hi guys
I have had an iliostomy after a failed J-Pouch surgery (the surgeon attempted to do it in one step and not 2 and the pouch failed) and have been having nothing but trouble with it since. This is going on 2 years now. After the pouch failed my surgeon said it was because I was to fat and that I needed to be down to 175 lbs before he will do it again. I recently got the lapband done and have lost 50lbs...have 20 to go.
From the beginning there have been problems. I cramp up every time I eat anything. Sometimes the cramps are really bad. What is even worse is that we cannot get an appliance to fit right. I thought I finally had it licked as we finally had one where, if I didn't shower or swim (bathed over the sink and washed my hair over the tub) it would stay for 4 days. Now is different. I was molded the other day because the stoma hole for the outputting of waist is dipped so low that it is trying to go back into my stomach! I have to wait 2 weeks for that new appliance to come so they fitted me with something new for the meantime as well as something to place on the skin under the stoma because it is so burned because of leakage that it weeps. Those appliances lasted one day each. I just put my last one yesterday and it is now leaking. I am at my witts end! I called my stoma nurse and she wont bring me in to try another temp appliance. Her advice? To put a zinc oxcide barrier on the skin around the stoma...then cover it skin with something like Depends cut to fit around the stoma to catch the waste and just leave the stoma open!!! For the next 2 weeks!! I will be totally bed ridden because I cannot walk around with a wide open stoma. And she said I should only eat yogurt, pudding, ice cream, and an occaisional bananna as to keep the output as low as possible.
I am not sure what you guys might be able to do or say to help me outbut I do not know where else to turn. It is bad enough that none of the appliances I have tried in 2 years have allowed for me to get it wet at all and have it still stick afterwards. now this! I also now have a peristomal hernia that gives me almost constant pain. My surgeon will not go in and even put a mesh around it because, again, I am to fat, but he will not give me anything for pain. Do any of you have any ideas? I feel like a monster. And I will become malnurished if I have to go 2 weeks with just eating yogurt.
If anyone has any ideas please reply to this. I am anxious to say the least. I have a 16 year old son...how is he going to feel seeing his mother stuck in bed with an open stoma that always has poop on it!
I have had an iliostomy after a failed J-Pouch surgery (the surgeon attempted to do it in one step and not 2 and the pouch failed) and have been having nothing but trouble with it since. This is going on 2 years now. After the pouch failed my surgeon said it was because I was to fat and that I needed to be down to 175 lbs before he will do it again. I recently got the lapband done and have lost 50lbs...have 20 to go.
From the beginning there have been problems. I cramp up every time I eat anything. Sometimes the cramps are really bad. What is even worse is that we cannot get an appliance to fit right. I thought I finally had it licked as we finally had one where, if I didn't shower or swim (bathed over the sink and washed my hair over the tub) it would stay for 4 days. Now is different. I was molded the other day because the stoma hole for the outputting of waist is dipped so low that it is trying to go back into my stomach! I have to wait 2 weeks for that new appliance to come so they fitted me with something new for the meantime as well as something to place on the skin under the stoma because it is so burned because of leakage that it weeps. Those appliances lasted one day each. I just put my last one yesterday and it is now leaking. I am at my witts end! I called my stoma nurse and she wont bring me in to try another temp appliance. Her advice? To put a zinc oxcide barrier on the skin around the stoma...then cover it skin with something like Depends cut to fit around the stoma to catch the waste and just leave the stoma open!!! For the next 2 weeks!! I will be totally bed ridden because I cannot walk around with a wide open stoma. And she said I should only eat yogurt, pudding, ice cream, and an occaisional bananna as to keep the output as low as possible.
I am not sure what you guys might be able to do or say to help me outbut I do not know where else to turn. It is bad enough that none of the appliances I have tried in 2 years have allowed for me to get it wet at all and have it still stick afterwards. now this! I also now have a peristomal hernia that gives me almost constant pain. My surgeon will not go in and even put a mesh around it because, again, I am to fat, but he will not give me anything for pain. Do any of you have any ideas? I feel like a monster. And I will become malnurished if I have to go 2 weeks with just eating yogurt.
If anyone has any ideas please reply to this. I am anxious to say the least. I have a 16 year old son...how is he going to feel seeing his mother stuck in bed with an open stoma that always has poop on it!