After over 2 hours at the hospital last Thursday we have a new medication plan for Sara.
It was great to have Michael there. He asked all the right questions impartially in a way I'm not able to do. Basically it was explained to us that Sara's Crohns Disease is complex. Not only because it's a life time condition which her current medications are not controlling but also because of the actual position of inflammation which is where the small bowel meets the large bowel.
Over the last few weeks the doctor's have tested (through bloods) how the Imuran is being processed by her body. It's not good. Everything is going to her liver and not affecting her immune system.
Because you have Crohns all your life, it's important to keep some medications up our sleeves for future flare ups. So Sara was given 2 choices.
1. To continue on with her imuran but add an additional drug (used to treat gout) which redirects the Imuran into the correct pathways.
2. To have a weekly injection (which causes bad nausea) with a medication called methatryxin.
Sara picked Option 1, which we all agreed was the best thing to do. I know that REALLY it was because she didn't want an injection (or to be taught how to inject herself)! But also because she's already feeling nauseous, and we don't need to add to that.
By taking Option 1, it means that we absolutely eliminate Imuran from the mix of medications available. And if this works, it's the least intrusive method of controlling the Crohns.
Also it was felt to control her pain better, she should go back on the dreaded steroids. We are all really miserable about that but hope it helps with the pain.
So fingers crossed. After $150 spent at the chemist in a week, something has to work in our favour doesn't it?
Sunday, 23 September 2012
Tuesday, 18 September 2012
Lots To Catch Up On - Judy
It's been a while since I last blogged, so there's a lot to catch up on.
There have been more hospital visits. Sara has started eating again. There's been a visit to the pain clinic. And today we are going back to the IBD clinic to hopefully make some decisions about Sara's next phase of treatment.
We're not really keen on the next phase of treatment which is an infusional drug called infliximab. But we've heard good things about it and we hope it will mean Sara can start to lead the life of a normal 16 year old. She's had all the preliminary tests which include a chest x-ray and TB test. All were fine, so really now it's up to the doctors and the blood results. That goddamned CRP which I have nightmares about is slowly creeping up again, so I'll just have to be patient and wait to hear what the team think.
This time however, I'm taking some reinforcements (namely Michael my husband and Sara's dad), there is something to be said for having an assertive male deal with the doctors. He is able to get responses and answers that would not be given to either Sara or me. So it's an attack on all fronts today.
I'm sure Sara will tell you what it's like to eat again after 8 weeks, the pleasure and the agony of ongoing stomach cramps and nausea. Her face as she sipped her first glass of apple juice was something to be seen! I will never forget how happy we all were to have her back at the dinner table and eating with us as a family. Even though things are really nowhere near back to normal. It felt like we were headed in the right direction.
It was also suggested to us by the pain clinic that maybe there was more going on than just Crohns. So that's what we need to talk to the doctors about today and I think it's important we are all there to hear what they say.
So just a quick post to let you know how things are going and I'll try and post tomorrow and let you know how the clinic visit went today.
Fingers crossed
There have been more hospital visits. Sara has started eating again. There's been a visit to the pain clinic. And today we are going back to the IBD clinic to hopefully make some decisions about Sara's next phase of treatment.
We're not really keen on the next phase of treatment which is an infusional drug called infliximab. But we've heard good things about it and we hope it will mean Sara can start to lead the life of a normal 16 year old. She's had all the preliminary tests which include a chest x-ray and TB test. All were fine, so really now it's up to the doctors and the blood results. That goddamned CRP which I have nightmares about is slowly creeping up again, so I'll just have to be patient and wait to hear what the team think.
This time however, I'm taking some reinforcements (namely Michael my husband and Sara's dad), there is something to be said for having an assertive male deal with the doctors. He is able to get responses and answers that would not be given to either Sara or me. So it's an attack on all fronts today.
I'm sure Sara will tell you what it's like to eat again after 8 weeks, the pleasure and the agony of ongoing stomach cramps and nausea. Her face as she sipped her first glass of apple juice was something to be seen! I will never forget how happy we all were to have her back at the dinner table and eating with us as a family. Even though things are really nowhere near back to normal. It felt like we were headed in the right direction.
It was also suggested to us by the pain clinic that maybe there was more going on than just Crohns. So that's what we need to talk to the doctors about today and I think it's important we are all there to hear what they say.
So just a quick post to let you know how things are going and I'll try and post tomorrow and let you know how the clinic visit went today.
Fingers crossed
Tuesday, 4 September 2012
Hospital Again
The long saga of Sara's Crohns Disease continues.
Not sure where to start but basically on Saturday afternoon we ended up in emergency because Sara had a sore throat and a fever and couldn't tolerate her drinks.
You know you've been to emergency too many times when the nursing staff all remember you. Luckily Alex The Great looked after us and pretty soon after we arrived Sara was admitted, into the same ward and the next bed.
It was decided that Sara should be on bowel rest and nil by mouth again until she was feeling better. So in went the drip, 2 different types of antibiotics and loads of anti nausea and pain meds.
Yesterday it was decided that Sara could eat again. It was so exciting to watch her having her first sip of apple juice and the thought of never having to have another one of those evil drinks. When I came in before work this morning she looked fine. She'd had apple juice, custard and a piece of bread for breakfast. The doctors were optimistic and talked about coming home this evening.
Unfortunately there was a miscommunication. Sara should have started having one meal only and still drinking her osmolite drinks. This was a real set back, Sara had been celebrating not having to drink them again to be told she had to get down at least 5 cans.
I rang the nurse who is in charge of our IBD team and voiced my concern at the lack of communication, and the fact that nobody seemed to take Sara and her pain seriously. So since then we have discussed the next step in terms of managing her Crohns Disease. A drug called infliximab which is done by infusion. Sara has to have a chest xray and a test for tuberculosis. We are pretty sure based on her blood results that the Crohns is still active and not in remission.
As for food. Sara is not tolerating it very well. I was called urgently from work, had to drop everything because she had been vomiting uncontrollably. I am taking tomorrow off in the hope that I'll be able to bring her home.
Keep your fingers crossed for us guys
Not sure where to start but basically on Saturday afternoon we ended up in emergency because Sara had a sore throat and a fever and couldn't tolerate her drinks.
You know you've been to emergency too many times when the nursing staff all remember you. Luckily Alex The Great looked after us and pretty soon after we arrived Sara was admitted, into the same ward and the next bed.
It was decided that Sara should be on bowel rest and nil by mouth again until she was feeling better. So in went the drip, 2 different types of antibiotics and loads of anti nausea and pain meds.
Yesterday it was decided that Sara could eat again. It was so exciting to watch her having her first sip of apple juice and the thought of never having to have another one of those evil drinks. When I came in before work this morning she looked fine. She'd had apple juice, custard and a piece of bread for breakfast. The doctors were optimistic and talked about coming home this evening.
Unfortunately there was a miscommunication. Sara should have started having one meal only and still drinking her osmolite drinks. This was a real set back, Sara had been celebrating not having to drink them again to be told she had to get down at least 5 cans.
I rang the nurse who is in charge of our IBD team and voiced my concern at the lack of communication, and the fact that nobody seemed to take Sara and her pain seriously. So since then we have discussed the next step in terms of managing her Crohns Disease. A drug called infliximab which is done by infusion. Sara has to have a chest xray and a test for tuberculosis. We are pretty sure based on her blood results that the Crohns is still active and not in remission.
As for food. Sara is not tolerating it very well. I was called urgently from work, had to drop everything because she had been vomiting uncontrollably. I am taking tomorrow off in the hope that I'll be able to bring her home.
Keep your fingers crossed for us guys
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