Struggling with Ileostomy Issues After Surgery Failure

Hi guys,
I have had an ileostomy 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 too fat and that I needed to be down to 175 lbs before he would do it again. I recently got the lap band done and have lost 50 lbs...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 it's different. I was molded the other day because the stoma hole for the outputting of waste 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 from leakage that it weeps. Those appliances lasted one day each. I just put my last one on yesterday, and it is now leaking. I am at my wits' end! I called my stoma nurse, and she won't bring me in to try another temp appliance. Her advice? To put a zinc oxide barrier on the skin around the stoma...then cover it 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 bedridden because I cannot walk around with a wide-open stoma. And she said I should only eat yogurt, pudding, ice cream, and an occasional banana 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 out, but 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 afterward. 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 too 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 malnourished 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!

Hi Allie,

Are you still seeing the same surgeon? If you are, there's your problem. He sounds like he is blaming his failed surgery on your weight. What BS!  Find out who the top GI surgeons are at Jefferson in Philly. Better still, go up to Mt. Sinai in Manhattan. Get a second opinion from one of these doctors who may even take you on and to put you on the right path. I cannot believe how many ostomates here owe their misery and misfortune to quacks. You owe it to yourself not to settle for second-rate medical care if you can get better. On another note, your son may feel worse if he sees you that way and believes nothing can be done. Good luck!

Prime

Hi, Allie.  Sorry things suck so much for you right now.  I was going to make the same suggestion as Primeboy - it blew me away that he suggested Mt Sinai.  I had one of my resections done there - the Dr. used an old scar from my previous resection.  Did such a great job, that I actually had to show Drs. recently where the scar is, since they couldn't even see it.  The same Dr. took out my gallbladder the following year and did a Whipple procedure on my mother a year after that, when she was diagnosed with pancreatic cancer.  When I was there 15 years ago, there was one wing on one floor just for GI patients.  On the door to each room was the name of the Dr. and almost all the patients were treated by my Dr or one of his partners.  Don't know if it's a no-no on this site to give names of Drs, but guess I'm about to find out.  My GI surgeon was Joel Bauer; sorry, don't remember his partners' names, but I remember thinking that while everything I'd heard about his partners was wonderful, of all of them, I thought Dr Bauer had the best bedside manner.  If he had done my emergency resection 2 years ago, instead of having 3 surgeries in 12 days, the 3rd of which ended in the ileo, I'd bet anything that I would have had one resection and wouldn't have an abdomen that looks like it belongs in a horror movie.  I apologize to the admin if I gave too much info - will know for next time.  Best of luck, Allie.

Oh, girl!  I feel for you!  I agree completely with Primeboy and Lalu.  See another surgeon, get another opinion!  I worked as a medical lab tech for 20 years and I've seen a number of doc's that blamed everything or anyone else for problems patients had after proceedures.  There was a surgeon at the hospital I worked at that was wonderful AND took responsibility for his action.  I just sad he passed away a few years ago.  



I wonder if you have adhesions that are pulling your stoma in.  That would be something to ask about.  



When I was having problems with bad leaking and having to change my appliance almost everyday I call Hollister and talked with a customer service rep who was very caring and helpfull.  I spent a lot of time on the phone with her and she sent me samples of different products and told me how she wanted me to use them.  That was the best phone call I EVER made!  I now change every 4 days and have no leakage.  I don't know what product you use but try their customer service and see if they have any suggestions.  



In the mean time, I know there has to be better surgeon where you live, you just need to find one!  



Good luck!