Marcene,
I think our ostomies where right around the same time. I was 6/13/08. I was wondering "how you're doing"? I feel like I've pretty much got the hang of it but every once and a while I wake up in the morning with this kinda -oh, it's still there- sorta feeling. I think some times I have to reality shift and remind myself that this is how it is. For a minute or two that's kinda depressing but then I remember how many other really awful things happen to people, and how you really can live with this. I don't think I could have made the trip south with UC. Mine was so unpredictable. Having the ostomy bag actually gave me some leeway. Even with my out-put being what it, I could still check the weight of my bag and say, eh, I can wait till the next actual stop.

Non-travel question for you-
You say your ileostomy is permanent. I a J-pouch out of the question for you, did you choose against it, do you/will you have a barbie tush?
We left some rectum because my surgery was supposed to be for a j-pouch but I didn't have enough elasticity in my mesentery. So we had planned to leave rectal tissue and go back in after I lost some weight and try again. At the time I simply couldn't mentally deal with the idea of a BAG!!!!! so the pouch seemed like the only hope of normalcy.
Now, with no one bothering what's left or asking it to do anything that left over rectal tissue continues to do what my colon always did- ulcerate and bleed. I've now gotten more used to my dreaded bag, even proved to myself I could still travel, and the thought of more surgeries and the inestimable period of adjustment to the j-pouch seems like a big waste of time. But... I still have to decide to j-pouch or get rid of every last bit of rectal tissue and stitch up my bum.
I think I know which way I'm going. I did 14years of "the bad poops" (name given by my 3 year old niece). And I know that it may be temporary with occasional bouts with the j-pouch. But I kinda like the stability of my bag. It's been a long time since I've done the tight tushy clinch two step. I don't miss it.

What hangs me up is that with the bag there is not even the appearance of normal. I'm not usually one to live for something out in the future that may or may not be, but I'm not in a relationship right now, haven't been in a long time, and don't see one on the horizon- but it's hard not to wonder how some hypothetical guy is gonna deal with Kermit-the-Stoma and all his funny jokes.

I think I've started babbling. I don't have any other girls to talk to about this so....

Anyway, thanks.

LS - I have a perm ileo after failed j-pouch and I think Marcene is the same.

As for the relationship issue, I have the most wonderful supportive husband who does not care one bit about my ostomy. In fact, and somewhat annoyingly, he often "forgets" I have one. Not that I want special treatment, but sometimes it would be nice if he remembered I do have to do some maintanence iwth it (change my appliance 2x a week and that's pretty much it).

His attitude has always been that he needs glasses to see, I need hte ostomy to poop, big deal. I think the most important thing for him is taht I'm healhty.

Also, my ostomy is 7 years old - they quiet down quite a bit, at least my end ostomy has. Hardly ever makes noises any more. Output has stablized too. Plus it becomes so routine you just begin not to care and you stop checking; you just know when you need to empty.

I can understand it must be tough to decide what to do if you haven't even tried the pouch yet. When you try it and it doesn't work for you, it is sometimes easier to accept the ostomy becuase your quality of life goes up so much. I wouldn't have been able to consider having kids with my j-pouch but because of my ostomy I have two beautiful children - son 3 years this month and daughter 6 months this month.

Anyway, I wish you luck with your decision. Let me know if you have questions about life with an ostomy.

Hi L.S.!

I did have my ostomy created/re created in May 2008. I am doing great. I had my j-pouch and rectum removed because of fistula(fistulae?) I technically have crohns but the only chrohn's symptoms I had were fistula. It got to be too much and I am not one that feel comfortable taking pills and drugs to stay healthy. I can't say I have fully come to terms with my bag. I don't mind changing it or emptying it, but it does still bother me that I can't eat certain foods (mainly dairy) without it ballooning up with gas. But, since this is my only real complaint I say life is grand.
I am married and have a 16 month old little boy. It was because of my little boy that I decided to go back to the ostomy. It was one thing to suffer in the bathroom at home while my husband was at work but something else completely to have a child that doesn't understand why you have no energy and feel like crap all the time. I knew an ostomy would give me back the energy I so desperately missed. And it has. I can run and play and hopefully travel as well. All things I could never count on before.
I think that you will find that when the right guy comes along your ostomy will be a non-issue. Like Jill's husband, mine pays no attention and often forgets it is there.

I went to college in Utah. What part do you live in? Living here in South Carolina I still sometimes look for the mountains to know which direction to go...but there are no mountains!

I'm free to talk anytime. Let me know if you have any more questions.

Hey Marcene,
I live in Farmington- right in between SCL and Ogden. I love the mountains. I haven't been in them much in a long time because my UC was getting progressively worse and worser .
It was so insidious I don't think I understood how bad it was. I guess that's were I've come to my decision about whether or not to try the j-pouch. I've already lost too much time thinking about the bathroom, getting to the bathroom , and being in the bathroom. I know that some/many people are happy and functional with their j-pouches. But, I've already seen the toll chronic illness takes on a marriage (divorced). I can't imagine the pain of not being able to truly meet your child's needs. And even if there isn't anyone else- I'm really sick on the bathroom and not going and doing the things I want.
I'm working in an office right now (just started) and I get a little self conscious about any poofiness, I don't really "go" any more than I would just going pee.

Thanks to you and Jill for sharing your experiences with me. Realistically I know I'm not the only one to ever think or feel these things but it's nice to know I'm not alone.

Lani

I actually had my j-pouch and colectomy and all that jazz done in Murray,UT. I think Cottonwood has been since torn down. But my surgeon was at St. Marks. I actually had a college room mate from Farmington.
I too didn't have UC very long before my colectomy. I was in college and I didn't understand the severity and stopped taking the prednisone when I realized what it was doing to my face (moonface). A year after diagnosis it got to the point where I had lost 30 lbs in one month and was running to use the bathroom every 15 minutes. I know that life with my bag will always be better than UC. But it is hard to know you will never be back to how you were before you ever got sick.
It is hard having people not understand what it means to have an ostomy. A j-pouch was a lot easier to mention because there are no visual images. Or no "ewww" factor. I'm still a little sensitive about who knows and who doesn't. I prefer that someone not know about it before they actually meet me. In other words, I want to be the one to tell someone and not let it get passed along as gossip. But there's no controlling that right? Most people find the concept horrifying enough that it is hard for them not to bring it up to others.

Marcene, you may find the gas issue, even with dairy, gets better over time. I hardly ever had issues with gas no matter what I eat and my ileo is 7 years old.

I just want to say that you girls are so amazing and are a tribute to how an ostomy does not define one as a person. I have been struggling with this whole thing for a bit now over which is the best way to go (j pouch or permanent) and I too feel as if I have lost a lot of valuable time with 20 years of UC.
Reading other people's posts really does help
with this difficult decision making process.

Thanks again

kjeane,

I had UC for about 14 years before it tried to flat out kill me last summer. (I did what Marcene did and lost about 25lbs in a month and by the time they put me in the hospital needed two units of blood.)
But it was still almost 14 straight of the "bad poops" and bleeding guts. But my fear of the dreaded bag and surgery kept me from moving on and living for about the last 10 years. Fighting chronic disease and depression I lived by the thought "oh, I'm sure it will get better some time soon".
That is no way to live. It's only on this side of it that I can really see that now.
After changing docs every time someone said surgery I finally had to face up. When I first found this site I had full blown panic attacks after reading just one post. I thought maybe it was a heart attack at first- crazy.
I'm sorry that this is something that you have to face. But know that your not alone. Even though we've never met and probably never will, I frequently say a little prayer for everyone out there dealing with this.
Thank you too.
Lani