Lisa-I have a perianal fistula as well and have a seton drain in. Were you still abcessing with the drain in? The seton is a little rubber band like ring that goes through the fistula and keeps it open so it can drain. Not ideal but much better than losing the pouch!

Hi, Yes I still had a mushroom cap kinda tube placed in while the abscess built up again. At my next appointment on February 12th, I will be discussing my next step with a few doctors along with my surgeon, I can ask about the Seton drain. I see the Seton drain reaches quite a range of area. My abscess is very high/deep in so he says it lessons any options for me. I can only ask and find out more available options for me. I'm new to all this and I'm not familiar to how it all works so the more research the more questions I can ask. I appreciate your input. Thanks!

Narrowing is causing your perennial abscess. Changing diet can cure your perennial abscess and the narrowing. What you should do: eat a lot of Banana, applesauce (do it by yourself at home the whole apple even with the skin), grinded flax seeds, and grinded almonds, drink a lot of water. Sorry for my bad English but really if I was you I will not remove my jpouch for this reason. It is curable without surgery. Very long time ago happened to me but not anymore.

Thanks! I didn't know my diet could have an affect on it. I know I can't do the apples with skin on because it causes a blockage for me.  I can't digest the skin of the apple. I already have flax seed in my diet. I will look into that. I'm open to all options and if nessesary I will go for a second and third opinion if my surgeon has no other options for me.

I had a fistula leading to abcess at site of jpouch connection. Was on antibiotics for 3 years. Part of my problem was no one could find the hole. Once it was found I had surgery done to make the hole larger. The idea being that waste would get in the hole/fistula and create an abcess because it couldn't get out. The surgery made the hole larger allowing any waste that got in to flow back out. That was almost 4 years ago. My surgeon is retired but I believe a similar procedure is done at Cleveland clinic.

Yes! That's exactly what they are telling me is that waste is getting into a pocket! I'm taking high doses of antibiotics right now.  I did read about someone else having a similar issue and they were also at the Cleveland Clinic where they fixed the problem. I'm in Chicago but if I need a second opinion I'm leaning towards The Cleveland Clinic first. Thank you for your input! I'm glad I'm hearing more positive outcomes no matter how long the struggle may be.

Yes, Dr. Shen at the Cleveland Clinic performs what is called a needle-knife procedure, performed endoscopically, to lay open a sinus tract or fistula (depending on where it goes). It can avoid open surgery, but usually takes multiple treatments. I don't know where else this is done. You could probably call them and the advice nurse might be able to tell you if a GI near you has adopted this procedure.

http://my.clevelandclinic.org/.../edigest-spring-2012

 

Here is a link to a video of Dr. Shen explaining it:

http://www.youtube.com/watch?v=CqGj-vcQ4nQ

 

Jan

The procedure I had was done by Dr Rombeau in Philadelphia. He has since retired. He spoke with another surgeon, Dr Kiran, before he did the surgery who used to be at Cleveland Clinic and is now in New York City. My surgery was not the needle knife. For my surgery the surgeon opened the hole larger and stapled it to stay open. He had admittedly never done it before. Dr Kiran, and others, may be familiar with my variation of the surgery.

Sorry for not replying sooner. My abscess has flared up again. It seems to be draining. The inscision is still slightly opened so its able to drain some. Thank you both for the information and Jan for posting the link.  I'm going to contact The Cleveland Clinic to discuss my issue with a surgeon to see what my options are. I just want the ileostomy to be my last resort if I can avoid it. Its been 7months and three surgeries and I'm just frustrated. Thank you again for the positive feedback. I feel there's some kind of hope.

Lisa

Lisa Ann, my thoughts are to make every effort to keep your j-pouch.  If it turns out that removal of your pouch is necessary, there are continent ostomy options available, namely the k pouch and the  BCIR, that avoid having an external bag and its associated issues.  Cleveland Clinic does k pouches and they could provide information on these options.  I wish you the best on whatever you decide.

Bill

Easier said than done given how sick you can feel with an abscess, but I'd be patient and get as many opinions as possible before doing anything as drastic as losing your pouch. It took me over 3 years to resolve the issue. I am (trying) to attach a link for Dr Kiran in NYC. If no luck elsewhere you may want to consult with him. http://asp.cumc.columbia.edu/f...118&DepAffil=Surgery