Surgery - regrets or no regrets?

Hi, I had UC for almost 20 yrs before having my colon removed. I really didn't decide to have it done. I went in for a bowel resection (stricture) and woke up with a tem ostomy. They made it permanent about a yr later. I would never have picked it for myself. Yes it has made life better, but I do still struggle with the emotional side of things. I don't regret it tho, just makes me sad to have it. The downside for me was developing a hernia very early out from surgery and suffering horrible blockages not knowing was was wrong. So ten yrs later had hernia repaired and also had the anus removed at the same time. Two different surgeons. Started having trouble with my bladder about six weeks after although I was having a pulling sensation at the end of urinatiting while still in the hosp. UTI was ruled out. I thought it was fr the hernia repair but the surgeon says that was too high up to affect the bladder. Said the bladder basically rest on the rectum. He has referred me to a urologist and also back to the surgeon that did the anus removal. I cancelled both those appts. I have seen a little improvement and want to give it more time to see if it gets better. I am 5 months out fr surgery. Also just tired of dealing with Dr's right now lol. I haven't heard of nerve damage being a factor so that is new info for me. I don't think it's common because I don't remember anyone on the forum saying they have bladder problems fr this surgery.

They did not remove the anus with the temp ileostomy because it wasn't planned and the surgeon left it for reconnect if that would be possible down the road. When they made it permanent he felt I was still too sick to live thru the surgery if he did that too. I don't know why the hernia developed but that was the cause of the blockages. Have always been somewhat limited on diet. Can't eat fiber or most raw fruits or veggies. Some fruit is okay. I never had any problems with the bladder for the last 10+ yrs. it just started after this latest surgery 5 months ago. I'm still hoping it will continue to improve. It's better than it was two months out. :)

My rectum is removed except for a small rectal cuff which is 1-2cm. My surgeon feels the rectal cuff has a better outcome with control etc for a J Pouch. UC can potentially still attack that small cuff and developing cuffitis but so far so good.

I have not tried steroids or immunosuppressants because (in my opinion) they are like a bandaid on a festering sore. The underlying problem still exists and there is always the suspended terror of when UC will strike again. For me, that seems like a roller coaster - not to mention the risks of long term drug use. What brings a wry smile to my face is the idea of eating McDonalds for every meal for the rest of life would be considered silly because it's bad for your health. But taking drugs everyday for the rest of life is considered a way of getting a "healthy" option - even when those drugs don't cure the original problem.

I dunno where to start with this anti-drugs tirade. I really don't know where to start.

It's wrong when applied to those people happily in remission for most of the time (sometimes nearly all the time). It's wrong when applied to those of us who will suffer from the IBD/surgery fallout for the rest of our lives. And McDonald's is completely irrelevant to that.

