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@Bent-Arne posted:

I tried infliximab three weeks before my surgery.. Was my last option. I got two big doses over a week, didn't help at all. 

Infliximab = Remicade, unless you took a biosimilar. Getting 2 big doses in a week is not how it is usually administered- in fact I have never heard of it.  It is done 0-2-6 (thought this was the industry standard) and after that every 4-8 weeks.  Usually you do not see results for months.  Results show up on a scope in 6 months.  If you are really sick you cannot go on meds like this and expect instant results- not going to happen in many or most cases, regardless of whether it proves effective in the long term.   It's partly for that reason that I was on antibiotics when I started Remicade, and eventually was able to wean completely off of them.

Last edited by CTBarrister
@CTBarrister posted:

Infliximab = Remicade, unless you took a biosimilar. Getting 2 big doses in a week is not how it is usually administered- in fact I have never heard of it.  It is done 0-2-6 (thought this was the industry standard) and after that every 4-8 weeks.  Usually you do not see results for months.  Results show up on a scope in 6 months.  If you are really sick you cannot go on meds like this and expect instant results- not going to happen in many or most cases, regardless of whether it proves effective in the long term.   It's partly for that reason that I was on antibiotics when I started Remicade, and eventually was able to wean completely off of them.

I am surprised his doctor even thought that was okay to do it like that lol

Well, this was the last resort I suppose.. I was in the hospital really really sick. The first dose helped slightly, but then it went for the worse. So tried again,but failed miserably. This is the problem with the Norwegian healthcare system, regarding ibd. Things are tried way too late. The gi and the surgeons said this was normal to try as a last resort. 

Biologics are usually last line or last resort drugs, but Remicade is not usually administered the way your doctors did it, and there should not have been any expectation of instant results if you were really sick.  Sorry to hear about that Bent-Arne.  It's possible you were headed for surgery anyway, and their rationale was "nothing ventured, nothing gained" and you did not have months to wait it out. It may or may not have helped if it had been administered as it usually is, and if you did not have months to wait it out, they could have ended up eventually performing an emergency surgery on you after your colon perforated.  So I can kind of understand their out of the box thinking. I was very close to that status when I had surgery, but Remicade did not exist at that time in the USA.  It only came to market in 1998 or 1999. So I was past saving (from surgery) anyway.  They tried Imuran on me before my surgery, and my liver chemistries were sent sky high, so that was the last ditch fail in my case.

Last edited by CTBarrister

I was also given one dose of Remicade before surgery as a last ditch effort to save my pouch.  My GI at the time said it was a miracle that could put me in remission.  Needless to say it didn't work as he intended and I had j pouch surgery a week later.  (This is also the GI who said I'd be cured after surgery and therefore pretty much ditched me after surgery.)

That was in 2006.  Hopefully, more GI's are informed about the proper way of administering it. (I was put on Remicade a couple of years ago and had a bad reaction to it.  Perhaps it is due to this one dose given 14 years ago.)

 

 

@Bent-Arne posted:

Well, this was the last resort I suppose.. I was in the hospital really really sick. The first dose helped slightly, but then it went for the worse. So tried again,but failed miserably. This is the problem with the Norwegian healthcare system, regarding ibd. Things are tried way too late. The gi and the surgeons said this was normal to try as a last resort. 

Remember to get your pouchy checked once a year- some doctors do not know about that. You are in Norway still? I hear the sun rarely sets over there?! That sounds peaceful! 

I was also given one dose of Remicade before surgery as a last ditch effort to save my pouch.  My GI at the time said it was a miracle that could put me in remission.  Needless to say it didn't work as he intended and I had j pouch surgery a week later.  (This is also the GI who said I'd be cured after surgery and therefore pretty much ditched me after surgery.)

That was in 2006.  Hopefully, more GI's are informed about the proper way of administering it. (I was put on Remicade a couple of years ago and had a bad reaction to it.  Perhaps it is due to this one dose given 14 years ago.)

 

 

That was wrong for him to ditch you- that is pretty tacky, mine did the same thing after my surgery too. Hopefully the world gets better doctors. I am happy that you are okay now though,

Just talked to Dr Philpott  ( dr.shens replacement for me at ccf) anyway..wants me off of entyvio & start stelara. I am a yr into entyvio. J pouch seems to have healthy tissue but 5 ulcers inside & such severe diarrhea & rectal pain. Right side stomach/ pelvic pain intense. Dr thinks perhaps no j pouch anymore & go to ileostomy. Ugh..I'm going into 32 yrs of j pouching & after all of this time to loose it. I guess I've been blessed though I can look at it that way positively. Any one else have this happen?

