Surgery - regrets or no regrets?

I have no regrets at all after my surgery, it gave me my life back when all drugs failed me. I had a two step J Pouch procedure and although I had a host of complications, I would do it all over again. My J Pouch improves every week and I'm looking forward to further improvement. The temp loop ileostomy was ok but it wasn't for me. All the supplies, bag changes, skin issues etc was just something I didn't want. Initially after takedown, I had the usual issues that arise with a J Pouch. It can take several months to "normalize". In the beginning I was borderline crying / screaming in pain from the dreaded butt burn, not it's virtually not an issue anymore.

I meant to ask - butt burn is from frequent BMs with a pouch? Not something experienced by people with a permanent stoma?

And what was your experience immediately after initial surgery to remove the bowel? Some people describe it as pain that makes you breathless ......

Thanks Caren.

I might be wrong but I'm assuming you are female and my question to blk about bladder dysfunction might not have the same meaning (because of the different makeup of male and female urinary systems) but did you experience any nerve damage from surgery that caused bladder or other problems?

Did you experiences any complications?

And was the pain after surgery a breath-taking agony like I've heard?

Ps. I've never heard of anyone having a flare with an ileostomy if you had ulcerative colitis. Once your colon is gone, so is the UC.
Maybe you're thinking of jpouch people who have flare ups of pouchitis? From what I read here, there seem to be a lot of jpouch complications. And no butt burn for me because I don't have a butt! 😜

No regrets here....I'm very happy with my J pouch. But I had severe pan colitis and was a non responder to the drugs. I had no where to go but up. I'm extremely grateful for the procedure.

GC4249 said...
blk, thanks for getting back to me.

I have heard that bladder and erectile dysfunction are common occurrences for men due to nerve damage during surgery. From what I've read, this is particularly the case if the rectum is removed.

You probably didn't have your rectum removed since you went the pouch route? But did you have any complications from nerve damage?

I don't know how common the occurrences are but it is a risk with abdominal surgery. There's a risk with any surgery, you just have to weigh the risk / reward. I had abdominal surgery in 2013 and my initial surgery last October and open surgery again in December to correct an issue and I didn't have any issues with bladder or erectile dysfunction. One thing is they had a urologist put stents in so the surgeon can see things better. All I have remaining is a small rectal cuff, everything else is removed.

I don't have regrets, only because I had no other option. I guess if a cure was found, I'd regret having given up my colon. In reality, a colon is better than no colon, but no colon is better than a chronically ill colon. In my case, I was very sick and I was losing a lot of my life to this illness, I didn't see any other option. I know the perm ileo is the smarter option. After my first step, I had an end ileo, and it was very easy. I thought for a moment, maybe I should stay with that. less surgeries, less chances of adhesions, less complications, no more sitting on the toilet, no butt burn, no chance of pouchitis... If you're okay with buying supplies and having a bag, it's a really great option. Once you have it, your life with be so much easier compared to having UC, you will wonder why you didn't do it a long time ago... I knew I didn't want to have to wear a product all the time, so I went for the j-pouch. If I needed to go back to the ileo, I can handle it, but I didn't want to have to buy supplies forever. Stupid reason to deal with all of the potential problems, but yup, that was pretty much it. The ileo was great, but I did find myself not eating a lot or scheduling food around the bag to some extent. I wouldn't want it to fill up and I didn't want gas in the bag - and there ALWAYS was in my case. I also would have to dress a certain way if I knew I was going to eat. I wouldn't want a bulge under my shirt. If I was running out mid-day to get groceries, I wouldn't worry about what I wore because that's a short trip and I could empty the bag before I went so I knew it would stay flat, but a longer day out, I'd wear something flowy. It's probably worse for women in that respect. I love low waist, and it wasn't a problem but often I would wear underwear that I could pull up over the stoma so I'd have these high underwear showing over the top of my pants - no one knew but me of course. I don't miss those concerns. Of course with the jpouch, I've had other issues. Burning butt, yeast, getting up in the night. I have no regrets, as I said, I had no other option. I regret having UC.