I, like my sister both had surgery. She had absolutely no choice, she was so severe and in an emergency situation she was rushed into emergency surgery. She died on the operating table for over a minute. Her colon was so ulcerated it fell apart in the surgeons hands (my surgeon as well). Nothing was controlling her flare at all. She lost so much blood every time she went to the bathroom it looked like a murder scene. She was in the hospital for well over a month as she healed. The first words when she woke from surgery was "I don't feel sick anymore". I was different from my sister. I had UC for 16 years. The vast majority of that time I was well under control with basic meds. I traveled constantly for work, never had any severe issues that really kept me from doing anything. Food never helped nor hurt me so I was eating what I wanted. Time eventually took it's toll on my condition. I would start to have more severe flares from time to time which put me in the hospital. As those progressed, treatments for me changed. Things would improve then fail and we moved on to the next. I was constantly dealing with iron deficiency to the point I was getting round after round of infusions, they were non stop. That led to the removal of 15 inches of my left colon which the surgeon at the time and my GI identified as the culprit. Aside from the leak and horrible infection from the surgery, my iron issue improved and didn't need any more infusions but sadly the disease attacked the remaining part of my colon, the part that was never touched previously with inflammation, I now had pancolitis. If I knew I would of eventually went the full surgery route for a J Pouch, I would of done it all the first time but I wanted to hang on to my colon as long as possible. The bowel resection caused me issues during my J Pouch surgery (major scar tissue). After that first surgery is when things really went downhill and fast. My GI and I tried everything. He presented my case numerous times at conventions, sent me to the University of Miami for other opinions but in the end, Prednisone was all that was helping and even that had begun to fail. I've already dealt with enough side effects / issues from Prednisone and there was no way I was staying on it long term. I got to the point I was a prisoner in my house. Countless accidents kept me inside. When I did go out, I always had diapers on and multiple times had accidents. I couldn't enjoy things I used to. Even simple grocery shopping was a massive stress. I tried one day to go shopping 3 times. Each time I got to the store I had an accident and had to go home to clean up and change. I had an accident at work one day and that was my breaking point. My quality of life was terrible and couldn't live the way I was anymore and J Pouch surgery was my choice to get my life back and that's exactly what it did. It wasn't without it's challenges. As I mentioned my bowel resection caused extensive scar tissue. It took my surgeon over an hour to cut through my abdomen. Other than that the first surgery was very "uneventful" as they described it. The J Pouch creation was fine and began to recover nicely. I did have a host of complications...one of the staples (we didn't know at the time) had come loose and a small leak had caused an infected abscess a week after surgery. I had to deal with that. The PICC line put in to give me antibiotics to treat the abscess, caused me to have a blood clot in my neck...I had to deal with that. Later we thought the abscess was on it's way to heal but I got horribly sick again and exploratory surgery was needed to address it. It was open surgery once again, re opening my incision that was on it's way already to heal. We found the cause of my abscess and was repaired. Since then, I've had no issues. The reconnection surgery went perfectly. I've dealt with the common issues of reconnection and it's been a night and day difference between just after surgery and now, just over 3 months later and I continue to improve. I now have my life back that I had lost. I'm still under the care of my surgeon and he's been thrilled (and myself) with the progress and see improvements every time I see him.

With UC, keeping the rectum usually isn't an option that is offered. I would get real statistics on whether erectile dysfunction is a large concern or if it's a one in a million. I have seen a lot of people have surgery here and I haven't encountered a person with that complication - though I know everyone is warned of it because I see it mentioned often. Ask for numbers. If you keep your rectum, you could end up dealing with "more of the same". UC effects the rectum, and often, it's the worst area for a UCer. You can lose the entire colon and suffer with debilitating symptoms from the rectum. Or you could end up lucky, and end up with minimal symptoms. One thing that my surgeon mentioned is that if you keep the rectum, the chances of cancer in the rectum are significantly increased.

One thing to remember, is that surgery is "curative" for UC, not for Crohn's. If there is any question about your diagnosis, get all tests necessary to find out what you're dealing with. For people with Crohn's, it's best to try every medical option before surgery in my opinion. Sometimes surgery is necessary regardless, but since you can't remove all of the effected areas, it can come back elsewhere, and having less to work with is not necessarily helpful. With UC, the diseased part is gone. Of course, there are always chances you could be diagnosed with Crohn's later on in life, at that point, you would be fighting Crohn's with a shorter bowel, and that wouldn't be easy. None of it is easy and there is no easy way out. The decision to have surgery is a really difficult one, one you can not turn back from and one that offers no guarantees. I agree with NCOT to some extent, it's not something to be taken lightly at all, and if there is any chance of keeping your organs, you should consider that. On the other hand, cupcakes is right, no one is here because they had a response to medication. We are all people who fought and ended up with surgery regardless... It's not like people are out having colon surgery electively. When we say it's great to be off medication, IT IS, but that's the silver-lining. It would be great to be healthy. It would be great to be in remission. I try to see the positive side. I love the freedom of not needing 10k a month infusions, but sure, I would have hung on like that if I could have. In retrospect, I don't think that would have been smart for my on personal case.

cupcakespinkgal said...
NCOT I think you are lumping all IBD patients together which is not correct in these scenarios. People with controlled disease who are living life usually aren't considering any surgery. My father has UC and has never even been on steroids, it is controlled with sulfasalazine, so surgery wouldn't be a better option for him.

