Remicade bridge to J-pouch

IV Remicade as a rescue med is usually given in 10mgs per kilogram (instead of 5), double-doses. They speed up the loading doses for a faster response.

IV steroids are a rescue med.

IV cyclosporine is another rescue med. It's a strong immunosuppressive med.

You need something once you're off of them, like Xeljanz.

Just remember the medications stop the immune attack, but your body must still heal itself. With a severe flare, you are not going to feel 100% better overnight, even on remicade and IV Steroids. It sounds like you are on the right path as you are seeing some signs of improvement. Hang in there, it will get better in the coming days and week!

Yes Andrina I’ve seen all your negative replies throughout the forum

Sevodreams,

Surgery is technically not a cure because you still have UC but no colon for it to attack.

I have chronic pouchitis and it is so much better than living with a diseased colon. It happens to about 10% of j-pouch patients.

I’ve taken cyclosporine twice and you really need a doctor who experienced with cyclosporine to administer it. They transferred me to another hospital to administer it when I was in your situation. It works really fast.

Have you done any stool samples since they started you on high dose steroids?

8.5 yesterday I meant

That is a huge drop in your hemoglobin in 1 day. Have you talked to your doc about that? Are they going to give you a blood transfusion? I had one when my level dropped to about 7. You likely will need iron infusions as well because those levels are probably low also and you can't rebuild the hemoglobin levels without good iron levels.

When I had IV steroids several years ago I left the hospital on 60 mg of pred and tapered from there. In my opinion going from IV steroids to 40 mg of pred is far too drastic of a drop. Also, 60 mg of pred saved me from being hospitalized last year when 40 mg wasn't enough. I did split dosing to get more even steroid coverage. I wasn't sleeping well anyway because of bathroom trips so it didn't affect me like others talk about and after a couple days I was actually sleeping better because the pred calmed things down and I wasn't running to the toilet so much.

Hope things stabilize for you and the remicade kicks in soon!

Not sure how long I was on them ... I think it was about 4 days. I was still bleeding and had diarrhea when we switched to oral but my bathroom trips were down to 6/day. Bleeding didn't ease up until about a week or so after I was out of the hospital on 60mg of pred.

sevodreams said...

KS I know I can move on just frustrated. I’ve never seen anything constructive that that person has posted. It’s always just, surgery is not a cure. I’m very aware of the risks associated with it and that QOL May continue to suck afterwards. But, it seems like most people do well and that’s what I’ll choose to focus on.

You've been a member for a couple of months and Adriana has a been an active member here for almost 10 years with many posts. She has been in your situation and has had surgery, you may or may not want to hear her experiences but I don't find her to be hyperbolic about this because this was her outcome. And she is and has been a productive member of this community.

I got chronic pouchitis the same day that I was reconnected, I don't know what it is like to live with a functioning J-pouch without medications. I was on antibiotics for over 3 years straight without being able to get off of them, everytime I stopped I'd flare 5 days later. I'm now on Stelara going on almost 4 years. I'm on a biological medication while we're in the midst of a global pandemic -- I really wished that my surgeries had worked for me.

For my 3 surgeries I was in the hospital for a total of 55 days. For my two flares I was in the hospital for Cyclosporine for a total of 46 days. My hip replacement due to long term steroid use was 5 days. I've spent a 106 days in the hospital because of UC and I would not want to be in a hospital any longer than I had to right now, I'd probably chose the fastest choice to get out of the hospital.

IF things get worse then you may see hospitals not doing elective surgeries to keep the risks of spreading the corona virus further to an at risk population. So you'd be able to get a colectomy/ostomy but they may postpone your j-pouch or take-down surgery(ies). Just a possible concern.

I can understand sevodreams perspective; most of us are aware of the risks going into surgery, and at a time when we're really suffering it helps to hold on to something positive.

What would you have done differently? I’m very sorry to hear what you’ve been through Andrina.

I’m on day 4 of IV steroids, I had one BM today that involved no D, some little nuggets, and perhaps two small blood clots. I was blown away. Then the next one after that some D, little blood, and formed floaters on top. Hopefully that means I’m headed in the right direction now. They are transferring me to the Cleveland Clinic tomorrow. Hopefully their GI guys have some tricks up their sleeves, but if not that center does the most pouches in the world so I’ll be right where I need to be.

I think I prefer the 3 step, sounds like the results are better if done that way. The military is covering everything thank goodness, and CC is in network. Sucks that I had the one BM yesterday with no D or B then it all came back right after. Maybe there was a obstruction or something that prevented it all from coming out. I’ll be glad to be in an actual IBD center. I’m willing to try the medical route for sure, but have made peace with surgery if it comes to that.