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Posted 6/4/2005 2:30 AM (GMT 0)
I have recently (5 mths) broken up with my boyfriend of two and a half years. We're still best friends but I miss the companionship. He was the first guy I ever had that wasn't scared away by me getting sick let alone having a ileostomy. It never bothered him. However, I'm really worried about finding someone who will be as understanding as he was. I just hate being alone.....I have amazing friends but it's not the same.   Jenn
Posted Yesterday 5:53 AM (GMT 0)

i'm 31 and have lived with an illeostomy since i was 17 because of crohn's disease. i understand completely what you are going through. i have had a few girlfriends who i have shared everything with and was not scared away. but even if they are not scared away i feel that this ostomey has created a psychological block for me. i seem to be the one who can't get around it -not them. if you have questions or just want to chat- write me back. i'm still struggling to accept what crohn's has left me with so i understand the loneliness it can bring about at times.

Posted Today 3:04 AM (GMT 0)
hello my name is zander i come from edinburgh scotland i am 19 and i got my first colostomy on my first birthday because of chronic neureal displasia (sorry if i spelt that wrong) and i think it is very hard meeting people but i am lucky i have been going out with my girlfriend for 11 months now but i always feel awkward when im in bed sleeping and things like that incase my stoma bag comes off but all she ever says is that it is ok but in my heart i dont think she is really ok with this and i love her but hate what i have got but i have to live with it and sometimes when i sit by my self and think all i can think about is lonelyness so jennpen if you have any questions just either write on this site or email me on [email protected] or add me to msn if you have it because i wouls be more than happy to help you because i have went through what you are going through now.
Posted 1/11/2006 8:07 PM (GMT 0)
     I have heard of ostomates wearing women's tube tops over their pouches.  It would help keep the pouch in place and perhaps you wouldn't seem so self-conscious.

 

Sherrine

Posted 1/16/2006 6:17 PM (GMT 0)

Hi JennPen,

My name is Ashley. I'm 20 and i've had my ileostomy since I was a week old. I have gone through it all since i've had it my entire life. I was aalwaayys terrified whenever  i met someone new that I liked..i seriously thought if i told them about my bag that they would get disgusted and change their minds on being with me. However..I had 4 serious bf's who I decided to confide in and every single one of them were totaly fine with it. All full of questions because they were so interested, and some of them looked it up on the internet to fully know what I was going through. I am now engaged to an amazing guy and though I still have problems with it (hatting it like hell) he says he will love me no matter what and I know he's sincere.

This is really personal but it may help some people feel better about worrying what others may think. We were making love one day and the clamp actually came off and it was messy. I thought i was going to die...I just started bawling, I couldnt even look him in the eyes. He promised he would close his eyes while i got up to go clean up and he did. When i came back i just curled on a couch and cried some more and he quickly cleaned up then came back and hugged me all night because he knew how embarassed i was even though it didnt bother him in the least. HE was actually worried that I would leave HIM. Crazy man. Anyway he offered to clean the sheets while i layed down but i didnt make him do that.

Sooo moral of the story is..I think it bothers us a hell of alot more then it bothers anyone else. I am now in a medical office administration course in college and we've talked many times about ileostomies and such and everyone in the class was so interested and not one bit disgusted..since then i've been a lot more open about myself and less scared to tell people.

My email address is [email protected] , if you or anyone wants to add me to msn i use that too, or just email eachother. Good luck boyfriend searching Jenn I know you'll do just fine!

~Ashley~

Posted 1/16/2006 6:24 PM (GMT 0)
You found an incredible man!
Posted 1/16/2006 6:30 PM (GMT 0)

Thanks Sherrine,

I think I did too! I feel so lucky.

