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Interesting UC blog--surgery

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Posted 2/11/2010 2:44 AM (GMT 0)
If my daughter does have to have surgery one day, I hope she has the confidence of this young woman. Her story's very interesting.
http://uncoverostomy.com/

(I just gave your post a title--fruitgirl)

Post Edited By Moderator (fruitgirl) : 2/11/2010 9:11:19 AM (GMT-7)

Posted 2/11/2010 1:27 PM (GMT 0)
Terrific blog.  Thanks SO much for sharing!  I've bookmarked it for my daughter to read.
Posted 2/11/2010 4:09 PM (GMT 0)
sorry, I forgot to add a title to this post. wishingtohelp, I hope this helps your daughter. I like the campaign and her attitude is fantastic. Let me know what she thinks if she does read it.
I hope she's well.
Posted 2/11/2010 4:14 PM (GMT 0)
Thanks for sharing...I haven't had time to read much of it yet, but my goodness, is she a pretty girl! I'm not saying, by any means, that folks with ostomies are generally ugly or anything, I'm just saying that she's very pretty.
Posted 2/11/2010 5:25 PM (GMT 0)
I'm definitely giving it a read...the prospect of possibly needing a permanent ostomy is, to me, one of the most terrifying parts of this disease.
Posted 2/12/2010 2:58 AM (GMT 0)
lol fruitgirl.

I've seen this but haven't read it. Maybe I will.
Posted 2/12/2010 5:15 PM (GMT 0)
Not taking anything away from her but its a lot easier going through these things when you look that good. Id love to see her view on things in 10 years when age catches up with her. Interesting read none the less. I wish I had her attitude when it came to dealing with UC.
Posted 2/12/2010 5:27 PM (GMT 0)
What a crazy comment. How in the world does being attractive have anything to do with how one would feel about having an ostomy? So when the woman is 40 or so, she'll be unhappy with the ostomy? Interesting theory though- you ought to shop it around on the ostomy forum, ask how many on there are considered "good-looking", & if they find it easier to deal with their ostomies. 


Posted 2/12/2010 6:01 PM (GMT 0)

I always thought that attractive people would not accept an ostomy very well because they are more concerned about their looks? This young woman really impressed. I had an ostomy for only 3 months and she has accepted hers much better than I ever did.

Posted 2/12/2010 6:07 PM (GMT 0)
I don't think looks have a darn thing to do with how one accepts and ostomy...I think it's what you choose to make of it.
Posted 2/12/2010 6:22 PM (GMT 0)
I agree, this woman went through her teenage years, a trying time for even the healthiest of us, with an ostomy and came out the other end with a fabulous attitude. I think she's a great role model, especially for the young women on this board, who are facing surgery and think that they'll end up lonely trolls afterwards. If my girl has to go down this road one day, I intend to do everything I can to let her know there's nothing shameful or embarrassing about it. I believe I can do this because I truly don't feel that there's anything "disgusting" about wearing a pouch. I know I'm probably an exception though and so I think it's a great campaign. I was looking over the pictures with my daughter the other day and explaining what the bag was and why she was wearing it and how she had to have surgery to feel better. She was asking kid questions like "does she have a lot of bags then so she can change them"? I answered them and she went off to play. The more normal it is, the less difficult it will be psychologically for those who may have to go through it. I really doubt that this woman will have issues with her ostomy when she hits 40, I don't know how she can make it clearer that it doesn't effect her life negatively in any way?
Posted 2/12/2010 6:34 PM (GMT 0)
killcolitis, I think it's great that you're showing your daughter the blog to help prepare her in case she does have to have surgery. FWIW, I don't think a bag is nasty, either....I'm sure it's no worse than poopy diapers, and I deal with a lot of those at the moment! It's not like you walk around smelling terrible and dripping poo if you have one. If I have to have surgery, I'll definitely give the j-pouch a try, but if it doesn't work, so be it, and I'll deal with the ostomy.
Posted 2/12/2010 6:47 PM (GMT 0)
No, I don't think a bag is nasty either, & the post about the way she looks was utterly ridiculous, but I didn't want to be mean. It's more telling as to your own self-esteem, or lack of, Doz79. You could also turn it around & say "Oh, if you're good-looking, you must not be too bothered by crapping your pants every day or so." Anyway- it's very easy to say "Oh, I'll try a pouch & then go to a bag, if need be, no problem!". But it's a whole different story to be told you cannot try a pouch- I *thought* I was ok with a perm ileo, & that was the direction I was leaning towards for surgery, what I spoke with my surgeon about, what was actually scheduled. Then, about a year after I cancelled the surgery I was told "Nope, can't do it, no pouch for you!". Which was devastating! It was like I had to get used to the whole idea of an ileostomy all over again. Now, whatever- if I wind up with one, I wind up with one. Go talk to a surgeon before you say you can deal fine with a perm ileo- it may surprise you. I've yet to read from an ostomate who regrets their decision. Looks aside!
Posted 2/12/2010 7:27 PM (GMT 0)

