I shall start by telling about my ileostomy. As I said in the first text I wrote I am not happy about it. It has nothing to do with the bag itself but rather the stoma. For some reason my small intestine was too small to pull enough on top of my stomach, so this meant that the stoma itself is really low and partly even under my skin. Very painful! The surrounding is filled with wounds as the feces get to the skin all the time and no flange/wafer has helped the situation. Now I'm in a good place in the sense that things are getting slowly a bit better with the wounds. But the biggest and most painful is at the opening of the stoma which meand the stool comes to my skin all the time and there is nothing I can do about it. The stinging is crazy and I really can't see myself living with that pain for the rest of my life.
I spent two weeks at the hospital due to my surgery. After first 5 days I had to have another surgery as the surgeons had noticed a hole inside my surcigal scar that was leaking stomach fluids out. So that had to be taken care of. After this second surgery I was horrified to wake up as I nad NG tube down my throat! Man I hate that tube so bad! it's like legal torture and so bloody painful! Anyone here who has had any help with NG tube? Grr it's horrific thing! Though of course it's not really there to torture me but to help, it just normally just makes me feel 100 times worse.
After the surgery itself I was almost painfree, thanks to my anesthesiologist who figured out a way to numb my stomach without using epidural (which I also hate). So I was super happy about that until 2 days after the surgery I was given the permission to eat food... OMG the cramping pain was so bad I don't think I could even imagine anything worse. It was like someone stabbing me with a hot knife. I told the doctors the pain was so bad that if I had a knife on the counter I'd stab myself. Well all the pain meds the gave me did NOTHING for the pain. Because of this I also ended up spending more time at the hospital then I normally would.
Anyway when I was released from the hospital the cramps stopped for a
while and after few days they came back. I also started experiencing
nausea which I still have. All this is normal I'm told... So not to make things too easy I still have really bad cramps every time I eat. And since in my country pain medication (except for ibuprofein or parasetamol) is considered as drugs, they are very rarely given for pain unless it's considered extremely severe. And of course some little cramps in your stomach are nothing, so I should just keep quiet and struggle trough the way I see fit. But the cramp pains are taking every ounce of my energy that I'd need to change my flange 2-3 times a day. If I didn't have the cramps I think I would be a lot more positive about this whole thing even though my ileostomy is not an easy one. But right now I just sleep, try not to eat and change my stoma stuff.
I would so like to be one of those lucky people who say that ileostomy is the best thing that happened to them but I just can't, and that makes me angry too! I feel like a whiny little child with my ileostomy but at least I'm a live! Then again, there are times, when all the pain gets me, that I wish I wasn't :(
At least I have this little girl to keep me busy :)
I really hate my illeostomy and cant get why lot of people love and praise those things. My first surgery was a bad one because the brilliant doctor placed on a skin fold and the stoma went down, kind of sink. Two great drs saved me and replaced it not far from the original place and they put something so the stoma stays out of body. I know you are in a good country Finland? And cant believe that drs in Mexico were able to resite mine and my intestine is short too. My first stoma was a nightmare and killed me psycologically. No one was able to stick a circle : two drs tried, stoma nurse and mom...mom was the one who noticed stoma was on wrong place and sinking and stoma nurse wanted to look for not surgical solution but thanks God my dr allowed me to decide if I wanted surgery and said a big YES. During first stoma didnt want to drink or eat and I almost died after the second stoma surgery so please drink and eat despite pain. I dont know what you think if I get a pic from stoma so your drs see what my guys did and if they could try the same on you. Really want to help and you ate aleays in my prayers because I know how you are suffering. By the way I have a female poodle and she is my company and best friend. She makes all easier.
ReplyDeleteThank you Kari for your lovely message! Yes living with stoma is surely not easy and I can't see many positive things about it, at least for now. I'm trying to stay hopeful though. My stoma nurse is also all the time showing me these great flanges I'd really want to be able to use, but I just can't as I always need the convex :( i do trie to eat and drink, and I think I do even too much, but I trie to do it in the morning so by night time the cramps will be gone. Though the cramps are also getting less and now the medication I have for them is actually working!
ReplyDeleteIf you wish you can send me e-mail here: mollikka2000@gmail.com I'd love to see what they did for your stoma and if that would work for me as well!! Oh and I love poodles... Well I love all dogs :D