- Joined
- Apr 25, 2014
- Messages
- 3
Hi, very new to all this, my daughter turned 20 in the midst of it all. She started vomiting on 1/2, on and off for 3 weeks, pedi (we were about to exit to adult practice, but because she's special needs, figured we'd call them, hadn't been to the new place yet) said it was viral, after the 3rd week, I insisted on blood work, he looked at e coli, etc, and wanted a stool culture even though there was no reason presenting itself, what came out was pure blood. They called to admit her on 2/2 because her potassium was too low (no word on the bloody mess we sent in too!) and there she stayed for a month.
Her GI doc said it was the worst case she'd ever seen and that she'd probably had it awhile and not noticed/said anything, she went away for a few days and had told us (after a transfusion and still vomiting (now with NG tube to keep everyone out of her stomach, though no solid food since 1/13) and diarrhea every 3 hours with all blood) they were going right to Remicade. While she was gone, the other guy GI person decided to leave her on the 60 mg dose of prednesone because he felt it was working (I certainly didn't!) 2 more days of this and she bleed so badly she needed a 2nd transfusion....she's now had 4 doses of Remicade.
She was initially diagnosed with UC because the disease was nowhere except her large intestines, but her GI doc saw a 1/2" gap in that mess and ran one more test (MRE) and then rediagnosed her with Crohn's.....she got readmitted after being home for 2 weeks because of fistulas and an abscess that showed up on the MRE, week of antibiotic IV, then the surgeons came around, they ended up just 'looking around' and putting a drain in, as he said, he didn't want to make her incontinent the rest of her life (at this point).
Now she's on the 6MP in addition to the Remicade, she's been okay (no outward symptoms) the biggest issues are that she has an incredibly high pain threshold, and I mean if she's in pain and mentioning it, you need to get the morphine. She smiled through the entire time in the hospital, the nurses would fight over who would take care of her, she doesn't have a mean bone in her body, and this is so unfair to her (and to all of your children as well).
She functions as a 10 year or so old child, this is very difficult for her to understand (she hated being naked in front of everyone while in the PICU, needing help in the bathroom, and now having everyone look up her butt with the severe peri anal disease).
They did give her a nice book in the hospital that is written at her level (looks like a coloring book) and that was after I jumped up and down on everyone to make them understand that though she's 20, she's not.
Her doc is wonderful, keeps us very much in the loop, and is 'all over it'. Todl her she was her 2nd mother and first phone call, programmed her cellphone number into her phone.
I'm trying to find some kind of support system for her, either another younger child, or one her age that is 'kind'. She really doesn't understand this and doesn't talk about it. We have to ask every day if anything hurts (and once again, if she said yes to anything, it would be more than any one else could probably stand) and how she feels. Glad there are you over here and hope someone has some suggestions for her. We've totally kept her involved in her care and decisions, we made sure we got all her records/tests, etc. The GI department gave us a nice binder to keep track of everything and to keep everything in.
She already has a milk and soy intolerance and we've cracked down even more on that. She and I read the labels together, she asks questions when she goes out to eat (we have a great staff person for her) and knows that you can't ask the restaurant where they got their bread, so it's better to just not have it (so much soy in everything!!!).
Insurance has not really been an issue, she has private though me/my work, and Medicaid because she is special needs.
She did graduate last year (thank goodness, she'd never have if it was this year) so though she's still in a school based program until she's 21, it's not as serious, so not an issue. She works 2 days, 3 hours each, at Bed Bath Beyond and they have been amazing (been there 3.5 years now, never missed a day until now).
So any advice on any of this, please point me, I'm trying to stay off 'that internet', I'm also in the midst of stage 3 breast cancer treatment (finished radiation in December, now on oral chemo) so when it rains, it pours! I can see this is VERY individual, I've asked if she can ever get off Remicade and the answer has been no, yet I've met people left and right (seems everyone has it once you hear about it) who are just controlling it with diet, or on much lesser meds, or only steroids for the flare ups (we just got her off the steroids after 3 months).
So she's on Remicade, 4th dose is in 2 weeks, 6 MP was 50, now 75 because her bloodwork was okay.....flagyl and cipro, 2x per day each, but she is going to cut one of them back to 1x per day for a few weeks, then reverse that...iron every day, vitamin d 1x per week, miralax every day, she still has the drain in, the surgeon is in no hurry to remove it.
She also has a medical team at Boston Children's and though we didn't go there, we kept in very close touch with them and will be seeing them over the next couple of months (not for GI though).
