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Well after 22 years I'm going to have to have my pouch removed...I was diagnosed with Crohns around 2008 and in the last few years it has been down hill...I am wondering for those of you who have had it removed what the recovery is like...is it more difficult then the original surgery...I will be having my bottom sewed up as well...I'm very nervous about this and really having a hard time coming to terms with a permanent ileostomy...I'm 47 and the thought of a lifetime of a bag is scary...but for now I'm focused on the surgery and being able to return to work ASAP...that helps greatly with my mental health...so any advice from people who went thru it is appreciated
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Hi Goldie, I haven't been through it yet, but I think it helps to focus on all of the things you'll be able to do after the surgery rather than the permanence of the bag. You may want to make a list of questions for your surgeon before your surgery so you feel more prepared. That does wonders for your mental health. Good luck!
I've already seen the surgeon but I'm making another appointment as I have more questions...I'm nervous about the surgery as I've been reading how removal of a jpouch is a big undertaking...I can't just get it disconnected due to the Crohns being in the pouch...so I was wondering about people's experience with the procedure...
I'm sorry to hear your experience is kind of like mine. I just had my jpouch and rectum removed this April. I'm 34 and my jpouch was just about 15 years old. I too have been diagnosed with Crohn's (2010). I too have a barbie butt and I too was so anxious about the surgery. I had scheduled the surgery once and canceled it. The surgery didn't get rescheduled for a year and half and it honestly took me that long to come to terms with the permanence, as you mentioned. I needed that long to get a better attitude about it all!

The good news is that I'm doing really well and this week is 3 months! My surgery required another opening to that huge mid line incision (no laparoscopy for me). My new stoma is in the same place as my old one. Surgery took 3.5 hours and I had a 7 day hospital stay. I was recovering for 8 weeks. I took all 8 weeks to really recover (put my little boy in daycare, my daughter was still off to school each week day). I didn't lift anything or go shopping. I didn't drive for 4 weeks as I on the pain killers that long. It's amazing how well my butt healed up and my incision is looking ok also. I would say I was good at 4 weeks, better at 5 weeks and basically good to go by week 6. Even so, I milked it and got meals delivered by my church family and had my friends run errands for me until that 8 week point.

I also had a home care nurse for 3 weeks at home because my incision required packing and also the new-ish ileostomy care.

I had major complications with my colectomy, so this seemed much smoother of a recovery. It's hard to know what for sure what will happen...I was so concerned this time about how much scarring was around the pouch (plus I had a mass next to the pouch that they had to clean up). God was merciful and I came through just fine!

I agree that looking ahead and thinking of what you'll be able to do is a great start. Just remember that healing takes time. I've read a bunch of posts that say it gets easier with the ileostomy at about 8 weeks and then really part of your routine after a few months. It's never "easy" but "easier". Because I was coming off living with a jpouch and already going to the bathroom 8-10 times a day, the ileostomy seems much easier than it did 15 years ago. Plus, a got to buy some new clothes and underwear to help me feel more confident with the ileostomy. And I now sleep through the night! Bonus!

Laura
Laura...thank you for your response...it definitely helped...I've been reading about how major this procedure is and it's making me very nervous...22 years is a long time to have the pouch so I can only imagine the difficulty the surgeon my have due to adhesions...I can only stay positive and be hopeful it turns out ok...
Hi,

I just learned the other day that I will have to go back to ostomy from jpouch. Had pouch for 10 years and having stricture and obstructions in the past while. Going for a scope sept 4 and will find out more. Not the outcome I wanted but it's the quality of life that we strive for. Please let me know how it went for you.

Lynn

I just had my Jpouch removed and my great fear a Barbie butt. The surgery was done September 1, and I was discharged from the hospital September 6th.   It is a big surgery but so far I am recovering very well at home.   The incision I have is the same one they did when the pouch was built and no change to the location of my stoma.   Not sure if my post helps at all but for me so far so good.

Hi Leann,

Happy to hear that your are doing so well following such a big surgery.  I have had my J Pouch for about 1.5 years and I have had Pouchitis a lot.  I am wondering what happened to your pouch?  How long did you have it, and what made you decide to remove it.  I am sure it was a very hard decision.  I am not sure if I will be able to keep my pouch - the Pouchitis has been bad for me.

I had my pouch created a few years ago and it was never right from the beginning, seemed to have a bad restriction which showed itself days after surgery when they injected the dye

Never right and never could get the surgeon who did the operation to help me with it really or understand  how significant the restriction was  always acted like no big deal

But If I had any kind of test that done like a scope or as simple as a suppository There was always so much bleeding. But the biggest thing was the constant mucus drainage that happened within days of the surgery. I had a mri and showed short sphincter muscle and thinning on the one side but I never had a problem prior to surgery Which was a  two step process had to wait a year to get the pouch.  I changed surgeons from the one who built it … partially due to when I asked about Guidance re will this drainage stop once fully connected, should it get connected, incontinence? or why does my rectum bleed from the simplest tests. I was told “you will probably have incontinence but I don’t know why you would try it would only be for a year and then it no better you can remove the pouch”. That just wasn’t good enough to roll the connect and see what happens dice for me.

I went to another surgeon (two others actually recommended in the field” got an opinion and it was both of their opinions that connecting the pouch it would be a disaster.  So I delayed for a long time (a couple of years) and just made the decision as I felt I had all the info I could get and it wasn’t going to improve

I am hoping for a much better quality of life. I am 62 now and I feel like I had some time but as you age I’m sure these major surgeries don’t get easier.   Like I said early days and fingers crossed as I heal but it continues to look like a positive move.  

Leanne,

Thanks for sharing your story.  If I am understanding it correctly, your JPouch was created, but never looked well enough to connect it?  So you sat with a loop ileostomy for a few years and then you decided to remove the unhooked JPouch and close up the anus.  You went through a lot - I hope you have a speedy recovery with an end ileostomy.
Best - Doug

I'll make mine short..

I've had my end ileo 6 years. Only had my pouch for 2 years. Too many problems. Not going into that. Doesn't matter anyhoo.

But the same things ran through my brain also. I was and am  close to 20 years older.  Still didn't make the decision easier. But I did it.

I couldn't even look at it. My wife changed it for me for the first month.  But after awhile. The month. I said I have to do this myself. And I did.

I stripped the appliance off got in the shower and put one on myself. That was one of the most freeing days of my life. Also the day I came to terms with what I had.  Since then I feel I've had it my whole life. Weird. I know.

No pain. No problems. Just change it out once a week.

I was doing it twice a week because I was still working. Outside. Just wanted a fresh appliance. 

I was off work 8 weeks. Could have gone back after six. I healed very fast. Faster than the other 3 surgeries. And it was the easiest for me. I still have my anal canal. She didn't take it out. I could have another pouch but I don't want one.

If you do go through this. Have the removal. You will find you will come to terms with it. And get a pattern going. That's what happened to me.

I never thought I'd end up where I am. But I'm OK with it.

Bonus. SLEEP!  I never ever got enough sleep with a pouch. I get plenty now.

It's only natural to have all these thoughts going through your head. We all do before we do it.

It'll be ok.

One thing I can recommend is talk to the surgeon and have the stoma made long. If possible. I did with mine. And it works well. I'm not saying inches . But long enough to work well. Too short and problems will most likely occur.

If you have any questions pm me.

There is life with an appliance. Bag whatever. They are so well made and streamlined nowadays nobody will know you have one. Out in public that is.

Good luck.

Richard

(sorry.... Not so short)

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