Failed J-pouch, needs removal

So sorry to hear this. It sounds like you’ve gone through the ringer with everything you’ve been through. I’ve never heard of that surgery being called a Barbie butt surgery before- interesting. At any rate, I do wish you luck. When is it scheduled or did you just find out it’s going to have to occur in general?

I didn't have my pouch as long but I had it removed without having a barbie (Ken) butt.

I don't know if they can do this in your case.  Doesn't hurt to ask if they can leave that all in place

Being that my surgeon removed and left me with an anal canal sewed from the inside I didn't have to deal with having that part removed.

But in doing that I healed rather quickly and was back to work in eight weeks  I could have went back at six weeks but I didn't want to go back to work.

I wish you well.

Richard.

I am hoping that you have a wonderful surgeon good support  and very good recovery.

Thanks for the kind words of support!  My surgeon, Dr. Najjia Mahmoud, is head of colorectal surgery at The Hospital of the University of Pennsylvania and I am going to trust her with her recommendation and skill as a surgeon.

Jamie

I had to have my J pouch removed due to high cancer risk and did not want a conventional ileostomy with its associated issues.  I already knew about the K pouch and BCIR, similar procedures that do not require having an external bag. I opted to get a BCIR and have had very good results with it during the past 8 years.

I wrote an article entitled, “Researching My Options” that will be very helpful in meeting with your surgeon.  The link to it can be found on the Quality Life Association’s web page (www.qla-ostomy.org) under the Ostomy Options & Education tab.  This web site has information about continent ileostomies as well as a list of doctors familiar with them.  Please send me a PM if you have any questions.

Thanks so much.  I’ve had an ileostomy for 3 years now which has been no problem (easy to manage) but I understand the reluctance about it. I’m more worried about the surgery to remove everything on the bottom and recovery time.  I will read your article…thanks again.

Sorry to hear that, you are strong and resilient, the main thing I can say is to have faith that everything will be okay, you go this hon, my prayers are with you

Thanks for your kind words and support..much appreciated.

Am writing this to respond to Jamie but also to share with anyone else who may have to part with their j-pouch. Jamie, the Barbie Butt info is in the 5th paragraph.

I had a J-pouch that served me well for 29 yrs. No symptoms, 5 movements/day. No meds. Then had a few scopes by different docs over a couple of years to track low and high grade dysplasia which was appearing on biopsies. There was also some backwash ileitis at the pouch inlet. The docs were getting increasingly uneasy with leaving my j-pouch in. I consulted with surgeons, GI docs and endoscopists, almost all of whom advised removal of the pouch. One surgeon advised continued monitoring with more scopes.

I had enough scopes and was worrying with each wondering if this would be the time cancer was found. Not willing to go there. Time to get up some nerve and bite the bullet.

I had the pouch removed in mid-April at UCSF by Dr. Mhadulika Varma. Every nurse was amazing. The brand new hospital had wall-sized windows overlooking San Francisco Bay. Dr. Varma was superb. Can't say enough good things about her and this terrific hospital (and excellent food choices!!).

Here's the part for you, Jamie. I was expected to be in the hospital for 4-5 days after removal of j-pouch, anus, rectum (Barbie butt). However, I got the dreaded ileus, which lasted 9 days, so was hospitalized for a total of two weeks.

Was given no morphine or opioids of any kind, yet had no pain aside from a dull ache when I sat on my behind. They used Tylenol, Gabapentin and possibly I.V. NSAIDS (the NSAIDS only for a couple of days after surgery). I was walking the halls for 1/2 hr. at a time. No pain. Only slight oozing of a few drops of blood from the butt area which was absorbed with a tiny gauze patch. Had a tiny pouch collecting some internal fluids. The NG tube was more bothersome than any part of the surgery. Sent home with plain Tylenol & Gabapentin for two weeks. Didn't need either one.

Upon arriving home, I felt like I never had surgery. Had to sit on a waffle cushion for a couple of weeks, but there was only a dull ache from the butt wound. My surgeon used dissolving sutures so those didn't need to be removed after 10 days. This was a big plus!! In addition, my surgery was done laparoscopically and that wound was glued shut. No stitches. I was walking 9+ blocks the first few days and went grocery shopping within 4 days.

I was absolutely amazed at my very quick & easy recovery. I was scared out of my wits at the prospect of having this operation, but knew it was necessary. Looking back, I wish I had it done sooner.

Here is an idea that has occurred to me re. how I flew through this surgery. My vitamin D level is in the 50-60 range. Am thinking that this high level actually aided my recovery significantly. If I were you, I would have my D level checked and then start supplementing to give your level up there. I take 4,000 IU daily plus whatever is in my Citracal tablets. Am going to do some research on Vitamin D to see if it did influence my passage through this major surgery.

As for the stoma set-up, I don't even know I'm wearing a pouch until it's time to empty it. It is no bother and it's not visible to others. And still no meds!!

Jamie, if you have any questions, please feel free to ask--or anyone else for that matter. This was my experience, but don't know if it's typical. You will feel terrific when you have this taken care of. No more pain or discomfort.

Scott, maybe you or Jan might be able to comment on the power of Vitamin D.

Rose

Rose, thank you so so much for the detailed description of what you went through. It’s just what I was looking for.   Besides the ileus, it sounds like your recovery went well. I  really look forward to not having all the pouchitis symptoms and no more risk of cancer. I can’t wait to feel good again!

Since I already have the ileostomy, the big thing I worry about is the butt surgery. I’m not supposed to sit at all for two weeks post-op but my husband bought me a standing desk so I can hopefully continue to work from home.

I will definitely take your recommendation to take more Vitamin D. My levels run low so it’s a great ideas.

Thanks again for your post and thanks also to everyone whose posts have been so kind. This is such a great community, we j-pouchers!

Jamie

Jamie, I searched "vitamin D for recovery after surgery" and a bunch of articles come up. Apparently D3, which is what I take, does prevent/limit infection and promotes quicker healing. (D3 is utilized by the body better than D2.) I was healthy going into surgery but I'm a believer that D3 has amazing benefits.

If your surgery is soon, maybe ask doc about taking 5000 IU daily or 50,000 units  several times a week to boost your level, depending on your current D level. Below 30 is too low. The official guidelines say 800 iu daily, but these are way, way too low, as they are discovering. Run it by your doc. Mine have all approved without a word of negativity.

A couple more details...When my J-pouch was removed, the surgeon took the inner set of spincter muscles with it but left the outer spincters. Have had no difficulties. I was asked to use the waffle cushion to sit on for about 20 min. and then get up to walk for awhile, even just around the house and to keep alternating sitting and walking for the first couple of weeks. I didn't have to do this, however, because it was healing so well. They didn't want me sitting on anything that would cause the butt cheeks to spread apart, thereby pulling on the stitches.

If I think of other stuff, I'll let you know. Please let us know when you are having the surgery so we can keep you in our thoughts.

Rose

@JamieS posted:

Thanks for your kind words and support..much appreciated.

Your welcome Keep me up to date

Blessings be with you hon