Why not just take this stupid colon OUT?

Looking for pros and cons here.
I know a lot of people have been dealing with this a lot longer than I have, so I would like to know

Why have you not had your colon removed?

If this is the only "cure," what reasons have led you to keep your colon?

My mouth is full of sores and my joints ache again. I am so tired and tired of being anxious and tired and spending my life on the toilet.
I'm tired of the side effects of all these pills.

It is actually a pretty common symptom of UC, also.
Could be HSV1. I'm on Valtrex again, but it doesn't seem to be helping. So, I'm guessing it's the UC.

I'm tapering Pred and the joint pain and ulcers showed up at the same time.

colonectomy is not always a fix for extra-intestinal manifestations

biologics seem worth a try

The best place to hear about the surgery results is the ostomies forum. You will hear both views...those that are happy with their decision to have it removed as well as those who have had issues with the surgery.

I think the reason for those of us that have not had surgery is pretty self evident. We are just not ready to part with our colon. Either we are kept in relatively manageable state or will not give up until we try every drug or for those who are in a constant flare they are just not ready. It is a very individual decision and what one person will tolerate as a quality of life is very different than another.

For me personally, I have been lucky enough to get my severe flares back into remission.

I like my colon - he has served me quite well for most of my life - it's not my colons fault that I've made some bad choices and made life miserable for him - how could I just turn my back on him, my sorta well and faithful companion ?

and for better or worse, I'm not a quitter - 2 days before Christmas I was 4 feet down a hole, digging up the 4" pipe that leads to my septic tank, standing in sh!t ! after about 15 minutes of digging, I should have called a pro - but I hate for poop to win - ever ! so I kept at it - it was getting very cold and almost dark by the time I got the poop flowing in the right direction - I got it fixed, but I probably should have been a little less stubborn and called someone -

we all have our turning points - as long as I can maintain my current lifestyle, I will keep my plumbing intact - at least I know what I have - something new with a different set of challenges doesn't sound like fun right now -

I always think tomorrow will be better -

I have posted this in the ostomies forum as well for the other side.

(And I do get annoyed at people assuming I must have done something wrong to "deserve" this. It's genetic. My grandmother had it. I was always very careful about my diet, exercise and lifestyle. It is not MY fault this has happened.)

Bad life choices do not give you UC. In fact, the only "life choice" I can see that may increase your chance of getting UC is taking antibiotics. But they don't cause UC - and sometimes you have to take antibiotics. Anyway, lots of people take antibiotics and very few of them get UC.

I haven't had my colon out because my UC is manageable. In my case manageable means:

1. when not flaring, I can eat normally, have one BM per day, no urgency, no pain, no blood, no mucus. The only thing I take to maintain remission is curcumin which is a very safe supplement. If I could take mesalamines, I would be comfortable with them as a maintenance drug.

2. I flare once every two years. Now that I know how to manage my flares, I can usually function at 85% for the two months it takes to recover. 85% means I can take my kid trick-or-treating but only go for two blocks instead of 5 blocks. I restrict my eating to a low residue diet. I rest more than usual and try to stay near bathrooms. I go 5 times a day with some urgency but no accidents. Nothing that restricts my life activities in a significant way.

If my UC gets to the point where I'd need biologics to stay in remission, the colon is coming out. I tried Remicade for one-and-a-half infusions and decided biologics just weren't for me. I had an allergic reaction during the last infusion but I suspect it was a panic attack. It was my brain making my body show me that this was not the right thing for ME.

Even if it was a true allergic reaction, I was so happy to have a reason to discontinue the Remicade, then I knew I would never take it again.

I would say the only benefit to delaying surgery while you're suffering is to buy time in case better meds come out and/or to find the right surgeon to do it.

DBwithUC said...

LilyKazoo said...
I like my colon - he has served me quite well for most of my life - it's not my colons fault that I've made some bad choices and made life miserable for him ...

I think the "choices" narrative is very inaccurate

care too explain db ?

I never considered surgery even when my UC symptoms were at their worst, 15+ BM's daily, total unpredictable urgency, lotta bleeding, weight loss, etc. Why not surgery? Because I'm hard-head basically. I also turned down biologics for the same reason but would choose surgery over biologics if push came to shove.

At nearly the same time I was diagnosed with UC I also experienced excessive vaginal bleeding, so bad I had to get a transfusion (UC bleeding didn't help things). I went to 5 GYN doctors locally trying to get fixed and no one had answers except "get a hysterectomy". I wanted a diagnosis instead and it took 2 years to find a doctor who found the problem, fibroid, removed it and no more bleeding.

So that is the person I am. It took me several years of determined work to achieve UC remission (after spending 10+ years taking everything GI's Rx'd me with no improvement).

If diet had not worked I would indeed consider surgery but I'd have to be at the end of my rope because I am mistrustful of doctors doing anything right. Control freak? yes and it has served me well.

iPoop said...
Our colons might give us nothing but trouble, however, no surgeon will take it out unless what they see ( in a colonoscopy) warrants surgery. It has to be severe enough or show dysplasia to warrant removal. Preemptive removal of a colon, likely wouldn't be covered by insurance... more elective surgery than necessary...

That didn't happen with me. I hadn't had a c-scope or sigmoid in 5 years prior to my surgery and I didn't need one. The surgeon asked me why I was considering surgery and I told him that I really wanted to be off all these medications and my GI was also recommending surgery. I was also in a flare that I couldn't get under control at the time.

ks1905, any regrets?

This is the most my weight has been up and I have been healthier lately. Just thinking it might be better to have any surgery while I am less pitiful.

i haven't gotten surgery because i'm terrified of surgery. i could die on the table and that would be it. what a crappy way to go. all of my flares have been bad enough to warrant surgery but i somehow always manage to escape. if i get bad again, i'll try entyvio or up my nicotine patches to 28 mg. if that doesn't work, then i will have to get surgery.

if i get colon cancer, i'm getting my colon out immediately.

no matter which way i go- having UC forever or getting my colon out and having a bag, both of these choices suck in my opinion.

it's just easier to go with the devil i know than the devil i don't.

LilyKazoo said...

DBwithUC said...

LilyKazoo said...
I like my colon - he has served me quite well for most of my life - it's not my colons fault that I've made some bad choices and made life miserable for him ...

I think the "choices" narrative is very inaccurate

care too explain db ?

unless you made the choice to smoke heavy for years before choosing to quit cold turkey, or you made the choice for massive antibiotics when not needed - then the best scientific evidence is that UC is more about genetics and environmental triggers and location and individual gut microbe profiles than "choices".

Self blame does preserve the illusion of control, but it is not helpful. It is especially unhelpful to suggest on a support forum that people caused their UC.