Anyone considering or have had surgery (total colectomy)?

You're not supposed to get your life back. Well not in the way you think. I'll tell you the best course of action according to Morpheus in the Matrix.

He said: What happened and what is supposed to happen will happen and there is no other way around it.

So whatever you do now and/or will do will happen how it is supposed to happen. So carry on and see where the rabbit hole goes.

A lot of people want to hold on to their body parts for as long as possible, even if it means living in misery for the rest of their lives. And, surgery scares the hell out of a lot of people anyway.

Thanks for positive input. Very interested in the J-Pouch surgery but have been told about the risk of infection. What has been your experience?

Surgery is scary and who wouldn't want to avoid it? I still remember how wonderful it is to wake up feeling great and wanting to do things. I'm hoping for that feeling again and don't want life to pass me by. The struggle I have is making the decision to "just do it".

Understand about the concern on diagnosis. There is a new blood test my GI sent to a company called "Prometheus". The result is supposed to be 95% accurate. The report has 3 options: UC; Crohn's, or Unable to determine.

The word I should have used is "leaking".....make sense?

Just wanted to throw in my very positive experience with surgery and with my ileostomy. My UC - which has been symptomatic for around 15 years- was almost always mild but I never enjoyed much in the way of full remissions and eventually the pain, fatigue, and too frequent needs for higher dose pred for flares caused me to become fed up. I've said it before and I'll say it again, that for me, personally, the hassle and inconvenience of an ileo is about the same as the hassle and inconvenience of wearing a wrist watch or shoes as opposed to having nothing on ones' feet or wrist. Except that no one can ever see the ileo in my case, unlike footwear or a wrist watch.

One thing I absolutely love about the ileo is that there simply is no need or issue, ever, of having to "hold in" or control ones continence- you empty it when its convenient, period- hours and hours if you want to, no biggie. I remain eligible for a jpouch but because my ileo works so well for me, I literally have no interest in risking those extra surgeries- I know that most jpouchers love their jpouches and truly, more power to them, but I merely wanted to point out that the end ileo is a great option too whether one isnt interested in a jpouch, or one isnt eligible. The end ileo should not be confused with the temporary loop ileo that most jpouchers have in between surgeries, which is functionally hard to manage, and which tends to give ileos a bad name.

As for quality of life, it is for me tons better even than in my semi-remissions, and though I was kicking and screaming anti-surgery for many many years, I truly now wished I had done it years earlier, something I never thought I'd say but seems to be common for all the surgery types.

3.5 mos after my surgery, my wife is now amazed at how Ai spontaneously laugh, smile, and joke throighout the day- something that was rare indeed in my UC years. As for physical activity, I am now back in the gym, biking, and playing 3 hours of tennis in a row without any issues, and ditto for travel and dining out.

Post Edited (Probiotic) : 8/19/2013 8:10:22 PM (GMT-6)

Well, I had step 1 of a 3 step jpouch surgery and have decided that I have zero interest for now, and perhaps forever, for the remaining two steps. I was told to do it in 3 steps because at the time there was a little (just a slight doubt, not a strong one) uncertainty as to whether perhapsit was crohns, but post colectomy they are rather positive it was UC all along (not that docs truly have a clue what IBD really is, lol). I also liked 3 steps though because it gives one the chance to "test drive" an end ileo which is what is sometimes called a "permanent ileo", and for me the 3 step was a bit if a blessing in disguise methinks.

Basically, in 2 step jpouch surgery one gets a temporary loop ileo for a few months while the constructed jpouch heals, and then one gets takedown. In 3-step you get an end ileo, then a few months later they create a jpouch and the end ileo gets swapped for a loop ileo, and then a few months after that comes takedown. I still have a rectum but have no plans for that as it has, knock on wood, had noissues for me at all since surgery, and theoretically I could get a jpouch via 2 more steps up to about ten years from now if I ever change my mind. I am a bit of a freak but I just have zero interest in pooping out of my butt again, what can I say, lol.

Guessing the 3 step allows for faster recovery? How was the surgery performed....laprascopic(sp) or the traditional way? How long was your hospital stay and recovery?

Worthit- mine was laparoscopic with hand assist. My hospital stay was 3 days including surgery day but then I developed an ileus (gut went asleep again- oral narcotic meds caused it methinks) and ended up getting readmitted for another week. End ileo and loop are literally like day vs night- completely different planets.

Was one of your issues that the stool was loose?

worthit1998 said...
I was told placement of the stoma was important. What issues did you have with the loop?

the issues I had with the loop was bad skin irritation around the stoma because my stoma was flush to my skin and it should stick out a bit. Also the output from a loop is very liquid so it ran like a faucet all the time. It was just temporary for me so I just grinned and bared it until my reversal. Having a stoma nurse to go to for help is important. I didn't have one because I just didn't know any better at the time. I learned so much for these forums so keep reading and doing your homework.

I considered surgery when I was flaring up. It's a good option if you can't get a flare up under control... way better than living with uncontrollable UC. I am thankful that I didn't have surgery. Although it's better than having uncontrolled UC, I personally don't think it's better than being in remission. Of course, remission is usually a temporary condition and the finality of surgery is, in some ways, better than the unpredictability of having UC, even if it's in remission. The thing about surgery is that you will never be back to "Normal". According to people who have had surgery, there are some huge advantages to having a pouch - it takes some getting used to but once you're healed, emptying your pouch is simple, quick and feels natural. The problem I see, it going to the bathroom 5 or 8x a day. I go once a day now, i can't imagine choosing to go 6x a day for the rest of my life. If I were flaring up and going 20x a day, i would consider it again but not unless nothing else worked for me. It would have to be my only option. I am not opposed to having surgery at all either. If it were a breast lump or lipo, I would do it in a heartbeat. Some people are scared of surgery, not me. I am scared of colon surgery specifically because no matter how well the surgery goes, you will have new plumbing and you never know how it will work for you. I've seen a few people mention not being able to urinate after surgery or having the nerves in their anus not work correctly. it just scares me.