Pouchogram showed a small leak :(

Hi Zoe, so sorry you are going through all this.  My son had something very similar.  He had is takedown in Sept 2014. In Nov 2014 developed a collection.  It was so bad they thought it was in his bones.  In Jan 2015 they found the fistulia.  They put in a drain, I forget what kind but it was in his back.  He was also on TPN for 8 weeks.  None of it worked.  The collection got smaller but didn't clear up until this past summer.  Hang in there.  My son had a tiny micro tear in his pouch.  Don't rush it!  It will eventually clear up.  Jeffrey went back on the ostomy in March  2015.  Then leak was not found until July/August 2015.  It was difficult to locate because it was behind the pouch at the seam line.  it was found by doing several pouchoscopies.  The surgeon put in a mushroom drain, left it in for a few days in the hopes that healing would occur around the drain.  The theory being the body will try and absorb a foreign object.  Which is exactly what happened.  The doctor removed the drain with a firm tug and we knew we found the problem and it was healing.  He finally had his second takedown 2 weeks ago.  My best suggestion is wait it out.  If the doctors know where the leak is, they can insert a drain into the collection and have the hole begin to heal.  It is not an easy process but it is possible.  I never thought it would work, but thankfully for wonderful doctors, it worked.  I wish I could say it was a quick process but it was not.  My son had been through a lot as well, 4 big surgeries. It's not easy.  Lots of complications right from the start.  When my son had his second ostomy I said to him this " do not let that bag define you.  If you do, your illness wins.  You are far bigger and braver than letting that thing control you.  It is not who you are. ". And I say the same to you.  The ostomy is just a means to an end.  You have a problem, but it can be repaired.  You have a life, live it.  Don't let that ostomy stop you from your dreams.  It is not who you are.  Something I was able to do was take a family trip to Disney World.  It was a place we had not been to in about 12 years and we always went for Mothers Day weekend.  I needed to prove to my son that he could travel, leave the house, enjoy himself in spite of the ostomy.  He didn't want to go because of the ostomy but went for me.  He didn't expect to enjoy himself.  It was the best thing we could have done for him!  He had a great time, went on what ever rides he wanted, could eat again.  And it proved to him, he could enjoy himself. It started out as a trip he was going on for m happenings, but ended up learning a lot about himself and truly having a great time!  In spite of the ostomy.  So don't let that thing stop you, or define you,  I'm going to make an assumption that you are young.  My son is 25 .  So I truly understand how you are feeling.  Keep your head high!  Eventually, you will be whole again!  

Dianne

Hello Dianne,

Thank you so much for your sons story. I hope your son is feeling much better. It sounds like he has had a rough time also.

In 2013 I was very ill. I Was in hospital for 4 months and they decided I needed emergency surgery. 

I went through so much at that time and it was a very hard recovery. Everyone was positive about the J pouch procedure and it made me carry on, knowing one day I could lose this bag. 

I was so ready for the reversal and to get my life back. I'm similar to your son, I don't want to go on holiday with this bag, I don't want to stay with friends, things I did before are not the same ��

But you are right Dianne, and you have made me feel slightly better in reading your sons story that it's just more time.

thank you for taking the time to reply to my message 

Zoe xxx 

Zoe, please hang in there!  I know its an extremely difficult road it truly is and don't minimize it.  No one should go through what everyone here is going through.  But in the end, its only stuff.  While it is a huge deal, it is not the end of your life.  Like I said, don't let it define who you are!!  Let us know how things work out for you, I know its a long journey, but its a journey.

Lots of prayers and good luck, 

Dianne

Hi Dianne 

How is your son Jeff getting on? I hope he is feeling better. 

Zoe  

Hello Zoe. What was the outcome of your problem? A friend of mine is having the same issue. Did your pouch found success or you had a redo?

Hi 

I feel for your friend. I wish them well. Unfortunately I had a lot of problem and my pouch didn’t heal. 

Eventually the mri showed that the Leak could have healed as the collection looked like it had gone but as soon as I had the takedown it came back and I got very unwell. 

I went back to a stoma. May try a redo again in the future. 

Sending luck and good vibes to your friend 

I am so sorry for you.

I have question. Did you have your pouch functioning without the loop estoma? Or you never reached the point of closure of the loop, and the leak was always present while having an estoma?

Yes I did have takedown but things were very bad, the leak came back as soon as the stoma was reversed. 

I was without the stoma for 2 months and had to have one again because of all the problems  

i hope things are better for your friend

Has your friend got an abscess as well as a leak?

sometimes with time the leak could heal itself 

*Zoe** posted:

Has your friend got an abscess as well as a leak?

sometimes with time the leak could heal itself 

Yes she is still draining the abscess from the anastomosis's leak, but she is 2 months old from the takedown with her loop stoma. She is waiting to recover and hopefully she will have her reversed stoma in the next months and live with a healthy pouch.

Thank You for answering!