I just had step 1 of 2 surgery done to remove colon and create J pouch on June 8. I just went for my follow up appt today and found out that they found endometriosis and it involved the wall and serosa of the intestine. My C/R surgeon wants me to see a GYN to figure out what they will want to do before the step 2 surgery in August. That way he'll know ahead of time if he needs to adjust the surgery so they can also do something if needed. This scares me! I don't want a hysterectomy! But I'm also scared it we leave the endometriosis that it will affect my new J pouch. Does anybody have experience with this? I wasn't even aware anything was going on with my uterus health until this - no symptoms. Has anybody had success with hormonal therapies or uterine ablation? Any advice? I'm scared this is going to screw up my chances for a successful J pouch and I'll end up on a permanent ostomy.
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I also have endometriosis and am currently on hormone treatment but wasnt diagnosed until after my J pouch was formed. I needed surgery to remove an endometrial cyst, ovary and tube a couple of years after my J pouch was formed and was very concerned I might loose my pouch. However all went well. With regards to my J pouch function being effected by endometriosis its hard to know as I have chronic pouchitis. Seeing a good gynaecologist is probably the key to getting sound advice. Good luck!
Hi rfrost1909
When I had my colon removed four years ago they found endometriosis. I had been having severe pain for years and the only thing that helped was being on the birth control pill. When my Surgeon realized I had endometriosis he said he wants me to have a hysterectomy when he goes in to do the jpouch surgery because he does not want to have to go back in again later. Said he has had to do that with other patients and some lost their pouch as a result. I opted to follow my Surgeons advice and I had the hysterectomy. Mind you I am in my fifties and I was tired of having the pain associated with my cycle. My j pouch has been a wonderful success so far! Endometriosis appears to be gone now.
When I had my colon removed four years ago they found endometriosis. I had been having severe pain for years and the only thing that helped was being on the birth control pill. When my Surgeon realized I had endometriosis he said he wants me to have a hysterectomy when he goes in to do the jpouch surgery because he does not want to have to go back in again later. Said he has had to do that with other patients and some lost their pouch as a result. I opted to follow my Surgeons advice and I had the hysterectomy. Mind you I am in my fifties and I was tired of having the pain associated with my cycle. My j pouch has been a wonderful success so far! Endometriosis appears to be gone now.
Thanks for the replies. I really don't want a hysterectomy because I am only 39 and I already have osteopenia from all the prednisone usage, so I'm afraid of even more bone loss, especially this young. But I don't want to risk the j pouch by having to have surgery down the road either. I guess I'll see what the gyn doc thinks.