Ha, ironically I was on Remicade for less than a day.  I was in hospital for uc flare. Finally got through all testing and approved to administer. 8 am they gave me remicade. 3 pm ct scan for pain i had been having for a few days. 630 in surgery for ruptured colon, woke up with the ostomy bag. I think I ruptured a few days before the surgery and Remicade, that's when the intense pain started.

Just talked to Dr Philpott  ( dr.shens replacement for me at ccf) anyway..wants me off of entyvio & start stelara. I am a yr into entyvio. J pouch seems to have healthy tissue but 5 ulcers inside & such severe diarrhea & rectal pain. Right side stomach/ pelvic pain intense. Dr thinks perhaps no j pouch anymore & go to ileostomy. Ugh..I'm going into 32 yrs of j pouching & after all of this time to loose it. I guess I've been blessed though I can look at it that way positively. Any one else have this happen?

Dang!!! 32 years?? DANG! Do you have Crohns???

U.C. 1979 j pouch surgery 1989..took 5 x to get it right.  Then dr shen diagnosed crohns 2012. With cuffitis& pouchitis. Complications with c diff & bleeding ulcers in pouch.  Fissures & rectal pain.  So I guess this old girl needs to come up with a plan. I just don't think surgery ( ileostomy) is the right thing to do. & all the surgeons at Ccf that I had repore with left..ugh!

U.C. 1979 j pouch surgery 1989..took 5 x to get it right.  Then dr shen diagnosed crohns 2012. With cuffitis& pouchitis. Complications with c diff & bleeding ulcers in pouch.  Fissures & rectal pain.  So I guess this old girl needs to come up with a plan. I just don't think surgery ( ileostomy) is the right thing to do. & all the surgeons at Ccf that I had repore with left..ugh!

In your case, and ileostomy sounds right. I have spoken with quite a few people with your situation- and they wind up getting an ileostomy. I think you will be happy with it. There are pros and cons with everything but a ileostomy will more than likely solve your problems. Give it some thought. If I were you, I would get an ileostomy. Ileostomy is way better than suffering babe.

Have you look into a bcir or a k pouch? You could Google to see if it's anything you might be interested in. There is a thread on this sight that you can post questions. The people answering actually have these continent pouch's and can answer any questions you may have. It's probably the route I would try after the j pouch. You have to find out first if you are a candidate for one. Just a suggestion. Good luck to you.

Aimee

In your case, and ileostomy sounds right. I have spoken with quite a few people with your situation- and they wind up getting an ileostomy. I think you will be happy with it. There are pros and cons with everything but a ileostomy will more than likely solve your problems. Give it some thought. If I were you, I would get an ileostomy. Ileostomy is way better than suffering babe.

Lauren, while it’s true that pouches sometimes fail and need to be removed or bypassed, it’s also important to remember that this is a major, complicated, and consequential surgery. Some may disagree, but I consider it akin to an amputation: you do it if you really have to, but you never treat is as a casual solution to a problem that hasn’t been fully addressed medically. Yes, people usually do quite well when they’ve had to give up on a J-pouch that can’t be fixed, but people usually do quite well after amputations, too.

Last edited by Scott F
@Scott F posted:

Lauren, while it’s true that pouches sometimes fail and need to be removed or bypassed, it’s also important to remember that this is a major, complicated, and consequential surgery. Some may disagree, but I consider it akin to an amputation: you do it if you really have to, but you never treat is as a casual solution to problem that hasn’t been fully addressed medically. Yes, people usually do quite well when they’ve had to give up on a J-pouch that can’t be fixed, but people usually do quite well after amputations, too.

I agree with Scott. An amputation is a good analogy. I have battled pouchitis for over 25 years and it was all worth it to keep my J Pouch. My goal is to die with the J Pouch. I made it from age 29 to age 57 with J Pouch. Just need to keep Pouching. And keep trucking:

https://m.youtube.com/watch?v=QuyaK0hGxWk

 

 

Last edited by CTBarrister
@Scott F posted:

Lauren, while it’s true that pouches sometimes fail and need to be removed or bypassed, it’s also important to remember that this is a major, complicated, and consequential surgery. Some may disagree, but I consider it akin to an amputation: you do it if you really have to, but you never treat is as a casual solution to a problem that hasn’t been fully addressed medically. Yes, people usually do quite well when they’ve had to give up on a J-pouch that can’t be fixed, but people usually do quite well after amputations, too.

That sounds right

@Scott F posted:

Lauren, while it’s true that pouches sometimes fail and need to be removed or bypassed, it’s also important to remember that this is a major, complicated, and consequential surgery. Some may disagree, but I consider it akin to an amputation: you do it if you really have to, but you never treat is as a casual solution to a problem that hasn’t been fully addressed medically. Yes, people usually do quite well when they’ve had to give up on a J-pouch that can’t be fixed, but people usually do quite well after amputations, too.

Thank-you Scott. Your comment reminded me not to be quick to give up

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