removing colon

What is the 2016 up to date on how colon is removed and what to expect after surgery?

I would say that depending on the surgeon and your medical condition, and anatomy,
that today if everything goes right then laproscopic colectomy, as opposed to open surgery ,can be accomplished. Less trauma,faster recovery.
Old Mike

notsosick, I am wondering why more people don't make the decision for surgery - either j-pouch or permanent stoma bag? After all, it is the only current "cure" for colitis.

What puzzles me more is the steroids and immunosuppressants come with potentially such damaging side effects - some life threatening or possibly worse than the original UC symptoms. They don't cure UC, so it's more like putting a band aid on a festering sore.

And even if these meds induce remission without causing horrible side effects, there is still the life you describe of doctors, tests etc as well as the uncertainty of when the UC monster will reappear.

Wouldn't surgery be better than running the risk of steroids and immunosuppressants (and having the months or years of trial and error to get the right potion of meds)? And wouldn't surgery, at least in the long term, be better than the anxiety that lurks with the unpredictability of UC and the psychological impact of being crippled by the symptoms?

I realize the answer to these questions are subjective and every individual makes the choices that are right for them - and this is not meant to critique those decisions. But when I read about the horrible side effects of steroids, the steroid dependency, the risks of immunosuppressants etc. which, at best, induce remission for an indeterminable period of time, it makes me wonder why more UCers don't throw in the drugs and go for surgery .....

Surgery is the closest thing to a cure, however it most certainly isn't a perfect cure for uc. Nothing can truly restore cure" us to our pre-uc-life.

There's reasons surgery isn't the first line treatment procedure for uc patients. It's preferable to keep one's large intestine if uc can be managed with medications as it produces the best quality of life for patients. As an example, I'm in histological remission thanks to remicade and I have 1 formed bm a day without urgency or any uc symptoms, uc isn't a worry or a burden on my daily life. Surgery is great for those who cannot or no longer control their uc with medication to a point of a good quality of life. Generally, only 20-25 percent of uc patients will ultimately require surgery, so, you're talking a minority of patients who ultimately need it. I'm sure it's a huge relief for them, as they've tried and failed nearly every treatment available and finally found surgery to solve things.

Side effects are statistically rare with immunomodulators and biologics but serious when they do occur. If you directly compare the risk versus benefits of surgery to biologicals/immunomodulators then you'd see there's less risk with medications.

A bad surgery outcome isn't easy to resolve. A medication you can easily discontinue and switch with another. Repeat surgery is required to adjust your appliance. The majority of patients have a good outcome but bad outcomes do occur and their difficult to get back to ideal.

GC4249 said...
notsosick, I am wondering why more people don't make the decision for surgery - either j-pouch or permanent stoma bag? After all, it is the only current "cure" for colitis.

What puzzles me more is the steroids and immunosuppressants come with potentially such damaging side effects - some life threatening or possibly worse than the original UC symptoms. They don't cure UC, so it's more like putting a band aid on a festering sore.

And even if these meds induce remission without causing horrible side effects, there is still the life you describe of doctors, tests etc as well as the uncertainty of when the UC monster will reappear.

Wouldn't surgery be better than running the risk of steroids and immunosuppressants (and having the months or years of trial and error to get the right potion of meds)? And wouldn't surgery, at least in the long term, be better than the anxiety that lurks with the unpredictability of UC and the psychological impact of being crippled by the symptoms?

I realize the answer to these questions are subjective and every individual makes the choices that are right for them - and this is not meant to critique those decisions. But when I read about the horrible side effects of steroids, the steroid dependency, the risks of immunosuppressants etc. which, at best, induce remission for an indeterminable period of time, it makes me wonder why more UCers don't throw in the drugs and go for surgery .....

it's not a simple surgery, and unlike other surgeries, it leaves you in a different state than when you went into it. People who have surgery for their appendix removal come out 100% normal. People who have colon surgery end up using the bathroom much more often than someone with a working colon.

In my opinion, for me, the trade off has been well worth it. I can do a lot more now than I could when I had a flare up, or when a felt like a flare up was looming (which was always).

Some people are in really stable remission with meds, and their time at the doctor, spending on rx and inconvenience is minimal. For me, I never had a good response to medication, everything I tried either had no effect or it made me sicker in some way. I wasn't a good candidate for anything. I guess if i were managing 100% perfectly on some treatment, even if it was costing my insurance 20k a month, and it caused me to have to go to the doctor every other month, and get needle pricks every month, and I had to worry about the future impact of the med and the future impact of the UC on my life, I would have tolerated all of that in hopes that things remained in a decent shape. That's just what you do. You think your colon is HUGELY important to daily function. Now I see that it really wasn't. You are never capable of seeing that before you lose it. I kind of knew, I always contemplated it, I just never did anything to facilitate it happening before it was necessary - I was scared. You read a lot of horror stories too and that makes you question it. After I had septic shock, it put things in perspective for me. I knew I didn't want to be limited forever.

