Hello together,

I had two surgeries -> creating of a Kock-Pouch in July 2009 and an fistula surgery in March 2010. In March I got a temporary Illeostomy.

Since my last surgery I have a fistula from the incission to the Kock-Pouch. Furthermore in the valve of the Pouch is a new (or the old) fistula.

I have tried Cortison, Azathioprin and Metronidazol and have spent much money for alternative therapies. Nothing has helped.

I think it was a very bad decission that I agreed to build the Kock-Pouch.

Perhaps I will soon lose the Kock-Pouch and then I will be extremly depressed, because I hoped that I can live without the bag.

Should I try Infliximab or should I phone the surgeon and assign him to remove my Kock-Pouch?

Kind Regards
Martin

Hi Martin,

Are there any other K-pouch surgeons in Germany that might be more qualified than your present surgeon?

Or, any way you could come to NYC or Florida?
Dr. Bauer in NYC is great. Dr. Shore in Florida and Dr. Remzi [sp?] Any docs in Sweden who do the K-pouch.

Let me know if I can be of any help. I would try and save the K-pouch if at all possible.

JW

Martin,
Are you taking the meds because of the fistulas or for another reason?

@Lesrich1

At the moment I am taking 10 mg Prednison and 150 mg Azathioprin daily because the screening of the Kock-Pouch showed a sligth inflammation. Probably this inflammation is the reason for the fistula.

I have Crohns Disease since 1985. From March 1997 till June 2009 I was symptom free and I took no drugs during this time.

In July 2009 I got the Kock-Pouch. A few weeks after the surgery (in the phase, while the Pouch was expanding) the Pouch became leaky. In September and Oktober 2009 it was 99 percent continent. Afterwards it became leaky again. The reason therefore was a fistula, but I did not see the opening of this fistula.

In the internet I have read many reports about Infliximab. Some patients write that it is a miracle drug. Perhaps Infliximab can help me.

Kind Regards
Martin

@Bodoni:

Of course I can come to NYC or to Florida. But the question is, if my German health insurance will pay a surgery in NYC or Florida. Also I can travel to Sweden. The chances that a surgery in Sweden will be paid from my health insurance are relatively good.

Kind Regards
Martin

Martin,
If you think Infliximab is worth a try to keep your pouch than do it. At least, you will know you have tried everything.
It is a rare case that a continent ostomy will be built with Crohns disease present. As you know, Crohns can keep re-appearing.
You may find yourself having to make a tough decision. But, think of it this way; you will feel healthier.

There is a new surgery on the horizon as well.. http://www.ostomycure.com/ this was posted some time ago I emailed the company and they said they expect to publish results of clinical trials some time around august

quote:

Infliximab

It is a difficult situation you are in, but this is a very complicated surgery and even those that are pretty good struggle to get it right (not to mention different patients react and heal differently). After many, many surgeries, I decided that whatever the cost, I was going to go to the best surgeon for this type of surgery to ensure my success. I figured finances would be difficult for awhile, but hopefully a successful surgery could give me another 70 years of a happy healthy life. I flew several hundred miles away from home and family to the Cleveland Clinic to have my surgery by the supposed best surgeon (at the time) for this type of surgery, Dr. Fazio. Finances were a challenge, but I have not regretted the decision once in the five healthy years since.

I was on one of the drugs related to Infliximab for a bit. People have truly had wonderful success with it. You have to remember that a small number people have had problems with it. So while it may certainly be a solution for you, realize that there may be risks to taking it and you may want to discuss with your physician and really listen to the potential affects of the drug and determine if those risks are outweighed by the "potential" benefits.