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!
Sara - venting
I suppose the main reason that I haven't written in a while (and why this is going to be a short post) is because I've been feeling quite conflicted.
I've got all these people coming from different directions, telling me that everything looks good. That I should be happy, that I should be feeling better; if my insides are looking better, logic dictates that I am feeling better and everything should be better. It all follows through. The MRI looks better, which means everything must be better.
Problem is, I'm not feeling all that much better, contrary to what the inside situation might suggest. Actually, I'm not feeling better at all. Sometimes, I'll wake up in the morning and I'll actually be feeling okay, and I suppose that's happening a little more infrequently, at best...but eventually, the pain rears its head or the nausea kicks up or the headaches strike. More often than not, I'm exhausted
And it's not going away. It's just not. As optimistic as I try to be, it's hard to keep a smile on my face when I'm sick of feeling sick and I've had it with being frustrated.
Sometimes it feels like doctors will ask me how I'm feeling, but not listen. The other day, at the doctors, the first person who assessed me gave scores out of ten in various areas, like general well-being or life disruption, tens and sevens and fives, and then my main doctor - after seeing my scans - looked through it and said "Make that a 5, that a 2, that, that a .5, that a 0."
It's hard not to feel that I'm being looked at from the inside out and being told how I'm feeling, instead of being asked.
It's not great, but it's been worse.
So I suppose we just keep going.
I've got all these people coming from different directions, telling me that everything looks good. That I should be happy, that I should be feeling better; if my insides are looking better, logic dictates that I am feeling better and everything should be better. It all follows through. The MRI looks better, which means everything must be better.
Problem is, I'm not feeling all that much better, contrary to what the inside situation might suggest. Actually, I'm not feeling better at all. Sometimes, I'll wake up in the morning and I'll actually be feeling okay, and I suppose that's happening a little more infrequently, at best...but eventually, the pain rears its head or the nausea kicks up or the headaches strike. More often than not, I'm exhausted
And it's not going away. It's just not. As optimistic as I try to be, it's hard to keep a smile on my face when I'm sick of feeling sick and I've had it with being frustrated.
Sometimes it feels like doctors will ask me how I'm feeling, but not listen. The other day, at the doctors, the first person who assessed me gave scores out of ten in various areas, like general well-being or life disruption, tens and sevens and fives, and then my main doctor - after seeing my scans - looked through it and said "Make that a 5, that a 2, that, that a .5, that a 0."
It's hard not to feel that I'm being looked at from the inside out and being told how I'm feeling, instead of being asked.
It's not great, but it's been worse.
So I suppose we just keep going.
Thursday, 9 August 2012
Sara - Home at last
Angst warning
Last time I was discharged from a hospital, it was under terrible circumstances. It was in the middle of the night, after I'd been transferred to a transit ward (with only three male patients to keep me company), accompanied by a hastily scribbled script and a promise of discharge papers in the mail. Dressed in my pyjamas and holding a cryptic crosswords book, suddenly I was out with my family in the cold, listening to arguments about "what was best" for me and "we did the right thing"s. And they did. I'm not a passive person but when it comes to medical authority, I listen, and I do what I'm told, and we didn't do that the first time I was in hospital (and so my mother doesn't freak out, I do believe we did the right thing - Mum, no need to stress). It was a weird experience and yes, it left me feeling quite raw and emotional. It's strange to quickly go from being in the constant care of a team of professionals and to have direct access to painkillers and doctors and aid that - try as they might - my family cannot replicate at home.
I'm an over-emotional person at the best of times...and that was not the best of times.
This time around, it was better.
Not just because the hospital was, overall, much better, but because I knew when I was leaving. Instead of being yanked out a night early, I actually stayed in longer than was originally planned. They told me I could leave after my MRI on Wednesday but when I returned from the scan in a wheelchair, retching into a plastic bag and doubled over with stomach pain, it was agreed that another night would probably be advisable. I got spoken to by a clinical psychologist, I saw members of the pain team, the gastro team, my dietician, my nurse for the day and of course the wonderful head nurse of the IBD clinic who holds everything together. I was given scripts, a med chart, blood test forms and some semblance of a plan to continue on after leaving hospital. I had my bags packed and, most importantly, I had time to mentally ready myself for the environment transition.
Once I got back, I didn't have to flip straight into normal life. I went to my grandparents' house and curled up on the couch, watching bad television (apparently "My Daughter is a Teenage Nudist" is a TV show), reading bad magazines and drinking my bad bad bad meal replacement drink. I took a long, hot shower and washed my hair and made the most of finally being able to freely move my arm (now cannula-less). I don't have to go to school tomorrow and can instead ease into action, have some quiet time, recharge.
It's not all good news, though.
I know what the doctors tell me is true, and I'm not one to question medical authority (as I've established), but I feel like we're running on the spot. We're charging into pain medications and anti-nausea ones (including one that's used on Chemotherapy patients) and every kind of drug imaginable and I'm continuing without food for another eight weeks but...for what? Four weeks already and I've noticed no improvement - having just been in hospital, I'd say I'm worse. It's hard to keep motivated to do something that is so difficult when it doesn't seem to be having any benefits. And this is not because it's the non-medication route - if I'd been on a certain pill for four months and it was making no difference, I'd be equally concerned.