When people can't leave the house or work or have exhausted several meds it usually is their best option.

I think in most of these scenarios those of us that are happy are because we were ungodly sick before surgery so minus any major complications feel better than before. For me that is definitely the case. I couldn't work, I couldn't leave the house because accidents were so bad, I couldn't sleep from pain, and I could barely eat. So pooping in a bag is craptastic to me!

More and more people seem to be wanting to skip most of the meds and jump straight to surgery though. Some people have been in a 10-year-remission on Remicade with no side-effects. I think it's crazy not to try at least one biologic first. The chances of getting cancer specifically from a biologic are ludicrously small and any GI who doesn't make that plain isn't doing his or her job well enough. As somebody with IBD your chances of getting lymphoma are already slightly elevated (from say 2 in 10,000 to 4 in 10,000). I don't have sleepless nights over a 4 in 10,000 chance of getting something, 'cos I've got enough actual problems in my life which exist right now to have sleepless nights over instead.

And if nobody will take my word for it, maybe they'll take somebody else's.

/www.reddit.com/r/CrohnsDisease/comments/1e0o6l/adalimumab_or_infliximab_for_crohns/c9vocsb

If you're a woman or a middle-aged male the negligible risk becomes even more negligible.

Frankly I'd a million miles rather Remicade had worked for me so I could have avoided surgery. But the biologics don't work for 100% of people and I was one of the unlucky ones.

The colon cancer risk is another of those things which have been overinflated. Not saying it should be disregarded completely, but it really only becomes a serious risk for those who have had uncontrolled pancolitis for decades. Folks with disease limited to the left-sided colon or rectum and/or well-controlled inflammation have hardly any more risk of colon cancer than the general population. 5-ASAs also seem to have a protective effect against colon cancer.

As for attitude, it's pretty easy to have a good attitude when you have a good outcome, is it not?

I'm a Crohnie...and CarenZ is spot on! I didn't not read everything on page 2, so hopefully I'm not repeating anything. I've had my ileo for about 16 years and the last 8 it's been permanent (no rectum/sewn closed). I had a very conservative surgeon who didn't push me to finalize my proctocolectomy (Crohn's is a difficult dx)...but I was in my early 30's with a 5 year old and I was a crappy mom when I got my first ileo/had it reversed/asked for another. Did have to maintain with drugs/scopes until I had my permanent.

Pretty much the same story as those who LOVE theirs...I am a physically active person who loves to travel and was able to participate in years of my child's life (which included a million horse shows where the toilet structure is next to nothing). I always say I wished I did the final surgery sooner but for me the way things happened worked. I have no regrets and I cannot thank my surgeon more for the level headed approach.

Good luck to you. It sounds like you are on the right path, asking the right questions, and will find the right path for your life. Everyone's story is different but many can find strength from knowing they're not alone!!

I am happy with my outcome and I am still negative. I was negative before I had IBD and I am sure I will always be negative. I am from a family of negative people... I was doomed from the start.

Not so sickly girl...I don't think you are negative at all!! Doesn't sound that way to me. NcOT is though..lololol.

GC4249 said...
Shaz, as someone who has had a stoma for so long, I am wondering if you experienced any problems during that period? How did you avoid some of the common complications like hernia? Perhaps good luck but perhaps good management too?

Blk, as a male I have a relatively trivial question for you .... if you have hair on your abdomen when you had an ostomy bag, how did you deal with that so the wafer adhered?

I'm probably one of the most hairless men around. I have virtually no hair on my body. I have read people needing to shave. I can't imagine you want that adhesive wafer on top of hair, it's sticky enough to get off of bare skin as it is.