Hi, I just joined and thought I would introduce myself. I am from the US and currently living in the UK, South West London area. I've been here a year and am having to learn a lot to navigate the health care system here, since it's so different!
I was diagnosed with Crohn's about 15 years ago. After my first flare up, I stayed in remission for 7 years with Asacol. Yay! Then I started having children, and between the pregnancies, weaning and sleep deprivation, I have been having lots of flares for the last 7 years, bouncing on and off Prednisone. Interestingly, I never had flare ups while breastfeeding, but as soon as I started weaning my babies - BAM! So, long story short, as soon as I was done having babies, the GI put me straight on Humira, which was a wonder drug for me.
I had 5 or so months there where I felt totally normal, as though I had never had Crohn's. (And eating LOTS of Indian food - Yum!) Then we moved to the UK for my husband's work. I made my Humira last another 4 months but I eventually ran out. About two months after running out of Humira, I started flaring again.
For the past 8 months, I have been trying different medications. Because Humira is so expensive, it is only allowed if the other less expensive meds are not effective. I had intolerable side effects with Imuran, same with 6MP. Right now I am trying Methotrexate, and I am not having side effects with that, but it's too soon to see if it actually works. My tummy continues to grumble at me.
In the meantime, I'm trying a dietary approach. I tried the SCD several years ago and it didn't work for me. I have a dietician I am working with now, and I am trying the LOFFLEX diet, currently three weeks in. I will be trying to identify foods that cause me problems, which so far has been potatoes, soy and pears.
I've been a vegetarian for 21 years, but that may have to end if I prove to be intolerant of more vegetarian sources of protein. That will be another hurdle to overcome. My brother was just diagnosed with Crohn's a few months ago, and he is a huge meat-eater. His doctors told him to stop eating red meat, so does that mean that he and I should switch diets?
That's about it. So glad I found this forum, looking forward to hearing from those in the UK. I'm sure I will be full of NHS questions.
Thanks
Mapper
I was diagnosed with Crohn's about 15 years ago. After my first flare up, I stayed in remission for 7 years with Asacol. Yay! Then I started having children, and between the pregnancies, weaning and sleep deprivation, I have been having lots of flares for the last 7 years, bouncing on and off Prednisone. Interestingly, I never had flare ups while breastfeeding, but as soon as I started weaning my babies - BAM! So, long story short, as soon as I was done having babies, the GI put me straight on Humira, which was a wonder drug for me.
I had 5 or so months there where I felt totally normal, as though I had never had Crohn's. (And eating LOTS of Indian food - Yum!) Then we moved to the UK for my husband's work. I made my Humira last another 4 months but I eventually ran out. About two months after running out of Humira, I started flaring again.
For the past 8 months, I have been trying different medications. Because Humira is so expensive, it is only allowed if the other less expensive meds are not effective. I had intolerable side effects with Imuran, same with 6MP. Right now I am trying Methotrexate, and I am not having side effects with that, but it's too soon to see if it actually works. My tummy continues to grumble at me.
In the meantime, I'm trying a dietary approach. I tried the SCD several years ago and it didn't work for me. I have a dietician I am working with now, and I am trying the LOFFLEX diet, currently three weeks in. I will be trying to identify foods that cause me problems, which so far has been potatoes, soy and pears.
I've been a vegetarian for 21 years, but that may have to end if I prove to be intolerant of more vegetarian sources of protein. That will be another hurdle to overcome. My brother was just diagnosed with Crohn's a few months ago, and he is a huge meat-eater. His doctors told him to stop eating red meat, so does that mean that he and I should switch diets?
That's about it. So glad I found this forum, looking forward to hearing from those in the UK. I'm sure I will be full of NHS questions.
Thanks
Mapper