So I saw my IBD nurse last week with Dad. (There was a 2 hour delay, dad was not pleased. I told all the nurses to ignore him because he was being a grump lol). I mentioned that I was feeling sick and asked for a pill or something to make the sickness less. She went and got my consultant, The wonderful Dr Darlow. He was immediately concerned that I was having a bad reaction to the meds and asked a few questions. I told him I could deal with feeling sick if it meant that the colitis is not around any more. He said no that wouldn't work, because he originally wanted to keep me on the mercaptopurine for life and increase the dose. He was very sweet and told me that it wasn't my fault because I kept apologizing haha.
So I left the consultant with instructions to stop the immunosuppressants for a few days to see if the sickness stopped. I asked what would happen if I was better and he told me I will have to go on humira or remicade.
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| Humira Injections. |
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| Remicade bag |
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| Remicade Infusions given every 6-8 weeks in 2-4 hr sessions. |
I then had a blood test. Unfortunately once again they couldn't find my vein and after a failed attempt another nurse came and had a poke around. They eventually got all the blood they need (3 tubes) halfway down my arm which was strange.
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| Not impressed lol |
So around the third day off of the mercaptopurine I felt so much better. I even put the bucket away!. Yay.
So it has been a week and yesterday I get a phone call from my consultants (Dr Darlow) assistant. Dr Darlow wanted me to not take any of my immunosuppressants at all. When I said that I stopped them already, she just said it's very very important and I will never again go on them and told me to get rid of them. I now have an appointment in December to discuss what medication I will go on next.
The problem I have right now is I am not on UC medication at all except from asacol which is not enough. I can feel myself getting sicker everyday which kind of sucks. But hey ho. Soon I will be on a new medication adventure.
Mental health wise...I have been feeling a bit down and strange. I went to see a doctor about it but couldn't get my GP. We got sidetracked and I got a flu jab. (Because at the time I was still on the mercaptopurine and that lowered my whole immune system) Anyways he gave me a pamphlet of people to call and basically kind of hinted that it's to be expected with my OCD and anxiety disorder.
I went and saw my GP last week and she was so sweet and understanding. I have an appointment in two weeks with psychiatrist.
Also my sister now has a carer support worker that helps her deal with me lol. Her name is Vicky and I got to meet her and she is so great. Already we have learnt a lot and it's nice that Mandy has someone professional to talk to.
I also have to say I am so incredibly lucky to have the best Sister, Mum and Dad and step-dad in the world ever. Mum makes a fuss of me and constantly makes me laugh and cheers me up. Mum and John has me and Mandy over to theirs for meals and to watch their amazing TV. Dad is constantly there on the phone and when he comes up to ours he runs us here there and everywhere. He took us to wolverhampton to see Incubus (freaking amazing) and waited outside the venue for the whole two hours to take us back and he didn't even complain about me and Mandy singing Incubus songs all the way home lol.