All the while, I have doctors telling me that there was a marked improvement on my last CT scan and I just feel as though these insane levels of pain and nausea and discomfort are being rendered invalid by doctors. My inflammation allegedly looked better as of early July, but I feel worse now than I did in early July. Not only that, but the markers in my blood have consistently become higher, so I can't be making it all up; something is not right in my body and I don't feel like we're not doing enough to combat it and I cannot accurately express quite how frustrating that is.
Almost as frustrating is the constant cry of bystanders that they know someone who has Crohn's or IBD and look what cured them! People don't seem to understand that you're never cured of Crohn's, you just go into remission; nor do they understand that while the power of positive thinking or a gluten free diet might have reduced their pain, it doesn't work for everyone, and even when it works, it's usually just masking symptoms instead of treating them.
Sometimes I forget about the pain and things look alright in the world; I can focus on the good things in my life, like the holiday I'm going on come December and the fact that I'm nearly finished school and that I have loving and supportive family and friends.
Sometimes, when the pain is the worst and the fatigue has worn me through and some kind of dark shadow settles across everything I come into contact with, I forget about the good and it terrifies me.
I'm quite all-over-the-place tonight. I suppose it's exhaustion and emotional upheaval and differing circumstances more than anything, but it doesn't feel like that. It just feels like it's getting quite hard to carry all this weight on my shoulders, especially when I'm told that I shouldn't be feeling this way and that there are so many people in the world who have it so much worse than me. I just want to be the selfish one for the moment, as terrible as that sounds, where I can worry about myself and feel justified in my pain and in my sometime misery.
I'm trying not to let my illness become me but when there's so much else encompassed into it, all these weird feelings and so much constant struggle, it's hard.
Last time I was discharged from a hospital, it was under terrible circumstances. It was in the middle of the night, after I'd been transferred to a transit ward (with only three male patients to keep me company), accompanied by a hastily scribbled script and a promise of discharge papers in the mail. Dressed in my pyjamas and holding a cryptic crosswords book, suddenly I was out with my family in the cold, listening to arguments about "what was best" for me and "we did the right thing"s. And they did. I'm not a passive person but when it comes to medical authority, I listen, and I do what I'm told, and we didn't do that the first time I was in hospital (and so my mother doesn't freak out, I do believe we did the right thing - Mum, no need to stress). It was a weird experience and yes, it left me feeling quite raw and emotional. It's strange to quickly go from being in the constant care of a team of professionals and to have direct access to painkillers and doctors and aid that - try as they might - my family cannot replicate at home.
I'm an over-emotional person at the best of times...and that was not the best of times.
This time around, it was better.
Not just because the hospital was, overall, much better, but because I knew when I was leaving. Instead of being yanked out a night early, I actually stayed in longer than was originally planned. They told me I could leave after my MRI on Wednesday but when I returned from the scan in a wheelchair, retching into a plastic bag and doubled over with stomach pain, it was agreed that another night would probably be advisable. I got spoken to by a clinical psychologist, I saw members of the pain team, the gastro team, my dietician, my nurse for the day and of course the wonderful head nurse of the IBD clinic who holds everything together. I was given scripts, a med chart, blood test forms and some semblance of a plan to continue on after leaving hospital. I had my bags packed and, most importantly, I had time to mentally ready myself for the environment transition.
Once I got back, I didn't have to flip straight into normal life. I went to my grandparents' house and curled up on the couch, watching bad television (apparently "My Daughter is a Teenage Nudist" is a TV show), reading bad magazines and drinking my bad bad bad meal replacement drink. I took a long, hot shower and washed my hair and made the most of finally being able to freely move my arm (now cannula-less). I don't have to go to school tomorrow and can instead ease into action, have some quiet time, recharge.
It's not all good news, though.
I know what the doctors tell me is true, and I'm not one to question medical authority (as I've established), but I feel like we're running on the spot. We're charging into pain medications and anti-nausea ones (including one that's used on Chemotherapy patients) and every kind of drug imaginable and I'm continuing without food for another eight weeks but...for what? Four weeks already and I've noticed no improvement - having just been in hospital, I'd say I'm worse. It's hard to keep motivated to do something that is so difficult when it doesn't seem to be having any benefits. And this is not because it's the non-medication route - if I'd been on a certain pill for four months and it was making no difference, I'd be equally concerned.
All the while, I have doctors telling me that there was a marked improvement on my last CT scan and I just feel as though these insane levels of pain and nausea and discomfort are being rendered invalid by doctors. My inflammation allegedly looked better as of early July, but I feel worse now than I did in early July. Not only that, but the markers in my blood have consistently become higher, so I can't be making it all up; something is not right in my body and I don't feel like we're not doing enough to combat it and I cannot accurately express quite how frustrating that is.
