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

Sorry Leann, typo’d Leanne

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)

Hi  Doug, yes you are right the  Jpouch was never connected and I did have one minor surgery changing the stoma from a loop to an end in hopes that it would help avoid the big surgery. Unfortunately for me it didn’t work out.
Thank you for the well wishes.  

I appreciate so much the sharing of your experiences.  I am now facing the  major decision of choosing surgery over the infusion of Stelara!.  What I fear are the side effects of this drug for life.  My new diagnosis is Crohn's and had suffered with UC for 7 years before having J-pouch in 1998.  Now 24 years later, age 75, I face inflammation found during a flex sigmoid scope.  I was on this website before I had surgery and it saved my life with the exceptional people experiencing the same concerns and worries.  So I just reunited myself to again join to offer my concerns for advice from your experiences.

  Thank you for sharing, and its good to hear the positives.  I look forward to learning if anyone has similar anatomy with taking a new drug Stelara instead of surgery.  Twenty-four years is a long time to be so grateful to sustain my life with  this j-pouch which comes with its challenges, strictures and blockages of hospital stays.   

Many thanks

Sheila

d

I would try the Stelara first.  I am on Stelara for 6 years and I personally have had no problems. The drug appears to have a good safety rating, although you never know about the long run.  But if it helps save your Pouch, it’s worth a try.

Thank you Doug for your quick and explicit positive  response!  I appreciate your comments and positive experience which I will certainly savor.  I scheduled an appointment with the colorectal surgeon early November to discuss options and hopes to later  decide which is the best route to follow. In the meantime I hope connect with this group of special specific members who have the j pouch and their experiences.

Many many thanks, Sheila

Question to those of you who have had the removal of the jpouch due to inflammation, are you taking any medication after your surgery for inflammation and is it the surgery enough?  I am now informed that the infusion has to be covered  be to performed at home with Stalera.   I feel nervous about that.  I also have an appointment next week with the surgeon about removal of the pouch.

Has anyone had in home infusions for inflammation?

Thank you so much,

Sheila

Hi Sheila,

As far as the Stelara, what is the situation.  I wonder if I can help the thought process.  Insurance covered me.  What is the issue?  They won’t cover you?

I have Capital Blue Senior PPO , the coverage is for in home infusion  only , which is new to me.  It really depends on the coverage.  It will be an our source group which I haven't heard from yet.  My inquiry was to ask if anyone had in home infusion care with administration of this drug?   Do you have a jpouch? Do you expect to continue with Stelara for life?  Thank you for your thoughtfulness.

Sheila

Hi Leann

You seem to be the one who is having a positive experience with removal of the Jpouch in September, correct?  I am considering the process of reverse , removal of my 24 jpouch, age 75, because I recently had a flare up , cramping and have a stricture high up above the pouch area.   I think this will be a long term problem.  I would like to know how your recovery is going and if you are on any medication?   

Thank you so much  for your response, I meet with my colorectal surgeon at Hershey Medical Hospital, Penna.  November 1.  I would be most appreciative of your current health.

Sheila

Hi. I’m sorry. I haven’t signed in for a while. So everything is going very well!  In fact I wish I hadn’t waited so long. The incision along my stomach is the only issue. I still have some swelling and it is tender and I have been told this could take longer or heal has of course it was a previous surgical site and it was good the surgeon went in the same way but it has been tender  so far the butt issue is not an issue  I am back to rocking out no problems sitting or really anything with that  I hope that helps  but if u need anything else or further details  please just let me know

I am taking Imodium only

😊 Oops Rocking was suppose to say working out

I am 62 years old soon to be 63 so I was very worried about healing etc.  about waiting too long to do this and decided my quality of life was very poor so I made the decision to go ahead with this.

the surgeon I went to was recommended by an ostomy nurse I met and I continue to be very glad I did this surgery but I know what a big decision this is to have to make.

To all interested that I don't need surgery at this time after discussion with colorectal surgeon. Grateful, however I will start the Stelara to learn if my body will accept it with trial and error.  Thank you Leann for your positive feedback and I wish you continued progress!  Hope all are taking one day at a time with good results.  I also had an on line appointment with my local nutritionalist who recommends FODMAP diet if there are issues.  Keeping a food journal is a must and trying to not over schedule myself, stress is such a big factor.

Wishing everyone safe and healthy holidays, thank you for all your valuable responses. 

