Things are falling into place. I ‘do’ my bag change myself, and have for a while now. I have started to change it when I want to, and know what to do should it require more attention. ( if it gets sore around the stoma or itchy where the base has irritated it.)
For absolutely no reason I can find, the area around my stoma will be sore, also I will get itchy underneath the bag for no apparent reason. All I know is, if I have a good clean and airing, plus use all my potions ,it will improve again and be fine for a while.
The output is another wonder. One minute its thick like porridge (this is the normal output to expect) then it is suddenly very watery or smooth like chocolate. I know it has to do with what I have eaten, but it is difficult to know exactly what. Except when I eat a whole bag of Galaxy counters of course. They tell you to watch or avoid certain foods, and to chew chew chew, that is my new knew annoying word of the month.
We are not supposed to eat veg skins, potato skins, raw veg, mushrooms, sweetcorn, etc… but I have eaten a bit.I remember seeing some fairly large bits of mushroom come out the other end. Very weird, as you can’t feel it actually coming out.
I use disabled toilets when I am out and one is available. I have never had anyone comment yet, but god help them if they do, I will be ready for them. I feel better in them than normal toilets because I have space to do what I need and don’t feel embarrassed ,for many reasons too. Its not just the stoma at the moment. I would also need to use them to change my bag if I need to, I know it would be very hard to do all that in a small cubicle.
I went for a meal with my husband the other day, and I must say, things were fine. I have also been out with my closest friends and all was well.I have managed some alcohol but do get dehydrated much quicker so don’t go too mad. Â Things are on the up… just when I need to go into hospital for my next surgery. Sods law I think it is called. I am not looking forward to it,( who does?) but I know it needs doing. I will be having a perineal proctectomy and stoma refashion. In other words, a barbie bum and stoma re-doing, I just hope I recover quicker than the last one. Don’t think I will be sitting much after for a while, I assume it is a bit like having had a baby with lots of stitches.
I AM excited for it all to be over and I can be normal again, but I also wonder if being normal again is possible. Will I be able to go out without constantly feeling if my bag is getting full, will I forever look down at my tummy to see if you can see anything underneath. I know it seems silly to worry when I am happy to paste it all over the net, but that doesn’t feel like me really. I can tell the story and even post the pics, I can tell my friends ,and show my friends even, but don’t like the thought that people are talking about me in a negative way. I want to tell the world that it is ok and not strange / smelly/ odd, and I know that is what some think as I used to. I want to be able to tell people that it is not always old people who have stomas, and not all stomas are the same.I am trying to embrace my new life because I will go rapidly downhill if I don’t. If I think about my future too much , it can be very scary.
This is me now, and compared to months ago, I am doing well. Fingers crossed…..
You are inspirational. What you say so resonates. I’m more bladder than bowel. Long story but have had tubes from my back to bags, then catheter to bags then intermittent catheters currently on a Suprapubic. All you say is similar not least trying to just be ‘ normal’. Thanks so much.
Thank you so much,yourself and many others have gone through similar things, and a lot of folk would like to know more, so I just think, why not tell them? I hope your ok and getting used to things.x
Infection has hit . Again. But onwards we go …Pilates today that’s a good distraction as long as the tubes don’t fall out of my special EVB shorts. That gave them a shock last time!