Almost as frustrating is the constant cry of bystanders that they know someone who has Crohn's or IBD and look what cured them! People don't seem to understand that you're never cured of Crohn's, you just go into remission; nor do they understand that while the power of positive thinking or a gluten free diet might have reduced their pain, it doesn't work for everyone, and even when it works, it's usually just masking symptoms instead of treating them.
Sometimes I forget about the pain and things look alright in the world; I can focus on the good things in my life, like the holiday I'm going on come December and the fact that I'm nearly finished school and that I have loving and supportive family and friends.
Sometimes, when the pain is the worst and the fatigue has worn me through and some kind of dark shadow settles across everything I come into contact with, I forget about the good and it terrifies me.
I'm quite all-over-the-place tonight. I suppose it's exhaustion and emotional upheaval and differing circumstances more than anything, but it doesn't feel like that. It just feels like it's getting quite hard to carry all this weight on my shoulders, especially when I'm told that I shouldn't be feeling this way and that there are so many people in the world who have it so much worse than me. I just want to be the selfish one for the moment, as terrible as that sounds, where I can worry about myself and feel justified in my pain and in my sometime misery.
I'm trying not to let my illness become me but when there's so much else encompassed into it, all these weird feelings and so much constant struggle, it's hard.
Wednesday, 8 August 2012
Judy - Hospital
Sara has been in hospital a week and while she's definitely much better, I don't really think we've achieved much in terms of managing her illness. She's on a whole cocktail of medications to mask her symptoms. Stuff to curb the nausea, strong pain killers, but nothing really to address the increasing inflammation in her body. My biggest fear is that we take her, (well a zonked out version of her) home, continue with this "not eating" regime and end up back in hospital in 2 -3 weeks time.
I don't need the results of the MRI to know that her condition has worsened and I don't need anyone else to tell me that studies have shown that not eating for 8 weeks really helps. Words are all very well, but you try not feeding your child for weeks without getting distressed.
The other thing I've been told this week, is that Sara is feeding off my stress. I freely admit to feeling stressed and out of control, but I wouldn't be feeling this way, if I wasn't already in a distressing situation. And on top of that I have a job to maintain, a family to run, meals to prepare. My daughter is in hospital. Of course I'm bloody stressed!
So we'll go home today and try to keep going as best we can. The plan is to be back here next Tuesday for the results of the MRI scan. And beyond that I have no idea what the future holds, but I'm pretty sure my stress levels will be rising.
Saturday, 4 August 2012
Sara - Hospital again
Camp started out okay. Breaks were plentiful and I avoided mealtime like the plague, but otherwise, uneventful and fine. Tuesday, the pain started. Bad pain, pre-hospital pain. I panicked, but I felt like I had something to prove, so I stayed on and kept my calm. Wednesday held a few surprises, and eventually it was decided that mum would pick me up the next day and take me to the hospital, on advice from the nurse at the IBD clinic I attend.
So, after a (naturally preachy but otherwise fun) few days at camp, I was picked up and driven to the hospital. At first, I didn't feel too bad, but about halfway to the hospital pain reared its head and by the time we made it to the ER, it was out of control. Later, in an observation bed, I was seized by nausea, and spent several hours dry-retching. Not a pretty mental picture, sorry to say, and not a particularly pleasant feeling. After being seen by the same Gastro registrar from last Wednesday at the clinic, along with several nurses and other doctors, it was agreed that I'd be admitted, with an MRE (from what I understand, it's mostly the same as an MRI) being a necessity.
The MRE is scheduled for tomorrow and I've spent the last few days lying in a bed in the "Adolescent" ward (the definition of adolescence is a bit twisted - my room mate is six years old). This hospital is nicer than the last one. My room mate is here with lung problems (poor thing is stuck sharing a room and bathroom with an IBD patient). The nurses are lovely and the area is nice and I'm comfortable, I suppose.
Today has been my best day yet - last night was the first time I felt able to do anything without needing to throw up or having to double over in pain. This morning they took out my drip and switched my intravenous meds to oral ones, and I've managed to keep down one of my meal replacement drinks - which is quite an achievement, all things considered. I was even allowed out for an hour, so we drove down to the beach and sat on the grass for a while. It ended quite abruptly with a serious bout of pain that sent me back to my room, but it was still nice to get out for a while.
I'm feeling weird.
My cocktail of medications are messing with my head and I'm still completely unstable. I'm better than I was, I suppose, but I still get the feeling that I'm going to be discharged as early as Tuesday (let's face it, with the MRE tomorrow, there's no way I'll be discharged in the afternoon in a place as disorganised as this), which worries me a bit because aside from the new medications, I'm not sure I'm any better. My blood results are worse than ever and the inflammation scores have gone up dramatically considering my last blood test was only ten days before this one, and I'm still often in pain. I'm worried about going home and continuing on with this no-food regime, and feeling the same, albeit a little bit masked by medication. It's a scary thought. Exciting, I suppose, in a way, but still very scary.
