights and the pain besides my reflux and gastritis. Life is not easy but keep praying and keeping the faith [that things don't get worse. Sending healing prayers to everyone 🙏
Just one thing I have to say. I was scared to get mine removed too. No going back. Don't know what to expect. How ugly it all looked. Yes. I know what we think while we think about doing it. Cause I did it.
The one this is you can't compare your outcome with the temporary ileo almost all of us get when our pouch is first installed and healing. Temps are notoriously terrible!
Permanent ileo are completely different from Temps.
You would not think so. At least with me it's completely different. I have no leaks. Torn up skin. Nothing. It works the way it should. And it's "my" cure.
I know not everyone has the same outcome as I did. And it's a super hard scarey decision. I had to make it. Mentally and physically I could not do the pouch in any form anymore. To be frank it was slowly killing me. My permanent ileo has turned that around.
No matter what. We will never be the same.
Pouch (of any form). Or permanent ileo. We will never be the same. But we can be free of all the pain and misery.
(I would guess that's more than one thing)
The one thing is thinking your permanent is going to be like a permanent. I thought that too. I was wrong. It's way better.
Thanks for your input! I had a lung issue and months of prednisone which put surgery on hold. After coming off the prednisone in June, I have felt terrible. I went to see another gastroenterologist (not Shen-no offense to the Shen lovers) at Cleveland Clinic thinking omg the Crohns is really affecting me now. He took one look at me and said the pouch needs to come out; it is the closest thing you can get to a cure. My surgeon happened to be in the next hallway so I have surgery scheduled for August 29th for j pouch removal, Barbie butt, and end ileo. I am so glad someone finally said it-the pouch has to come out. It stopped all that second guessing. I am nervous as can be about upcoming surgery but hoping no other medical fiascos pop up before then so I can finally get this pouch out. I feel lousy so I know it is time.
My surgeon at CC (Tracy Hull) also told me the pouch had to come out. You won't regret it, I absolutely have not. Having it done at Cleveland should reassure you as well. Good luck, Lori, let us know how it all goes!
Prednisone does complicate things.
I wasn't taking any meds. My pouch just never worked. I was in that percentage.
I just had to make the decision myself. We all know how hard that is to do.
It's what my surgeon told me. She said when I was ready she could fix me. She was right. I was stubborn for two years. Worst two years of all.
I only had four surgeries total. The last one was the removal and that was by far the easiest and I healed quickly. Now I had no complications. Zip. Zero. I was lucky. Just had to get over the hurdle of accepting the end ileo. That took a solid month after 11 days in the hospital.
But I haven't looked back and have no regrets
Good luck to you.
Thank you everyone! It's good to hear that life after a J-pouch removal sounds promising.
Bill, I hadn't heard about the BCIR. Thank you! I have been reading everything I can on it. I go to Florida often, so the trip wouldn't be such a hardship if my insurance pays for the surgery and stay. I know I am also mentally and physically so drained and want...need... to do something.
This group was a savior for me back when I had my J-pouch surgery done and I am so glad that it is here for me again.
Hi Wendy, I second Richards sentiments, I’ve just had the surgery 4 mths ago and I was terrified for a few years before doing it, but it’s worked out fine, it was also my easiest surgery to recover from. I think once I decided to finally do it and make a commitment it was easier, so I hope you feel some relief having made a decision. Now hopefully you can do your best to be well for the surgery and have all your questions answered as well as possible before hand. And take time to recover and rest properly afterward if you can. I planned a great short holiday before my surgery so my mind was a little distracted with that, and I did my best to be as fit as possible which helped my recovery. Good luck and power to you !