vickyoddsocks
wears odd socks
- Joined
- Apr 23, 2007
- Messages
- 240
Hello lovely people!
Well ive not been on the forum for a while because ive been actually living my life!
I'm 6 weeks post surgery - permanaent ileostomy, and i feel better than ive felt in years! Its difficult to admit that i LIKE having a stoma, but so far....i do!
I spent all my 'diagnosed crohns life' avoiding, dreading and being completely terrified by the word colostomy and ileostomy. I was 100% determined to NEVER have one and i would do everything humanly possible to avoid having one. And that i did. Even if it involved NEVER eating. I remained permanently detatched and ignorant from learning anything about stomas and bags. I just didnt want anything to do with it. Therfore the fear of the unknown was worse.
However the time came where i had NO OTHER choice and i HAD to make the heartbreaking decision to have one. So i read and learnt as much as possible (it is a complicated subject that took a lot of understanding) but as i learnt more about having an ileostomy, the less scary it seemed. The first time i saw a bag in the 'flesh' was suprisingly easy. I sat down with my boyfriend and we looked at them together and were actually impressed at how complex and 'clever' they are.
The surgery itself is by far the hardest part, and once you get past that, the rest, to me, has seemed almost a doddle - well certainly a doddle to what i had to deal with BEFORE my surgery. Yes there are scary moments; the first time i saw my stoma in the flesh and it bled, completely freaked me out, but as soon as i took a different approach to how i saw it, its much easier to deal with. We speak of it as a pet or a person, family and friends ask me how 'R-Patz' is!? I also found a recent ostomy confrence i attended overwhelming, and by the end i became upset, but i learnt SO much at the confrence and met many LOVELY people, all with stomas, and given the chance i would go again tomorrow.
I'm stil learning everyday, but have been fairly fortunate in the past couple of weeks in terms of leaks etc.
But, my god, how fantastic life is. I spent all weekend eating out with my boyfriend and friends, using public bathrooms without shame, having no pain, and being such a more positive and happy person. Energy levels are still holding me back, but i already feel a hundres times better than i did before my surgery - and i still have a lot of recovery to go!
So i just wanted to let you know (and anyone else who was in my situation); having a stoma is NOT what i thought, at the end of the day the bag is a bit of plastic, and id be silly if i let that bother me. So far ive never felt self concious in clothes, it really ISNT that noticeable at all! People just keep remarking on how well i look! So dont be scared if you think you may have to have a stoma. The last thing i wanted to do was to ever regret making the decision to have an ileostomy; and i can honestly say that, so far, i certainly dont.
I have a little question for the experienced ostomates on here: I'm struggling slightly with sore skin around the stoma (as has everyone at some point!) I wear coloplast drainable one piece, in hospital i was given SenSura mouldable rings that i use before my bag and they seemed to help, CERTAINLY with leaks! But i still find that on the 2nd evening, sometimes the 1st (I change my bag every other day when normally) it starts to feel very sore and itchy. Today i got the soreness so i changed the bag, and about 4 hours later ive had to change it agian.
Ive been using some healing powder, the either cavilon or dansac barrier wipes, then the ring,then the bag. But ive still been finding it seeps down the side, ive checked my template size and im confident i have that right (i couldnt go any smaller) and ive been making sure i really take my time (dry etc).
So this time I've changed it, and ive used a dermacol stoma collar (recommended by my nurse, but the last occasions i used it i had leaks) and ive put my SenSura ring on top of it to tighten the seal of the collar. I found before the collar actually kept the output IN rather than out! Ive also trimmed the height of the collar as i felt it was too high.
So im just wondering if this all sounds ok? I changed it about an hour ago, so ill give it overnight to see. I'm going away this weekend with friends, and i obviously dont want to have too many problems while im away. So if theres anything else you guys can advise for the sore skin that would be greatly appreciated!
From a much happier Vicky!
Well ive not been on the forum for a while because ive been actually living my life!
I'm 6 weeks post surgery - permanaent ileostomy, and i feel better than ive felt in years! Its difficult to admit that i LIKE having a stoma, but so far....i do!
I spent all my 'diagnosed crohns life' avoiding, dreading and being completely terrified by the word colostomy and ileostomy. I was 100% determined to NEVER have one and i would do everything humanly possible to avoid having one. And that i did. Even if it involved NEVER eating. I remained permanently detatched and ignorant from learning anything about stomas and bags. I just didnt want anything to do with it. Therfore the fear of the unknown was worse.
However the time came where i had NO OTHER choice and i HAD to make the heartbreaking decision to have one. So i read and learnt as much as possible (it is a complicated subject that took a lot of understanding) but as i learnt more about having an ileostomy, the less scary it seemed. The first time i saw a bag in the 'flesh' was suprisingly easy. I sat down with my boyfriend and we looked at them together and were actually impressed at how complex and 'clever' they are.
The surgery itself is by far the hardest part, and once you get past that, the rest, to me, has seemed almost a doddle - well certainly a doddle to what i had to deal with BEFORE my surgery. Yes there are scary moments; the first time i saw my stoma in the flesh and it bled, completely freaked me out, but as soon as i took a different approach to how i saw it, its much easier to deal with. We speak of it as a pet or a person, family and friends ask me how 'R-Patz' is!? I also found a recent ostomy confrence i attended overwhelming, and by the end i became upset, but i learnt SO much at the confrence and met many LOVELY people, all with stomas, and given the chance i would go again tomorrow.
I'm stil learning everyday, but have been fairly fortunate in the past couple of weeks in terms of leaks etc.
But, my god, how fantastic life is. I spent all weekend eating out with my boyfriend and friends, using public bathrooms without shame, having no pain, and being such a more positive and happy person. Energy levels are still holding me back, but i already feel a hundres times better than i did before my surgery - and i still have a lot of recovery to go!
So i just wanted to let you know (and anyone else who was in my situation); having a stoma is NOT what i thought, at the end of the day the bag is a bit of plastic, and id be silly if i let that bother me. So far ive never felt self concious in clothes, it really ISNT that noticeable at all! People just keep remarking on how well i look! So dont be scared if you think you may have to have a stoma. The last thing i wanted to do was to ever regret making the decision to have an ileostomy; and i can honestly say that, so far, i certainly dont.
I have a little question for the experienced ostomates on here: I'm struggling slightly with sore skin around the stoma (as has everyone at some point!) I wear coloplast drainable one piece, in hospital i was given SenSura mouldable rings that i use before my bag and they seemed to help, CERTAINLY with leaks! But i still find that on the 2nd evening, sometimes the 1st (I change my bag every other day when normally) it starts to feel very sore and itchy. Today i got the soreness so i changed the bag, and about 4 hours later ive had to change it agian.
Ive been using some healing powder, the either cavilon or dansac barrier wipes, then the ring,then the bag. But ive still been finding it seeps down the side, ive checked my template size and im confident i have that right (i couldnt go any smaller) and ive been making sure i really take my time (dry etc).
So this time I've changed it, and ive used a dermacol stoma collar (recommended by my nurse, but the last occasions i used it i had leaks) and ive put my SenSura ring on top of it to tighten the seal of the collar. I found before the collar actually kept the output IN rather than out! Ive also trimmed the height of the collar as i felt it was too high.
So im just wondering if this all sounds ok? I changed it about an hour ago, so ill give it overnight to see. I'm going away this weekend with friends, and i obviously dont want to have too many problems while im away. So if theres anything else you guys can advise for the sore skin that would be greatly appreciated!
From a much happier Vicky!