She has also been involved in genome sequencing at the NIH (looking for the gene for her syndrome) and we've spoken to them about exploring clinical trials if we have to.
Thank you, this is actually a very short version of the last 4 months, but it highlights the more important aspects.....I run the support group for her syndrome (which generally doesn't include crohn's as an issue!) and appreciate any advice you have.
Her GI doc said it was the worst case she'd ever seen and that she'd probably had it awhile and not noticed/said anything, she went away for a few days and had told us (after a transfusion and still vomiting (now with NG tube to keep everyone out of her stomach, though no solid food since 1/13) and diarrhea every 3 hours with all blood) they were going right to Remicade. While she was gone, the other guy GI person decided to leave her on the 60 mg dose of prednesone because he felt it was working (I certainly didn't!) 2 more days of this and she bleed so badly she needed a 2nd transfusion....she's now had 4 doses of Remicade.
She was initially diagnosed with UC because the disease was nowhere except her large intestines, but her GI doc saw a 1/2" gap in that mess and ran one more test (MRE) and then rediagnosed her with Crohn's.....she got readmitted after being home for 2 weeks because of fistulas and an abscess that showed up on the MRE, week of antibiotic IV, then the surgeons came around, they ended up just 'looking around' and putting a drain in, as he said, he didn't want to make her incontinent the rest of her life (at this point).
Now she's on the 6MP in addition to the Remicade, she's been okay (no outward symptoms) the biggest issues are that she has an incredibly high pain threshold, and I mean if she's in pain and mentioning it, you need to get the morphine. She smiled through the entire time in the hospital, the nurses would fight over who would take care of her, she doesn't have a mean bone in her body, and this is so unfair to her (and to all of your children as well).
She functions as a 10 year or so old child, this is very difficult for her to understand (she hated being naked in front of everyone while in the PICU, needing help in the bathroom, and now having everyone look up her butt with the severe peri anal disease).
They did give her a nice book in the hospital that is written at her level (looks like a coloring book) and that was after I jumped up and down on everyone to make them understand that though she's 20, she's not.
Her doc is wonderful, keeps us very much in the loop, and is 'all over it'. Todl her she was her 2nd mother and first phone call, programmed her cellphone number into her phone.
I'm trying to find some kind of support system for her, either another younger child, or one her age that is 'kind'. She really doesn't understand this and doesn't talk about it. We have to ask every day if anything hurts (and once again, if she said yes to anything, it would be more than any one else could probably stand) and how she feels. Glad there are you over here and hope someone has some suggestions for her. We've totally kept her involved in her care and decisions, we made sure we got all her records/tests, etc. The GI department gave us a nice binder to keep track of everything and to keep everything in.
She already has a milk and soy intolerance and we've cracked down even more on that. She and I read the labels together, she asks questions when she goes out to eat (we have a great staff person for her) and knows that you can't ask the restaurant where they got their bread, so it's better to just not have it (so much soy in everything!!!).
Insurance has not really been an issue, she has private though me/my work, and Medicaid because she is special needs.
She did graduate last year (thank goodness, she'd never have if it was this year) so though she's still in a school based program until she's 21, it's not as serious, so not an issue. She works 2 days, 3 hours each, at Bed Bath Beyond and they have been amazing (been there 3.5 years now, never missed a day until now).
So any advice on any of this, please point me, I'm trying to stay off 'that internet', I'm also in the midst of stage 3 breast cancer treatment (finished radiation in December, now on oral chemo) so when it rains, it pours! I can see this is VERY individual, I've asked if she can ever get off Remicade and the answer has been no, yet I've met people left and right (seems everyone has it once you hear about it) who are just controlling it with diet, or on much lesser meds, or only steroids for the flare ups (we just got her off the steroids after 3 months).
So she's on Remicade, 4th dose is in 2 weeks, 6 MP was 50, now 75 because her bloodwork was okay.....flagyl and cipro, 2x per day each, but she is going to cut one of them back to 1x per day for a few weeks, then reverse that...iron every day, vitamin d 1x per week, miralax every day, she still has the drain in, the surgeon is in no hurry to remove it.
She also has a medical team at Boston Children's and though we didn't go there, we kept in very close touch with them and will be seeing them over the next couple of months (not for GI though).
She has also been involved in genome sequencing at the NIH (looking for the gene for her syndrome) and we've spoken to them about exploring clinical trials if we have to.
Thank you, this is actually a very short version of the last 4 months, but it highlights the more important aspects.....I run the support group for her syndrome (which generally doesn't include crohn's as an issue!) and appreciate any advice you have.
