J-pouch back to permanent ileostomy

Hi, Gail.  I had several surgeries to correct issues, a total of 2 different  -- yes different ileostomies -- and was prepared to have permanent ileostomy ... as long as I felt good. I consulted with Dr. Remzi, formerly Cleveland  Clinic, now in New York City, Feza Remzi, MD | NYU Langone Health. He said, "you have a mechanical problem and I can fix it."  He did.  Fast forward -- I have felt like a normal person for about 6 or 7 years after Dr. Remzi did such a wonderful job.  You may want to look him up?  Mostly, even with a permanent ileostomy, you deserve to feel better!

@ AKA KNKLHEAD

Hello - Did Dr Remzi give you a new J-Pouch to avoid the permanent Ileosomy?

Thanks

Hi there KNKLHEAD.  Sense of humor, obviously.

Thank you for your response. I have a problem in that I live in Ontario and have pretty much zero money to go to NY.  I am curious, however what functional/mechanical problem you specifically had with your J-pouch?

Gail

Hi Gail,

I had my first Jpouch in 2006 , 10 years later a second Jpouch, then a Kpouch j in 2017. The first 8 years were the best. The last 4 years the worst!

I had the Jpouchs by Dr Remiz. I decided to go to him in New York to have the Kpouch removed this past April and go to an end ileostomy. The best my life has been in several long years!!

Everything comes with some adjustments, but I am so grateful to Dr Remzi for listening to me and agreeing to do this. I can’t say enough about him.
Good luck to you Gail and I wish the best to you!

Jan

UPDATE:  My GI doctor put me on Mesalamine tablet (4 pills a day) and they seem to have eliminated the horrid pain in my lower left abdominal and groin.  I couldn't be happier.  The pills are expensive at 4187 using Good Rx pricing, but they are worth every penny!

Thank You all for your support

Interesting.  Thank you. I was on Mesalamine tablets daily for a number of years as a first line treatment prior to J-pouch. At a certain point, they did nothing for my UC left colon. I will bring the topic up withy surgeon when I speak to him next week.  Maybe it would work in the inflamed pouch.

There’s more treatment options than just antibiotics.  I’m on Entyvio and it’s doing a great job of controlling pouchitis that wasn’t managed well by antibiotic courses over multiple years.  

Maybe talk to another GI?  

Thanks so much for the info. I am actually talking to my surgeon in the next hour after my GI spoke to him. I have chronic bronchitis and. Not anxious for a biologic (Entyvio or other) unless my bronchitis of unknown origin is rectified.  I love the idea of a bidet. Unfortunately, out 140 year old tiny home has a really small bathroom with toilet not having room to install. However, we Re movie g to a brand new home in 5 mo the and that is the first thing I'm getting. I do use a spray bottle.  Not as good, but better than nothing.

I will see what my two doctors come up with today.

Thanks again.

@aka KNKLHEAD posted:

Hi, Gail.  I had several surgeries to correct issues, a total of 2 different  -- yes different ileostomies -- and was prepared to have permanent ileostomy ... as long as I felt good. I consulted with Dr. Remzi, formerly Cleveland  Clinic, now in New York City, Feza Remzi, MD | NYU Langone Health. He said, "you have a mechanical problem and I can fix it."  He did.  Fast forward -- I have felt like a normal person for about 6 or 7 years after Dr. Remzi did such a wonderful job.  You may want to look him up?  Mostly, even with a permanent ileostomy, you deserve to feel better!

This is exactly what Dr Remzi said to my husband. I had 4 different ileostomies. Takedown this Wednesday by Dr Remzi

@JanW2 posted:

Hi Gail,

I had my first Jpouch in 2006 , 10 years later a second Jpouch, then a Kpouch j in 2017. The first 8 years were the best. The last 4 years the worst!

I had the Jpouchs by Dr Remiz. I decided to go to him in New York to have the Kpouch removed this past April and go to an end ileostomy. The best my life has been in several long years!!

Everything comes with some adjustments, but I am so grateful to Dr Remzi for listening to me and agreeing to do this. I can’t say enough about him.
Good luck to you Gail and I wish the best to you!

Jan

Wait so you're saying your jpouches made by Dr Remzi failed??

@GEB56 posted:

Hi there KNKLHEAD.  Sense of humor, obviously.

Thank you for your response. I have a problem in that I live in Ontario and have pretty much zero money to go to NY.  I am curious, however what functional/mechanical problem you specifically had with your J-pouch?

Gail

I had internal leaks from two different "sessions."  I meant to say in my original post I had 3 different ileostomies (the last one, success-in-progress) with Dr. Remzi.

Unfortunately, I live in Ontario and have no coverage to go to Dr. Remzi who everyone raves about.  I sure would of I could. I will have to stick with my guy in Toronto. If I have to go on to a permanent end ileostomy, I can live with that. I am 65; long time married. I feel bad for young dating people with an ileostomy.  It is hard to deal with psychologically.

Thanks for your comments.

@Andreita posted:

Wait so you're saying your jpouches made by Dr Remzi failed??

No, sorry .. I had prior surgeries that failed, but Dr. Remzi did a redo that was successful.  Best wishes!

