Sounds like you have fistula tracks running from your pouch's anastomosis site into your presacral space.

Yep. The study showed contrast material leaking to the presacral space. This is the area between your pouch and the lower spine, pretty common area for a leak. That was where I had my abscess way back when (but no fistula, as the leak sealed pretty quickly on its own). Yours could easily been there since your original peritonitis, but just not diagnosed.

The dilation of the pouch sounds like normal pouch "stretching." But, it does appear that you also have an anal stricture. This may have been the reason for the fistula.

You probably already know that fistulas with abscess pockets can be one of the most difficult complications to deal with. Long standing ones are usually opened so that the abscess pocket actually becomes part of the pouch itself, rather than trying to close or remove it.

Jan

Thank you Jan! Had pouchoscopy this morning. Before the test, surgeon said, he suggested with all these complications, that we call it a day and go back to an end illeosotmy. The gi, who was also there, said we should discuss remicade, since the cimzia didn't work, but we would speak after the test.

When I woke up, there was an order for flagyl, canasa suppositories and remicade infusions. Both doctors were gone, so I demanded to see the surgeon. He came back and said before we do anything permanent, he wants to try another course of medication, and see if we can make it with this pouch.....

What are your thoughts Jan? I am waiting for the gi to call so she can discuss her thinking with me.

Thanks!!

If it were me. I'd seek a second opinions with Dr. Shen (GI) and Dr. Remzi (surgery) at the Cleveland Clinic (in Ohio, not Florida), as I think you have putzed around long enough.

To me, Remicade is a backwards step. If Cimzia did not help, Remicade probably would not either, particularly with the presacral pocket there. You may need the ileostomy whatever other treatment you opt for, to give it the best chance to be successful. Antibiotics are more likely to just reduce symptoms, not heal a fistula. Canasa? Might help a little, but more like spitting in the ocean, in my mind. I think they are just taking the "shotgun" approach, where they just blast with both barrels, hoping they hit something.

That's just my opinion, for what it's worth, and I really do not have a crystal ball or special insight. I'm just thinking it is time for new "eyes" on the situation, and you may as well go with top dogs.

Jan

Thank you Jan. I trust your opinion, even though we have never met. I feel like I can trust you, as you have no hidden agendas, like our doctors sometimes do.

I will go ahead and do the second opinion at the real Cleveland Clinic. I have been hesitant, as I have no money, and insurance does not cover it. But as you said, I have putzed around long enough!

Thank you for your guidance!!

sherry-
I was just reading my most recent CC bill and noticed a long statement on the back about their very generous financial assistance for some situations. You may want to investigate.
also as I mentioned to another poster.. you may be able to expedite appointments if you get your current doctors to refer you to CC.

Thank you Liz. I will look into it

Also, you may find your insurance might cover a second opinion at CC Ohio (even though there are other local offerings), if your doctor writes a letter of medical need, indicating they have already exhausted the conventional wisdom and experts in your area, and only those with the experience level of CC Ohio would have the skill set for your issues that have been resistant to their treatment. They can word it in a way that it is the most cost effective option, rather than wasting time and resources of the "local talent," along with delaying your resolution further. Of course, you probably are on your own for travel expenses. You can start with a remote second opinion (where they just do a record review), but I think you probably will need the actual in person evaluation for them to decide how to best proceed.

I know it is difficult to ask your current doctors to refer you out, but it is not an insult to them. It is good medicine to know when to "pass the torch" as they say. At some point, they have to admit they have done what they can. It is possible that you may get the same recommendations at CC, but at least you will know it is probably the last word on the issue.

Jan

That is good advice, and like you said, it would be very difficult to ask my current doctors to write such a letter, especially since they are at the Cleveland Clinic Florida. I wonder if it would be a pissing contest.

sherry.. this is about YOUR health. It took me some time to get the guts to ask my local GI for a referral to Dr. Shen. But once I did it, it was no big deal. He even said that he was about ready to suggest that to me on his own.. though I don't believe him. Anyways, good doctors would only want the best for you. And good doctors should know their limitations and be happy to have you seek a second opinion from the true experts in this field. And in your complicated health situation, Dr. Shen is your man along with whatever surgeon he may refer you to, if needed, at CC Ohio.

Actually, all the MORE reason that they would refer to Dr. Shen, since they are aware of his expertise and he is in the same system. It could be a pissing contest, but if you take it out of their hands and request it, then they can stop trying to be king of the mountain, because of "patient request."

Jan