Luckily, I have my laptop and my father has been kind enough to give me internet. I have movies and games and magazines and sometimes I just sleep but right now I'm not sure I can do that - the room mate has about six visitors right now. I'm just killing time, and I'm hoping the MRE comes back tomorrow and tells us something we don't already know, and that a path through this is decided upon.
So fingers crossed.
So, after a (naturally preachy but otherwise fun) few days at camp, I was picked up and driven to the hospital. At first, I didn't feel too bad, but about halfway to the hospital pain reared its head and by the time we made it to the ER, it was out of control. Later, in an observation bed, I was seized by nausea, and spent several hours dry-retching. Not a pretty mental picture, sorry to say, and not a particularly pleasant feeling. After being seen by the same Gastro registrar from last Wednesday at the clinic, along with several nurses and other doctors, it was agreed that I'd be admitted, with an MRE (from what I understand, it's mostly the same as an MRI) being a necessity.
The MRE is scheduled for tomorrow and I've spent the last few days lying in a bed in the "Adolescent" ward (the definition of adolescence is a bit twisted - my room mate is six years old). This hospital is nicer than the last one. My room mate is here with lung problems (poor thing is stuck sharing a room and bathroom with an IBD patient). The nurses are lovely and the area is nice and I'm comfortable, I suppose.
Today has been my best day yet - last night was the first time I felt able to do anything without needing to throw up or having to double over in pain. This morning they took out my drip and switched my intravenous meds to oral ones, and I've managed to keep down one of my meal replacement drinks - which is quite an achievement, all things considered. I was even allowed out for an hour, so we drove down to the beach and sat on the grass for a while. It ended quite abruptly with a serious bout of pain that sent me back to my room, but it was still nice to get out for a while.
I'm feeling weird.
My cocktail of medications are messing with my head and I'm still completely unstable. I'm better than I was, I suppose, but I still get the feeling that I'm going to be discharged as early as Tuesday (let's face it, with the MRE tomorrow, there's no way I'll be discharged in the afternoon in a place as disorganised as this), which worries me a bit because aside from the new medications, I'm not sure I'm any better. My blood results are worse than ever and the inflammation scores have gone up dramatically considering my last blood test was only ten days before this one, and I'm still often in pain. I'm worried about going home and continuing on with this no-food regime, and feeling the same, albeit a little bit masked by medication. It's a scary thought. Exciting, I suppose, in a way, but still very scary.
Luckily, I have my laptop and my father has been kind enough to give me internet. I have movies and games and magazines and sometimes I just sleep but right now I'm not sure I can do that - the room mate has about six visitors right now. I'm just killing time, and I'm hoping the MRE comes back tomorrow and tells us something we don't already know, and that a path through this is decided upon.
So fingers crossed.
Monday, 30 July 2012
Judy - Struggling today
I'm struggling a bit today, I don't mind admitting it. I feel like everything is working against me and I'm dragging my feet to keep going. I don't have these days very often. But boy oh boy, I'm not having a happy time today.
So most of you know Sara is off at camp. She left yesterday morning. I was full of hope that a week at camp would help distract her from her situation and keep the pain at bay.
Now unfortunately, this camp is run externally. So while the school is well aware of Sara's illness, the people who run this camp are not. And clearly they did not read the comprehensive medical forms I filled in or listen to the year coordinator who phoned the person in charge to talk about Sara. So yesterday Sara was reprimanded for going off to get her drink organised and prohibited from leaving while everyone else was eating. She was told she could not use the kitchen to wash up her bottle and glass and worst of all was offered a cup of tea and biscuit when she complained of not feeling well.
I felt incredibly helpless here at home. I had specifically had a meeting at the school to talk about how best she could manage at this camp and day 1 they could not get it right.
This morning Sara rang me in terrible pain. I could hear it in her voice. She was shakey and not focused. I told her to go back to her room and lie down and call me in an hour. Meanwhile I made preparations to go and pick her up (by that I mean I rang my mum and dad to ask if they wanted to go for a lovely drive to the camp to pick up their grand daughter, to which of course they said yes).
Sara has decided to stay on at camp. On the one hand this makes me happy, because I still have hope that she can put her pain aside and enjoy some of the fun aspects of being with her friends. But perhaps I'm wrong. Perhaps the best thing for her is to be with her mum, dad and sister, in familiar territory and in her own bed.
I just don't know what the right thing to do is. I always assumed that in times like these, I would just know what the right thing to do was, but I'm conflicted and on edge. Actually what I really would like is for someone to take me to a warm climate, plonk me on a beach with a cocktail and a good book and then bring me back to a healthy, happy family. Is that too much to ask?
Saturday, 28 July 2012
Sara - Sometimes I think it's all in my head...
Sometimes I'll be lying down, in a lull when the pain has taken a back-seat, and I'll start to wonder whether I'm making this all up. Or rather, that the pain and the symptoms I have are things a normal person would deal with just fine, but because I'm the biggest drama queen I know, they render me useless. I can't go out for long periods of time because the pain will force me to hunch over or I'll need to go home to take my meal supplement. Too long at school will completely drain my energy and leave me exhausted for a weekend; too little school and I'll get stressed and feel worthless (because let's face it, there's not much going in my life when you eliminate school). I'm trying to find the balance but it's really hard, and often - when I'm in one of my little self-loathing, over-emotional, tears-everywhere sessions - it's hard to even find the motivation to keep going with it all.
