What are the reasons not to have surgery?

There are other options before surgery is considered for me, but I'm just wondering, why not have surgery? What is it that stops people from having it? I don't know much at all about it as I have not done some research yet so I am asking this question, almost from the point of view of, "isn't it clearly a fantastic option given this disease"? I'm curious to know why people stay on biologics for a long time and not have surgery.

Note: as it's the internet the tone of this post will be hard to tell, so let me make it explicit: I am coming from a place of curiosity and ignorance, I am not being in any way judgemental or trying to make any points about what is better or worse here. All I am trying to do is learn a little bit. Please educate me guys! :)

Surgery to remove one's colon is an irreversible choice.
You might ask the same question about any surgical choice: why not do it?

If you have other choices why not explore them first unless your life is in such a poor state that you really don't want to lose any more time to this disease. It's your choice and no one should question your decision.

ByebyeUC is right .... The main reason many people put off surgery is fear. These fears generally revolve around concerns about complications from surgery or the stigma of having a bag when an end ileostomy is the outcome of surgery.

Some other reasons why surgery is seen as a last resort:

1. Medication is often seen as an easier option than surgery - there is no pain per se in taking medication.
2. Hope that medication - current or future - will make surgery unnecessary.
3. Most UC sufferers are treated by gastroenterologists, who are trained only in treating people with medication and trying to keep them out of surgery. This means the majority of sufferers will follow the medication path all the way to the end before considering surgery, so surgery becomes a final option.

However, surgery does not need to be a last resort.

I elected to have surgery because I was not prepared to take steroids, immunosuppressants or biologics for the rest of my life. With a life expectancy of 30 or 40 years, I did not see medication as a viable option that would get me all the way through and the balance of probability was that I'd need surgery at some point in the future when all the medication options were exhausted. Medication that did not cure the underlying problem but could create other problems as side effects was not something I was prepared to accept. Similarly, I was not comfortable with knowing in the back of my mind that UC could flare at any moment and throw my life into debilitating disarray. I needed stability, not to have my life controlled by BMs and electing to have surgery I saw as the best way to improve my quality of life.

Three months ago I underwent surgery and have a permanent bag. I am now med free, no pain, feel and look healthier, do not worry about BMs at all, and enjoying life once again. And the added bonus of never needing to worry about colon cancer!

Naturally, there are some things that can be an ongoing problem or concern after surgery, such as blockages and hernia (specifically in relation to an end ileostomy). But, all things considered, these are relatively small and indeed controllable issues compared to the physical and psychological impact of UC. There is a small chance that Crohns colitis is misdiagnosed as UC but this does not mean surgery was unnecessary - medication might buy some extra time for a Crohns sufferer.

Of course, surgery is not for everyone and many people will (understandably) avoid it at all cost. It is an individual choice but leaving it as a last resort may or may not be the best decision. For me, surgery has been life changing for the better and many of the forum posters here who had surgery as a last resort will say they wish it happened sooner. Have a look through the "Ostomies" section of this website.

Also, the transcript in the link below of an interview with a colorectal surgeon on the question of why you shouldn't wait too long to have surgery for UC is enlightening:

http://www.everydayhealth.com/colitis/webcasts/colitis-and-surgery-why-you-shouldnt-wait-too-long.aspx

Post Edited (GC4249) : 9/24/2016 7:23:52 PM (GMT-6)

'Cos if surgery was all it's cracked up to be, it would be a first line treatment and not a last. It's irreversible, there are risks attached and the outcome cannot be guaranteed. Most people ultimately end up with a decent outcome, but not everyone does and chronic pouchitis/Crohn's is absolutely no fun to live with.

Also, the colon isn't some useless piece of defunct tubing but a vital part of the GI tract. It absorbs water and electrolytes, contains 90+% of the gut's microflora, and produces neurotransmitters such as serotonin. Losing your colon isn't a consequence-free zone.

pubmedcentralcanada.ca/pmcc/articles/PMC3424428/
/www.cambridge.org/core/journals/british-journal-of-nutrition/article/evidence-for-altered-control-of-glucose-disposal-after-total-colectomy/D8EDF6B18B2A211BC9950C3005F81D04

On the plus side, you have zero risk of colon cancer after colectomy, so there's that.

I agree with the fear and risk point made - but there is something about the colon that is also a psychological barrier. If someone is told they have a diseased part of Liver or some kind ofr hardening of a part of the lung, they schedule surgery right away. If someone is told other organs need to come out, such as gallbladder, spleen, pancreas, they do it.

My thought is that crapping is so personal, it is more like having a recommendation for breast removal, or testicular removal, or amputation of a foot - people imagine themselves as very different afterwards. Nobody really imaging that gaulbladderless is so different.

DBwithUC said...
I agree with the fear and risk point made - but there is something about the colon that is also a psychological barrier. If someone is told they have a diseased part of Liver or some kind ofr hardening of a part of the lung, they schedule surgery right away. If someone is told other organs need to come out, such as gallbladder, spleen, pancreas, they do it.

My thought is that crapping is so personal, it is more like having a recommendation for breast removal, or testicular removal, or amputation of a foot - people imagine themselves as very different afterwards. Nobody really imaging that gaulbladderless is so different.

I agree with this totally. And it all goes back to fear.

Just a thought for those who may be in NEED of surgery: I would concentrate on the reasons TO HAVE surgery and not so much on the reasons NOT TO HAVE surgery. You could drive yourself crazy otherwise. I've been there.

NiceCupofTea said...
Also, the colon isn't some useless piece of defunct tubing but a vital part of the GI tract. It absorbs water and electrolytes, contains 90+% of the gut's microflora, and produces neurotransmitters such as serotonin. Losing your colon isn't a consequence-free zone.

