sinus in J pouch anyone got advice?

I have a sinus in my pouch, discovered a year ago.4 years out from my surgeries. Dr Shen has tried kneedle/knife therapy a few times to try and open it up and incorporate it into the pouch. only real concern is it abcessing so I am on Entocort and Tindamax. I have been dealing with it so no surgery unless it abcesses.

Hi EP,

I also have a sinus tract. I have had it since day one. When my surgeon first discovered it via a "pouch-o-gram", he thought it was a leak. It has been the bane of my existence up until 3 years ago when I started on Humira injections!

It would always get infected as stool would become trapped in it (not drain), and I would have bad tailbone pain along with it. It hurt to stand up! I was always on Cipro. I had a couple day surgeries over the years where my surgeon would "clean" it out in hopes of having it scar over. And it did, but eventually it would open up again & get infected.

I started Humira a few years ago because Cipro had lost it's effectiveness. Well, my tailbone doesn't hurt anymore, and the sinus has not been a problem. It is still there, but stool must drain out as it doesn't get infected.

I don't think there is anything that can be done about it other than a new pouch......which means more small bowel that is lost.

Joe

Hello JT can you describe symptoms of pouch sinus tract please?

I had the same problem with the sinus leading to recurrent abscesses, tailbone pain, fevers and years of antibiotics. I had surgery a few years ago where the sinus was made wider and stapled to keep it open so things would not get trapped. The sinus and cavity it lead to were made part of the pouch.

SJP3: is it possible to have a sinus tract without fever?

I had significant sepsis according to blood work and physical signs but no temperature so yes seems you can have a sinus and infection without temperature. I ended up with swelling in the buttock and groin area as well as a lump at the top of my thigh. These were painful, hot to touch and the skin became red and shiny as the swelling increased. Felt pretty rough.

They must treat things like this a little different in the UK. I have never heard of a pouch sinus setting anyone back like that especially being told you are stuck with the ileo. If it is that bad in teh US they will remove the pouch and put you back on a permanent end ileo. loops are only suppossed to be temporary. If you stay ona loop you will never get better because you will still have some drainage get past the loop and the normal mucus in te pouch that still needs to get passed. Everyone I kno wthat has had the sinus issue gets treated and then goes on with life and the pouch still functions.

Mike

Dear Mike who do you know got treated for sinus?

SJP3, what is this surgery you speak of? dr Shen does a similar procedure called needle/knife therapy but must be done several times to "maybe" achieve results. didn't know there was an actual surgery that fixes? explain

Poucho, basically the surgery is what they used to do prior to the advent of the needle-knife procedure. They go in, open up the sinus wide, so that it actually becomes part of the pouch. Stool cannot become trapped in it and cause infection. The downside is that it is real surgery with possible complications. There are no complications to the needle-knife other than needing multiple treatments, and it possibly not being effective.

Jan

JT: Did you have trouble emptying your j pouch with sinus tract?

quote:

Kock / Koch

I do have problems emptying if I have pouchitis.......which is chronic!

Sorry for delay in response. First, yes you can have a sinus without fever. My fevers would come and go - sometimes no fever for months. Second, the surgery I had was real surgery under general anesthesia. That said, I was discharged the same day. The surgeon (Dr. Rombeau at Temple Univ. Hosp. in Philadelphia - now retired) went into the pouch and opened the sinus making it much wider and then used staples to keep the opening wide enough to drain. The sinus and the cavity it lead to became part of the pouch. I know Dr. Rombeau discussed the procedure with Dr. Kiran at the Cleveland Clinic, so I assume the surgeons there are familiar with the procedure. However, I was recently informed that Dr. Kiran is no longer at The Cleveland Clinic.

Article on Dr.Kiran.. http://nyp.org/news/hospital/2...orectal-Surgery.html

JT: i have the same problem with my sinus and cipro. Do you know what the size of your sinus is? Mine is 1.5cm . Thanks

I developed sinus before my take-down, and 3 Remicade treatments cleared it up.

Debra: was the sinus giving you symptoms? Do you know the size?

Bergie77 - I do not know the size of the sinus. I have seen it on the monitor though when I have a scope done.

J.T:: can you please PM me your phone number? I have a sinus tract problem just like you and having horrific tailbone pain((