Surgery objections - can you counter these?

I'm trying to get to the point where I've made peace with the reality that eventually I'm likely to have surgery. I've avoided it about 3 times in the past 6 or 7 years now, but I think the day is coming closer (last bullet dodged March 2020).

Here are some of the doubts in my mind:

- I don't like the idea of being permanently underhydrated (because water is absorbed in the bowel). Once you've had surgery do you have problems caused by always being slightly dehydrated?

- I don't like the idea of having Barbie bum (but I know there are other options like a J-pouch). For anyone who has had their anus stitched up, does it feel weird? In my mind it's a bit like having an eye stitched up. I can't imagine the feeling of not being able to open it ever again!

- Scientists are only just beginning to understand the importance gut flora plays in overall health and immunity. What happens when you have no gut flora because you have no colon?

- I feel that having my colon removed would remove the site of attack, but I'd still have an autoimmune disease, and wouldn't be given any treatment for it. Although Humira hasn't always kept me in remission it did get rid of the fatigue I always had, even when I was in remission. I fear the fatigue coming back, but not being allowed to go back onto Humira, because I have no bowel.

Can anyone who has had surgery dispel, or confirm any of these fears for me?

I had my colon removed and I got arthritis instead. I was put on Azathioprine again. You're right when you say that only the site of the attack is removed but not your autoimmune disease. I've been suffering since j-pouch surgery but I'm also not OK with an ostomy.

FlowersGal said...
Haven’t had surgery yet but may also be facing it in the future — not due to my UC at the moment but because of repeated diverticulitis episodes.

We have a friend who had a colectomey 20+ years ago and has a Barbie butt. He’s more my husbands friend so I haven’t really discussed particulars with him. But he’s now over 75 and last year went elk hunting where he rode a horse 8-10 hours a day to the back country to hunt for 5 days. Do it hasn’t slowed him down at all.

I’ll be 70 this year so am concerned about a j pouch and aging. I know muscle tone diminishes with age and I wonder what will happen as far as that goes in another 10 years or so. If things go south then it might be hard to get a reversal surgery in your 80s. Of course the idea of a bag doesn’t appeal to me much. So....

FlowersGal, good to hear that your husband's friend is out there enjoying his life.

That's an interesting point you make about surgery and ageing. I didn't think to ask my gastro whether it's better to have surgery before I reach a certain age, but will ask the question.

VanJordan said...
I think removing organs from the body is a mistake, and I am furious that this is the best that modern medicine can do toward "curing" the disease: permanently disfiguring people.

Colon bacteria are essential. When I flare I get depressed. When I'm in remission my mental health is great.

Are you implying that when you're flaring, it changes your microbiome, and *that* is causing your depressed mood while flaring?

VanJordan said...
So what would live be like without a colon where so many essential things for the immune system, neurotransmitter system, and general health take place?

Thousands and thousands of people have had their colons removed and have functioned pretty darn well afterwards, with the vast majority functioning better than they did before having their colon removed.

I'm grateful my surgery was successful and my quality of life is a 360. 32 yrs of UC wasn't always easy. Prayers for all suffering with UC

I can't remember the numbers because it was about 5 years ago, but at one of the conferences they presented survey data on a thousand or so people who had surgery. The majority, something like 70-80% were happy they did it, and many (maybe more than 50%) said they wished they had done it *earlier* instead of waiting as long as they had.

Nobody wants to have surgery, but when your quality of life is terrible with UC, it can be a big improvement.

You should read that study fully.

"A retrospective analysis of 666 patients with UC who underwent a colectomy reported that 27 % experienced severe postoperative complications, with the mortality rate being 1.5 %"

That's almost 1/3 of colectomy patients.

A lot of people hold out on getting surgery for so long because they know it's not the best option, but eventually their quality of life with UC gets so bad that they become desperate. I've met some of these people. Some of them have permanent ileostomies that cause them daily headaches and restrict their lifestyles.

Modern medicine needs to give us a better alternative than disembowelment. Yes, it's sometimes a better option than living with refractory UC forever, but it's not a good option.

Just to clarify, yet again...

I never said nobody should get surgery. I said that it's pathetic this is the best modern medicine can do. I am upset with modern medicine, not with UC patients.

TroubledTurds said...
i agree - too bad more folks don't die from UC - that would certainly stir things up a bit -

What a ridiculous, outrageous thing to say? Don't "agree" with me by putting words in my mouth that I never said. What you just said is utterly monstrous!

What is wrong with people here??? So many bullies who can't tolerate differences of opinion!

Surgery was a good option for me. UC had completely debilitated me. I had no quality of life and failed all the meds. I opted for the 3 phase J-pouch. All the surgeries made for a really rough year but, the pain of recovery was no where near the suffering I was having with UC. My life now if pretty close to how it was before I had UC. I have to hit the restroom about 5 times a day, but compared to 15 urgent times (with high risk of accidents) it is no big deal for me. I have been blessed and haven’t had any problems with UC affecting any other part of my body. I’ve always been really physically active and tried to keep positive about my condition. I think those things have really helped me avoid depression. If I could change one thing about the J-pouch, it would be the buttburn. Once in a while, I break down and eat something spicy, an a few hours later, I’m reminded why I stopped eating spicy stuff. Other then that, no real complaints. I know that not everyone has had the same experience, and I can only speak for myself, but I personally would absolutely do it all over again.

Thank you so much for honestly giving me your personal perspectives post-surgery. I agree that for those of us with pancolitis / severe colitis often the decision to have surgery is made for us, due to the severity of disease, and for some with mild colitis this day may never come.

I have friends & acquaintances with UC that manage their mild flares with mesalazine, and have never been hospitalised due to UC, and family members who've had surgery (I can't ask them about their surgeries...for reasons).

I also agree that it would be better for modern medicine to be focussing on cause / prevention / cure rather than surgery, as science is only just discovering how closely our gut microbiome, immune system, and brains are connected. There's some interesting research that suggests that Parkinson's starts in the gut.

I've been close to having surgery 3 times now, to the point of planning the surgery with a surgeon, and practicing with a stick-on sponge 'stoma' and bag, so I'll keep myself mentally prepared that this day may come, while hoping it doesn't!

noodlesnoodles said...
Gut Flora
Gut flora issues occur when you have an imbalance. If you have no colon, you can't have an imbalance. A GI on Twitter explained it that way - the issue just no longer exists. This is backed up by the fact that millions of people have gotten ostomies over the years and there is no scientific evidence that there are gut-flora / immunity related consequences.

Thanks Noodlesnoodles, that's a fair point - no gut flora, no imbalance. I guess there may be advantages to having no gut flora, in the same way that Parkinson's disease is less prevalent amongst people who've had appendectomy.

Thanks New577. That's wise advice about thinking about age and the future. I realised that while I've been on Humira (for 6 years) I've only had two years in remission - 16/17. Every other year I've had problems, including a stay in hospital last year.

I'm hopefully going to be able to try JAK inhibitors soon, but if that doesn't work for me I think I need to seriously consider the op because my life is so restricted when I'm flaring. I want to be able to see the world when the pandemic is over, rather than spending every hour I'm not at work lying in bed hoping that I'll 'turn a corner' tomorrow.

It's my 20 year anniversary of UC at the end of 2023, so if I'm still in and out of flare ups then maybe that's the time for me to bite the bullet and have surgery.