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Why you would or wouldn't have surgery ?? what would be holding you back from having it???

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Ulcerative Colitis
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Posted 1/27/2017 5:22 PM (GMT 0)
After reading many post I'm wondering what we all think of surgery?? It seems to be the final answer to this nightmare disease. The anxiety with this disease is horrible.Can after having the surgery be worse then before???? doesn't seem like it is.I have been involved in a self help group in New York and the few that had surgery say it was best decision they ever made and some on here say the same.Seems like the recovery at least for me has to be planned out.Im healthy somewhat now[6'5 -225lbs 58 yo male have had UC for 32 years] and I'm a contractor so summer which is busiest time of year for me is prob out.Maybe next January???? What are your feelings on surgery????
Posted 1/27/2017 5:28 PM (GMT 0)
If it impacted my daily functioning and I was having accidents with no improvement from my meds, i would be begging for it.
There are many meds I would refuse, so hopefully the mesalamines do me well.

q
Posted 1/27/2017 6:30 PM (GMT 0)
As long as I'm capable of maintaining a good remission and recovering from flares then i will keep my colon. However, i have absolutely no qualms about getting surgery and i will under go it without hesitation if i am no longer able to control my uc symptoms at any point in the future. Surgery is just another teir in the UC treatment ladder that gives us hope of maintaining a good quality of life and being symptom free. The typical surgery candidate has failed numerous UC treatments, has been struggling for likely years, and waking up after surgery they almost immediately feel better. The majority have good results.

There are always exceptions who have bad results. A few that come to mind are the following. SolomonSeal is an example (had his j-pouch removed and is now using an end-ileo with an appliance); he's been through an awful lot and i hope he now has a solid solution and freedom from symptoms. There's also NiceCupOfTea whose had bad results, although she doesn't have a stereotypical UC case or surgery: has Crohn's-colitis and doesn't have a j-pouch (still has part of her rectum and part of sigmoid). Not at all to invalidate her claim, but merely to state that her case is a bit more unique. She's trying different meds and if unsuccessful may have to revert back to a stoma and appliance as well. Also wishing her the best and relief from her symptoms.
Posted 1/27/2017 7:59 PM (GMT 0)
I opted for j pouch surgery because my quality of life was greatly compromised. I was pretty much housebound. That doesn't work so well when you have two little kids! I also stopped responding to the meds. I didn't have much of a choice. As tough as the procedures were, it has been a life saver for me and I have zero regrets. So happy I did it. The j pouch procedure has a very high success rate....that's factual. But bad outcomes do happen. I was willing to go with the odds. My sister and my uncle have long time j pouches (20 and 25 years!) and they have done great all these years as well. I suppose that made my decision even easier seeing how well they have done. Good luck with your decision.
Posted 1/27/2017 8:09 PM (GMT 0)
There are more meds now for UC than when I was looking at surgery but the real reason that I chose surgery was that my Quality of Life because of UC was very low. I was basically begging for surgery by the time I got on the table for the Colectomy.

Also I was at very high risk for Colon Cancer, by my grandfathers died from Colon Cancer and I had UC, without any genetic testing I'd guess that my chances were pretty high for Colon Cancer.

I feel so much better now than when I had my colon, even with the chronic pouchitis that I have it is still way better than UC was.

I would do it all over again if I had to, I wouldn't even think twice about it. I was just done with the whole UC thing.

If you get a 2 step surgery you are looking at a 6 month long process before you can really start work again at a contractor. You're 2 surgeries would be about 3 months apart and then you need at least 3 months to recover before you go back to a strenuous job like a contractor. I had a 3 step surgery and it took me almost a full year to recover from start to finish.

If you are going to be waiting 1 year then I would encourage you to take out as many supplemental hospital insurance policies that you can. I think in NY there is a 1 year waiting period for pre-existing condition on supplemental policies. I had 1 policies and they paid me $300 a day for my hospitalization. I needed 50 days in the hospital due to some minor complications, I think that I was paid over $16,000 for my time in the hospital.
Posted 1/27/2017 8:30 PM (GMT 0)
At the end of the day, it is a very personal choice, and for some it may be the only option.

I was lucky enough to get my UC into full remission through a diet change (SCD diet & Anti-fungal diet - a variation of the SCD diet).

That was neither easy nor quick, but it got my UC into full remission.

So, in a nutshell. I would have surgery if I ran out of options, but I would try everything else before that (alternative medicine like the SCD diet, regular medicine, etc.).
Posted 1/27/2017 8:57 PM (GMT 0)
sleeping in a hospital sucks -
dunking your nightie in the toilet sucks -
dropping the tv remote sucks -
practically strangling yourself with tubes and wires sucks -
heparin shots (as needed) really suck -


my goal for the next 30 years is avoiding hospitals at all cost !
Posted 1/27/2017 11:20 PM (GMT 0)
Soy,last thing i worry about if my UC takes an ugly turn is my hospital stay.
Posted 1/28/2017 12:05 AM (GMT 0)
Seriously
Posted 1/28/2017 12:22 AM (GMT 0)
Hmmm - in Dec 2015 I was all set for surgery after landing in hospital in Jan 2014 followed by two years of stepping up the drugs, with no effect..........then unexpectedly in Jan 2016 I went into full remission (normal faecal calprotectin). I'm very lucky. It feels like a miracle.....until the next time I flare....that could be surgery time....but I'll cross that bridge when I get to it.

I was ready for surgery but wasn't ready for 'Barbie bum'. I didn't want to opt to have my anus stitched up, and wondered how my insides would adjust to the space.

I was very unwell and felt that by having surgery I would 'get my life back' after reading about a rock climber, who chose to stick with a bag rather than J-pouch because she found the bag more convenient when climbing.