Sheila

@goldie posted:

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

I had my J pouch in 2001 at the Mayo Clinic when I was 19 due to severe ulcerative colitis. I’ve basically lived a normal life for the past 20 years with very few pouchitis flareups and some dehydration issues. In August of 202, I started to get extremely sick and noticed what appeared to be a very large lump in my groin/buttocks area. I put it off a lot longer than I should’ve only to find out that I was filled with infection. The doctors could not believe that I had not gotten sepsis. I’ve been going to the mayo clinic and I have been diagnosed with severe Crohn’s disease which has Made its way into my perianal tracks, causing several large fistulas. I currently have six setons in place and have had them in for the past year. i’ve had 12 surgeries with the continuous cleaning and replacing the setons about every three months. needless to say it’s been the worst year ever. I have been on Inflectra infusions for the past six months and it does not seem to be working. After my last surgery about a week ago my doctors decided to do the fistulotomy and also decided to schedule my J-pouch removal surgery. It sounds like this is a very extensive surgery however I can never go through having all of these fistulas again, and 24/7 the pain that it has caused. I will be going back to the main clinic for my J pouch removal the end of December or 1 January. I am extremely nervous but I know that I am making the right decision. Here’s to a healthier 2023!

Hi Bootain,

You have been through a terrible year.  You will feel better!  I did a lot of research on pouch removal for months, because I had some major problems.  I ultimately kept my pouch and it’s only two years old.  However, I learned a lot about the excision surgery from reading several large studies. I did the research because I was suffering badly.  I learned that patients do great with the surgery.  Longterm outcomes are good with a ileostomy after pouch removal.  The surgery seems rough, but probably no rougher than what you have gone through.   I am sure your team did what they could to save the pouch, but a good ileostomy can be a good life in my opinion.  I pray you get better.  Hang in there.  Doug

Thank you

Hi Bootain,  I went through J pouch surgery 9 years ago and opted to get a continent ileostomy (BCIR or K Pouch) rather than have a bag.  It was the best choice for me, but is not the best option for some people.  The hardest part of my surgery was the removal of many adhesions that had developed over the 30 years that I had the J pouch.  I have had contact with Dr. Shawki at Mayo Clinic and met personally with him at the Quality Life Association's conference in September.  He has performed a large number of J pouch and K pouch procedures and has a full program in operation at Mayo.  I would definitely consider going to him if I developed any complications with my BCIR that required surgery.  He could also advise you if a K pouch would be a good option for you.  Please private message me if you have any questions.

Thank you so much Bill!

Hello Goldie,

People deal with medical issues on their own terms.  I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy.  In 2007 after 15 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, my anus closed up, and now have a permanent ileostomy. My ileostomy is on the left side of my abdomen just BELOW my waistband.  The ET nurse and I found the perfect spot together.

If a person is working with an excellent hospital and surgeon, they will have an easier time with this surgery.  I had my surgery done by Dr. Juan Nogueras at the Cleveland Clinic in Weston, FL.  My surgery took over five hours, but everything went well.  The only thing the surgeon faced was that after many fistula fixes that failed, my j-pouch had adhered to the vagina and he had to stop abdominal work and enter through the vagina to finish removing that last bit of j-pouch tissue.  Post surgery, I recovered quickly with no complications.  Upon discharge from the hospital, I had the best night's sleep I had had in years in the hotel before my husband and I headed home the next day.  My wounds healed up nicely within a 12 week period with no complications.  The wound below was sore but manageable and became even more comfortable after the stitches dissolved.  The abdominal area was sore but that wound healed up in no time too, especially after the staples were removed a week later (another long trip to Weston, FL).

I was so sick before I got my permanent ileostomy.  I worked 20 hours a week as an executive assistant for a CEO for many years--half of which time I had stool coming out of my vagina and anus non-stop.  My skin was raw and everything I ate caused me great pain when eliminating.  I suffered for a long time and continued my normal routine because I was afraid of the permanent ileostomy.  Why did I wait so long...

Now I have my life back again.  I eat anything, sleep all night, have more energy, gained weight, and there are days I just plain forget I have an ileostomy.  I was diagnosed with ulcerative colitis in 1972 at the age of 38, have had over 13 fistula repair surgeries and procedures, and finally received my permanent ileostomy at age 54.  I'm 70 now and life couldn't be better.  My husband and I are finally able to travel and have had lots of fun in our retirement.  He was my rock while I was ill.  Our lives are no longer on hold.  My ileostomy is 15 years old.

Yes, be afraid of the surgery.  It's okay!  Only don't let it stop you from moving forward with your life with a permanent ileostomy.  Your life will be SO MUCH BETTER.

I write this for all the people out there who are having lots of j-pouch problems.  I know there are thousands of happy j-pouch people.  I'm only offering these words to those out there who are suffering.  I just want them to know that a permanent ileostomy can be a life saver and a new beginning.

Caty