Well I'm having some hard days again. I just can't believe that after all that persuasion from my doctors and all that reassurance about how my life with stoma would be so much better, all I'm left with is... Well nothing. I can't say my life is any better due to ileostomy and still I'd rather take back my j-pouch though life with it was truly difficult and painful. But nothing has really changed except that with j-pouch I was able to do sports, go swimming and just be and walk like a normal person (as long as there was a toilet close to me!). Now I am unable to bend to any side, I have only two positions to sleep in, I still need to run to the toilet every hour during night time and I still need to know where the toilets are whenever I go somewhere. The worst thing is that I'm not able to use my body at all the same way I used to... I can't move, unless I hold on to my stoma. I can't walk too fast unless I hold on to my stoma. I also try not to breathe while I walk so it would be easier which, as we all know, is quite difficult task so I feel like fainting most of the time.
Also I have noticed that the wounds around my stoma are getting bigger and the big one is also corroding or something, it's becoming more of a hole on the skin and REALLY sore. I just contacted my stoma nurse so lets see what she will say. I'm so afraid this will never end with these wounds, but someone HAS TO figure out someway to help... I do think that it would be a lot easier with the stoma without the wound as it seems to be the one that's hurting all the time even though there hasn't been any leakage on the wound for weeks. The wound on top of the stoma is also pretty painful but not nearly as bad a sthe bigger one. I don't think I'll ever be wound free as the stool comes from under my skin, so that will be a problem for the rest of my life. I'm just worried that things will never get any better until something is done with the stoma itself... But as my stoma nurse said, that would be impossible. That's really not a happy thought as all my doctors were so sure that
I'll get rid of all the pain when I get my ileostomy. Oh well... Never
trust a doctor :)
Not only bad news all the time. I have noticed that all my cramps are now totally gone! It's funny as it has happened so slowly that I haven't even noticed it until yesterday as I ate a BIG dinner and was a bit scared about the pain. Then I realised that I haven't had any pain (from the cramps) for few days. So now I think I can safely say that the cramps are gone, and I'm SO HAPPY about that. Don't need to be afraid of eating anymore. These small joys sometimes seem to be overshadowed by all the bad stuff, but just wanted to remind myself as well, that things are improving, though slowly, veeeery slowly... :D
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