new member considering surgery

Welcome. I don't know of a surgeon in Washington, but I would say to do as much research about the surgery and ask lots of questions. You will most likely have to have an ileostomy (at least temporarily) unless you have a 1 step surgery, but those are rare.

What medications are you on?

I have a j pouch but I did have a temporary ileostomy between surgeries. I love my j pouch and I wouldn't trade it for anything. Now having said that, I know if my j pouch fails me tomorrow I would be fine with a permanent ileo. Anything at all is better than dealing with UC! If you are a candidate for a j pouch, I highly recommend it. Do your research....make lists of pros and cons for both....and if you decide on a j pouch you MUST have a highly skilled surgeon that has done tons of them. Good luck!

Track,
Welcome! Well, you are really smart for investigating first.. and you may or may not have any choice in what surgery you get.. but, if you do, personally, a j-pouch is the way to go! I didn't have to have a bag, I was an immediate reconnect.. SO if you have that option, you may want to take it. There are no supplies, no bags..nothing. Well, that's not entirely true, you will want underwear liners for a little bit as you may/may not leak. I did for a bit..and still do sometimes. But that minor inconveinence is NOTHING compared to the pain I had.
I didn't interview any surgeons, I actually just went with the first one I talked to. HOWEVER, the reason I did this was this was our first conversation:
Dr.- Tell me about your last few months..what have they been like?
Me- told him everything..took like 1/2 hour..
Dr.- Well, the first thing I am going to do for you is give you back your life..you have gone on way to long like this!
Me- I love you!

And that was it, he did some tests, and it was determined that my large intestine died. SO he took it out, and what a difference! I have had other issues, but not from the surgery..
So, hope that helps you..as for your pain, try some heating pads, skip any carbonated stuff (no sodas), watch out for caffeine..skip jeans or pants that are tight, go with sweats if you can..
Hope that helps a llittle!
Good luck :) Hope you are happy with your surgery, and hope you keep lurking and getting answers to your questions!

i love this forum already :), i guess the reason i'm considering an ostomy bag is the convenience of it, i honestly never want to poop out of my butt again... so done with that

but my parents, friends and everyone else keep trying to drill it into me that i will never be able to be intimate with one, they think it's weird that i'm even considering it

my mom had one especially memorable comment, "no woman ever would want to be with a man that had a bag of poop attached to them", i was like "mom, what do you think your butt is?"

i dunno if i'll be able to cope with one but i think i will, and honestly i don't want to be with a girl that couldn't love me with a bag

i swear i'd forego sex for the rest of my life to not deal with this pain, anyway coffee is one of my big loves :/

i've been emptying my bowels every morning so i don't have to go to the bathroom as much

trackrunner12 said...
i love this forum already :), i guess the reason i'm considering an ostomy bag is the convenience of it,

wow. What in the world is going on. "the convenience of it" ? There must be something wrong with me, but how is going from "normal" to having bag supplies, powders, waifers, changing bags every few days, cutting stuff, burping and all the stuff I read on here be called "convenience".

I get it, we're sick, ok, but what is the point of a J pouch then? I thought the point was "convenience over having a bag" . At least that was the reason this procedure was invented.

Look at this bodybuilder. He has a j pouch.

www.youtube.com/watch?v=EDoujZ1K8ww

Some dude, I spend less time changing my appliance and emptying it than I EVER did glued to the toilet with Crohn's. it takes me less than five minutes twice a week to change it and less than two minutes to empty, go pee and wash my hands.......way better than being in the bathroom a half hour at a time just to think you are finished and then run back in there for another marathon session.

No regrets, at all.

First off, you don't always have a bag of poop attached to you! Most of the time it's just a bag!!! I empty mine frequently, every time I go to the bathroom. Tight fitting tank tops work for keeping the bag flat during those times, you can just pull your arms out and push it down your waist for more skin baring but keeping your bag covered. There are all kinds of tips and tricks for keeping it hidden. Tape, belly bands.

Your young, chances are you will meet some girl who has never experienced an ostomy or even know what it is. It's bound to be an uncomfortable subject but as you say if you are drinking and partying, may not be a problem. I just spent two weeks in the Dominican on holiday and met two other couples in the late 40s who didn't know what an ostomy was so I showed them and explained it. All good.

Trackrunner I said the exact same thing you did when I chose a bag, I never wanted to poop again!
It is crazy to think no one will ever want to be with you! Like was said, its not really a bag of poop, I think people have the wrong idea of what it is. I thought it was gross when I first thought of it, having my poop with me. And then my Mom said, well you are carrying your poop around now, its just in your stomach.
The only time you will ever think of it is the few times a day you empty and the once a week or so you change.

Ugh! I know what you mean about your family, specifically your mom not understanding. I had my disease for 13 miserable years and my mom still couldn't accept the fact that I was going to have a bag.

I felt like I made my decision and it took far too long, and all I wanted was support. Rather I got constant questioning and even crying. Yes, crying. Granted, I am not even young. I am married and have a seven year old daughter, so who cares?!?! Isn't it funny that you have to support YOUR mom for YOUR surgery?

What helped my mom was coming to all my surgical consults AND I think most important was her talking on the phone with others who had the same surgery. Don't listen to the naysayers and trust your judgement. You know what's best as you are the one suffering. They can't relate at all and "a bag" sounds so permanent and drastic.

Anyway, I don't know what advice to give vs a jpouch or an ileostomy. I had an ileostomy but I didn't have a choice. My surgery was less than four months ago and I feel great, wish I did it years ago.

Ps, I live in Boston so I don't have any surgeon recommendations.

Best of luck!

Track,
The butt-cleaning issue you have might be because of the uc. And there may be a lot of people with smudgy butts. I've been carrying around a plastic bottle to fill with water and rinse and it works fine.
Point is, a smudgy butt is not a reason to discount having a jpouch. I've had one for one year and I'm very happy. I am also glad, after having had a stoma for 12 months, that I can go out my butt, it feels normal and as weird as this may sound, I enjoy it.
about sex - don't let anyone ever tell you that no woman will want you if you have a stoma and bag. Real desire for a certain person has nothing to do with that. And this may sound like a cliche, but if a woman really cares about you, she will really desire you regardless.
Even after saying that, I still think you should seriously consider the jpouch. And I thnk that if you have a collectomy with end stoma now, you can still decide later on to have a jpouch formed and the stoma taken down 3 months or so later. It's just a matter of three operations in all, instead of two now. Point is, make sure the jpouch option stays open in the future, because you can't know now how you will feel in a couple of years. I personally was greatly relieved not to be sick anymore, but I also really did not want to keep the bag and stoma, even when I had a really good relationship with the stoma.
I also think your whole attitude is fantastic, and my surgeon told me that that is one of the most important things for successful recovery. he "ordered" me to get into a good state of mind before the first operation.
But one thing - ease back on the alcohol and whatever else if there is anything else - at least a month before surgery. All that can interfere with how your body reacts to the anaesthesia after the operation and belive me, you don't want to have a bad reaction to the anaesthesia. Your doing a lot of great sports but now you need to ingest only things that are healthy and going to make you more fit. I was told not to drink more than one glass of wine and nothing stronger, no sleeping pills, etc.

I am from WA and just saw a surgeon at the UW in Seattle. I was very impressed with him. My GI doctors advised me to go to the UW instead of a local hospital to get the best treatment. Good luck!