Medrol taper for 6 weeks, and first two loads of a Humira in...
Having normal stools, no pressure to go, got my gas back, just enough, to make things simple. Maybe 5-6 stools a day, no nighttime needs to go. Fistula isn't feeling bad at all.
So feel pretty ok last 4-5 days.
Fingers crossed.
This definitely is sounding like it was an inflammatory flare and not structural, like a stricture. Glad things are simmering down for you. Hope the Humira kicks in. I wound up having to take it weekly when I was on it.
Jan
Jan
Rachel
I have to respectfully disagree with Jan’s last post. Based on my experience, you should not rule out a structural problem.
I experienced minimal problems with my first pouch for nine years, but then started experiencing issues similar to yours, and others, discussed in this thread. As mentioned earlier in the thread, it is common for the intestine to narrow and develop adhesions and strictures over time. This is what happened to me. It was not obvious on the imaging, but my surgeon verified the changes after opening me up. I was having blockages, some of which lasted a few hours, but a few lasted days and required surgery. Unfortunately, I lost that pouch after 15 yrs due to a c-diff infection.
The pain you have experienced on the left side is likely the area of structural change you and your docs should focus on. Please discuss this thread with them and ask them to monitor that area more closely as you move forward.
Best wishes.
Susan
I have to respectfully disagree with Jan’s last post. Based on my experience, you should not rule out a structural problem.
I experienced minimal problems with my first pouch for nine years, but then started experiencing issues similar to yours, and others, discussed in this thread. As mentioned earlier in the thread, it is common for the intestine to narrow and develop adhesions and strictures over time. This is what happened to me. It was not obvious on the imaging, but my surgeon verified the changes after opening me up. I was having blockages, some of which lasted a few hours, but a few lasted days and required surgery. Unfortunately, I lost that pouch after 15 yrs due to a c-diff infection.
The pain you have experienced on the left side is likely the area of structural change you and your docs should focus on. Please discuss this thread with them and ask them to monitor that area more closely as you move forward.
Best wishes.
Susan
Yes, we know there could be, and I've had dilations for that. On treatment now, things are WAAAAAY better. I am open, the dilator passes through. The abatement of symptoms happened after I started the high dose of Medrol (48mgs).
There WAS narrowing there, yes, but he thinks it may likely be related to inflammation, especially since I developed a perianal fistula and an inflammation marker, like with perianal Crohn's type disease.
We are looking at both sides. We haven't "ruled in or ruled out" either side of the coin, but we are watching both sides (is it just narrowing with time? is it narrowing related to inflammation (surgeon always said when he dilated, he could see inflammation there).
The pain on the left side could be something, and we're watching it, but the most likely thing is that the seton is rubbing that side. (It rubs the right side where it is, too, and I get a similar pain, but the left is more bothered by it). It's not continuous pain either. It feels more like an "irritation." It happened after I started Canasa, too, that's when it became worse. It's been better lately.
Thank you for your insight.
There WAS narrowing there, yes, but he thinks it may likely be related to inflammation, especially since I developed a perianal fistula and an inflammation marker, like with perianal Crohn's type disease.
We are looking at both sides. We haven't "ruled in or ruled out" either side of the coin, but we are watching both sides (is it just narrowing with time? is it narrowing related to inflammation (surgeon always said when he dilated, he could see inflammation there).
The pain on the left side could be something, and we're watching it, but the most likely thing is that the seton is rubbing that side. (It rubs the right side where it is, too, and I get a similar pain, but the left is more bothered by it). It's not continuous pain either. It feels more like an "irritation." It happened after I started Canasa, too, that's when it became worse. It's been better lately.
Thank you for your insight.