Anyone considering or have had surgery (total colectomy)?

I liked mine too....when it was healthy and not riddled with disease! :p

What PSUDOC says about frequency is so true. I (with an ileo) go 5 or 6 times a day but whether it is that or 6-8 or even more it is generally a non-issue because mostly its a matter of emptying only when you need to pee (though as a guy I dint always bother- I often do a "standup" pee in the middle of the night without bithering to ever emoty my pouch until the morning). I dont think many people pee just once or twice a day, and I bet half a dozen or mire is very common if you include pees done for convenience even though there was no actual urge. I cant comment on how long a jpoucher can hold it in after say a big meal but for with my ileo I can eat a meal of anybsize and hold it in for 4-6 hours if I want to, no big deal. My meals usually take about 3 hours to *start* getting into the pouch.

Like marianne said, I liked my colon just fine also, until it turned on me! Then I decided since it didn't want me, why should I want it?
I am also often curious why people will suffer with uc and all the meds when there is surgery. But I do understand that it is scary and people are very against having a bag at times. And some people feel that having surgery as giving up. I don't.
I empty when I pee, very rarely do I go just to empty. Only if I have eaten certain things or lots of something. I do get up in the night, but I get up to pee and then empty it.
Ncot mentioned being dependent on supplies and if there was an oil shortage she couldn't get them. And that's true. But if there was a serious enough oil shortage for that, you couldn't get your meds either. They have to travel also.
It is a hard surgery, its not the choice for everyone. To me, it was actually a pretty easy choice. I have a friend now who is having some stomach problems and she often tells me how jealous she is of me not having to rush to the bathroom.
To me, anyone who has uc or crohns that is moderate or severe should just go ahead and get a consult. Simply because if you suddenly have a flare that turns into the need for surgery you don't want to be scrambling to get a surgeon, emergency surgeriesare often the ones people have the most trouble with. It never hurts to get the info and be established with a surgeon. It might not be as scary to a person who is facing it if they have more info. The friend I was talking about earlier is nowhere near that point she doesn't even know what's wrong with her. But she's a planner so she's asked me tons of questions and looked at pictures and is comfortable knowing that if meds won't fix her, she can have surgery. If its something surgery will fix. It is just a peace of mind thing it may take some stress off of the person dealing with the disease.

Nothing is guaranteed when opting for surgery. Been researching this option for several months, talked with people that have lived with UC for decades; folks that opted for surgery; consulted with my GI and a surgeon. The overwhelming response has been that many who've opted for surgery are happy with the results and are living a more fulfilling life than those choosing to continue with medication alone. There are exceptions, but I found very few. In my CCFA support group, the goal is support and help others live with the restrictions of the disease. However, the Ostomy Support Group helps you learn to understand/live with the ostomy, but also heaps praise about how their lives have improved. I feel my choices are 1) learning to live with the restrictions, or 2) getting a chance at a more normal life by having a surgery with an impressive success rate. The most common thing I have heard is "I wished I'd done it years earlier".

hey pro - maybe you could put some stuff in your sig (well, if you had one ;-))

inquiring noses wanna know -

Stoma placement is important whether your ostomy is temporary or permanent. At best a poorly placed stoma can make it hard to wear your regular clothing... at worst it can mean frequent leaks, skin irritation or even ulceration, and lots of pain and hassle. Don't think that having a temporary ostomy means that you shouldn't worry about where it's placed. If your surgery is elective, you should have the placement performed in advance by your surgeon or a WOCN.

worthit, it sounds like you've done a ton of good research already. I didn't have the opportunity to meet anyone in person who had opted for surgery before I made the decision -- I'm sure it would have been reassuring, so you're a step ahead of the game.

I would... gently... suggest that whether you "like" your colon is not germane to this discussion. "Liking" your breasts has nothing to do with the decision to have a mastectomy. "Liking" your appendix does not affect whether you keep it during a bout of appendicitis. There are too many emotional metaphors heaped onto UC treatment -- that we "fight" our illness, that we "give up" and opt for surgery, etc. I don't think it's fair to look at things that way or to influence others by expressing those views. When something is medically appropriate, when the benefits outweigh the risks, and when your expected outcome is an improvement in quality of life, that is what makes surgery the right decision.

Yup, sorry, that rant was not directed at you

You can be marked with a permanent marker in advance. Sometimes you'll be asked to wear your typical pants to the appointment, to try squatting down, sitting down, etc. There's a woman on the Ostomies board who is an avid hiker and climber so she even brought her equipment to the appointment to make sure the ostomy would be placed so that she could still wear a harness and stuff.

I was marked by my surgeon about 10 minutes before I went into the OR, while I was wearing a hospital gown... and I was REALLY upset about it... until I recovered over the next few weeks and realized my stoma was in the perfect spot. BUT he's a 60 year old colorectal surgeon who has probably made more stomas than lots of surgeons all put together, so YMMV.

