Hi All,
Wondered if anyone had any thoughts/experience on this.
Crohns being a many splendid thing, I guess that I should share my experience and the conundrum it poses me. I'm fifties, 30+ year Crohnie and, TBH, in that time I have been relatively asymptomatic, only experiencing mild Crohns symptoms for long periods. Unfortunately, I have big problems with fibrotic scarring and usually the first sign I get of problems is obstruction.
I've now had 4 resections and my surgeon says I don't have another one in me, I've pretty much run out of bowel and I must do everything I can to avoid problems in future - :shifty: ...not that it's my fault or nuffink.
Anyway in that spirit, I have to choose how to try and 'remain' in remission. I took azathioprine for ~ 8-9 years before my last surgery (although stopped before major problems started on advice) but I can't be 100% that it was doing it's job...I feel my bowel became too damaged too quickly for the Crohns not to have been on slow burn through that time. In addition, I spent around 9 months whilst fighting the inevitability of surgery on full doses of budesonide and azathioprine and it didn't do an awful lot for my calprotection score in that time.
After the 9 months, I had a brief stint on infliximab which I feel did cut the inflammation but it won't do anything for fibrotic scarring and so it was surgery for me.
My inclination now is to try a biologic (probably humira) long term, but it niggles that there may be big side effects and I just wonder if it is overkill since I tend to be asymptomatic most of the time. However, having been told that I'm in the last chance saloon, I feel that I have to give it a try. Plus I'm not sure that big doses of azathioprine won't cause problems long term either.
This wasn't supposed to happen. Received wisdom when I was younger was that the Crohns would burn itself out.
As with all things Crohns, there's no right or wrong answer but I'd really appreciate any input...even if it is only to say, hypothetically, what you would do in my situation.
Thanks for listening. :thumleft:
Wondered if anyone had any thoughts/experience on this.
Crohns being a many splendid thing, I guess that I should share my experience and the conundrum it poses me. I'm fifties, 30+ year Crohnie and, TBH, in that time I have been relatively asymptomatic, only experiencing mild Crohns symptoms for long periods. Unfortunately, I have big problems with fibrotic scarring and usually the first sign I get of problems is obstruction.
I've now had 4 resections and my surgeon says I don't have another one in me, I've pretty much run out of bowel and I must do everything I can to avoid problems in future - :shifty: ...not that it's my fault or nuffink.
Anyway in that spirit, I have to choose how to try and 'remain' in remission. I took azathioprine for ~ 8-9 years before my last surgery (although stopped before major problems started on advice) but I can't be 100% that it was doing it's job...I feel my bowel became too damaged too quickly for the Crohns not to have been on slow burn through that time. In addition, I spent around 9 months whilst fighting the inevitability of surgery on full doses of budesonide and azathioprine and it didn't do an awful lot for my calprotection score in that time.
After the 9 months, I had a brief stint on infliximab which I feel did cut the inflammation but it won't do anything for fibrotic scarring and so it was surgery for me.
My inclination now is to try a biologic (probably humira) long term, but it niggles that there may be big side effects and I just wonder if it is overkill since I tend to be asymptomatic most of the time. However, having been told that I'm in the last chance saloon, I feel that I have to give it a try. Plus I'm not sure that big doses of azathioprine won't cause problems long term either.
This wasn't supposed to happen. Received wisdom when I was younger was that the Crohns would burn itself out.
As with all things Crohns, there's no right or wrong answer but I'd really appreciate any input...even if it is only to say, hypothetically, what you would do in my situation.
Thanks for listening. :thumleft: