Finally ditching the j pouch

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!

Original Post

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.

Bill

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!

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 

 

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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!

Lori,

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. 

 

TF,

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.

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..

Richard  

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. 

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