I've not written on here in a while: it's been a combination of me being really sad for a great deal of time (and me sad does not make for quality writing, that's certain) and nothing interesting happening - or, at least, nothing I could muster the enthusiasm to write about. Unless, of course, you're the type of person who gets a kick out of reading about how much I want a sandwich (or hot chips, or some chocolate, or a piece of damn bread, or a glass of juice). I've been going to school as much as I can - unfortunately, that's only been about four hours a day, with regular absences. The fatigue is ever-present and it's got to be one of the more difficult things because it ruins my ability to think logically and function like a proper person. The pain is still there, worse than ever really, but I suppose it's less frequent. Nausea, fevers, the whole shebang.
I'm simultaneously terrified and optimistic about what's to come. The idea of being taken off this awful no-food diet in two weeks rather than six is admittedly one that appeals to me right now, and I'm inclined to lean towards anything that will end this whole regime of feeling crappy as soon as possible. That part of me says "Bring on the infliximab." And then there's the other part, the one that freaks out a little at the thought of high-grade medications with increased side effects - particularly the one my doctor spoke about could further thicken the already inflamed section of my intestines, possibly leaving me completely obstructed again, which might send me back into hospital with an NG tube (which is not an experience I care to relive). And the bit of me that wants to run and hide any time anyone ever wants to up the meds or do a scope or really further the whole process. But I suppose that part of me will just need to learn to bite her tongue.
This coming week is camp, which is terrifying for more reasons than one. For starters, it's a week of being away from my mother - another way I've reverted to early childhood, alongside the whole "not eating" thing, is my hugely increased dependency on my mother. I'm not sure how I'm going to deal with my all-over-the-place-emotions; whose going to make my drinks up for me when I'm feeling terribly nauseous and don't want to move from my bed? I'm emotionally vulnerable enough right now, so just imagine what that will be like in a week's time. Especially when you consider that I'll be forced into the 24/7 company of people who don't really know what's going on. Let's face it, I don't have the highest tolerance for other people, especially when they're being outstandingly stupid (and what environment fosters that better than a camp environment?). At home, I can escape from these people when the day is over, fall asleep on the couch, talk it through with my mother and people I see less often (Magda, if your were looking for your shout out, here's to being patient with me when I'm at my most frustrated) and refuel before I tackle them again. When you're sick and your patience is down, even people you love grate on you more often, and I hate myself for how horribly I treat my friends at the moment because I'm too tired to be selfless and I'm too sick to feel sorry about it.
That's not to mention the logistical problems that come from being on a "camp" while on a no-food diet, or sharing a bathroom with three other people. Or having no energy for mandatory hikes (never fear - the condition for my attendance was "No hiking"), or feeling sick halfway through group activities, or not being able to stomach anything involving the smell of food. And like with every outing at the moment, I have to be aware of where the nearest hospital is and alert the people immediately surrounding me of flags that call for hospitalisation. Plus the usual camp things - minimal sleep and an inability to return home healthy...
I wouldn't say I'm looking forward to it. I'm looking forward to the good bits, the relaxation, the hopeful distraction from the pain. I'm hoping people will be patient and considerate and, you know, not wave bits of food in front of my face.
And spoken like a true kid-these-days, I'll really miss the internet. See you all in a bit over a week. If you're interested in saying a bit of a prayer for me tonight, let it centre around my not running out of banana nesquik while away.
- Sara
I've not written on here in a while: it's been a combination of me being really sad for a great deal of time (and me sad does not make for quality writing, that's certain) and nothing interesting happening - or, at least, nothing I could muster the enthusiasm to write about. Unless, of course, you're the type of person who gets a kick out of reading about how much I want a sandwich (or hot chips, or some chocolate, or a piece of damn bread, or a glass of juice). I've been going to school as much as I can - unfortunately, that's only been about four hours a day, with regular absences. The fatigue is ever-present and it's got to be one of the more difficult things because it ruins my ability to think logically and function like a proper person. The pain is still there, worse than ever really, but I suppose it's less frequent. Nausea, fevers, the whole shebang.
I'm simultaneously terrified and optimistic about what's to come. The idea of being taken off this awful no-food diet in two weeks rather than six is admittedly one that appeals to me right now, and I'm inclined to lean towards anything that will end this whole regime of feeling crappy as soon as possible. That part of me says "Bring on the infliximab." And then there's the other part, the one that freaks out a little at the thought of high-grade medications with increased side effects - particularly the one my doctor spoke about could further thicken the already inflamed section of my intestines, possibly leaving me completely obstructed again, which might send me back into hospital with an NG tube (which is not an experience I care to relive). And the bit of me that wants to run and hide any time anyone ever wants to up the meds or do a scope or really further the whole process. But I suppose that part of me will just need to learn to bite her tongue.
