So close and yet so far!!

[claudia87]

Sorry but here comes a bit of a self indulgent ranting....

I've just come back from another week in hospital (thats 2 separate stays in the past month) and I feel a bit defeated.

I've had a temporary Ileostomy since March which was only meant to be for 3 months. Then it became 6 (I'm still not entirely sure why as I'd had no symptoms to put surgery back) and now just a month before my appointment with the surgeon I've developed a stomach ulcer and Crohn's related ulcers in my small bowel which has led to ALOT of bleeding!
Now, after various tests and 3 lots of blood transfusion, I'm back on Pred which makes me feel like a big useless lump of a human being and I'm looking at least another 6 months with a stoma (something I'm not coping very well with).

I know I shouldn't complain because it could be so much worse and so I tend to keep my frustration bottled up but I'm 24 and I feel like I'm getting left behind. All of my friends have flats, relationships, are getting promotions and generally living a normal life but I'm still living with mum and barely leaving the house except to go to the doctor or supermarket :frown:

Does anyone else have times when they feel completely stuck?

 

[scottmyster]

HI Claudia, I feel the same way. but, i am 41 but, age doesnt' matter. You suffer in silence and your friends move on. While eveybody is enjoying themselves like going camping and going to parties you have to stay home because you feel too miserable to go anywhere.so , your stuck home by yourself. it is heart wrenching. and you feel frustrated and angry. but, hopefully your sugery will come soon. and it will put you back into the driving seat again, if anything you have to have faith. best wishes:rosette2:

 

[StarGirrrrl]

Oh I totally get where you are coming from, i'm also 24, and my Mum at 54 has a much better life than me!! I am the only one of my friends still living at home, one of the few single people, you get my drift.

My friends take so much for granted, and am dismayed that Mum gets 2 goes at a social life while I haven't got even one, she is even off on holiday soon!

 

[robbo87]

Hi claudia i know exactly where you are coming from. Im 24 and Ive recently had an ileostomy, im not yet back at work, but when i do return i only have a part time job anyway with not much going for it in terms of promotion or working up, im seeing my friends get engaged... get new jobs... get houses, one has just moved to malta with work...and theyve all just been on a holiday that earlier in the year before i was hospitilised i was planning to go on. and just like you im in the house and literally only leave to go to an appt or to just go for a walk simply to get some fresh air and get away from all the frustration of being stuck in the house. Having a stoma and a mucus fistula isnt nice but im trying my best to not let it stop me doing the things i enjoy. I've recently started going swimming and walking, and even tho i dont have much money im doing the best i can to keep myself busy and positive, because otherwise it is only going to wear me down, and its a downward spiral once that starts.

I've spent 4 months in hospital this year and am hoping to have my ileostomy reversed next year that. I am terrified that my old friend crohns is going to turn up and ruin the party...

Anyway i hope things soon pick up for you and that you can have your reversal, and if you need a chat feel free to contact me.

 

[claudia87]

Thanks for the support, Its good to know that I'm not completely crazy and alone in feeling like this. Not that I think its good that other people are suffering too! Oh, you get what I mean...

I tend to be my own worst enemy sometimes. I've cut myself off from friends because I dread that awkward moment and look of pity when they ask 'So what have you been up to?' and all I have to tell them is hospital visits and internet shopping. Not cool.

But I'm feeling more positive today and forced myself out to the shops for a bit of window shopping AND I think I'm finally getting over my ridiculous needle phobia, woohoo! One step at a time I guess

 

[robbo87]

I tend to be my own worst enemy sometimes. I've cut myself off from friends because I dread that awkward moment and look of pity when they ask 'So what have you been up to?' and all I have to tell them is hospital visits and internet shopping. Not cool.

It may not seem "cool" if you haven't been upto the same exciting things as you're friends. But if they are proper friends then they should completely understand what you have been through and will take an interest in how you are doing.

Tbh i've only been home about 8 weeks, but I've done everything I can to make sure I don't lock myself away from the good friends that I have and kept them in the know.

Glad that you are feeling more positive today, and lets hope it stays that way!