I agree. Your colon isn't just a storage area for poop - it's also a factory for important chemicals. 90% of serotonin is made in the 6ft of mucosa that lines the intestinal wall. A third of your immune system as a whole is in your colon.

A large part of your enteric nervous system as whole will go missing, which could have implications for you emotionally as well as physically. The enteric nervous system has been described as a "second brain" because it can operate autonomously and it communicates with the central nervous system, (which might give a whole new meaning to the expression “head up ass” lol).

OTOH a colon that is constantly inflamed may lose many of the functions provided by a healthy colon. I hope never to have to make that choice, biologics or surgery.

I asked my doctor this very same thing about 10 years ago or so. He basically said the same thing. If we can manage our UC thru medications then why risk the complications of surgery? He's had many patients who had the surgery and ended up worse off then before. Of course there are success stories but as with all surgeries, there are also horror stories.

I've had UC for almost 25 years and I told myself that if Remicade ever fails me (I'm in a solid 4 year remission) than I am doing the surgery because I can't go thru anymore flares emotionally or physically.

But as the others said, surgery is very personal decision and only the person will know if it's time. As long as the research is done and you know what you're getting into, then possibly it will set the mind at ease.

Despite the fact that your colon does more than just hold poop.....yes that's true.....thousands of people live their lives just fine without their colon. I've been doing it for a while now and I do not catch illnesses anymore than my family members do with their healthy colons. My immune system is pretty darn good now. That wasn't the case back in the UC days.

I have also been seriously wondering about this. I was just diagnosed with UC and am in a horrible flare. I am on my first round of Prednisone. My quality of life is abhorrent -there's not a single moment that goes by that I don't live in fear of having an accident. I can do none of the things I love to do. Can't go to the beach. Can't go to the mall. Can't go to social events. I can't even go to Wal-Mart. Going to work everyday is an enormous gamble, and I've had numerous accidents already. (Thank God for Depends.)

I am 27 years old and have the rest of my life ahead of me. Even if I go into remission...do I really want to spend the rest of my life avoiding all the foods that I even remotely enjoy and wondering if that freaking apple or bagel will send me into a flare and ruin my life for the next several months?

This is no way to live.

Post Edited (Canaveral) : 9/26/2016 9:31:40 AM (GMT-6)

~ chicken wings ~ said...
Thanks for all the discussion so far guys ...

Yes Canaveral me too. I'm beginning to wonder if it wouldn't just be so much more an enjoyable way to live if it went well, even though my colitis is clearly not the worst case based on what I've read about others. It's not nice though, got the classic stuff atm, blood, mucus, diarrhea, urgency&accidents ... age is an interesting one, at 27 it will obviously change your life for potentially many decades, and not possible to tell what you'll think about it all in 40 years, but that's true of everybody i suppose. Is there a minimum age for the surgery? Do they do this stuff for children?

Yes, they do surgery in Pediatric patients, the type of surgery depends on their age, anatomy and health. Some pediatric patients get j-pouches.

I wish this was only an adult disease but unfortunately it is not.

ks1905 said...
Yes, they do surgery in Pediatric patients, the type of surgery depends on their age, anatomy and health. Some pediatric patients get j-pouches.

I wish this was only an adult disease but unfortunately it is not.

Thanks for the info ... I was just trying to work it out due to the growth and development of the body after it would have taken place. Once the surgery is done, if there are no complications is that "it" for good or is it routinely adjusted? (I'm asking out of a place of little to no knowledge here, I am going to speak to the surgeon soon I'm sure, but if there's any place to ask these questions online, I guess here's the best bet!)

Katerina-b said...
Similar story to Canaveral. I have been wondering this too. I have been diagnosed at 21, and for a couple of years have been doing fine. Two past years have been in complete remission. A month ago a bad flare hit me . Im not sure if pred or 5 ASAs are helping. Like many others here, I'm still pretty young - 26. I have been lucky to have a great life. Have a job a like and finishing my grad degree. However knowing that all this can disappear because of this disease is heartbreaking. I can't do my normal activities, and going to work is a struggle. I've been doing research on treatment options that might be persuade in the future, such as biologics, surgery... What scares me about surgery are possible complications from the drugs we take. From what I saw, there are higher degree of complications if you were on prednisone or immunosuppressants before the surgery. I know that many people had successful surgeries while being on these drugs, but still thinking about it scares me... On the other hand, if there are such risks, isn't it better to go for surgery before your body has been hit hard with all the heavy medication?

Yeah, I'm in a similar situation to you guys too. A huge sway towards surgery for me would be NOT being on those immunosuppressants and those strong drugs for a very long period. Having said that, I'm not entirely sure what the "side effects" of being without colon are. As others have said here, the colon does so many 'jobs' and is home to all that bacteria and has a huge influence and communication with the brain if I understand it correctly, so how does all that side of things work? (Then again, as others still have pointed out, many have these surgeries and do just fine, so maybe it's not that big a deal from that side of things ... )

I dunno why people act like having their colon taken out is no big deal, but being on the drugs is the worst thing ever. You're talking about irrevocably removing a part of your GI tract: to me, I'd rather be on meds and still have my colon.

Me, I get dehydrated and tired more easily than I used to. Also have to be on an antidepressant - well, I don't have to be, but I was finding it hard to function without one. Basically, I don't bounce back from things the way I used to: a cold bothers me for weeks now. (And it's not the 6MP, 'cos I was like that last winter before I started the 6MP. Had a cold which went on for weeks and cold sore after cold sore - still got the scars.)

Post Edited (NiceCupOfTea) : 9/26/2016 11:19:49 AM (GMT-6)