Tomorrow i'm heading to the hospital to get prepped because wednesday I am having surgery. It is possible that I may get my ileostomy reversed after all this time (I really really hope it can be done) If not, I will be getting a new ileostomy because the one I have now is causing a lot of probelms with leaking and abscesses because it is so retracted. The last surgeon that did a revision sutured the stoma to the stomach muscle but everytime Im about to have a bowel movement it just pulls the stoma right in and causes leakage. Anyway, They're talking about removing my entire large bowel because it doesnt really work anyway and if i still have enough small bowel left (i may not because ive had pieces cut off so many times from many surgeries), if there's enough left to reconnect me and there isnt too much scar tissue in my rectum then they will try to reconect me. I won't know until I wake up from surgery though and this is really scary.  I dont want to get my hopes up (which i pretty much already did) and then wake up with a new ileostomy that i really don't want. Either way my life will get better and easier with either surgery but i pray to god that i can get it removed for good.

Ashley

Posted 1/16/2006 6:46 PM (GMT 0)
     Ashley, if it turns out that you need a permanent ileostomy, it isn't the worst thing that can happen.  You didn't have the "pleasure" of living without the pouch and running to the bathroom approximately 25 times a day and worrying about having accidents due to Crohn's disease.  Of course I wish none of this happened to me but I greatly appreciate the fact that there was something they could do for me.  If I was born earlier, I most likely would have died and that probably would have happened to you too...without the chance at living, in your case!  I realize your reason for the ileostomy is, most likely, far different than mine. I found that just being thankful for being alive and able to enjoy life helped me a lot.  I didn't dwell on the appliance.  You have the added bonus of having a really great, understanding man by your side.  Many ostomates would do anything to have that! yeah    So, the point I'm trying to make is that no matter what the turnout of your surgery is, you have a fabulous life ahead of you.  Focus on that and enjoy every minute of it!

 

Sherrine

Posted 1/16/2006 6:57 PM (GMT 0)

Thanks Sherinne,

You're absolutely right and there was a point in my life when i didnt dwell on my bag like this but the way it is right now it literaly controls my life. I cant leave the house for more then an hour without being terrified that its going to leak and i wont be in a place where i can change it. So yes, even if i just get a new ileostomy, my life will be so much better then it is now. It wont be leaking so often and maybe just maybe i will be able to go through an entire hour where i forget that i even have it! It used to be that way for me when i didnt have the problems it's giving me now. It was hard going through elementary school with 'mean kids' though, but now that i'm older and much more open about it it isnt hard like that.

But thanks for helping me remember that there was a point in my life that i could forget it was there. If i do get a new ileostomy i may not get as depressed about it now.

Even if the reconnection doesnt work wednesday, I won't consider it permanent..there are things that they can do now to do a reversal that they didn't have when I was younger, so im sure in another 10 years or so there would still be a posibility that i could get rid of it with new technology and such. The medical world changes drastically within a year even.

Anyway! Thanks again for reminding me it isnt the worst thing in the world and that yes, if i was born with Hirschsprung's disease (that's why i had the ileostomy) any earlier, I probably wouln't have even survived.

Ashley

Posted 1/20/2006 1:08 AM (GMT 0)
Hey everyone!! Thsi by the way is not Ash...It is her bf. I just thought I should tell you that most people if they say they are cool with ostomies it means they are. I don't know how to say things properly on here cus there is no tone as there is in a voice. But It seems to me that people who have had something drastic in their life occur they tend to be the nicest sweetest people.. And well out there searching for that special someone, if they get disgusted or weirded out then they were not worth it in the long run.. So next time just remember as you said, without it you might not have lived and with it you are a bigger person and stronger then all of us due to the fact that you went through it and can still smile...Well the rest of us can only say things.. And if they are not nice just remember where it is coming from. Oh and keep pluggin away cuz good things do happen to those who have faith. As for Ash she will prolly write again but the reversal was done and now comes the recovery.
One last time. You people who have endured so much are amazing and dont ever let anyone tell you any diff.
The bf
Shawn
Posted 5/17/2006 1:59 PM (GMT 0)
So Ash and Shawn, how is it all going?

Update us please!

And Shawn, thanks so much for posting.

I'm getting divorced, my soon-2-b-xd has been the only one who saw me with my bag/scars, etc., and starting to date again is a big issue.  I've got some men friends (just friends!) who say it would be no big deal to them, and it's still hard to totally believe that sometimes.