I felt it would be a positive step and I would feel mentally and physically more able to deal with life post surgery.

Post Edited (UCyousee) : 1/27/2017 5:25:57 PM (GMT-7)

Posted 1/28/2017 3:56 AM (GMT 0)
I would have surgery if my quality of life was such that living without a colon would improve my situation. Having accidents or being housebound and not responding to meds would surely have me signing up for surgery. But, I also realize that life after surgery wouldn't be "normal" either. Frequent pooping (emptying the jpouch),pouchitis or living with an ostomy have their downfalls too.
Posted 1/28/2017 2:06 PM (GMT 0)

toomuchpoopin said...
I would have surgery if my quality of life was such that living without a colon would improve my situation. Having accidents or being housebound and not responding to meds would surely have me signing up for surgery. But, I also realize that life after surgery wouldn't be "normal" either. Frequent pooping (emptying the jpouch),pouchitis or living with an ostomy have their downfalls too.

This in a nutshell.

There was somebody on here who fairly recently talked about their GI wanting them to have surgery, even though they were only having 1-2 poops a day and (if memory serves) no other symptoms. Think they had severe inflammation, but not many symptoms to go along with it. Basically, colonic inflammation or not, there is no way that person wouldn't have been worse off after surgery.

My situation is better than it was - I think the Entyvio has helped. But living without a colon has its downsides: butt burn, going quite a few times a day, tenesmus (can only go a little bit at a time), abdominal pain/discomfort from food and gas struggling to pass through bowel kinked and thickened from scarring, inflammation, or adhesions. But at least I can sleep through the night now. For about a year after the surgery I was having to get up about 3x a night on average to go to the toilet.

I'm honestly a bit surprised that folks on here with j-pouches seem able to digest their food so well. In theory I have a better mechanical set up to them (my surgeon reckoned it was better to use your own rectum if you can), but in practice it doesn't seem to help. Maybe having Crohn's does make all the difference (although I don't have the fairly typical Crohn's colitis complications, e.g. abscesses and fistulas).
Posted 1/28/2017 2:25 PM (GMT 0)
I too would opt for surgery if Remicade ever fails me. I've had this disease for way too long to keep jumping through hoops to keep an organ that hates me. One time I asked my GI when is surgery is an option. I didn't like his response - "Why take the chance for complications when only a quarter of your colon is affected". Even tho he's an expert at IBD, he has no clue what a diseased colon feels like.

There are always risks and complications of any kind of surgery but sometimes it just comes down to how badly it affects your day to day living and what you are able to deal with.
Posted 1/28/2017 8:27 PM (GMT 0)
Hi! I don't usually look in on the UC forum since having my operation in 2010. I had ulcerative proctitis for twelve years before turning to surgery. I agree with what everyone is saying. YOU will know when enough is enough. Ironically, the only diseased part was my rectum, but when the rectum goes, so must the entire colon with UC. My colon only had minor diverticulosis. My surgeon left the anus. In his opinion, there are more complications when that is sewn closed. Well, my disease came back in 2014 (a year after my surgeon retired) and is in that weeee little part he left. The surgeon I am now seeing, is doing yearly biopsies. He said to remove that part is a major operation, and, unless it is affecting my quality of life (which it is not by far), to just let it be. I was not a candidate for j-pouch. I was too sick going into surgery. I am now 70 yrs old and enjoying life to the fullest. Before surgery, I couldn't get out of the house before 1 pm...bathroom visits up the ying yang, port a pots in every room of my house and I live in a rancher. We even had to drag a port a pot in our van whenever we went anywhere. Not a fun life. Good luck to you in whatever you decide. OH...another thing, my GI doctor (former GI doctor cause I never returned to him) did not want me to have surgery. I found my surgeon online because the GI doctor refused to send me to one. I was prednisone dependent for two years prior to surgery, ran the gamut of meds, including Remicade and Humira, was on 17 to 25 pills daily plus rectal meds. I now take one pill a day for BP...ta da!!!
Posted 1/28/2017 8:44 PM (GMT 0)
Surgery is kind of a tough sell... I will say, I regret not doing it sooner in my case, but you have to accept the moment you have surgery, you will never go back to how you were before. That's not easy to accept. I'd love to go once a day, like I did growing up. Once you have surgery, that will NEVER be possible for you. To make the decision even more difficult, there are no guarantees with surgery. You could end up with a great result, you could end up going 14x a day, you could leak, or have chronic pouchitis, you could end up with a ileo... Though, I am not sure I've ever run into someone who went into a planned IPAA, and ended up with an ileo without any notice. In my case, I had to have 3 steps, and that was a tough pill to swallow, but an ileo would have seemed like the end of the world if it was forced on me. Of course, having had one, I realize it's not really something to focus on in life, you get on well with it, and life goes on - with much better quality than it did when you lived with severe active disease.

In the case where you're really struggling and you foresee that the future will contain colon surgery, I feel like doing it sooner is better than waiting. That's why I decided to have surgery. Even if I had escaped surgery with another drug, how long would I have on that drug before it failed? How long would I go flaring next time, how long would remission last? Would I end up hospitalized? Infection? Thrush again? Doctors.. Drugs... I was like Christine, on 18 pills a day at one time + infusions - and I was still nearly pooping myself. It was no way to live. I am much better off accepting my current situation. Much prefer to go 5x a day and be able to hold it, than live the rest of my life with all those ups and downs, drugs, and unpredictability. I couldn't commit to anything for so many years, now I do whatever, whenever.

NCOT, I think the reason we do well, is because we don't have any inflammation. If you're suffering from porctitis, you're basically living how I was when I was ill with active disease.
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