daughter w/ j pouch on humira. dx'd w/ crohn's post surgery
Hello,
my daughter was diagnosed 1 1/2 years ago w/ ulcerative colitis at the time. She was incredibly ill and her weight dropped to 85 lbs, mouth ulcers covering the inside of her mouth, extreme pain, bloody stools etc... She spent two 6 week stays in the hospital and was treated w/ remicade initially. She bacame so ill that the doctors said she urgently needed to have a procto-colectomy and j pouch temporarily and that she would be "cured"!!! Well that was all we needed to hear. It wasn't until after surgery that the surgeon came out and said if that if she did have crohn's the j pouch would likely fail. This is the first time anyone ever told us that! My mind could not accept that as a possibility. Well, it does turn out she has crohn's, even though the biopsys don't show it her symptoms do, and has a couple more stays in the hospital since having her bag removed. She has mouth ulcers off and on, pouchitis, and a fistula, she is now getting sores on the outside of her mouth as well. She is being treated w/ Humira, initially every two weeks. We went and saw a specialist who made recommendations that I feel her doc has flat out ignored. She recommended that she go to weekly humira shots - her doc says he has never done that and was apprehensive but has agreed to 10 days. and if the humira didn't work we try other remicade again and maybe some combos. She recommended she have an MRI so see if there was an infection brewing begind the fistula causing it to be constantly inflamed - her doc gave her the usual CT scan that showed pouchistis as we all new it would. She had many other recommendations that he has flat out ignored and almost seems bugged by. She is in extreme pain and he is very critical of her taking any pain medication, even belittling her. He tells her she needs to accept her illness (she has!! but she hasn't given up on trying any and all treatment options) and is starting to be pushy about having the bag replaced. I feel they jumped the gun with the initial surgery and now ready to do that again without trying any other treatments. I am so lost and heartbroken for her. She is young, beautiful and SCARED and sick and her life is on hold. She is up all night running to the bathroom and taking sitz baths and in pain all day. I don't know what to do anymore. Any advice would be greatly appreciated. I feel like her doc has given up and just wants to keep her in pain so she will have the bag replaced. I am in process of switching docs but he does see her in between other paitients and she is so sick right now don't know when the best time is. Has anyone had a j pouch later diagnosed w/ crohn's? What treatment worked for you? Any and all advice welcomed. :sign0085:
Hello,
my daughter was diagnosed 1 1/2 years ago w/ ulcerative colitis at the time. She was incredibly ill and her weight dropped to 85 lbs, mouth ulcers covering the inside of her mouth, extreme pain, bloody stools etc... She spent two 6 week stays in the hospital and was treated w/ remicade initially. She bacame so ill that the doctors said she urgently needed to have a procto-colectomy and j pouch temporarily and that she would be "cured"!!! Well that was all we needed to hear. It wasn't until after surgery that the surgeon came out and said if that if she did have crohn's the j pouch would likely fail. This is the first time anyone ever told us that! My mind could not accept that as a possibility. Well, it does turn out she has crohn's, even though the biopsys don't show it her symptoms do, and has a couple more stays in the hospital since having her bag removed. She has mouth ulcers off and on, pouchitis, and a fistula, she is now getting sores on the outside of her mouth as well. She is being treated w/ Humira, initially every two weeks. We went and saw a specialist who made recommendations that I feel her doc has flat out ignored. She recommended that she go to weekly humira shots - her doc says he has never done that and was apprehensive but has agreed to 10 days. and if the humira didn't work we try other remicade again and maybe some combos. She recommended she have an MRI so see if there was an infection brewing begind the fistula causing it to be constantly inflamed - her doc gave her the usual CT scan that showed pouchistis as we all new it would. She had many other recommendations that he has flat out ignored and almost seems bugged by. She is in extreme pain and he is very critical of her taking any pain medication, even belittling her. He tells her she needs to accept her illness (she has!! but she hasn't given up on trying any and all treatment options) and is starting to be pushy about having the bag replaced. I feel they jumped the gun with the initial surgery and now ready to do that again without trying any other treatments. I am so lost and heartbroken for her. She is young, beautiful and SCARED and sick and her life is on hold. She is up all night running to the bathroom and taking sitz baths and in pain all day. I don't know what to do anymore. Any advice would be greatly appreciated. I feel like her doc has given up and just wants to keep her in pain so she will have the bag replaced. I am in process of switching docs but he does see her in between other paitients and she is so sick right now don't know when the best time is. Has anyone had a j pouch later diagnosed w/ crohn's? What treatment worked for you? Any and all advice welcomed. :sign0085:
. Addressing her immune system not being under control would be what the Humira is supposed to be doing, correct? I am going to take a look at the new med you mentioned here. Thank you again. I feel I have found a great place here to FINALLY help answer my questions that are constantly overwhelming me.
