Surgery but not so sick???

My surgeon told me that the #1 reason for opting for surgery is to improve quality of life. Although my UC progressed differently than yours, I opted for jpouch surgery 10 years ago when the last medication for UC was 6MP. Thankfully I had surgery when I did because there is no way, in hindsight, that I would take Remicade, although I know I probably would have tried it back then when I was desperate had it been available. For many of us surgery is elective, I chose it to improve my quality of life. I was sick and tired of UC controlling my life and taking opportunities away from me. These past 10 years have been awesome, my life no longer revolves around knowing where every bathroom in town is when I leave home. I can make commitments to travel abroad and not worry about my health. I no longer take medication and eat what I want. It doesn't get much better than this, for me.

Sue

I don't think it is ridiculous to consider surgery at any point. I have actually heard that surgery is more successful when you have it while you're doing well. I personally wouldn't opt for surgery if I were in your shoes because the reality of surgery is going to the bathroom 6x a day vs. the 1 or 2x you go now. I do think there are some huge benefits to surgery, like not having to take medication but there are also risks, like what if you have Chron's and it comes back or what if you're a person who ends up going the higher # of times a day like 10x? Would you mind that? Is it worth it to get off the meds? In some ways I think it is and in other ways, I don't know. It depends on how you feel. Some people with UC, like myself, feel like crap all the time and I do wonder if maybe I would feel better if I weren't on these meds. Then I have to be realistic and remember that I've felt like crap most of my life, long prior to developing UC so for me, it may not be the solution. There are situations where I would definitely opt for surgery but until those situations arise, I am going to try to keep my colon. Maybe not the best idea but who knows.

Sibby, I have heard that surgery does effect your chances of conceiving. I have also heard many stories of people having healthy babies after having surgery.

I don't think they commonly do a 1 step procedure in the US but there may be some doctors that do it. I wouldn't choose a doctor for this reason, you should look for the best and accept the 2 step if you have to because they say, a good surgeon is detrimental to having successful j-pouch surgery. 3 step is not too common as far as I know, I think you have a bag for approx 2 months and then you get reconnected.

Thanks guys.

Of course I want to improve my quality of life and not have to worry. But with the J-pouch don't you go ~6X a day. That's more than I go now when I am flaring. Is there any urgency whatsoever sue? Still trying to find a toilet multiple times a day sounds like a hassle?

I had surgery because my UC was really, really bad. To the point where I couldn't leave the house so I had zero quality of life. And I bled a lot and was always needing transfusions.

If my UC was like yours, I'm sure I wouldn't have had surgery. Being that I was so sick, surgery has been such a blessing. I go to bathroom now 4-6x a day with no urgency at all.  And no meds to take...yay!

So where it's not ridiculous to consider surgery, I doesn't sound like you are there yet. It is a huge, complex surgery and I would only do it as a last resort.

     It sounds like anxiety plays a big role in your life.  Perhaps if you could get it under control your UC symptoms would improve.  This is only a suggestion.  

      Each one's quality of life issues differ.  I was in a state of denial, thinking "oh my UP (I suffered with ulcerative proctitis) isn't THAT bad".  I would have some days where I felt great, but they were becoming less and less frequent.  I never went 20 - 30 times a day.  My bowel movements were more like six a day on bad days, but the urgency was terrible.  I had port a pots in different rooms because I could not make it to my bathroom and I live in a ranch type home.  I also had some bleeding and cramping. 

     I knew it was time for surgery when 6MP, then Remicade and then Humira...all failed.  I became prednisone dependent.  Prednisone gave me osteoporosis, high blood pressure, chronic insomnia and Type 2 Diabetes.  My GI doctor would not refer me to a surgeon because my ulcerations were confined to my rectum and he just wanted me to try more and more drugs.  I had to look on the internet to find a good colorectal surgeon.  I had surgery on June 28th 2010.  It wasn't easy, but my quality of life is soooo much better. 

     By the way, I had a total colectomy with end ileostomy.  The bag isn't bad at all.  My surgeon said I was not a candidate for j-pouch because of my age (63 at the time), extensive use of prednisone and other health issues.  He said it would be more stressful on my body than open heart surgery.  After my surgery my surgeon said I made the right decision as my rectum was very diseased.

     Good luck to you in whatever you decide to do, but don't suffer as long as I did.

Thank you all for your wonderful replies. I will talk to my GI about surgery the next appt. I am particularly curious about the J-pouch. If it does fail it can always be converted to perm ileo right? For those of you who do have one, how does it feel to go to the bathroom? Is there ever urgency? How long can you hold it once you have the feeling? Do you ever have emergency trips to the bathroom. It seems to me that if you're going 6x a day it's still important to know where all the bathrooms are when out? Thank you guys again. This place is so helpful!

Thanks Sue, you make it sound like a dream :)

I feel totally normal again with my j pouch. I can hold it for hours if I had to so no, I don't need to know where the bathroom is all the time. I don't even think about that when I'm out. It didn't take me long after the final surgery (after I was all "hooked back up") to feel good. about 3 weeks and I was back to my normal routine. Most people have a really good outcome but there are those for some reason who still have a hard time after surgery.

It's really important to find an excellent surgeon who has done many of these surgeries. That is key to having a successful outcome. Oh and it's important too that your dr.'s rule out Crohns . I made sure I had several opinions/tests of my UC that it was indeed UC and not Crohns. The surgery will not serve you well if you have Crohns.

ColitisBoy,

I think you are making the wise choice. I wish you luck with your surgery!

It's not ridiculous to consider surgery but you have to weigh the good with the bad. For example I'm 2 and half years post op and I go to the bathroom 3 to 6 times a day, I still will struggle with pouchitis but its very easily controlled. Yes I'm more energized and able to do what I like, I have alot more control then I did when I was sick, and I have not spent a day in the hospital since my surgery. This didn't come quickly though it was a long tough road especially the first year. Immediatly post op I was still going about 6 to 12 times a day, and it was a major adjustment back into life, I had to set aside a good 6 months just for the surgery because I did it in 2 steps, and I don't think I was fully my healthy self for about a year to a year and half post op. Finally I will probably always go 3 to 4 times a day and when you gotta go you gotta go some days. Its a great option and it saved my life but unless you're willing to take the plunge with no doubts in your mind I wouldn't do it. If UC is taking you away from your family, job, or life do it other wise I would hold off. Who knows when they will find a cure :)

Good luck wtih what you decide. Not an easy decision...esp when your uc is mostly controlled with meds. Your morning routine must be difficult though. Lots of pros and cons to weigh. Good luck. (and ask away if any more questions to us with a pouch)

I personally think that getting your colon removed is too drastic a step for someone whose disease is, as you said, "fairly well controlled with meds." I think surgery is for when the UC is having serious adverse effects on your life, as in interfering with your work or preventing you from taking care of your kids or having a social life. Pain, frequency, urgency, blood and/or diarrhea would be the hallmarks of a surgery-appropriate case, I'd think.