I had my j-pouch surgery 5 years ago and have had great success with it. In January of this year though, I started having some menstural bleeding that has never stopped. I have been regularly seeing my gynecologist to try to get this to stop. I got very anemic (5.5 hemoglobin) in April and was put in the hospital for an emergency D/C. My Gynecologist and I are both agreed that we want to avoid abdominal surgery so as not to possibly damage the J-Pouch. I also told her that my CR surgeon said that all abdominal surgery in the future needs to have a CR surgeon present. After the D/C My GYN gave me a shot of Deproprovera (or something like that) to stop the bleeding and the plan was to repeat this shot for a year or so until I would be through menopause. The shot stopped the bleeding for maybe a week and then it started up again. The Dr. then put me on Agystin to stop the bleeding. For awhile it would stop while I was taking it but start again as soon as I stopped. Now I have been on the Agystin since the end of June and it hasn't stopped the bleeding at all. I am tired of dealing with this and honestly just plain tired all the time. I have started having some cramping with this as well. I have several questions. First of all, should I have a CR surgeon present if I have a hysterectomy? The surgeon who did my J-pouch has retired. I go to a new surgeon now at OSU and my GYN is local. Also, can you have a laproscopic hysterectomy with a J-Pouch? Should I just try to wait this out? Are there any other options I may not know of? Thanks so much for any insight you may have.

My hysterectomy was done vaginally. Granted it was before jpouch, but it might be an option for you. Good luck
Shannon

Has your GYN said anything about lasering the lining of the uterus? There is a name for the procedure but I cannot think of it sorry

My Jpouch surgeries were done in 2002. I had my second child via c-section in 2004. After that birth, my periods became heavier. Over the years, they became worse - longer, passed clots. I brought it up to my GYN, but he didn't think it was a problem since I had no symptoms (anemia, specifically). I usually spent two weeks out of the month exhausted but figured it was just due to motherhood. Anywho in 2009, my periods just got worse - heavier bleeding, longer day (7-9) and passed larger clothes (silver dollar sized). I became symptomatic with anemia. My hemoglobin was dropping monthly between 7-10 (at 7, you're usually transfused). I didn't want anymore children and opted for my new GYN's idea - an endometrial ablation. The procedure was called, Novasure. It was an easy outpatient surgery. You can Google it. The procedure is supposed to lessen/lighten your periods and sometimes they completely abate. I am lucky - no more periods! I highly recommend it. I had cramping for a few hours after the procedure and back in full mommy duty the very next morning.

Ask about your options. Might be easier than a hysterectomy, or at least something to help you along until you feel that you need/want a hysterectomy.

Good luck!

I had a discussion with my gynocologist last night, and she said that a hysterectomy was NOT one of my options unless my female issues became critical because of the risk of damage to the pouch. I even asked if she would do it if we could have a C/R surgeon present, and she said no. So my options are an endometrial ablation or a Mirena IUD because they present the least danger to the pouch. I asked my GI today, and he emphatically recommended the ablation and agreed with my gyno about the hysterectomy.

I know every situation is unique, and given your blood loss that might tip the scales, but be sure to realize that your options may be limited.

Sallie

I was having major bleeding issues too and also had the ablation along with a D&C. I no longer bleed either. My surgeon said that with the j-pouch surgeries I have had, scar tissue tends to stick everything together in your abdomen and the uterus especially is just kinda fused, along with your pouch, to your scars. That's why it is so dangerous to the pouch to do a hysterectomy. It's scary to think we all did this procedure without knowing the long term consequences to other parts of our bodies, but the j-pouch surgery basically saved my life so even if I had known, I'd have done it.