Trouble after take down

For the first three months following the j pouch procedure, I questioned why I had the surgery. I too had managed very well with the ileostomy but didn't think I wanted to live the rest of my life with a bag attached to my gut. All I can tell you is that there was a marked change for me at 4 months and another positive change at 6 months (which is where I am now). It may well just be time until the pouch learns to act more like the colon we are asking of it. (I too went on long term disability but have returned to work, to cycling, to running, intimate relations, eating pretty normally...hopefully I've not just jinxed myself! Good luck to you.

I am a 11 months past an emergency takedown. I wish it wasn't so my pouch could heal but it is what it is. Anyways I am still having problems. I know now what it feels like to have it work properly because I had a short week where it did work properly. My sleep is better but I still have bad nights. One thing that bugs me is the all over pain I experience. No one has been able to explain that. If I knew I would have that I would have just suffered with what I had. Every bone in my body is so stiff it takes hours in the morning to get enough get up and go to get to work which absolutely wears me out. I certainly never had that before. No pain and I slept well before surgery... All that is gone now. Sorry to hijack your thread. But I bet I am extreme case. In the beginning where u are at it was worse. It has gotten better and I am sure it will get better for you. It's tough at first. You second guess why you did it. I still do.

Mystic, you should talk to your surgeon or primary doctor about a referal to a rheumatologist. Joint pain and stiffness that does not resolve after 3 months (particularly if in the low back/upper buttocks and most pronounced in the morning) may be indicative of enteropathic arthritis. There is treatment. When I am in a flare, the air feels like molasses and just walking across the room is a struggle.

Jan

Jan... I have an appointment with my surgeon in a week.
Ya... My back and hips hurt so bad toward the end of the night I have to get up. My hips actually burn... It's an intense burning. So I move to my back and right at the tail bone the pain starts to get bad. So I get up and just hurt all over. Sometimes even the back of my hands hurt! Unreal.
Some days are worse than others. I lost fifty pounds. Only gained 15 back. I couldn't afford to lose that much. I was only 175 to start... I am 145 now. I figure the weight loss has had something to do with it.
Richard.

Thanks JHendrix, I appreciate your support.

I had my takedown 6/4/14; eight weeks later I went back to work, made three weeks then had a bad blockage and spent a week in the hospital. It’s been pretty good since then, only had one more blockage but handled it at home. I’ve been going to the bathroom between 13 to 20 times a day. The past week it’s been about 16 times (+ or -) a day. I take the opium tinc (15 drops), loperamide (2), and lomotil (2) every 6 hours. I get up 2 to 4 times a night and it seems I go more when I’m active like at work, when I relax after supper I slow down. My biggest problem is GAS GAS GAS and burning butt!!!! Some days I take 8-10 GASX but I wonder if it helps any. I try to help the burn with gold bond powder, corn starch powder, calmoseptine or moisture barrier w/antifungal, but the burning is pretty bad most of the time. It’s been 5 months and I feel good most of the time, except the gas & burning, but I hope it will start to get better. I’ve also been cold all the time, I swear my colon was my internal heater but my wife says I’m crazy, I’m going to ask my Dr at my next appointment in January, I’ll probably be wearing two or three layers of clothes then.

Jeff