Boy I wish I found these forums BEFORE my surgeries. I had no idea where my stoma was going to be until I woke up with it. I loved that my surgeon made me an awesome j pouch but I didn't have much info on a lot of these details going in and I guess I didn't know enough to ask the right questions.

Worthit1998 you are well on your way to being very well informed to make all the right decisions. :)

Stoma placement is important whether your ostomy is temporary or permanent. At best a poorly placed stoma can make it hard to wear your regular clothing... at worst it can mean frequent leaks, skin irritation or even ulceration, and lots of pain and hassle. Don't think that having a temporary ostomy means that you shouldn't worry about where it's placed. If your surgery is elective, you should have the placement performed in advance by your surgeon or a WOCN.

If I was gonna put up with an awkwardly placed stoma, I could probably manage it for 4 months. 40 years (which is what I am facing), however, probably not.

As for the surgery love which goes on around here, I doubt I'll ever feel it. I ain't returned to my pre-Crohn's health; I worry about the wretched, horrible disease coming back; and, lest we forget, I do not like having a stoma. Permanent stomas should have gone the way of the dodo by now, as far as I'm concerned. I'd have an artifical j-pouch or a colon transplant; anything to not wear those stupid bags any more, which only barely work for their intended purpose. Or view the stoma every day. I like horror movies, but doesn't mean I want my own moist, pulsating thing leaking juices on me.

Post Edited (NiceCupOfTea) : 8/20/2013 8:17:14 PM (GMT-6)

I'm looking for information from people that have had the surgery, whether they went for the J-Pouch or the ostomy bag and are they pleased with the results

and:

I was told placement of the stoma was important

Answered both those points.

I'm tired of not even being able to express my opinion on my surgery without people judging for me it. If you don't like it, put me on ignore, but I don't have an adoringly supportive loved one or friends and family and it's not because I keep on whinging to them about the stoma. I don't say anything about it. But I'm not married, I don't even have a boyfriend, and my family are infinitely more interested in their own problems than they are mine.

So I'm sorry for the self-pity, but I'm gonna carry it on a little longer if you don't mind, because I'm enjoying the taste of the whine. Psychologically, if you know you are going to have your stoma reversed in a few months, then you do not like what it is like to be faced with the dawning realisation that this thing is for life - I'm still getting used to that concept at a time when you've already had your takedown and no more stoma. I was so out of it for 2-3 months after the surgery that I sort of took the stoma onboard. It's only in the last 3 months that I've been coming to terms with the past few years and what has really happened and what I'm really landed with. And nobody else understands this, least of all you, but I don't care because if whinging on here is what saves me from feeling like killing myself or lashing out at my mother I will, because in the end I don't have your perfect life, your perfect friends, your perfect boyfriend, and I struggle to get through each in a way that hopefully you never, ever will know, and if that offends your delicate sensitivities put me on ignore, and you'll never have to see another of my whingy posts ever again.

Absolutely nobody understands me and I don't suppose anyone is ever likely to.

And as for surgery, I have a strong suspicion that it doesn't work all that brilliantly for many people, but nobody likes to complain about it, to be seen as "ungrateful". Instead they want to be seen as positive, to minimise the bad things as nothing, and to constantly emphasise how their life was saved. Some people do actually manage to convince me otherwise: Pro, suebear. I think they're true success stories. But a lot of the time, I'm like "yeah, I wonder".

Post Edited (NiceCupOfTea) : 8/21/2013 6:27:47 AM (GMT-6)

Also for your placement, take several pairs of pants that are different styles you like to wear. I took two pair of jeans and a pair of shorts. You can also ask for a sample bag and wear it to make sure the marking is in a good spot.

beatUC,

Yes, depression is a very real outcome of our experiences and I haven't noticed that it's under reported, in fact most of those that experienced it as a part of their journey readily talk about it. In the years I have been active on the boards of surgery patients I have gathered that there are two significant and different causes. For many of us who battled chronic UC for months or years prior to surgery we went into surgery depressed, but thinking the depression was just a by-product of UC, and that surgery would address it. I was in that category. I thought my UC depression was merely a side effect of the years I was on prednisone. Six months post surgery I was in excellent health, but still depressed and sought treatment. It was explained to me that my depression actually started in my 2.5 year illness and surgery didn't correct the depression so I was prescribed an antidepressant. The other type of depression that is seen from those that seek surgery is Post Traumatic Stress Disorder (PTSD). That type of depression is mostly seen in those that had emergency surgery, or had a fast and furious case of UC that resulted in surgery. Both of these types of depression can be successfully treated with a short course of AD therapy.

Sue