It has been a while since I last updated this blog and that's mostly because there has been little to say. Yes, we've been back to doctors both at the pain and the IBD clinic and yes medication has been changed and tweaked, but let's just say that apart from a few good weeks, Sara has felt no better.
It's starting to get me worried.
Now I know that I have to be positive for the family and Sara's sake, but that is very difficult when faced with a daughter who is just not improving. Even the doctors agree that while the blood results look ok (not the best, but not the worst) and the MRI is unremarkable (definitely no obstruction, only a small area of inflammation), the fact is that Sara feels terrible MOST of the time.
She's putting on a brave face and has made it to school most days. She's kept up with her work load and even showed some excitement in the 2 major works she has to complete, but I can see the toll it's taking. You shouldn't have to struggle and make such an effort to get through a day. It's just not right. Everyone agrees with me, but no one seems to have any answers.
Last week the doctors talked to us about possible surgery. A bowel resection and a couple of weeks in hospital. It's something we really have to consider, even if the chances of the Crohns disappearing forever are very small.
Nothing will happen this year, but maybe we will have to think about it for early 2013 in the hope that Sara can start feeling normal again.
At this time I just want to be excited about our upcoming holiday in December, and not have to worry about doctors, medication or surgery. We will go prepared with names of emergency specialist contacts and every possible medication we could need. Just hope that the 3 weeks in paradise provides more relief to Sara than the doctors seem to be able to at the moment.
Sunday, 4 November 2012
Sunday, 23 September 2012
New Medication
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?
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?
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
Thursday, 30 August 2012
Sara - Home stretch
It's less than a week now until I can eat again, which is exciting. It feels like an achievement - I love food, and going eight weeks without it? I didn't know I had it in me, to be honest. Heading back to food feels a lot like heading back to normal, heading back to the ability to leave the house on the weekends and go out for tea and spend summer between the beach and the frozen yoghurt shops. It's not a healthy attitude, but for me food and enjoyment have always been almost inextricably linked and this has been one of the most difficult things I have ever had to do.
That in mind, it's hard to be all that excited when I'm currently working through my preliminary exams. They shouldn't be hard and they shouldn't be stressful and I know, I've been told, people keep telling me not to worry because it's only year eleven and I promise, I understand that. I understand it but it doesn't stop the pressure I put on myself; the pressure to be the person that is pushing through and doing well in spite of everything else. And the truth is, I could have things so much worse and I can't let this stand in the way of doing okay. I'm not allowing myself the same level of stress and preparation I would normally, but I can't just hole up (however much I might feel like it) and not work because I want to show everyone what I'm capable of and I want to be happy with what I achieve, considering the circumstances.
The circumstances aren't great at the moment. For a while, things were looking up. The periods between pain and normalcy were shorter and generally, I was feeling a bit better. Recently, though, it's all gone downhill again. For a bit more than a week now, the pain's been as bad as ever, the fatigue's back as is the joint pain, the difficulty sleeping and the other little symptoms as well. My blood tests, which were before looking loads better - my CRP score, indicating inflammation, was right down - have gone back in the direction they were heading before and I've been put back on the antibiotics I was on in hospital.
So exams aren't going well. Two hours of sitting in exam conditions commonly ends in excruciating pain, and sure, I've missed quite a lot, so I'm not going to do too well (and if my parents start at me again about tutoring, I will scream). I'm still happy with myself for managing what I've managed thus far - two maths exams and an English exam - and I think that I deserve to be happy with that. I don't have another exam now until Wednesday, which is a drama exam, and I'm worried about that - but the thing is, while I should be studying right now, I'm feeling pretty sick. I'm feeling creatively blocked - even writing this has been challenging - and tired and a little bit like curling up and going to sleep. I know it's not an excuse, but it's difficult to keep functioning as normal when I'm just wishing for this all to be over.
I'm tired and I'm miserable and I just want to eat something, and I don't think that's unreasonable.
That in mind, it's hard to be all that excited when I'm currently working through my preliminary exams. They shouldn't be hard and they shouldn't be stressful and I know, I've been told, people keep telling me not to worry because it's only year eleven and I promise, I understand that. I understand it but it doesn't stop the pressure I put on myself; the pressure to be the person that is pushing through and doing well in spite of everything else. And the truth is, I could have things so much worse and I can't let this stand in the way of doing okay. I'm not allowing myself the same level of stress and preparation I would normally, but I can't just hole up (however much I might feel like it) and not work because I want to show everyone what I'm capable of and I want to be happy with what I achieve, considering the circumstances.
The circumstances aren't great at the moment. For a while, things were looking up. The periods between pain and normalcy were shorter and generally, I was feeling a bit better. Recently, though, it's all gone downhill again. For a bit more than a week now, the pain's been as bad as ever, the fatigue's back as is the joint pain, the difficulty sleeping and the other little symptoms as well. My blood tests, which were before looking loads better - my CRP score, indicating inflammation, was right down - have gone back in the direction they were heading before and I've been put back on the antibiotics I was on in hospital.
