Hi loopme I wish I was one of the ones that could answer “ I love my j pouch “ unfortunately I have had issues since my take down last August. But many on this site have had positive results with no issues what so ever .
I was hospitalized at St Joes for 4 weeks before my operation went in thru the ER . I wanted to try everything and have no regrets before I went under the knife . For the most part I believe a big chunk of folks are happy with their pouch .. but there are also ones like myself that now have more issues then before....
You mentioned your husband is on xeljanz has be tried humira ? My flare ups used to last a year before they subsided . This last one was my worst but I was under a great deal of stress losing my mom so my body reacted differently then all the previous flare ups since 1993.
I would never recommend surgery unless his quality of life was so poor and that was the only choice....
The last thing I want to do is discourage your husband but research as much as you can then see what the doctors advise in the hospital.
Please keep us posted
Oh my goodness! I’m so sorry to hear you haven’t found relief yet. Do you have to take any other medication now to help with the excessive bathroom trips?
Unfortunately I believe he is definitely at the end of the rope for medications. Nothing has worked; entivyo, remicade, xeljanz.
I really should update the signature to reflect he’s stopped with the xeljanz since earlier in the week. It’s been an up and down week with no drugs. It’s strange. Cramping is something he’s never had before, so that’s new, but the frequency is lessening (some days), and the exhaustion is unreal. Could be a mixture of dehydration/hunger though. Other way, not good and he’s just done with it. I’m really hoping that being he’s still on the younger side (34), he could bounce back okay??
But you’re right, surgery isn’t a cure. It’s just
opening a new door. Thanks for sharing your story and giving me some insight to the very real experience it may not be all roses afterward. I really wish other methods or meds would have worked out too.
Alas, fingers crossed right?
DH dx’d left-sided UC: October 2015, severe flare ups since October 2018
Tried: pentasa, entivyo | remicade + methotrexate + hydrocortisone enema + 40mg pred
Current: xeljanz (loading phase)