My son is having a similAir problem. He developed an abscess sometime between September and December when it was found.  Then they found a fistulia.  the surgeon put him on TPN since mid January to hopefully get his pouch to heal up but it didn't work.  Next week, he is having another surgery and giving him back the ileostomy for 6 months.  my surgeon has been consulting with the doctors at CC.  It was agreed to put him back on complete bowel rest for six months.  I'm not sure what will happen after than but I know there is a micro tear in the pouch and if that doesn't heal there is some discussion of redoing the pouch.  My understanding is that is a horrible surgery and one to be avoided if at all possible.  My son is a young man, only 24.  He should be living his life, not having surgery and an illostomy.  But unfortubarely, it is what it is.  Hopefully, for both of you it's only temporary.  Good luck.

Good morning,

I suffered a perforation at the tip of my pouch in September, 2013. I have undergone 3 repair attempt surgeries, as well as 2 attempts by Dr. Bo Shen to "bear clamp" the leak. All attempts failed until my final one last October. Dr. David Dietz, at CC, opened me up with a 90% rule. Nothing less than a 90% chance of success in all possibilities, or give me a permanent ileostomy. I woke just over an hour later with my wife telling me he saved the pouch.

6 months later, my wound has closed, all abscesses are resolved, and the fistula that had branched off three times, is gone. I am currently awaiting take down surgery in about 4-6 weeks. I am elated, but cautiously optimistic. If i can help answer any questions, please let me know. Things looked pretty bad for me, but Dr. Dietz is wonderful. If you are already at CC, i recommend seeking him out.

Dtmack, my son is going through a similar situation.  You can find the entire store in other places on the forum.  He has a collapsed asbscess and a fistulia connect to him j-pouch.  They can't see the connection.  We know the fistulia is still there from the fistula gram they did last week.  They see the dye running into the pouch but the tear is microscopic.  My surgeon had a consult with Dr. Remzi earlier this week.  my son had his entire lg intestine removed in June 2014, take down SEPT 2014, had a drain in his back since Christmas, and been on TPN since mid-January. on Thursday they are going to disconnect from the j-pouch and put him back on the ostomy For 6 months.   Then my surgeon wants to try and repair the pouch if it has not healed on its own.  My question to you is, what types of repairs did they try to do?  Was the leak large enough to actually see?  And what did Dr. Dieta do?  I'm happy to hear all was successful for you.  I'm hoping for success in our case as well with the bowel rest.  Dr. Remzi was talking about redoing the entire pouch with I understand is a horrible surgery.  Thank you for your help

HI there,

I have had 3 full open surgeries. Each time they clipped off the tip of my j-pouch and attempted to re-sew or re-staple the pouch. Each attempt, up until the last one failed. According to Dr. Dietz, on the last attempt my pouch had stretched a bit. Making the tip much more accessible and easier to do the original style of fix, which was both a staple and hand sewing of the tip. 

Before my last attempt, Dr. Bo Shen attempted to do internal clamps, or "bear clamps" to try to close the leak. He also injected glucose into the fistula, all the way down to the pouch, to try to seal the track. These attempts, while appreciated, did not help. In fact, after each attempt, my fistula branched. From a single fistula, to a complex one. This sucked.

As far as was my leak/hole visible? Yes. It was a large hole that very clearly emanated from the tip of the J. I have had a loop ostomy since Sept. 23, 2013. I am hoping to have that reversed in about 4-6 weeks.

I feel terrible for what you and your family are dealing with. This process is horrible. The pain i was in was only controlled via Fentynal patches at 50mcg/hr. I have only recently been able to wean off all pain meds. The withdrawal symptoms have been brutal.

I truly hope you guys get some relief soon. The ostomy, while not ideal, has been a life saver.

Dtmack, thank you.  Sounds like you have been through quite an ordeal yourself.  What you had done was some of what our surgeon was talking about.  But, he did say, he wasn't sure if it would work.  He wanted to try glue from the inside.  We think the hole is bown at the bottom of the pouch.  We are just taking it one day at a time.  Jeff is not to happy about this reversal at all.  He is also autistic, Aspergers, with lots of sensory issues so you can only imagine how this all affects him.  But I'm trying to encourage him to look at it in a different light.  To make a better effort to live his life and not worry so much.  I'm trying to get him to let us take him to Disney in May.  We used to go all the time for Mothers Day, and he so enjoyed it.  Might as well go to the happiest place on earth right!

thank you for your insight.

The time is getting closer for me to have multiple tests then surgery, about a week from now.  I will be going alone.  My family is small and they have to work and are helping take of my three children.  CC is about 800 miles from home.  This makes me anxious.  Jeffsmom I hope that your son is feeling better and that you get to go on that trip to Disney.  He is blessed to have you to care for him.  You are such a positive inspiration to me.  Dtmack I hope that you were able to have your reversal completed successfully.  If not we may be at CC around the same time.   

Good morning,

Good luck with your upcoming procedure. Cleveland Clinic is amazing. You will be well taken care of. As for me, reversal is done and i am home recovering. You will be in my thoughts.

Best to you

Derek.

Jonnakaye, I'm so sorry that you have to make that trip to Cleveland alone.  i can't image going though all that without someone.  Thank you for your kinds words and I'm happy I inspire someone!  jeff and me too, have just been through so much, we both have our health problems but I learned a long time ago, you have to be positive.  everyone on this forum, you folks have all gone through so much.  Much more than Jeffrey I think.  Even though he was diagnosed at 6 years of age, he was more acute rather than chronic.  He had his flare ups once a year for about 6 weeks and then go into remission.  But he did have his entire large intestine involved.  His doctor said it was one of the worst h had ever seen on a child so young.  So my wisdom was always positive to my baby.  Everyone has something, you just have something really crappy.  But I read what all of you have been through and I don't think he had it so bad.  Of course if the genius took his meds, we might not be here, but it is what it is, you can't look back.  So, look forward, find a yoga class, it really helps, and know that you are in great hands.  Too bad a friend can't go with you.  You really need someone at least for the first 48 hours.  My concern is how will you get home?  you can't drive for 6 weeks.  But, be strong, think clearly, and lots of prayers and good luck to you.

dianne