It's weird here, I have to keep my positivity about surgery to a minimum. I've been very clear about my own appreciation for surgery, but if I ever say it's a "good idea", I am called a "pusher" so I try not to ever say anyone should consider it. I just say I did and I am happy

iPoop said...
Generally, only 20-25 percent of uc patients will ultimately require surgery, so, you're talking a minority of patients who ultimately need it. I'm sure it's a huge relief for them, as they've tried and failed nearly every treatment available and finally found surgery to solve things.

Serious question and not meant to be playing devils advocate, but, I wonder how many people live with debilitating symptoms and reduced quality of instead of having surgery? I know we have quite a few users here who struggle on a daily basis, some who have been struggling for upwards of 5 years...

20-30% is the # who have surgery, correct?

Yes, but I could have chosen to do nothing and stayed ill. I know a lot of people live like that indefinitely. I would imagine the stat is 25%-33%, but there are a lot of people just using the toilet A LOT, driving around with toilet bins in their car, bleeding and wearing diapers.

Notsosicklygirl,
I just wanted to say don't ever be ashamed or scared to speak with enthusiasm about your surgery. It's bringing awareness to people. I couldn't care less what the naysayers think when I speak of my experience. I'm eternally grateful for the procedure and I'll happily yell it from a rooftop. :)

ByeByeUC said...
Notsosicklygirl,
I just wanted to say don't ever be ashamed or scared to speak with enthusiasm about your surgery. It's bringing awareness to people. I couldn't care less what the naysayers think when I speak of my experience. I'm eternally grateful for the procedure and I'll happily yell it from a rooftop. :)

Thanks Marianne. I try to be levelheaded and provide positive feedback without being a "Pusher". It's hard. I do see both sides and I understand why people fight against surgery so hard, I did myself. I feel like I am lucky to be free of all the crap (literally), and I know it's not luck with the high success rate, but I can't help but feel lucky anyway. I know we are all inundated with less than stellar stories that make you feel like you're rolling the dice.

Bull101 said...
The way I look at it, the colon is a huge part of your overall immune system and health and affects much more than just your bowel systems as far as I've read.

I just wanted to comment on this because I hear it a lot. Having lived without my colon now for the past six years, I have to say I never get sick anymore. My immune system is so much better now than it was when I was sick with UC and bogged down with meds. I used to catch everything. Now, nothing. And I have kids that bring in every germ from school. Obviously everyone is different but this has been my experience.

Most feel it was a good idea,when i see my Dr in few weeks i will discuss.Biggest issue for us all is what Glenn Frey from Eagles went thru.You have Pnuemonia you will get strong antibiotics to cure Pnuemonia, but destroy your Colon. My Dr said if he had his colon removed he would still be alive and i believe it being I've had pnuemonia twice in last 7 years.At 57 it might me something for me to think about.IMO remicade and Humira are band aids. Im on 6mp now 100 mg a day and it doesn't keep the flares away

I've not had surgery so no advice from me on that front. However, you are hearing from a lot of people here who have solid experience to share with you. It sounds like you kind of know what you are leaning towards at this point.

As far as why more people don't opt for the surgery right away...well honestly, many people with UC are managing okay with it. I know quite a few people who had 1 original flare, went on 5 ASA's and never ever flared again. Of course that wouldn't be me nor most of the people on this forum. However, there are people who stay in remission with this disease. There are also those of us who don't get horrendous side effects from the meds you named. I have been fortunate to have had solid periods of remission, to respond to drugs fairly quickly and have few side effects on many of them. That can change at the drop of a hat so I take nothing for granted with this disease. I have also had some serious, serious flares that were the flares from hell. My body is not the same and never will be as it was pre-UC. In remission, I'm still not the same. Even with surgery people's bodies are not the same as pre-UC. That train ride is over. There are also extra-intestinal disorders associated with UC that some people get and I don't think (but I'm not certain) that goes away with colon removal.

Like you said, it is very subjective. I think it is all about a quality of life and what one will or will not accept to live with. You have to look at YOUR overall picture. As far as the band-aid reference, doesn't that really pertain to all drugs that treat, but not cure a condition. My husband takes PPI's. They aren't curing his barrett's esophagus, but he can't yank that out. Thank God we at least have these drugs to help manage us.

Good luck with your decision.

Describe what the diff surgeries are? And the different steps for each? I'm 57yo - 6'5-230lbs male in pretty good shape Ileo?