Skip to main content

I have my 3rd (long story!) takedown on Tuesday with Dr. Remzi at Cleveland Clinic.  Dr. Remzi did a great job at my pouch redo surgery a few months ago.  I went perfectly and I was very surprised how quickly I recovered with my third ileostomy.  For those of us that have experienced pouch leaking of any kind, I could just "tell" that the new setup was contained and there were no abscesses or pain or issues of any kind.  If I recall my previous 5 surgeries correctly, I can honestly say this redo was, by far, the easiest one I ever recovered from.  But your mileage may vary!

 

It got used to the new stoma, but it wasn't long before I had that under control and got on with life.  There were a few leaks down below, but I tried to do keigel (sp?) whenever I got the chance.  I did have issues with the bag filling with gas, and I think that I could have issues with gas with my new pouch so I have to figure it out.  I am not sure if this is due to a gall bladder issue that I have, and that is coming out in a 2-for-1 surgery with the takedown.  It was also interesting that the stool was obviously passing from the top stoma loop across to the bottom stoma loop with the gas pressure and a bit of stool!  So I am sort of testing out my pouch now, I guess!

 

I have to hook up my Coco Bidet again for the new pouch.  Always seems weird giving up a stoma when you have it for a while, but I've seen a few of them come and go.

 

I"ll try to update!

 

 

 

 

 

Replies sorted oldest to newest

I had a consult with Remzi today. I am one of most difficult cases he has had, but I went in either wanting mine fixed or just a permanent ostomy. I had so many issues and almost dying from original surgery in 2008. Shen and my surgeon have been trying to fix my sinus and my tip of jpouch leak with not much success. I waited 3 hours to talk to him and i think he chnaged my mind. He is confident that he will redo my pouch with a 90% success rate. He stated I'm too young for a bag and I have dealt with way to much at this point to just concede to a bag the rest of my life. Remzi is very confident and to the point, not cocky or arrogant. I am seriously thinking about going for the redo. He stated 5 days in hospital and then a 4-6 week recovery. Said I can be back to work on light duty desk work in possibly 4 weeks. Does that seem to optimistic?? He skimmed over the sexual dysfunction risk though that comes with this surgery. Did he talk in depth with you about this??? I just dont feel like dealing  with this anymore. If he can give a me a good working and sound pouch and only take 4-6 weeks out of my life, I might say yes to this. KNKLHEAD... what was your wait time from when you said yes to the redo and time of your surgery?? If i decide in the next several days I'm hoping to maybe have it done mid October?? that would be 2 1/2 months away..

Pouchomarx

Poucho:   Sorry I didn't get to see you today at CC!  Yes, we've both been through quite a bit, but Dr. Remzi is fantastic.  When we talked I didn't give him a yes or no immediately, needed to heal physically and emotionally, then decided to go for it. It seems like we waited about six months, if I'm not mistaken from our meeting to the pouch redo.  

 

Since you've had problems, I"m pretty sure you get a brand new pouch.  I am doing takedown tomorrow, and I believe it was three months from redo.  For me, light desk work was EASY within four weeks.  I was stir crazy at the start of the third week, and recovered very easily from the redo surgery.  (At three months out, I'm up to 190, feel perfect and ready to go!)  As far as sexual dysfunction, yes, he discussed this, but I had no issues.  With any surgery down there there is danger (even your past surgery) and I think any surgeon wants to bring that up as a possibility, while I think chances are low.

 

After redo from Dr. Remzi I could tell immediately that things were different from my prior two pouch operations -- there just seemed like no leaking/pain issues on the inside.

 

While I think there are other awesome surgeons in the US, I think Dr. Remzi is one of the, if not the best in the world.  I don't think anyone can dispute .. you are in good hands.

 

 

 

 

 

 

aka KNKLHEAD

 

Sending Best Wishes to  knklhead  for an Excellent Outcome !!!

 

To all of  the surgeons, GI Docs, and Nurses  at Cleveland Clinic who are dedicated to helping people get well and be able to live their lives  with these newer type  pouch surgeries, I want  say  Thank You and God Bless You All  !!!   Never Give Up !!!   

Randers.USA

Wishing you the best, K.

 

Poucho, wouldn't you still need takedown and then the whole "new pouch adaptation" period thereafter? I salute you for having the courage to go through this and still have the strength for more... but if it were me I would be thinking this too good to be true and just want my life back, with or without a bag. Then again, I know not everyone was as happy to be an ostomate as I was/would be.

SolomonSeal

yes i would need take down 3-4 months after the redo. My pouch has been disconnected for a year and a half due to leak. And now dealing with diversion pouchitis from it not being connected. I would probably need it removed at some point which is a huge surgery, so why not try a new pouch by the best surgeon if I'm going to have a huge surgery...

Pouchomarx

That was my mindset for the past several months. But after my consult with Remzi, he changed my mind. I know there is a 15% failure rate on pouch redos, but I hate my ostomy with a passion. Although I have not had any leaking or skin issues with it, It really brings down my self esteem and body image. I would only be comfortable with a permanent ostomy if i knew it was my only option. But if i can have another chance at a jpouch i will take it. My first one had issues from day 1 due to a massive ecoli infection that caused leaks. abcesses, and a fistula. Hoping for a totally different outcome this time around from the best colorectal surgeon in the world.

Pouchomarx

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×