I never feel normal :(

[sparkles]

I'd like to start by saying that I really am not someone who usually complains. This post may give off the opposite effect, but I am definetely someone who holds in my emotions. It's not that I don't have anyone to talk to, because even though my family are super supportive I dont feel like I can talk to them because I don't want to worry them, and complaining seems selfish. I've given up on finding friends who care. They're fun and I like them, but I feel like it is pointless to tell them, and the few that I have told end up drifting away....

I was diagnosed when I was 12 with Crohns, and as a result I'm always in the bathroom, can barely eat any foods, and am always tired. Because of that I miss lots of meetups with friends. I'm 18 now and I feel so depressed when my friends tell me about their weekends out drinking and meeting new people. I've never had a boyfriend or a best friend and I don't have many funny or dramatic stories about myself. This makes me feel so boring, and NYE was such a depressing night for me because as usual I spent it with my family at home, and the next day all my 'friends' were having a go at me saying 'you're 18 and you don't even have an ID, what's wrong with you? why don't you go out?'. it seems pointless to explain my situation to them. I don't want to be a crazy teen to goes out clubbing drunk every weekend, but I do want to spend some time outside my room every once in a while. Is that so much to ask?

I also worry about the future. I should be starting uni next year, but I am having a small operation just days before my next set of exams (I am getting my fistula drained AGAIN) so I will be super tired and unable to revise. I am 90% certain that I won't get the grades for any unis, and although I don't mind the idea of a gap year, I can't face looking at everyone's facebook pictures filled with exciting new lives etc. Also in the future that really scares me is the idea of guys. Will they ever love someone with an ileostomy? I've read stories here about people who have, but that's because they knew them before as well. I feel like I must be disgusting for other people and that they won't accept so I'm scared I'll be alone. Is that a stupid thing to worry about?

At the moment my ileostomy is temporary so they've left the colon in, but I think they will remove it by the end of the year because it's barely made any progress in the past 4 years. I think I'm okay with having an ileostomy for the rest of my life, but again, I'm scared everyone else won't be okay with it.

I'm sorry for such a long rant. I didn't expect it to be that long. Thanks for reading if you read up to this point.

 

[PsychoJane]

Hello Sparkles,
Believe me, I know what you are going through as I walked these line of being a teenager, young adult with an ileostomy. I got mine at 14 and during several years I had the same kind of interrogations you are having. I thought I could never be myself and would always have to be perfect and better than anyone to have a chance of having a boyfriend and a "normal" life. I also remember that I would only "tolerate" the fact I had my ostomy, and I could not fully accept it until I got involved in relationship, as if that fear of the possibility other could not accept it was stopping me from fully accepting it myself...

As of today, I accept it and I can tell you that others are able to accept it too. It is not easy at first, especially at your age as the average Joe might not be mature enough to fully get over the fact that it is just a stoma after all. But even at 18, some are more considerate and mature, by experience or just a matter of personality. You will get to recognize the shallow out of the mass, I don't know how I do it, but I usually know it. And the one thing with guys, you don't tell them right away, get them to know you first, but if they are not people that have known you before/during/after, you have to leak some clues of the health issue you had in the past, just a few hints as they get to know you. So when you tell them about your situation, they get to understand better and it does not come out of nowhere. Some guys will be surprise, some other will answer things like, well I have scars too. Or things like "you really think that tiny bag would make me reject you"? And well, you will know. Someone who love will go over it.

I won't lie, it may happens that you get bad reactions. Some people get scare, some guy have ran away and I never heard of them back. Some other did react when I told them when I was your age to then come back to me later and be like, well I'd rather be with a woman like you than with a little princess that just think about herself, etc, etc. Don't get discouraged by one's reaction as there are many that can accept it but as I said, it is a little trickier between 16-22 I would say, then it gets much better.

I don't know if your friends know of your condition? If not, start with them, one at a time, and you will see what are their reactions. I realized that the more knew about it, the more confidence I was gaining toward it.

 

[sparkles]

@psychojane thank you for your post <3 I really do feel worried that guys won't accept me but your advice has made me feel so much better! I hope you dont mind me asking, but are you with anyone at the moment? What do they think of crohns and the stoma? what happenned when those few guys would reject you? Your optimism inspires me

 

[jlanier]

I agree with Jane. I think that it will help you out by just informing them about things one by one. I was recently diagnosed with crohns in august by having to have emergency surgery which gave me an ileostomy. I know that i really know anything about crohns or an ileostomy myself, and it was the same with most of my friends. I am a hair older, but i think that we all have the same general concerns especially when there is a noticeable difference like having a bag attached. I will tell you not to let your ileostomy keep you from anything. People will look if they notice, because its not something they see all the time. However, when i explained things to my friends, and they were able to understand, it wasnt a big deal. They even did things to help me out without me saying anything. I ended naming my stoma, and was able to find humor in a lot of different situations. Being a guy myself i encourage you not to lose hope in them. There are guys out there who could care less whether or not you have a stoma. Fortunately a stoma doesnt really keep you from doing anything. You just have to do them in a little different way.