@aka KNKLHEAD posted:

No, sorry .. I had prior surgeries that failed, but Dr. Remzi did a redo that was successful.  Best wishes!

Thank you. He did my redo in September and will do my takedown a day after tomorrow

Andreita, We’ll be thinking of you on Wednesday and wishing you the easiest of takedowns. You are truly in the best hands!

Look forward to the future and enjoy the holidays.

Jan

@GEB56 posted:

...  I love the idea of a bidet. Unfortunately, out 140 year old tiny home has a really small bathroom with toilet not having room to install. ...

You don't need a separate bidet. There are attachments for the normal toilet or toilet seats integrating such a shower function.

Thanks Steve. I should have qualified that. There is no physical room for the portable install yourself. I have done the measurements. Soon I will have the real deal!

I am sorry this happened. You gave it your all which is amazing!!! Sometimes things end because something better is coming.

I would send a message to Mysticobra, he had the same thing happen and I believe he is happy. Perhaps he can give you some advice.

Ahhh... The dreaded end ileo. 

I've had mine now for six years.

As I've said before I dreaded it too.  I didn't want it.

But even after a short period I knew it was the right thing.

And now after close to six years it's just a part of me now. And it seems in my mind I've had it all my life. 

My health and life have improved 100%.

Nobody wants an end ileo. Of course. But mine works and works well.  I'm fortunate. I consider myself fortunate.

I know alot of people have problems with it. But the very first thing you have to do once you get it is accept and come to terms with it.  That itself took me one month to do. It may take longer for others.

Coming to terms and accepting it doesn't seem like much but it's the beginning of it.  Once you do that you will learn how to live with it and be happy and healthy.

There is only one thing I can say pre surgery. Ask your surgeon to give you a good long stoma. If it's possible. I did. Weird thing to think of. But it's important to have one that sticks out well.

From there you'll go through trial and error with appliances.  But you will find one that works as I did.

I could keep the appliance (wafer and bag) last more than a week.  I don't. I change once a week.  Unless I have a leak. And they do happen.  For me once in a while. I'm not perfect and I may miss a step when putting one on.  But I feel I've gotten good at it.  I changed last Sunday and it didn't last an hour. I missed one step. But it only takes me ten minutes to swap it out.  It becomes second nature.

With what appliances they have now it's so easy to do. And it's easy to hide under clothes  but it all just takes time to get used to.  I'm happy.  I wish. And it doesn't matter now. It had gone better. But this is it.  My cure so to speak. I haven't seen a Dr in almost 4 years. About my issues with my stoma.  Or any gastro issues.

I suffered greatly before and during the j pouch.

I don't miss my colon or pouch.  I think I will live the rest of my life contently with my stoma.

When I say that. If you knew me personally. I'd be the last person to say that.  I never thought this would be it.

It is. I can eat drink. And do what I want. I don't hurt. Or have a burning butt. Omgoodness that was bad. I don't miss 40 trips to the bathroom at work. I don't miss work. Lol. I'm retired now.

Thing is.  When we get an end ileo. We can make it a good or bad thing. Positive attitude towards it is the key.

If you've had a temporary ileo. Loop. Just put that out of your mind.

An end ileo works the same but is different. I had a temp. It was miserable. An end ileo does not leak and if it does it doesn't burn the heck out of your skin. And all that. Been awhile since I had a temp..

Another thing is.  My surgeon left everything intact to have another j pouch made up if I wanted to do it in the future. I won't. But you can also ask about that.

OK. I'm in a rambling mood this morning. Sorry.

If you do have any questions you can pm me. I'm not shy about it. I will answer the best I can.

There is life with an end ileo. And it's a good life.

Richard /mysticobra. You can call me Richard.....

Thanks Richard. I have had an end ostomy when I had a partial colon resection. It was small and I liked it not so protruding. When I say I liked it, it was naturally hard to get used to pooping out of your abdomen, finding decent appliance and I cried a lot. I only realized how great it was when the J-pouch was made and had the dreadful loop ileostomy. It was huge, high and leaked like a sieve at the bottom opening so I had yeast rash that got under the wafer no matter what was tried.  An end ileostomy will be fine. My issues are many with Jpouch.  I am not quite at surgery yet. My surgeon is arranging a functional MRI defecography to evaluate the problem better, especially with regards the leakage day and night. He also set me up with pelvic floor physio to see if a lot of the problems lie there. That is set for March.  MRI is on hold because of Covid.  If I do go on to need a permanent ileostomy I will be okay. I am familiar and getting rid of burning bum and fissures and frequency and leakage would be refreshing. I am 65 and assume that my tissues are not as strong as when I was a younger woman.  I am a rambler too! Apologies for that.  Thanks again.

I'm that age also.

I considered my age as a factor.

When my mind was able to function with all the problems I was having.  At 60 I had it done. I figured how long I would have to live with it. Morbid? Nah. Just a factor.

Now that I have it I'm comfortable with it.  And seeing how you have had both too you don't need much information.

You have time. March. 

There is life. A good life after a pouch. I'm proof of that.

No apologies needed. One rambler to another. Lol.

Richard.

You said it well Richard. Thanks for the support

Gail

Welcome.