- Joined
- Feb 17, 2012
- Messages
- 1
my husbands struggles..and mine..
My hubby is almost 40. Wehave been together almost 15 years. When we were first marriedhe had very few serious episodes but was on sulfasalizine and prednisone everyday for 3 years. When wegot married he went from 160 to almost 190 all fluid. (He was still handsome with his moon face). Then miracles happened and remission began for 5 years.. then a little over a yr ago he git really sick.in hospitals and e emergency rooms all over the us. We finaaly made it to Chicago..and they found multiple fistulas..we had never even heard of them. They removed all of his transverse colon, all of his ascending colon, part of his stomach, and part of his illeum. But did not have to get a bag. After 8 days in the hospital and 15 staples he was sent home. Only to be readmitted to the local er via another ambulance ..leaking stool from his staples. He was transported back to Chicago for an extensive emergency surgery. This time they left his abdomen open. After another 8 days in the hospital he was sent home..I dropped out of nursing school to care for him, between home health visits. He had a wound vac, a pic line in his left arm.. I had to prepare his TPN bags and iv bags and he didn't eat or drink anything from September til Jan. He went to a whooping 113 lbs but was no longer losing the wt. He had a jp drainage bag that I cleaned and measured a few times a day. In Jan the Dr finally let him eat broth and slowly workup to real food. Took out his jp drain tube and the wound vac removed. He has a huge softball shapped scar that is paper thin and still leaks due to more fistulas that are returning. Surgery. Is not an option for him for a while. And he is now in remicade infussions and oral immuran. This is the last straw for him.. there r no longer any other medications that r workking.. been on asacol..wand they wont touch him with antibiotics or prednisone. He is back to full wt and we r trying organic foods and prcly pear cactus fruits. If that doesn't work ( fistulas r out of control) we read about a study at a universitywith ulceratice colitis patients and hook worms.( it cured some people of their UC) the emotional toll has been e xtreme but Jesus is amazing in all this. His wound. Pads smell horrible and was wondering if I can help him with the odorous the gyrgles and pops all day sometimes erupting and leaking through his. Clothes. I know he is embarrassed as he wont swim
In the pool..how do I helphim? He feels unattractive ..which is soooo not the case! Hes a hottie!
My hubby is almost 40. Wehave been together almost 15 years. When we were first marriedhe had very few serious episodes but was on sulfasalizine and prednisone everyday for 3 years. When wegot married he went from 160 to almost 190 all fluid. (He was still handsome with his moon face). Then miracles happened and remission began for 5 years.. then a little over a yr ago he git really sick.in hospitals and e emergency rooms all over the us. We finaaly made it to Chicago..and they found multiple fistulas..we had never even heard of them. They removed all of his transverse colon, all of his ascending colon, part of his stomach, and part of his illeum. But did not have to get a bag. After 8 days in the hospital and 15 staples he was sent home. Only to be readmitted to the local er via another ambulance ..leaking stool from his staples. He was transported back to Chicago for an extensive emergency surgery. This time they left his abdomen open. After another 8 days in the hospital he was sent home..I dropped out of nursing school to care for him, between home health visits. He had a wound vac, a pic line in his left arm.. I had to prepare his TPN bags and iv bags and he didn't eat or drink anything from September til Jan. He went to a whooping 113 lbs but was no longer losing the wt. He had a jp drainage bag that I cleaned and measured a few times a day. In Jan the Dr finally let him eat broth and slowly workup to real food. Took out his jp drain tube and the wound vac removed. He has a huge softball shapped scar that is paper thin and still leaks due to more fistulas that are returning. Surgery. Is not an option for him for a while. And he is now in remicade infussions and oral immuran. This is the last straw for him.. there r no longer any other medications that r workking.. been on asacol..wand they wont touch him with antibiotics or prednisone. He is back to full wt and we r trying organic foods and prcly pear cactus fruits. If that doesn't work ( fistulas r out of control) we read about a study at a universitywith ulceratice colitis patients and hook worms.( it cured some people of their UC) the emotional toll has been e xtreme but Jesus is amazing in all this. His wound. Pads smell horrible and was wondering if I can help him with the odorous the gyrgles and pops all day sometimes erupting and leaking through his. Clothes. I know he is embarrassed as he wont swim
In the pool..how do I helphim? He feels unattractive ..which is soooo not the case! Hes a hottie!
