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I just had a visit this afternoon with Dr. Bo Shen at the Cleveland clinic. I have some air that escapes from the pouch through a sinus (hole) that causes a surprising amount of pain.

It's my understanding that the standard treatment for this is either a pouch redo or simply go back to an ostomy. I was very excited once he saw my x-rays that he was very sure what the problem was and how to repair it!

This is a year-old link to information about the procedure:

http://my.clevelandclinic.org/...t-spring-2012.aspx#1

Dr. Shen has indicated he has now done 100 patients. The treatment he recommended is approximately three outpatient treatments, depending on how much he needs to cut away. Instead of sealing off the small hole, he cuts it open to allow drainage and the area becomes part of the pouch. While I'm not an expert, I am excited that I may be able to keep my pouch!

Has anyone had this procedure and can anyone relay further information about it? Thank you!

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KNKLHEAD,

My GI just suggested this procedure to me due to my chronic fibrotic stricture at my anastomosis connection. Do you mind if I ask what your symptoms are? I do not think I have a leak of any kind as I have had scans for this. I do however has a very stubborn fibrotic stricture and I have been recommended by my original surgeon for pouch advancement surgery for this.
I am SO not keen on additional redo surgery if it can be avoided. Up until now I have been having manual dilations under anesthesia.

I hope someone else on the board can offer insight. I can report back after my GI speaks to Dr. Shen himself as when I saw him last week, he indicated he would speak to him regarding this procedure for me.
J
aka. Dr. Shen did injections via endoscopy for me for an extra long sinus tract/unhealed wound from jpouch excision surgery. Basically, its the needle knife procedure, without the cutting! I was the first person he had done this on for a wound. AND WE had significant success after three procedures. His work has allowed me to avoid another extremely massive surgery.

He has told me that for some in situations like yours it requires many treatments, even 10 or so. But regardless, it is pretty non-invasive, done as fast as a pouchoscopy, and allows you to avoid surgery.
Best wishes moving forward with this.
liz.
L
Thanks Liz. I will report back after my GI contacts me. He has said most of my issues are mechanical and the structure is the main cause of most of my troubles. I'm not sure how one knows if they have a sinus or minor leak at their connection based upon symptoms. I know I have a small ulcer at my connection also and Gi feels the ischemia is causing some issues also. The anastomoses is so tight he could barely get the tip of his finger in at last dilation. Believe it if not I can pass stool but sometimes it takes several repeat trips in short amount of time to fully empty and it dies hurt st times also. At least I know what is the main cause of my troubles. Hope you are feeling better. You have had a long road to haul.
J
I had 2 procedures for my sinus last year and it took over a year to finally get Cleveland Clinic to write off the charges, my insurance company would not pay it saying it was an elective procedure. I would find all that out before the procedure to save yourself from the headaches. not sure if the 2 procedures helped or not? I was supposed to go back for the 3rd one last October but went through a divorce and could not afford any bills. I am due for my annual scope with Shen right now but have not scheduled it yet due to money issues
Pouchomarx
Thanks to all. The reason I am going to Dr. Shen for this option is The leak caused me lots of pain in the buttocks area and I take antibiotics when needed, but realize that this is not a long-term solution. that my surgeon has done two series of ileostomy/takedown surgeries and it appears as if I have a leak in my "otherwise healthy" pouch. The surgeon asked if I'm ready to go back to Ileostomy (I am) but wanted to see what Dr. Shen had to offer.

I will be checking into whether insurance will cover. Thanks for that heads-up! Dr. Shen told me he expected three visits for the Need Knife/Sinusotomy (I'll call it NKS to shorten it!) procedure or so.

* Does anyone know the cost of each of the procedures?
* What kind of pain is one in after having the procedure?
* Is there anyone on this board that has had this procedure specifically for the purpose of allowing a leak to drain (with or without success?)

Appreciated!
aka KNKLHEAD
Hi, jmurray:

I am very sorry for the delay getting back to you. Very long story short, Dr. Shen was very optimistic that the KN procedure would fix me up. After one visit he said I'm good, see you in six months! I was very excited. Then more problems. He said to come back, I had another procedure and he then said it may take more. My local surgeon helped me to get a visit with Dr. Shen and Dr. Remzi at Cleveland Clinic for a pouchoscopy to check it all out. Dr. Remzi recommended that I have a pouch revision. Since then my local surgeon has done another "temp" ileostomy. I am doing fantastic, feel great -- and a new appointment with Dr. Remzi in the fall to see if we want to do the revision again.

Long story short, I really like Dr. Shen and confident his procedure can and does work -- but it didn't work for me.
aka KNKLHEAD
I had Dr. Shen's KN procedure for two sinuses. The first one was treated without issue.

As for the second one, he could not find it initially, and my surgeon at Cleveland Clinic recommended pouch redo. After having the first step of the redo (loop ileostomy), I had Dr. Shen take another look. This time he was able to find and treat it.

After several visits (4), the 4.5" sinus is apparently now healed. I am scheduled for a take-down in a few weeks. Hopefully that will be the end of my pouch issues.

There is no one who knows more about pouch sinuses than Dr. Shen, and he really believes in this procedure.

Good luck!
N

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