This coming week is camp, which is terrifying for more reasons than one. For starters, it's a week of being away from my mother - another way I've reverted to early childhood, alongside the whole "not eating" thing, is my hugely increased dependency on my mother. I'm not sure how I'm going to deal with my all-over-the-place-emotions; whose going to make my drinks up for me when I'm feeling terribly nauseous and don't want to move from my bed? I'm emotionally vulnerable enough right now, so just imagine what that will be like in a week's time. Especially when you consider that I'll be forced into the 24/7 company of people who don't really know what's going on. Let's face it, I don't have the highest tolerance for other people, especially when they're being outstandingly stupid (and what environment fosters that better than a camp environment?). At home, I can escape from these people when the day is over, fall asleep on the couch, talk it through with my mother and people I see less often (
That's not to mention the logistical problems that come from being on a "camp" while on a no-food diet, or sharing a bathroom with three other people. Or having no energy for mandatory hikes (never fear - the condition for my attendance was "No hiking"), or feeling sick halfway through group activities, or not being able to stomach anything involving the smell of food. And like with every outing at the moment, I have to be aware of where the nearest hospital is and alert the people immediately surrounding me of flags that call for hospitalisation. Plus the usual camp things - minimal sleep and an inability to return home healthy...
I wouldn't say I'm looking forward to it. I'm looking forward to the good bits, the relaxation, the hopeful distraction from the pain. I'm hoping people will be patient and considerate and, you know, not wave bits of food in front of my face.
And spoken like a true kid-these-days, I'll really miss the internet. See you all in a bit over a week. If you're interested in saying a bit of a prayer for me tonight, let it centre around my not running out of banana nesquik while away.
- Sara
Wednesday, 25 July 2012
Judy - Week 2 - Complete
Judy - Week 2 (All a bit depressing)
We had our second appointment at the IBD clinic at the Children's Hospital yesterday. To be frank, it was not good news.
Basically Sara's blood results show the inflammation markers getting higher and higher which means that the Imuran and not eating food is not doing any good at all. In fact if anything the situation is getting more and more acute.
So what's the plan? I'm not really sure.
Here's what I understood from the specialists.
Meanwhile Sara is off to a school camp next week. I'm extremely anxious about her going but I'm hopeful that the distraction will make the week go very quickly. The school have been incredibly understanding and they will allow her whatever rest and consideration she needs. Not sure how she will go with all the midnight feasts and after hour parties that no doubt will take place. Fingers crossed it all goes well.
I don't know if I told you that I've given up coffee in support of Sara having to give up food. It's right about now I could use a large skim cap (no sugar), so if you're reading this, have one for me. PLEASE!
We had our second appointment at the IBD clinic at the Children's Hospital yesterday. To be frank, it was not good news.
Basically Sara's blood results show the inflammation markers getting higher and higher which means that the Imuran and not eating food is not doing any good at all. In fact if anything the situation is getting more and more acute.
So what's the plan? I'm not really sure.
Here's what I understood from the specialists.
- Sara is to continue on her "no food" regime for another 2 weeks, in the hope we'll see some improvement.
- She is to continue on her imuran
- She has been given a strong anti nausea medication and a tablet to control her reflux
- At our next meeting we may try a new drug called infliximab which is given by infusion. Sara will need to be admitted into hospital and this infusion will be conducted under strict monitoring
- We have been given a referral to a pain specialist to help her manage her pain better
Meanwhile Sara is off to a school camp next week. I'm extremely anxious about her going but I'm hopeful that the distraction will make the week go very quickly. The school have been incredibly understanding and they will allow her whatever rest and consideration she needs. Not sure how she will go with all the midnight feasts and after hour parties that no doubt will take place. Fingers crossed it all goes well.
I don't know if I told you that I've given up coffee in support of Sara having to give up food. It's right about now I could use a large skim cap (no sugar), so if you're reading this, have one for me. PLEASE!
Wednesday, 18 July 2012
Judy - Continued
So you've heard from Sara who's kind of skipped to our current situation, so I'll just quickly fill you in on what happened once we left hospital.
Sara spent 7 days in hospital. 7 grueling days on "nil by mouth" for most of them. Gradually liquid was reintroduced, then light foods and we came home. Actually we walked out of the hospital a day earlier than anticipated because someone in their wisdom at the hospital decided that they would move a 16 year old girl in a ward with 3 men.
My GP referred us to the gastroenterologist he uses for a colonoscopy and endoscopy. Sara and I did not really like this specialist at our first meeting but my GP assured us he was "the best" (Lesson 1: Trust your first instinct and don't always listen to your GP). The colonoscopy showed an area of inflammation in the small bowel at the meeting of the colon. Further pathology tests confirmed Crohns Disease.
I guess I thought (naively) that once we knew it was Crohns, Sara's condition would just be managed with medication. In fact we wasted 2 months with this specialist who we didn't like and her condition just got worse and worse. Her CRP (which measures the inflammation in your body) results were consistently high, and a subsequent CT scan showed the area of inflammation had increased from 5 to 12 cm. The specialist appeared "stumped" at our last appointment and I went to my GP to angrily insist on a 2nd opinion.
