When is it time to think of surgery??

I really appreciate posters like you who share what it's like to go through surgery. It makes the prospect less scary.

I think when you do not have an acceptable quality of life and other treatments are not an option, for whatever reason (e.g. they don't work or side effects are too risky) then it is time.

I remember after i had tried 2 different biologics as well as azathioprine and been on steroids for 2 years continuously with very poor quality of life, my doctor looked me in the eye and said "You don't have to do this any more, if you don't want to". I had a consultation with a surgeon and stoma nurse and was mentally preparing for surgery, when suddenly xeljanz decided to work. That was 4.5 years ago.

I still might need surgery at some point and I'm ok with that.

My inflammation wasn't even "that" bad in the sense it was restricted to my rectum/sigmoid at that time. It was severe though in those last 15 cm or so.

Thank you 3x (and Clo). I totally agree with Poopydoop, hearing these experiences really reduces the worry about potential surgery in the future. One thing I do wonder about is how advancing older age affects the decision and outcomes of surgery.

OM that's the rough road to be rid of UC.
When you have UC the road has many potholes.
Not easy but life has been great since surgery.
I send prayers to all with UC🙏🙏🙏

Midge — I had a surgery consult with a GI specialist at UCSF (because of my diverticulitis— not my UC) and she told me I was not a candidate for a j-pouch because of my age (70). I didn’t consult with other surgeons because I didn’t think I needed it at the time. I also remember a poster here who was asking for advice for her mom who I think was in her 90s or close to it — she’d had a j-pouch for years but was ill now and having horrible incontinence issues. Ostomy surgery wasn’t an option at that point.
So there’s that. 🤷

Post Edited (FlowersGal) : 1/8/2024 12:04:50 PM (GMT-8)

I think by the time we get to our 90s, many conditions can cause bowel incontinence (including dementia), so I wouldn't necessarily let that be a deterrent for getting a j-pouch. Plus i assume surgical methods have advanced on what they were 30 years ago?

My Colorectal surgeon sometimes asks me to speak to other IBD patients that are considering surgery. They know I am just another IBD patient that's had surgery. (I've given him written permission to discuss my case with others if he feels it may help them.) I just tell them my story, answer any questions they may have, and offer to help them in any way they need both before, during or after their decision. Surprisingly some of them take me up on that offer.

I think it's a case by case basis depending on your health and your situation. So have those discussions with both your GI and you colorectal surgeon.

Huh.....

What do you all make of that? It sorta makes me feel like we have expiration dates on us.

What do they do in that situation if the patient is flaring and no drugs are working?

Don't forget anesthesiologist play a role in this, obviously in a life or death situation options are different. Anesthesia is hard on older people, any underlying conditions is another thing. Liability issues are real, drs do not want to be sued.

What I was told was j-pouch surgery not an option because of my age and prior partial colectomy. Total Colectomy/ostomy is another matter. And I think there are sorts of muscle tests that could affect the decision. And different surgeons who might say a j- pouch is an option. The dr I spoke to said no but that doesn’t mean another might say ok if you are in good physical shape. And the older we get I’m sure options change again. Just something to keep in mind. In my case I’m pretty sure I’ll end up with an ostomy at some point. If it’s not my UC meds that quit working, it’ll be diverticulitis attacks again. I’m just trying to go on as I am as long as I can.

Today I spoke to my GI, pain management team, infectious disease doctor and Colorectal surgeon... And the GI asked if I ever gave the thought of being reconnected a moment--if I wished for something different. My CRS didn't say a word but I could feel the tension on the phone. (My CRS has told me to keep the ostomy regardless of any one else's pressure to be reconnected. He said he's seen too many issues when complex cases decide to reconnect.)

I laughed like a loon and told my GI... Heck no. I loved the improvement on the quality of life, my fistulas are never going to heal and this makes the most sense. I could feel the tension deflate. I don't know what caused that question.... But at the end of the conversation... My colorectal Surgeon said that there's only a handful of anesthesiologist that are even willing to consider knocking me out for my scopes and for this ablation process. He has to go thru the list and explain it's the long surgeries that impact me.... (Drum roll please) But with my age now it's getting a little more challenging. (I'm going in for a knee nerve block in preparation for ablation of my knee nerves so we can avoid total knee replacements.) So I did ask that question... What if I have an emergency... And he said that with a life threatening emergency they operate as long as you have a better chance of living than dying.... And even then.. if you are obstructed and in terrible pain and that's the only option left... They operate... But with age your chances of surviving go down. That's why he's advised me that I have to leave my ostomy alone.

So it makes sense but gosh, I hate seeing our options becoming more limited.

Clo

Say a prayer everyone. I am unable to stand up or walk because my knees are bone on bone... And so far we haven't found an anesthesiologist that'll ok the total knee replacement..... If this doesn't work it's motorized wheel chair for me.... And for some reason that thought bothers me so much more than the thought of having an ostomy ever did.... Sigh. And the anesthesiologist did say with an elective surgery like TKR (unless it's due to bone infections) they don't think they can find anyone willing to take the case. 😣

Post Edited (clo2014) : 1/17/2024 6:57:55 PM (GMT-8)

Hey Champ and everyone!
Just to add my 2 cents about when to go for surgery: When your routine colonoscopy shows ANY signs of dysplasia or irregular cells.
I'd had the odd cancer cell show up on and off for a couple of years before a narrowing of my colon prevented the GI from getting in there with the regular scope or an upper endoscopy scope, finally resorting to a pediatric scope. At that point he stopped being polite (he'd suggested it a number of times) and TOLD me I needed to talk to a surgeon. 6 weeks later my colon was removed, a J pouch built, and stage 3 cancer was found.
It seems that my particular cancer (goblet cell) grows within the walls of organs, so even though I'd been having scopings every 6 months for a few years, nothing had showed except the one or two odd cells And I was feeling OK, so I ignored the possibility that something bad was going on.
BUT, when I was first diagnosed in the mid-1980s, the thinking was that if you were in a symptomatic remission, that was good enough. So I don't blame the docs.
I don't mean to scare anyone, but if my story can move one other person to go and explore the idea of surgery, I'll be happy.
The cancer was beat, and then 4 1/2 years later it came back. It responded to chemo very well, but I'm on a maintenance dose for life. (My surgeon has had a few patients on this regimen for 15+ years!) It's not bad; I can deal with it.
I was almost 62 when the first of my 2 surgeries took place. My GI put stock in the idea that physiological age and chronological age are not always the same, and I seemed plenty young to him. I'm grateful! I'm enjoying life, making music (working p/t making music), gardening, kayaking....so far, so good!