Surgery objections - can you counter these?

I totally get it. When I was referred out by my GI to the experts at the university teaching hospital I was 15 years in. They talked about colectomy and I said no way. I was mostly controlled with the Asacol, canasa and uceris foam for the occasional flare. I was willing to get scoped 2-3 times per year for surveillance. I had no idea because my original GI never told me that inflammation leads to dysplasia which leads to cancer over time. I never got to the biologics because I could control the flareups with meds. So yours seems more of a lifestyle issue than CRC risk at the moment. I do remember the early days of the uncontrolled flare ups and how miserable I was. Unfortunately I had no idea if the devastating consequences of this disease. When we are feeling good we get a false sense of security, that the disease is behind us, only to be reminded when the next flare occurs and wondering what we did to cause it.
I wish I paid more attention to forums like this for info, but my nature and I suspect alot if folks is to bury the problem and look the other way especially if we are feeling good.
I am happy to share any and all information with anyone because if I can help 1 person, it’s worth it to participate.

You are being very wise to think this through very deliberately and weighing your options before submitting to any life altering surgery.

While I have no more colon and therefore no UC of the the colon and therefore a CRC risk of almost zero, I know the jpouch isn’t going to be perfect, and I have traded one set of problems for another.

In closing, my only piece of advice I feel strongly about: Avoid a permanent bag at all costs.

My takedown surgery and jpouch use will happen on May 7th.
Don’t get me wrong, I am excited to be reconnected and get back to some level of normalcy.
What god gave us cannot be replicated. The jpouch will have its own set of issues. Do you have one? Please I would love to hear how your doing and how you adjusted

New577 said...
In closing, my only piece of advice I feel strongly about: Avoid a permanent bag at all costs.

Just curious, why do you say this?

I hope that never happens. I believe based on some google searches that the big three, hollister, convatech and coloplast might provide assistance should such an event occur and you cannot afford to pay out of pocket.
There are a lot of resources out there and my hope is you will never need surgery. Holding good thoughts for you.

Re bag supplies- I feel similarly about medication. Any break in the supply chain would mean I get very sick, very quickly.

It's pretty easy to stockpile supplies. I had a load of stuff when I had a temp ostomy. I also used a lot of different types. I was really experimenting and giving all of the various products a fair try. Realistically, with my end ileo, I was quite happy with the function and with the supplies available. I could take my pick and wear many different brands and styles and they all worked well.

Funny how stressed people who have never even bought a supply are about supplies they will most likely never need... In my opinion, being dependent on supplies is no worse than being dependent on meds, or therapy, or income really 😁 dependencies are awful. Responsibilities are pretty bad too! Food dependency is the worst. I am so sick of having to buy, cook, and eat all of the time. Gosh, and if there's some apocalypse, we will all be toothless and without toilet paper, without clean drinking water, without internet... Can you imagine?

...and air... what a pain to breathe all the time ... 😂😁

I don't chime in too often these days, but I needed to, here. Sorry this is long.
I was against surgery. I developed UC in my late 20s, had a few bad flares (hospitalized for them) and then learned to recognize signs and start meds sooner when I started flaring, so lived a pretty good quality life. Because of an adenoma found in my early 30s, I was scoped annually.
There was often a place of minor inflammation about 16-18 inches up, right where the rectal meds stopped reaching. But it didn't bother my quality of life. And along the way I did traditional meds and tried alternatives (and I still swear by probiotics!)
In my late 50s, a random dysplastic cell was found but the doc couldn't find anything 6 months later. But then we decided it would be safer to be scoped every 6 months. One time, he found a stricture which had not been present and we hoped, assumed, it was scar tissue from that "16 inch" place.
So I saw a surgeon and decided to have the colon removed. It seems a dramatic thing to do; I was feeling fine. Colon was removed and a J Pouch formed in one surgery.
At my 2 week post-op appointment the surgeon told me he'd found cancer. Stage 3 - it was also in 6 lymph nodes of the 44 he removed. The cancer was behind the mucosal layer which is why the scopes never found it.
He told me that when I saw the oncologist, to accept the longest, biggest amount of chemo offered. So I did heavy chemo for 6 months. I had the temporary ileostomy until a month after that, and then my reversal.