So thanks for sharing your side of things. :-)

 

Posted 5/25/2006 5:01 AM (GMT 0)

Hi Meilandra!

This is Ash, sorry I havnt posted anything in so long i've been a busy girl. My reversal surgery went great, I recovered faster then I've ever recovered from a surgery. The only thing i'm going through now that is really difficult is the constant bathroom trips. When I first got home from the hospital i was going over 30 times a day and sleeping half an hour a night if I was lucky. This was expected but the hardest thing I went through in my life because I was in so much pain at my bottom from going so often, it sounds like nothing but it really was horrible I thought i made the biggest mistake of my life getting the reconect.

Anyway, it has now been 4 months and i'm going about 10-15 times..more on the 10 side most days. It's still a lot but compared to the 30+ and the pain i was going through which i'm not anymore it's heaven! I can now wear clothes that I always wanted to wear and sit out in the sun and get hot and sweaty doing activities without the bag melting off :-) . It's great..and some days I only go about 8 times (those are my best days). The doctors say it can be 6 months to a year until things slow right down to normal which i expected and normal may only ever be 5-7 times a day but that sounds great to me!

It's late and my brain is slowing down so i can't really think of anythign else to write but if anyone's curious with questions or what's going on let me know! Shawn is also doing great..went through very stressfull times seing me hooked up to IV's and such in the hospital then going through such hard times but he of course stuck right by me through the entire thing and we're still doing great. We're looking for a new apartment this summer and probably getting two kitties!! we love cats.

Bye for now!

Ashley 

Posted 5/25/2006 2:38 PM (GMT 0)
Hi Ashley,

I'm so glad to read you're doing ok! :-) I hope your situation settles down soon, I remember all too well about multiple trips to the bathroom and being sore. And I can see that for you, that is still a big improvement.

And I am glad I am no longer using the "back" and am only having to deal with emptying the bag around 5 times a day. I plan to travel to strange places for weeks at a time once a year or so, and my doc and I thought it that even if I could be reconnected, which was doubtful, it would be best for me if I had a permanent ileostomy.

As it turned out, due to three years of severe proctitis, my rectum wasn't usable.

In a period of 9 months, starting 9 months after my second surgery (for rectum removal), I spent two weeks in Asia, two weeks in Italy and Switzerland (and paraglided for 20 minutes off a Swiss mountain, which I could never have done without the bag - I was so wonderfully scared I would have lost bowel control), THREE weeks in India, and 10 days in Mexico.

And this fall I might be going back to Asia for a couple of weeks, and have plans to go to Africa next year.

Love is good!!!!!!!!!!!!!!
Posted 6/3/2006 1:21 AM (GMT 0)
I am replying to the "lonely" topic.  I am VERY lonely and probably will always be.  I am recently separated from my alcoholic husband of 21 years.  My daughter lives with me and I have  a sweet, spoiled dog who loves me, but I feel like eventually I should just go back to my husband to keep from being alone -  I would still be lonely with him but I wouldn't be alone.  I never tell anyone of my ileostomy.  I am 45 years old and have had it since I was 30.  A few family members know, but NO friends or no one at work.  I work in a large factory with a couple of thousand employees and would never , ever tell anyone there, gossip spreads like wildfire.  I have a couple of good friends there, but have never and will never tell them.  Maybe if I was more comfortable with it myself, I could deal with telling other people about it.    I am so lonely.  I would love to just have someone to go eat with or go to a movie or concert with, I would love to have some intimacy sometime, but I really and truly feel in my heart that I could never be comfortable or confident enough to tell or show a man my ostomy.  It disgusts me so I am sure it would disgust a man, most men are so "all about looks" and don't want "damaged goods."      I feel like it is like a weight on me that will never go away.  I am always aware of it, I am always worried about it puffing out or someone noticing it thru my clothes.  I don't even own a dress or skirt or batheing suit anymore.   Sleeping on my sides and back gets old and not being able to put any pressure on it and then having to get up and empty it and not being able to go back to sleep.  I recently went for a massage, my first one and I was so nervous about being on the table on my stomach and hoping and praying it would not pop or start filling up while I was getting the massage.  Many people will say "Quit complaining, at least you are alive!"  Yes, in a way, I agree with them.  I don't have the pain anymore, I am alive and should be thankful.  But on the other hand, I can't help the way I really and truly feel and I have felt this way since I had it.  I think  that is one reason I stayed with my husband for so long, he knew about it and was okay with it.  I was the one ashamed.  I never showed it to him and always kept it covered up.  I never let him see me naked unless I had something over it, hiding it.   I hate the smell it leaves when I use the bathroom, it lingers for so long......any suggestions for this?   I just feel like I will never have anybody else in my life, like I am destined to be alone for the rest of my life.  I think even if someone did ask me out, I wouldn't go because of the fear of them maybe finding out or just having to worry about it.  I have turned into kind of a loner, I guess.  I am friendly at work and people like me, but I feel like I will never have intimacy or close companionship again.  I could go on and on about this but I will stop.  This ostomy just has  a hold on me, it controls everything I do and don't do.  I haven't been on a vacation in years.  I just stay home when I am not at work.  A lot of times I think to myself, once my daughter gets finished with school and gets her a good job and marries and settles down, maybe I will just die and be put out of my misery.  I honestly think about that a lot. 
Posted 6/3/2006 7:27 PM (GMT 0)
LFW - *****PLEASE***** email me!!

