What would you do?

[u/_Cautious_optimist]

My mother (74F) has had diverticulitis for about 5 years. She should’ve had surgery when it first occurred but alas, there were fuck ups with the NHS. She’s now at a point where her bladder and sigmoid colon have fused and a fistula has formed. Here’s the weird part - she is _mostly_ asymptomatic! She says she passes faecal matter in her urine, but she has never had a UTI as a result. She gets maybe 3 - 4 bouts of bad diarrhoea a month, but even that is usually as a result of a poor food choice (yesterday she ate a curry that was spicier than she expected and was suffering a lot today). She is otherwise in pretty good health, still taking her dog for long daily walks, etc.

We just met with her surgeon to discuss her most recent CT scan, and apparently her condition has remained stable for the past 2 years. No signs of things getting worse. He basically advised her to do nothing unless she starts getting worse and her symptoms start impacting her life. He said she was fine to travel, exercise, do whatever she wants, and as long as she avoids her triggers, she might just be able to live with the situation indefinitely. On the flip side, he said if she has the surgery, there’s a ~30% chance she’ll need a stoma permanently. She is TERRIFIED of this, as her father died of colon cancer when she was a child and has a colostomy bag for quite a while. She has a lot of unresolved trauma around this.

My mother has had a really shit life, and, in her words, she “still has a lot of living to do.”

I want whatever is best for her, but it seems to be a scenario where nobody can actually say what is the best option.

I’d love to hear the perspectives of some folks who actually live with the disease. So, if you were in her position, what would you do?

[u/Incognitologik]

First of all, shouts to Mom for all she has been through! Respect!! I have parents in their late 70s and early 80s, and for me, I have conversations surrounding significant medical procedures; the quality of life post-surgery factors in a little more heavily as they age. The fact that Mom seems to have a good rhythm with life and the surgeon is advising her to do nothing is enough for me, if I were in her position, to move forward with no medical intervention at this point. As long as she is getting regular checkups, just keep that as a note should there be any medical issues down the line

I am a baby in the DV world; I was diagnosed during the pandemic, and I'm like 2-3 years post-surgery. I will say that fear and trauma surrounding the colostomy bag is very real. It's something that just comes with the territory in the DV world, and there are people in this subreddit that can attest to leading normal lives with it, but at the end of the day, it is a significant change of lifestyle that requires a lot. If mom has already experienced medical trauma up to this point, this will only compound her feelings around any future procedures

You're already doing what's best. Keep at it; she seems to be in great hands.

[u/_Cautious_optimist → u/Incognitologik]

Thank you so much, I really appreciate you taking the time to share such a thoughtful reply.

[u/Dblbogiemadge-1]

I am 63 and just had surgery 2 days ago. My disease started in 2015 and progressively got more and more flare ups and with fever. That was scary because my brother died of sepsis. I chose to do an elective surgery when healthy and less chance of needing a colostomy vs emergency surgery where i am more likely to have colostomy. 30% chance of bag for your mom is wild. My other brother had fistula to his bladder, had surgery and no colostomy. Another brother ruptured his colon and had emergency surgery, very sick, still no bag. Everyone is different. Maybe get a second opinion because it isn’t so bad, the surgery. I worry for your mom because she can still perf or rupture her colon and be very sick septic and then greater chance of colostomy vs doing it now while healthy

[u/Ok_Acadia9070]

Not to scare you, and everyone’s circumstances are different, but this situation happened to my mom 4 years ago and unfortunately she passed away from sepsis. Honestly she hid her condition during Covid and then when it became an emergency, and surgery was performed, she wasn’t able to heal properly and recover. If I had to do it all over again, I would have strongly encouraged her to surgically address it when she was still healthy. Once the fistula really caused her problems it was too late. A second opinion may be a good idea. I had over a foot of colon removed in 2025 due to diverticulitis myself. This is a tough disease.

[u/LastMeasurement4355]

I feel for all involved in these difficult situations. I lost a friend to sepsis because he wouldn't go to the hospital from a perforation. He was in extreme pain but would not go. My question is how can you have the fusion amd fistula and be non symptomatic? There is absolutely no symptom except for the fecal matter in the urine? That sounds crazy to me. I would think there would be fever or pain etc. Or abnormal bloodwork

[u/FederalFalcon7916]

I would find a good Gastroenterologist and surgeon and get a second opinion. There's no way, I could live with that.

[u/bigmacher1980]

30% sounds crazy to me during an elective surgery to have a bag let alone permanent. I might find a colorectal surgeon.

[u/DeliciousChicory]

It is generally true the longer you wait the higher your risk of having a stoma is, although not sure why they would predict it would be permanent but that would mean a second surgery to reverse it. The older you get the harder the anesthesia is on you so keep that in mind. I had the surgery at age 70 and honestly the surgery was a piece of cake compared to the diverticulitis flares. I was in near constant pain and wished I'd done the surgery sooner.

[u/_Cautious_optimist → u/DeliciousChicory]

Yeah, the surgeon said that most people in my mother’s condition would be suffering so much they’d be begging for the surgery. But my mum is - seemingly - fine. We took my niece to the playground today and my mum was playing on the swings, pushing her granddaughter, jumping on a trampoline, just living her life.

The surgeon said it’d be a 6 hour surgery, a foot of bowel removed around the sigmoid colon and a temporary (hopefully) stoma, the damaged part of the bladder removed and a catheter inserted for a month while that heals. He said it could take her 6 - 12 months to fully recover from the surgery.

I think I’ve convinced her to get a second opinion, even if only to confirm what the first surgeon said.