Surgery was 3 years ago. My doctors are hopeful the cancer is really gone. I have CT scans; they were every 6 months and now are only annual. I see the surgeon and I see the oncologist. I have numbness and tingling in my hands and feet permanently from the chemo. I take meds to help that.
I try not to beat myself up about this, but I do wish I had done the surgery at least a decade earlier and avoided a couple of years of cancer recovery, and not need to use a cane when hiking because of the numbness in my feet, be more accurate in typing, feel more competent making music as a classically trained organist (need hands and feet, both).
Life with a J pouch? Kind of like life with UC when 7/8 way into remission. Not "perfect" bathroom-wise, but not bad at all. As Champ said, you learn to more or less control bathroom trips by meal choices. I use immodium as needed. Not a big deal at all. I don't need to use the bathroom at night unless I've had something like chili for dinner, too much, and too late. (If I've had a few glasses of wine I do get up to pee - lol!)
We all make the best decisions we can, hopefully with recommendations of good doctors.

Song and 577 you both are power of examples to many. You both were at a place I never was at but I can totally relate to your stories. My Gastro told me often that for every 10 yrs of UC your cancer chances increase.Now that didn't scare me much especially since there's very little cancer on my moms or dads side of families. But my last colonoscopy wasn't good. Gastro said it was one of the worst scarred colons he had seen. I was in and out of flares. It was then I got nervous about cancer and the anxiety filled days I was having. When Gastro recommended Remi or Humira I told him I was ready for surgery. No more hoping Meds would fix me. Life is really good now. More I eat the more I have BMs. 1-2-3-4 per day. Don't eat too late at night. Only issue is 2nd incisional hernia since surgery but that's bc I'm a dumb dumb who doesn't act 62yo. Whenever I decide to have this hernia fixed that will be another chapter to my story. Love you guys and I hope u all stay well. God bless

Interestingly, my mother in law had the jpouch 16 years ago as a one step, at age 69.
She eats and drinks everything and has no issues whatsoever even at age 86!

It’s turns out I had a significant co-morbidity that the doctors didn’t realize could cause a issue, but it did and all my post surgery issues revolve around this other problem.
You have to figure age into your equation because at age 63, I am not old, but getting older.
My thought process at the moment is that I cannot imagine having this surgery later on in life. You just don’t know what your health will look like and as you reiterated, options could be limited.

Songlady thank you for sharing. Sorry to hear you've been through chemo, but I'm glad you're doing OK.

It's been really helpful to hear about your experience and that of others, as it reminds me to think about my future, which is part of getting my head round the possibility of having my bowel removed one day.

Van Jordan, you don't have an osotmy, whereas nssg has lived with one.

You can easily google ostomy supplies and find hundreds, if not thousands of suppliers. They offer free samples, home delivery, free delivery etc. There is no evidence that there will ever be a shortage.

Why are you so paranoid about supplies running out when they are abundant, and you've made it clear so many times you don't want an ostomy?
A lot of fears are irrational. Try not to project scenarios that may never occur. There is enough real stuff to be concerned about.

Stop piling on me please. We're allowed to have disagreements and still be civil. I'm not talking about the end of the world, but travel or being in remote places. Before my UC I traveled the world and lived all over. Medical care was not the same everywhere.

I don't want an ostomy, but it may be in the cards for me down the road, so I am always learning. On the ostomy forums (which are less hostile and defensive than here), there are a lot of stories of people who travel and have had incidents of supplies not being accessible for various reasons. One guy had his bag stolen from his hostel with all his stuff in it, and he wrote in detail how he had to improvise a plastic bag. Then he had to find a hospital in a developing country that could help him and it took a couple of days.

These are realities that I want to talk about. I'm not trying to trash ostomies. I want the full picture. All the marketing around ostomies shows people windsailing and doing everything that normal people do, but that's not always true. This thread is about surgery objections.