There are 3 good surgical options for UC patients.  A permanent ileo, a jpouch, and a kpouch.  Neither choice is perfect but there is a better choice for each patient.  I think people falsely assume that the ostomy has the least amount of problems associated with it but it's not true.  Each option comes with sacrifices; it's all about knowing what your lifestyle is and picking the option best geared for that.  An ostomy wouldn't work for me because I am a backpacker and you just can't wear a backpack with an ostomy and deal with bag issues around non-potable water.  But for thousands of people an ostomy is a perfect choice and works for them.  It's really important to research the options and meet people with each of the choices to get a better understandin of what life post surgery is really like.

BTW- A jpouch was my third choice.  At first I was going for a perm ileo and then gravitated toward a kpouch, and after all my research and taking in consideration my lifestyle, I settled on the jpouch.  I

Sue

Posted 2/12/2010 7:30 PM (GMT 0)
Eva, were you talking to me about all that?
Posted 2/12/2010 7:54 PM (GMT 0)
I'm not sure about all of the surgical options but since my daughter's so young, if we do have to consider surgery, we'd probably chose a temporary ileo. which could potentially be reversed later if she so chose. I'm really not worried about the stigma of an ostomy. If I knew my daughter would be without pain and go on with living her life with an ileo, I'd probably do it soon-ish and not worry about trying the drugs for much longer. But it's the process of her going through a major surgery and the potential complications that worry me.
Posted 2/12/2010 9:22 PM (GMT 0)

Eva Lou said...
No, I don't think a bag is nasty either, & the post about the way she looks was utterly ridiculous, but I didn't want to be mean. It's more telling as to your own self-esteem, or lack of, Doz79. You could also turn it around & say "Oh, if you're good-looking, you must not be too bothered by crapping your pants every day or so."

I knew my post would rub some people the wrong way but I base my opinions on my life experiences. We live in a superficial world and outer looks go a long way in how people will react to you or treat you. My experience with not being allowed to use a restroom because Im a guy dressed in work clothes was prime example. If I were a good looking female in the same situation, Im pretty sure Id have had no problem being given the restroom key. How does that one situation effect my self esteem?

You dont have to agree with me but you also cant deny that your self esteem and confidence is effected by how people treat you and you generally get treated a lot nicer if youre good looking on the outside. Reading her blog I didnt see her having to deal with much disappointment or rejection. When I said lets see how she feels in 10 years, I meant after she has more life experiences.

When I was 20, I thought I owned the world and had confidence oozing out my pores. Forward 10 years, a disease and tons of negative experiences.. I think you now know where I am coming from.
Posted 2/12/2010 10:34 PM (GMT 0)
fruitgirl- no, not to you, just talking in general. I just remembered myself saying the same things, that if a jpouch failed, well an ostomy would be alright. But not having that choice really screwed with me mentally.... it's like, an ostomy is everyone's 2nd choice, & if it comes to that, sure we can live with it. But to have it be one's only choice... I just found myself thinking about the reality of having an ostomy entirely differently.

Doz79- I don't deny any of what you said, about confidence, attractiveness, how they realte to self-esteem, etc. I just don't see how any of that is related to having an ostomy in any way. I actually thought Paul made a good point, about how "good-looking" people may have a harder time dealing with an ostomy. Plus, generally no one knows you have one, so I don't see how the general public would treat you differently at all, based on whether or not you have an ostomy. Know what I mean? Maybe when it comes to dating, but if someone wouldn't date you because of that, would you really want to be with that type or person? As far as that particular blog, having to spend upwards of a year in the hospital with Crohns has got to make someone feel disappointment, rejection, etc. I read it more as now, the ostomy is what allows her to live without those feelings, just as a normal person unhampered by day-to-day intestinal issues. I have life experience too, going on 40, & I find the older I get the less looks matter, not the opposite. Me too, though, about oozing confidence in your 20's, & things changing big time dealing with UC. But I think I personally have reached the other side of that hill, and am now on the downard slope- things that bothered me hugely initially- accidents, fistula, etc. now are usually a minor annoyance.

