At what point do you consider surgery?

I have wanted to go to UC meetings, but thought I could share my thoughts with understanding people online instead. I was 16 when I was diagnosed with UC and am approaching my fifth year with the disease. I have had tons of tests and have tried many medications. My social life has collapsed since I was diagnosed because I always worry that I will have an urgent need to go, at the wrong place and at the wrong time. I spoke with a couple of doctors about surgery and they tell me that "I am not sick enough to have it done." I have been hospitalized twice and have had a few accidents. I am currently experiencing a flare up now. I have read a lot about what the future might hold for people with UC and it scares me a bit. My Mom was diagnosed with UC when she was a teen as well and ended up having surgery done because she got very sick. I don't want to wait until I get extremely sick again to realize I need surgery. Currently, I take 75mg of 6mp daily. Surgery is not necessarily what I want, but the future is definitely tough to think about knowing that UC and the medication can cause something much worse.

With that being said, has anyone been successful taking 6mp for years with rare flare ups? Has anyone had surgery before it got to the point where it was your only option? All thoughts are appreciated.

Thanks in advance!

Thank you so much for replying.

My previous GI doctor talked to me about Remicade a little bit. Do you experience any severe side effects from taking it? I was a minor when I first heard about Remicade and my Mom wasn't pleased with the cons of it, which is why I have never really considered anything stronger than 6mp.

Also, thank you for your feedback about the in-person support groups. I think I am going to do some research and find one to go to. That way, I can have a social life with people who understand my situation!

Thanks, again!

When to choose surgery is a personal decision. Some want to exhaust every treatment option before considering surgery. Others choose surgery because they do not want to go on the hardcore uc drugs (immunosuppressive meds, or biologics). Some choose surgery when they are flaring badly, in a hospital bed with nothing else working and no other options left. In the end, I think it comes down to what gives you the best quality of life with the least risk, and how stubborn you are haha.

If it was me, I'd at least try biologics first before resorting to surgery. There's a 60 percent chance remicade will help you and a 6 in 10,000 (or 0.006 percent) chance of getting lymphoma which might be what your mom was worried about. Side effects are extremely rare.

I believe the odds of surgical complications are in the low single numbers. Ninety something percent are happy with their surgery outcome. Many wish they had done it sooner.

I chosen surgery due to the fact that my colon is obstructing froms car tissue- no amount of meds will help that. I've used biologics, & probably would continue to do if the blockage wasn't there. But, mentally- I'm REALLY tired of dealing with UC, UC meds, appt's, etc. I don't expect an ostomy to relieve me of any of those initially, but overtime, I think it will be a heckuva lot easier to live with, day to day. And tired of the accidents, the constant "where's the bathroom?", the what-ifs... At this point, I just cannot wait to get my colon out. It's been nothing but trouble & pain the past 6-7 years. Enough!

I asked my GI that same question once...at what point should I consider surgery. His response was: Don't worry about it until the time comes and besides you only have left sided so it would inadvisable to remove the healthy along with the bad. I don't agree with him. I've know people that have had surgery with Ulcerative Proctitis and are happy with their decision.

I think it all boils down to the quality of life. I am on Remicade now and if that ever fails me, I will be looking into surgery because I do not respond well to most of the Uc meds. I'm in remission now and it would devastate me to backslide, especially because it took me many years to get where I am at now.

garylouisville said...
I think you're almost there.

I agree with Gary. Start with a surgery consult with a top surgeon, ask a lot of questions and think it over. 20's are some of the best years of your life, don't spend it thinking about what-if's...base your decision on your Quality of Life. Having a bag for a few months is not a big deal, I'm going in for surgery tomorrow for step-2 of 3 steps. My QOL with a bag is so much better than my QOL when I had UC.

The healthier you are the easier the surgery will be.