Finally I think we have found a doctor and a team who'll support us until Sara improves. This doctor firstly acknowledged that she was very ill and that we needed to see the IBD (inflammatory bowel disease) clinic at the Children's Hospital in Randwick. Here we have access to a dietician, psychologist, pain clinic and doctors who all work out the next course of action.
So we find ourselves in this unpleasant situation. Sara is not allowed to eat any solid food for 8 weeks. Yes, that's right 8 weeks. She is surviving on a product called osmolite which she mixes up with nesquik and chewing gum.
It goes against every maternal instinct I have. I want to feed her up with vegetable and chicken soup. I'll happily puree and prepare special foods, but I'm not allowed to. The osmolite is giving her bowel a rest and at the same time we hope all the inflammation calms down and she's pushed into remission.
So fingers crossed. Week 1 is complete.
Monday, 16 July 2012
Sara - first post and other rubbish
If you read my mother's previous post, then you'll have started forming your mental image of me. I'd like to try and complete that picture, but I think my personality should come out pretty loud and clear over the course of my entries in this blog. If you're expecting constant entertainment, you should probably look elsewhere (my mother and I share a special brand of humour that isn't universally shared or often even acknowledged). What you will find, I suppose, is a journey. When my mother suggested that we share a blog as we make our way through this little adventure (I'm guessing she'll elaborate further), I was pretty eager. Writing tends to be quite therapeutic for me, and in the past few months, I've really needed an outlet. Mum - who has been absolutely incredible through all the ups and downs we've faced so far - and I have always been close, and she's even better at the internet than I am (her Twitter skills intimidate me), so I figured this would be a great opportunity to get out all of the things I haven't had the proper forum to do so with before.
I should say outright that my style of blogging is a little different from my mother's, to say the least, so you're in for a bit of a wild (and experimental) ride. When I'm writing informally, I'm easily identified through my abuse of parentheses, anecdotal style (if you ever get trapped in a real life conversation with me, you're likely to hear one of my many strange and largely useless anecdotes), lack of adherence to correct sentence structure or grammatical law, and inability to emotionally separate myself from what I'm doing. Basically, if I'm angry, you'll know it; If I'm hungry or tired - which I very frequently tend to be -, I probably won't make much sense (apologies in advance). My filter is also currently undergoing repairs, so I do have the tendency to overshare - especially prominent when dealing with something like inflammatory bowel disease -, as well as the complete and utter inability to be concise - to the disdain of every English teacher I have ever had.
This blog has been on the back burner for quite a while now, but naturally, we haven't really discussed content. Mum seems to have the backstory covered; I suppose I'll talk a bit about where I am now.
The past few weeks have been even more crazy than those that preceded them. Well...sort of. If you leave out the ER visit. Between then and what was just more than a week ago, it was sort of an aimless routine of drug taking and specialist visits - with a specialist who commented on my stretch marks and made me feel insecure about my weight, exactly what you want on your plate when you're busy dealing with the fact that your body can't process food properly. There was a brief period of craziness - multiple doctor visits, a CT scan and admission into an IBD clinic at the Children's Hospital all in quick succession - that brought me to my current situation, which is a happy one, if not a particularly pleasant one.
If you've ever spoken to me, met me, even just encountered me on the internet, you'll know that food is a huge part of my life. I'm not crazy unhealthy, but I am a bit of a foodie - amongst diet phases and Weight Watchers programs, my parents managed to instill in me a shared appreciation of good food (and the need to eat things quickly). So when I was told that I'd be doing eight weeks without food (and most drinks), getting my calorie intake from a hospital-provided milk-esque drink, supplemented only by water, Nesquik and chewing gum, I wasn't really prepared. But everything was moving so quickly...so next thing we knew, that was what I was doing.
It's only my fifth day on the diet. I don't think I realised how hard it was going to be - so much of my life, just in a social context, revolves around eating. Going out for dinner, sharing popcorn at a movie, big friday night meals at my grandmother's house, lunchtime at school, hot chocolate with a coworker before we open shop...it's more strange, than anything. I'm not really hungry, I suppose, but I'm craving flavours. There are only so many kinds of gum in the world, but until someone makes hot chip or spaghetti bolognaise flavoured chewing gum, there's this big gap in my intake under the heading "savoury".
Of course, as is routine with me, it's coincided with my health doing some pretty weird things. The exhaustion hasn't really lifted, but the nausea has increased - especially with all the liquid intake. The pain...well, it seems less frequent, but worse in terms of severity. It's more than a little inconvenient. Then there are the headaches, which probably aren't related, but I've been regularly getting light-headed and dizzy. And joint pain - particularly my knees, wrists and knuckles. I hate to feel like I'm complaining, but I try not to in person - why not in print?
I know it will be for the best in the long run, sure, but for the moment, I'm not going to deny that I'm really struggling here. Especially with all the other stuff on top of it. Yeah. It's not great.