I had trouble peeing after surgery, but once I went a couple times, things were fine. I think it usually tends to be temporary. I know men can have issues with arousal after surgery - but as a lady, I don't know much about that.

SolomonSeal said...
Perm ileo is a slam dunk. Do it. Bo Shen, the premire pouch doctor,calls it curative, something he will not say about the jpouch. You lose (almost) no small intestine, you have no anastamoses (sewing together bowel which can cause stricture or obstruction in future), less surgery, NO POUCHITIS OR CUFFITIS, less chance of "discovering" (I think developing) Crohn's, no incontinence, none of that BS.

I'm agreed with this.

You get a very vocal minority in favour of the j-pouch who post in every single surgery thread, but most other people don't bother. But trust me when I say there are people who are just as happy with their permanent ileostomy on this board, but hardly ever post any more.

The disadvantages to a stoma are so obvious (reliance on external supplies, having to wear a bag all of the time, etc.) that the good side tends to get overlooked. The fact is some people develop pouchitis after surgery. For some of those people the pouchitis will become chronic and will need to be treated with the same drugs as UC. In reality chronic pouchitis is just another form of IBD; in some cases, Crohn's.

People are scared of a 1 in 10,000 chance of developing lymphoma if they take a biologic but not scared of a 1 in 10 chance of developing IBD in the pouch after surgery.

Me, I find it all a sick joke. Probably shouldn't comment in these sort of threads anymore. I do try but occasionally I feel the need to just vent I'm so pissed off by it all.

Even though my disease has returned to the anus, I have NO regrets having the surgery. At least I don't use the anus. The surgeon I am now seeing told me I may be looking at surgery down the road to remove the anus. It isn't really bothering me now, so I don't think it is a major flare like I used to get before my surgery. The doctor cracks me up though....I told him, "Doctor, how far down the road are you referring? I'll be 70 in August!" I had my surgery almost 6 yrs ago.

Also the pain is substantial but not unbearable. It was managed well in the hospital and I only needed pain meds for the first couple weeks at home. I find after what most of us have been through the pain is definitely manageable.

My butt healed very well, it was uncomfortable for a bit but already feels normal. I would definitely ask the surgeon how he closes the anus. Mine was stitched closed as oppose to staples and healed pretty quickly.

Thanks all for your replies. Overall it seems like a positive rather than dealing with UC.

My current flare will not relent. Bleeding for 3 months and diarrhea for the past 2 months. Lost 10kg in weight. Although I'm a relatively moderate case at 6 or so BMs a day, they are urgent enough and frequent enough to prevent me from working at the moment.

I also have a 10 month old daughter and I feel I've already lost time with her. UC consumes so much energy and it is hard to enjoy the little things in life.

I am nearly 47, so my goal is to enjoy as stable and as predictable a life as possible as my daughter grows up.

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 realize most people have surgery after they exhausted all medical options. But I notice most people who have had surgery say they regret not having it sooner. I don't see UC as an apprenticeship, in which you need to spend a certain number of years and experiment with a certain number of drugs before you can graduate to surgery.

I read a report about the differing views on IBD held by gastroenterologists and surgeons. Surgeons generally view drugs as a cover up and toxic. GI doctors are trained to deal with disease using medication and tend to downplay the toxicity of drugs.

My latest visit to a GI doctor was at times farsical ..... he discounted the dangerous side effects of drugs by saying I had more chance of dying on the highway to his office than getting life threatening side effects from the immunosuppressants he wanted to give me. That might be a fair point if I only took 1 tablet in the same way I took 1 trip on the highway. Or maybe a better comparison would be if I drove on the highway 24/7 for the rest of my life in the same way as drugs.

Then he told me if I developed cancer as a result of the drugs, then "we would just stop the drugs and fix the cancer". Hmmmm ..... probably too late to stop the drugs by then and I wasn't aware cancer could be so easily dealt with!!