[email protected]

Posted 11/9/2006 7:37 PM (GMT 0)
How is everyone here doing, LFW? Ashley?
Posted 11/16/2006 2:05 PM (GMT 0)
Hi folks. I'm a new member though I've had an ostomy for 17 years. I wanted to address this particular question. My ostomy has become just another extension of myself, although it was a long road to get to the positive mental state that I'm in. I'm sure everyone here was afraid that their life wouldn't be "normal" ever again after the surgery. And that's if you consider running to the bathroom every 10 minutes "normal."I actually attempted suicide shortly after returing home from the hospital!! Boy, was I glad it didn't take.  The trick is to not let the ostomy define you as a person. Take an inventory of all your positive attributes and all life's pleasures around you. It sounds warm and fuzzy but it's true.  If you were a warm and caring person before your surgery, then afterwards you'll be a warm and caring person who happens to have an ostomy. Only tell those that you love and trust about your ostomy. Not that it's anything to be ashamed of, but that it's a very personal thing and most people don't understand the mental and physical state your in. Your job is NOT to educate everyone you know about ostomies. But, if you happen to share your "secret" with someone and they have a negative reaction... to hell with them.  They're

emotional and mental growth is stunted and your probably better off keeping a distance from them.

I've read a lot of terrific and useful posts on this site, but this one I had to respond to. Hey nobodies perfect. and whether it's an ostomy or a hangnail if you focus on it too much it will drive you nuts. I've dumped a few friends over the years because of thier childish reaction to my ostomy. but I've also grown closer to friends that are mature enough to realize that I'm still the same old person, imperfections and all!!!

Posted 11/16/2006 10:40 PM (GMT 0)

I'm just responding again to LFW because I haven't been able to stop thinking about her message all day.  LFW, are there any local Ostomy groups in your area??? I used to attend monthly ostomy meetings to keep up with things and speak to people with the same concerns. I was amazed when I saw how many "normal" people have an ostomy. People in all walks of life, and some VERY successful people at that. I saw many georgeous woman that I thought were the wife of an ostomate only to find out that they have one as well.  LFW, I'm sure you aren't even aware that many people that YOU know very well also have one. You might even meet that special someone there as well.  My wife has always been supportive of me. In fact, in many ways my ostomy has made us closer! I had my surgery after I was married. But knowing my wife it wouldn't have mattered to her if I had it before we met. You can't continue to deal with this on your own. But, it's up to you to make things happen.  Find out when and where your local meeting is, buy a new dress, "doll" yourself up, and act like your going to a party.  You will feel great when you get there because you'll see you are really not alone, not by a longshot!!!! It WILL change your life, forever. I promise.

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