Seeing IBD Specialist Tomorrow - Decision?

I'm not getting your strategy here. ???

lol, Levi. Darling Husband. Tornado...surgery is a big deal from what I understand so you would really have to be ready. Good luck and let us know how it goes.
B

I have never felt that Remicade has done anything for me. My levels are spectacular though. Remicade can encourage scar formation, which is what the stricture is according to the pathology report. I think it is a huge waste of time and money to keep taking it, especially if it is keeping my last bit of colon from healing and making me exhausted. If I'm wrong, I'm right back here, but it is later in the year.

I'm just plain old not ready for surgery. They called me for this appointment because I've been so slow at getting to the surgeon and then scheduling surgery.


DH is dear husband, although he may not be so 'dear' :)

I'm not sure where you're getting that Remicade would cause scarring? I'd like to see a source on that if you have it.

For what it's worth I've always thought the opposite was true. I was on Remicade at the time of my first surgery, and after the second surgery the surgeon told me that I had formed virtually no scar tissue, most likely because of being on Remicade at the time.

www.medicinenet.com/inflammatory_bowel_disease_intestinal_problems/page6.htm

Some medications for IBD, such as infliximab, however, may make some strictures worse. The reason is that these medications may actually promote the formation of scar tissue during the healing process.

Just so you know, my UC was limited to my rectum; a spot the size of a quarter. It was enough of a problem that after medical treatment failed I had surgery. I'm not suggesting you have surgery, but you need to know that even a small stubborn spot may not ever respond to treatment.

Sue

I guess it's a question of whether your narrowing is due to active inflammation or scar tissue. If it's the latter, then it's going to be narrow forever and Remicade will neither help nor hurt it. If the inflammation is active in that area, then your premise may hold.

Let us know how the appt goes

Tornado, I recently read the same info, that the biologics can actually encourage scar tissue formation. After googling UC & strictures. Heartening, since I've been on or another biologic for 5+ years now... and my colon is totally strictured!   But... I don't know- I understand your reluctance for surgery, me too... I've got a consult scheduled for 2/26 that I think of cancelling 25x a day. But... regardless of what caused the stricture, it's there. My GI thinks it's scar tissue, so whatever helped it form, I suppose that's a moot point. A huge part of me just wants to put the whole thing behind me (surgery), & another part wants to say "No way!" & live with a colon that's failing. But... we all know the argument that planning a surgery is the way to go. Honestly, if I were able to get a j-pouch I'd be all over it. I'm not sure why your hesitating so much. The perm ileo freaks me out a bit. Not horribly so, but enough to make me not want one! Good luck tomorrow- ignore your DH tonight, go shut yourself up in your bedroom & be alone. As much as he loves & supports you, he doesn't understand, he can't understand, & ultimately he can't make that decision for you. Mine drives me nuts- "I just want you to be healthy."... I'm like "yeah, that's really helpful!"

So.

The strictures are scar tissue. She had to dilate them to get her scope through. She could not dilate them more, because they are also actively ulcerated areas with friable tissue between them. Strictureplasty usually does not work in the colon, but is not an option for me because they are so low and I'd need a diverting osteomy anyway.

They have to come out because I am going to either obstruct or get cancer. She said I could wait if I want to, but cancer screening is going to be very tedious.

She threw a huge wrench in the works today. I have a new surgical option of a resection. I have not talked to the surgeon, but it sounds like it would be low anterior resection with coloanal anastomosis (LAR/CAA), which is basically a cancer surgery. I could remove the strictures and associated cancer risk, but I'd still have to take medicine for the rest of my life. I may or may not have to stay on Remicade, but I would always need something.

I would lose the option of a j-pouch forever if I took this route.

I am really, really overwhelmed today.

 We're like UC twins right now... same deal for me, they can't dilate cause of the friable tissues. It's hard to hear of an option disappearing, I nearly fell off my chair when I heard a j-pouch isn't an option for me. If you get a resection, I suppose that'd be it- it's gonna work, you'll hopefully go into remission, & stay cancer free. Or not, & you wind up on meds, still flaring, with only an ileo to go to. I guess it comes down to a couple things- are you willing to remain on meds indefinitely if you try a resection? And you do have enough healthy tissue to even do a resection? Can you opt for a j-pouch now, & be done with it? What scares you away from giving a j-pouch a try? I'm so sorry... I totally understand. Don't you just wish it would all go away, somehow??? That's where I'm at, I go from truly wanting to have surgery, to hating every "normal" person, to being sad & mopey, to wanting to cancel all appt's ASAP....

1 is the stenosis in the proximal rectum. It is up at the rectosigmoid junction, so most of the rectum should be preserved.

3 is the stenosis in the sigmoid colon. They're supposed to be 5cm apart, with friable tissue between.

VIEW IMAGE


A j-pouch is not an option if it is Crohn's. She recommended moving to a three-step procedure today. I think she may still be leaning that way.

They're actually labels for the accompanying color photos.

That end is normal or has quiescent colitis.