Don't mind me too much, you guys- I've been pretty low lately re. UC- fistula is acting up, irritated & sore & uncomfortable (for the 3rd F-ing year!!!!), Humira is not doing much of a darn thing, have been weighing surgery pros & cons a lot the past week or so. I'm just disappointed. But, life goes on! And if I do wind up with an ostomy, I'll post the hottest pic of myself ever so you can see what a babe I am with a bag! wink

Posted 2/12/2010 10:39 PM (GMT 0)
Ok, I was just curious!
I'm sure I'd be a bit floored to find out that a j-pouch wouldn't work for me (because it's definitely my first choice), but I'd still for sure choose an ostomy over being as sick as I was when I was flaring...I was so weak I couldn't get out of a chair if I was holding my then four-ish month old son.
Posted 2/13/2010 12:08 AM (GMT 0)
Doz, I get you... though my understanding is that other people would be more accepting of it. So her looks would have more of an affect on other people than on her own outlook. I dunno. I think the reason she accepts it so well is because she got it when she was young and she was really open about it. I could never be that open about something, and I like to think of myself as attractive XD
Posted 2/13/2010 1:09 AM (GMT 0)

Eva Lou said...

Don't mind me too much, you guys- I've been pretty low lately re. UC- fistula is acting up, irritated & sore & uncomfortable (for the 3rd F-ing year!!!!), Humira is not doing much of a darn thing, have been weighing surgery pros & cons a lot the past week or so. I'm just disappointed. But, life goes on! And if I do wind up with an ostomy, I'll post the hottest pic of myself ever so you can see what a babe I am with a bag! wink

Hey no worries. Ive been very irritable lately too and tend to overanalyze everything. Coming off of pred for first time in 4 years + work and personal stress has put me in somewhat of a depressed state. Also my bulk is making me feel like a fatty haha.

Your situation does suck. If Remicade didnt work for me, I would be in the same boat as you.
Posted 2/13/2010 1:39 AM (GMT 0)
So Eva Lou, if it's not too personal, why can't you have a pouch? I am assuming that at some point in my life I will lose my colon so I'm just asking to kind of prepare myself for what may or may not happen down the road. No worries if you don't want to explain. :o)
Posted 2/13/2010 1:53 AM (GMT 0)

Thank you! I think this young lady is really couragous. To not only talk about it, but to actually bare it all to the world in photographs must have taken a lot of nerve. I remember when I was told to get mentally prepared for j-pouch, I couldn't imagine how I would ever be normal or pretty again with such a thing. This girl shows that it can be done... she looks happy and beautiful! What a great inspiration for other young girls suffering with UC.

:-) 

Posted 2/13/2010 4:43 AM (GMT 0)
I've had my ileostomy for 34 years due to UC since I was 10 years old. I consider myself to be a reasonably good looking person (esp when I was younger - age has taken over a bit now lol). Having a bag has in no way taken my enjoyment of life away from me(in fact, it allowed me to enjoy life more) and I consider myself old enough to have had a few life experiences. Without my bag, I probably would not have them at all!

As Eva Lou said, no one knows you have a bag unless you tell them. Life is what you make it. If you decide that having a bag is the worse thing that can happen - and act accordingly - then it will be. If, however, you decide that you're sick of living a life running to the loo and hoping you make it on time, taking umpteen dozen pills a day that aren't really helping, living in pain, etc and that a bag will give you freedom from all that, then your attitude will come shining through and others will treat you as the beautiful, healthy, fun loving person you are.

There is no amount of money in the world that would make me go back to my UC days without a bag.
Posted 2/13/2010 5:44 AM (GMT 0)
I have a temporary ostomy right now and if I had to choose between this and UC - I would 100% choose the ostomy!!! It is not that bad at all and I have to agree with Shaz - life is what you make it!

If the JPouch does not work I would not hesitate to go back to the ostomy!

I love this girl's site - good for her!

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