So exams aren't going well. Two hours of sitting in exam conditions commonly ends in excruciating pain, and sure, I've missed quite a lot, so I'm not going to do too well (and if my parents start at me again about tutoring, I will scream). I'm still happy with myself for managing what I've managed thus far - two maths exams and an English exam - and I think that I deserve to be happy with that. I don't have another exam now until Wednesday, which is a drama exam, and I'm worried about that - but the thing is, while I should be studying right now, I'm feeling pretty sick. I'm feeling creatively blocked - even writing this has been challenging - and tired and a little bit like curling up and going to sleep. I know it's not an excuse, but it's difficult to keep functioning as normal when I'm just wishing for this all to be over.
I'm tired and I'm miserable and I just want to eat something, and I don't think that's unreasonable.
Monday, 27 August 2012
Judy - Exams & thinking about food
Judy
A quick post to let you know that it's only 10 days (yes, that's right) 10 days until Sara can eat again. This must have been the longest 8 weeks I've ever had to live through!
But we're in the planning stages now and thinking about Sara's first few meals. Of course you can't just jump in and stuff yourself, you have to gradually reintroduce food and you have to stay away from certain foods. So as bland as it might sound Sara will be having pumpkin and sweet potato soup with white bread for dinner on September 6th! She is only allowed one meal for the first 3 days and has to stay away from dairy and vegetables, but at least she can join the family table for dinner and at least she'll experience a flavour other than fake banana!
September 6th is also the day that Sara finishes her exams. Sara is not really the type of student to be unprepared for exams, but she has really had no choice this time round. She's missed a lot of school, what with hospital stays, medical appointments and generally not feeling well. I'm really hoping she pulls through but feeling stressed doesn't really help your gut and that probably explains why these last few days she's been feeling terrible.
I'm feeling terribly excited for September 6th! Just hoping that Sara will get through the next 10 days and never have to go through anything like this again.
A quick post to let you know that it's only 10 days (yes, that's right) 10 days until Sara can eat again. This must have been the longest 8 weeks I've ever had to live through!
But we're in the planning stages now and thinking about Sara's first few meals. Of course you can't just jump in and stuff yourself, you have to gradually reintroduce food and you have to stay away from certain foods. So as bland as it might sound Sara will be having pumpkin and sweet potato soup with white bread for dinner on September 6th! She is only allowed one meal for the first 3 days and has to stay away from dairy and vegetables, but at least she can join the family table for dinner and at least she'll experience a flavour other than fake banana!
September 6th is also the day that Sara finishes her exams. Sara is not really the type of student to be unprepared for exams, but she has really had no choice this time round. She's missed a lot of school, what with hospital stays, medical appointments and generally not feeling well. I'm really hoping she pulls through but feeling stressed doesn't really help your gut and that probably explains why these last few days she's been feeling terrible.
I'm feeling terribly excited for September 6th! Just hoping that Sara will get through the next 10 days and never have to go through anything like this again.
Saturday, 18 August 2012
Judy - Results (but why is she no better)
I've left it a while since I last posted, because to be honest I didn't know how to feel about the MRI and blood test results we received last Thursday. Of course I'm delighted that the inflammation in Sara's body seems to have reduced (down from 22 to 4.8) in less than 10 days. It's also great news that there is no obstruction or blockage in her bowel.
But why is it that she's not feeling any better?
Sara could not have been a better patient. She never argues or contradicts the doctors. She tells the truth about how she's feeling and heck she's not eaten for over 5 weeks, you couldn't ask for more. But I understand her frustration because when we see the doctors and she tells them that she is still in pain frequently and nauseous often, they pat her on the shoulder and say "but your blood results tell us another story. Your scan is almost normal apart from some minor inflammation". It's frustrating for me so I can only imagine how condescending it sounds to her.
So here's where I'm at with it all. I'm feeling very optimistic that the medication and "not eating" regime is helping to control the Crohns Disease. I'm hoping it won't be long before the outside of her body catches up and starts feeling better too.
I'm trying to keep things more normal. Well as normal as I can when I have a child governed by a osmolite shake she has to have 5 times a day. Yesterday we had a day in the city shopping. At least we were out and about! I bought a new dress, Ms 13 bought some horrible cardigan in Supre, but poor Sara only ended up buying a present for a friend.
We'll try something new next weekend, your suggestions are all welcome. Remember, they can't involve eating or anything that's too exhausting!
But why is it that she's not feeling any better?
Sara could not have been a better patient. She never argues or contradicts the doctors. She tells the truth about how she's feeling and heck she's not eaten for over 5 weeks, you couldn't ask for more. But I understand her frustration because when we see the doctors and she tells them that she is still in pain frequently and nauseous often, they pat her on the shoulder and say "but your blood results tell us another story. Your scan is almost normal apart from some minor inflammation". It's frustrating for me so I can only imagine how condescending it sounds to her.
So here's where I'm at with it all. I'm feeling very optimistic that the medication and "not eating" regime is helping to control the Crohns Disease. I'm hoping it won't be long before the outside of her body catches up and starts feeling better too.
I'm trying to keep things more normal. Well as normal as I can when I have a child governed by a osmolite shake she has to have 5 times a day. Yesterday we had a day in the city shopping. At least we were out and about! I bought a new dress, Ms 13 bought some horrible cardigan in Supre, but poor Sara only ended up buying a present for a friend.
We'll try something new next weekend, your suggestions are all welcome. Remember, they can't involve eating or anything that's too exhausting!
Subscribe to:
Posts (Atom)