they found mine in February 2014. After months of back pain and sharp zaps down my legs I had an MRI. I had a pretty bad spinal infection from the leak that could have paralyzed me if not found soon enough. They unhooked and back to ileostomy. Dr Shen my GI tried a few scope proecures with bear claws and then a Fibrin glue was tried and an actual open surgery to sew off the tip of j pouch and everything failed. I am going for a total pouch redo/revision in October with the great Dr Remzi at Cleveland Clinic. It was a very difficult decision especially after all my issues, but if it can be done correctly it would be by Dr Remzi. If he could not do it I would stay with a permanent ostomy.

My son Jeff currently has a leak.  It was found last week or so.  He has had it since November.  along with it, he had an abscess and fistula.  In March he was put back on his ostomy.  Finally after many MRI's, pouchoscopies, fistulagrams and lots of other things they finally found where the leak is!  Right now he has a drain in his butt to drain the abscess and after that, I have no idea what next steps are.  We are being treated at weill cornell in NYC.  If they can't fix it, it's off to Dr. dietz at cleveland clinic.  A redo is not an option for Jeff. 

Pouchomarx, my doc is also Dr. Shen..he believes I have a leak, I am having barium X-ray sept 8 then I see Dr. Lavery on Sept 9 who is my original surgeon also at Cleveland Clinic.  The pouch revision you are having, will they put a new pouch in? How long have you had current pouch? I have had mine 20 years. I was told when I got it could last 10 years. These responses scare the you know what out of me.

Jeffsmom, your poor son I pray they can get this under control.

I feel so bad for Jeff. He needs to get a break and for something to start working as it should.  Any one little thing that could restore his hope.

Everyone, we did catch a break!  I thought I mentioned it!  Last Friday, the 15th I think, he had a procedure done in NY by Dr. Shukla and Dr. milsome!  They found the darn leak!  After all the testing that was done, they found another abscess, diversionary pouchitis and a sinus.  Not sure what the sinus means.  Anyway, on the 15 th they inserted a straw like something or other rectally to try and find the leak, and if so, drain the abscess.  They found the darn thing!  it turns out it is down at the bottom of the pouch, on a seam but toward the back.  Difficult to see on MRI and what ever else they did.  But we are so excited that they found the leak!  This Wed we go back to see Dr. Shulka and to be honest, I have no idea what the next steps are going to be.  My husband thinks they will leave the drain in.  But at some point, it will have to come out, be repaired and then do the takedown.  Jeffrey is over the moon.  Dr. Shulka feels the pouch is in good condition and that they can save it.  So we caught a break, finally.  Jeff is doing ok, just extremely tired.  That's from the PSC.  He put some weight back on, which I am not happy about, but I think he is trying to lose it.  He needs to stay between 190-200. I think he said he was about 217.  But he is in good spirits and so am I.  You guys are the best, and I'm so happy I found you all!  You are what is keeping me sane at this point.  It's all too much to handle. But, thankfully, we finally got some positive news!  

 

 

as far as the pouch revision, I am told Dr Remzi tries his very hardest to save any existing intestine, so he will try to fix but if he does not feel good about it, he will create new pouch from fresh intestine. I am scared to death, just from the ecoli infection and 10 weeks in hospital and almost dying from first surgery in 2008. I know this time it will be different but still scared.

 

I have never heard a surgeon saying up front that a jpouch should only be expected to last 10 years though???? anyone else hear that??

No not should, he said it could only last 10 years.
I don't blame you I would be scared also but you are going to the best.
I am quite nervous myself..I have not felt this bad in a very long time..from the leg pain to the stomach.
I wish you the best!

Fantastic News about Jeffrey   When he starts feeling better he will loose the weight. It's hard to diet and exercise when feeling terrible.

 

I'm getting diverted to a perm ileo Monday the 31st Pouchomarx. I am worried because in 2010 I had to stay in the hospital for 16 days because I kept getting dehydrated after my first surgery. Fluids were running into my bag so fast we could barely keep up with emptying it. We couldn't get my projectile vomiting under control either.  After I finally got released wonderful visiting nurses came to check on and help me out for a few weeks at home.  I had problems with my stoma  and dehydration up to take down - 8 weeks after the surgery.  I am optimistic about feeling better with a permanent stoma but am very apprehensive about having dehydration problems again.  It doesn't sound like that big of deal but it is to me. Those were the worst painful times of my life. We've all made it through our darkest times and can face whatever is ahead of us now. There isn't much else we can do.  

Good luck with your surgery I would hope based on your history the surgeon will take measures to deal quickly with any problems that crop up.  Just hope for the best and remind yourself of the benefits this procedure will bring to your life.  I am still without a date for this surgery going on five months hate this pred. But it allows me to eat maybe too much now 15 lbs over my usual weight???  Keep us posted as to your journey to feeling better.

I have fought a tip leak for almost 2 years and am now successfully reconnected. My surgeons are also in Cleveland. If i can help, please let me know. I have gone through everything with this thing.

 

Derek

 

A CT showed a leak near the coccyx must have always been there since 1986 they suggest it healed itself to stop the leak into the pelvic cavity and stool flows into it and out of it kind of like the tide the surgeon said.