Hi Iv had my pouch for almost 29 years. I had UC for only 14 months. Iv had pouchitis a few times and a blockage but mainly ok. I love my pouch. 

I was on remicade for 5 years which cleared up the inflammation but last year started with horendous pain in my joints so was hospitalised and they have now stopped the remicade and put me on Sulfazalazine Hydroxychoroquine and 6 mercaptapurine. 

I’m very well apart from terrible thrush which is the drugs and my immune system being suppressed. Has anyone experienced this? 

Also I live in the uk.

well done to all pouch people we are heroes. 

Love  to alll

Linzalisha xxx

My surgeon who did my surgery moved to America- he is MR TV TAYLOR. Maybe you may have heard of him. He was amazing. 

I I was  on Al  sulfadine with prednisone for the first year after diagnosis of UC ....then only alsulfadine for about 18 years until pouch surgery.  After surgery only iron and B 12.   Have not heard of your surgeon, only familiar with those at Johns Hopkins, where I had mine done.  Perhaps Taylor went to Mt Sinai in NYC, which is an excellent place for j pouch and I did  consider it.  Since I live in Baltimore area, chose Hopkins.  Yes, I guess we are hero’s along with all who undergo life style changing surgeries......Trish

Hi Trish 

Thanks for reply. I hope you keep well 

forgot to mention I’m on monthly B12 injections. I’m going for one this afternoon. 

Take good care 

Linzalisha ❤️❤️

I am 63 and have had my pouch 25 years and it is starting to have severe problems. RVFistulas, absesses, some incontinence...

I had my Jpouch done in 1983 at Mt Sinai in NYC. I have had several mild bouts of pouchitis. I suffered from anemia but after an iron infusion 3 years ago I’ve been fine. Now I am having very bad rectal pain. Maybe need dilation?  It is very uncomfortable. Anyone else with this problem?

to Clouseau....so sorry to hear. hope u continue to see good treatment. Trish

to Andu......rectal dilation is common....scar tissue forms at fusion site.  Can be done as out patient.  Good luck. Trish

 T