Anyone have experience with hysterectomy surgery as an ostomate?

[Blueheron]

Hello everyone! Eleven years ago, I had a total proctocolectomy with ileostomy surgery due to ulcerative colitis. Since then, my ostomy has functioned beautifully with very few complications or impacts to my life. I can eat just about anything, am very active, have never had even a single blockage and have had very few appliance problems or leaks.

A few years ago, I was experiencing some pronounced pelvic pain and crazy-heavy menstrual periods, It was determined that I had a 4 cm fibroid on my uterus, as well as numerous much smaller ones which were causing these symptoms. Back then, I did have a couple small ones removed from my inner uterine lining, but the biggest fibroid was deep within the uterine wall so nothing could be done with that one. They said hysterectomy surgery was the only option to treat it. They also said hysterectomy surgery would be much more complex due to my ostomy. Because of that, I held off on pursuing surgery and was put on continuous birth control pills so I don't get periods. This resolved the heavy bleeding and ended any concerns with being anemic. I continued to monitor the situation, but things were pretty well controlled and I didn't have too much pain.

Fast forward a few years and the big fibroid has grown more (now the size of an orange) and now I have even more small ones. For whatever reason, they have all become way more painful (maybe my enlarged uterus is pushing up against scar tissue?) I have again been presented with the option of getting a hysterectomy (but keeping the ovaries).

I have been waffling over this all summer and am having a really hard time making a decision on whether or not to pursue this surgery. If I did not have an ostomy, I would have my uterus removed in a heartbeat. However, there is so much more to think about with my ostomy.

I am particularly concerned that hysterectomy surgery will mess up my well-functioning ostomy. I worry that I will develop scar tissue after the surgery and may then start getting blockages or have to worry about what I eat (my abdomen has only been opened up once in life-- during my original ileostomy surgery).

The surgeon would plan to go through my midline incision (they said minimally invasive surgery isn't an option for me). Though this shouldn't impact the area between my incision and stoma, I still worry that something might happen in that spot and suddenly my base plate won't adhere so well. I am super active and work as a park ranger. I also do a bunch of outdoor sports like hiking, doing long wilderness backpacking trips, skiing and snowboarding, and rock climbing. My well-adhering skin barrier baseplate is so helpful in doing those things.

This is also a tough decision because the surgery would be somewhat elective. The fibroids aren't causing any life-threatening issues... just pain. Plus fibroids sometimes shrink after menopause (I am 48). However, sometimes they don't, and if they do shrink, it can still take a long time for that to happen. The possibility of ending this pain now with surgery is very appealing.

I did consult my colorectal surgeon and he thought the benefits of pain relief would be worth the risks... but of course the decision is up to me. He would not be able to assist with the surgery, but recommended that a general surgeon be present along with the gynecological surgeon if I decide to pursue the operation.

Does anyone have experience with having a hysterectomy well AFTER ostomy surgery? I would be very interested in hearing your stories and more about any impacts it had to your ostomy.

Thank you!!!

[Mara]

Yes, me!!
Had my ileostomy at about 17 and my hysterectomy about forty years or so later. I don't remember well as it was some time ago...but there was a surgeon who removed adhesions. No problem at all afterwards - they also used the previous incision to open me up - well, part of it at least....
Hope that helps and best of luck to you!!

[Ornery]

I had a vaginal hysterectomy many years ago for fibroids but this was long before my colostomy. That said, I had abdominal surgery 10 weeks ago and it has not interfered with how my flange fits. Actually, I had 2 surgeries within a week due to complications. The first was laparoscopic and the second was an open incision. The midline incision was 1 inch from my stoma but my abdomen is flat and I didn't end up with any dips or valleys as the incision healed up nicely. But is was difficult initially to keep the flange on with the surgical dressing in place. First surgery consisted of a colectomy to remove cecum and ascending colon with connection of ileum to part of transverse colon. During the second which was the open one the small bowel was taken out of the abdomen and inspected for "leaks" along with removal of a large hematoma from the omentum.

The first 6 weeks were very painful and I had digestive issues. But so far, knock on wood, there doesn't seem to be any signs of adhesions but of course they can develop over time.

I know my surgery is vastly different from what you would have done . But I'm just relating my experience with abdominal surgery as it might impact an ostomy. I can well understand why you would consider surgery for the pain from fibroids and hope it goes well if you go through with it.

[Mjc]

Yes me. My history is almost the same as yours. I had a complete hysterectomy 11 years after a total proctolectomy (sp?) . It went OK. I had ovarian cycts etc.... not sure I needed a total - but it was the military drs and they made the decision. My advice - get a thorough explanation of what is removed - why and how the rest of your internal organs are arranged and impacted. Estrogen was and still is a must (I was only 38 at the time.) Use an estrogen patch - it bypasses your liver and goes directly into your blood stream. Good luck. You appear to be strong and active and life without pain is a good thing.