Surgery wasn't my only option either, I hadn't tried many things at all. I was 21 when I got sick and 29 when I had surgery. All those years I should have been having fun and doing lots of things I was in and out of the ER and sick all the time. Also I was taking medicines that had horrible side effects, both some I still suffer from. I don't think you have to be really sick or try everything, you just have to be ready yourself. And that's when you've had enough of missing out on things and feeling sick and giving up things because of UC. It's when you are ready to take your life back. It's much easier to recovery when you are young and not in a flare.
Get a consult, talk to some people in real life who have had surgery. Read up some more about it, abs about some of the meds you haven't tried if you want to.
Then you can make a good decision based on lots of facts! Good luck.

For two people I know who've had surgery, it chose them rather than the other way round, due to bowel perforation. I would rather choose surgery before it chooses me.

If in the future the side effects of medication outweigh the benefits, ie they're not working and I'm getting complications then I'll choose the op. The last thing I want is another health problem to contend with.

I want to prepare a "surgery plan" with all major decisions made, ready for if / when the time comes. I've started watching online videos about changing colostomy bags etc, just so I know what's involved incase the time comes.

First....can we see a history of your medicines and how they worked out? We all like to see what you've tried. Lots of times we all see things that we have used that help others. More often than not people join here and have no idea what else is out there.

you typed,

"I don't want to wait until I get extremely sick again to realize I need surgery. Currently, I take 75mg of 6mp daily. Surgery is not necessarily what I want, but the future is definitely tough to think about knowing that UC and the medication can cause something much worse."

and

"My social life has collapsed since I was diagnosed because I always worry that I will have an urgent need to go, at the wrong place and at the wrong time."

PLEASE...don't let this paralyze you so soon.....

I see a LOT or worrying, and FUTURE tense forward thinking in your post. This isn't bad, but a lot of this has not happened!!!

I like the "surgery chooses you" comment someone made. I don't think you should go 'looking' to have it out to avoid living this way unless there is a cancer (or impending) diagnosis. I don't think you are even near this...you are so wrapped up in what MAY happen, possibly because of your mother, you are already in the end stage in your mind!

I don't blame you, but maybe take a step back and re-think where you ACTUALLY are, what meds you have tried, and how best to actively manage your disease....NOw, please pay attention here.....

I graciously apologize if this is redundant for others than read my posts, but it helps make my point here:

Before you get into worrying about what you are deciding, consider this. There are many options out there before even considering surgery. All of our doctors now are telling us that use of long term steroids is a no-no. Mine is actually telling me that use of long term steroids (except in obvious dire emergency life threatening situations) is actually being considered malpractice. When I started this disease in 1975 it was one of only two medicines available (I am deathly allergic to Azulfidine)...so I was forced to take it and suffer horrendous side effects for years.

Now....Imuran, 6mp, Humira, Remicade, Simponi, etc. are very successful drugs that have excellent results for a lot of people, so you'd have to weigh the possible side effects of that vs. steroids or just plain suffering, which in this day and age there is NO reason to ever do.

When the medical community unanimously agrees it is actually safer (ethically, medically, and legally) and more effective to try things like Imuran, 6-MP, or biologics (except in children and young adults), what does that tell you about the safety and efficacy of these medicines?

Yes they come with side effects too, but they are STILL considered safer and more effective choices over steroids ethically, medically, and legally ...so there is something there....true? That's good enough for me, and I've had close to 40 years experience with this disease...and I can honestly say I've seen it all, except surgery.

There are so many other options out there, and jumping right to surgery....well, you need to take a step BACK here and re analyze slowly.....

May we all be well, and continue to see more advances to everyone, feel better....!

suebear said...
My surgeon said surgery should be considered for any of these reasons:

1. Disease cannot be managed by medication
2. No quality of life
3. Pre-cancer, or cancer diagnosis

My disease was partially managed by medication; but I had no quality of life and I was sick.

Sue

This is so on point Sue.

Mine was a mash-up of 1 & 2. For me I just knew that is was time - ended up getting it done after my 3rd consult.