But god bless banana Nesquik, seriously.
- Sara
I should say outright that my style of blogging is a little different from my mother's, to say the least, so you're in for a bit of a wild (and experimental) ride. When I'm writing informally, I'm easily identified through my abuse of parentheses, anecdotal style (if you ever get trapped in a real life conversation with me, you're likely to hear one of my many strange and largely useless anecdotes), lack of adherence to correct sentence structure or grammatical law, and inability to emotionally separate myself from what I'm doing. Basically, if I'm angry, you'll know it; If I'm hungry or tired - which I very frequently tend to be -, I probably won't make much sense (apologies in advance). My filter is also currently undergoing repairs, so I do have the tendency to overshare - especially prominent when dealing with something like inflammatory bowel disease -, as well as the complete and utter inability to be concise - to the disdain of every English teacher I have ever had.
This blog has been on the back burner for quite a while now, but naturally, we haven't really discussed content. Mum seems to have the backstory covered; I suppose I'll talk a bit about where I am now.
The past few weeks have been even more crazy than those that preceded them. Well...sort of. If you leave out the ER visit. Between then and what was just more than a week ago, it was sort of an aimless routine of drug taking and specialist visits - with a specialist who commented on my stretch marks and made me feel insecure about my weight, exactly what you want on your plate when you're busy dealing with the fact that your body can't process food properly. There was a brief period of craziness - multiple doctor visits, a CT scan and admission into an IBD clinic at the Children's Hospital all in quick succession - that brought me to my current situation, which is a happy one, if not a particularly pleasant one.
If you've ever spoken to me, met me, even just encountered me on the internet, you'll know that food is a huge part of my life. I'm not crazy unhealthy, but I am a bit of a foodie - amongst diet phases and Weight Watchers programs, my parents managed to instill in me a shared appreciation of good food (and the need to eat things quickly). So when I was told that I'd be doing eight weeks without food (and most drinks), getting my calorie intake from a hospital-provided milk-esque drink, supplemented only by water, Nesquik and chewing gum, I wasn't really prepared. But everything was moving so quickly...so next thing we knew, that was what I was doing.
It's only my fifth day on the diet. I don't think I realised how hard it was going to be - so much of my life, just in a social context, revolves around eating. Going out for dinner, sharing popcorn at a movie, big friday night meals at my grandmother's house, lunchtime at school, hot chocolate with a coworker before we open shop...it's more strange, than anything. I'm not really hungry, I suppose, but I'm craving flavours. There are only so many kinds of gum in the world, but until someone makes hot chip or spaghetti bolognaise flavoured chewing gum, there's this big gap in my intake under the heading "savoury".
Of course, as is routine with me, it's coincided with my health doing some pretty weird things. The exhaustion hasn't really lifted, but the nausea has increased - especially with all the liquid intake. The pain...well, it seems less frequent, but worse in terms of severity. It's more than a little inconvenient. Then there are the headaches, which probably aren't related, but I've been regularly getting light-headed and dizzy. And joint pain - particularly my knees, wrists and knuckles. I hate to feel like I'm complaining, but I try not to in person - why not in print?
I know it will be for the best in the long run, sure, but for the moment, I'm not going to deny that I'm really struggling here. Especially with all the other stuff on top of it. Yeah. It's not great.
But god bless banana Nesquik, seriously.
- Sara
Sunday, 15 July 2012
Judy
Here is a blog about living with Crohns Disease and the realities of life when you have a child suffering from a chronic illness. It's not just about me, the mum (Judy), and our family, but you'll also be able to read my 16 year old daughter Sara's journey with inflammatory bowel disease. And to be fair it is "her" illness and "her" story.
I suppose our story starts in April of this year 2012, when we were called by first aid to pick Sara up from a One Direction concert. We were told that she was throwing up and in severe pain and that we should take her straight to the hospital.
Friday nights at casualty (at St Vincent's hospital in Sydney) are really not pleasant, but fortunately Sara was seen to quickly and efficiently, once the staff had established she was not drunk and had not taken drugs. Sara was given every possible drug to stop her vomiting and to help her with pain. Her blood was taken, however the doctors were unable to establish what was causing the pain or the vomiting.
At midnight it was decided that she would be admitted to the quieter side of casualty (yes there is one) and spend the night. If she was well in the morning we would be allowed to take her home, however if she was still vomiting further testing would have to take place.
My husband and I left the hospital at 2 am and returned there at 8 the next morning. As soon as she saw us she threw up. And even after a morphine shot, she was still in excruciating pain. Terrible to see your daughter like that. Just terrible.
After an ultrasound we were not any wiser. Her scan showed some fluid in the lower abdomen, but nothing that would equate with her pain. Her bloods were fine except for an abnormally high white cell count. We were told that she would need a CT scan, but though we were not happy about the extra radiation exposure, we knew there was really no other choice.
The CT scan showed a high grade small bowel obstruction and immediately after, we were admitted into a ward under a colorectal surgeon.
While this was just the beginning of our stay in hospital and the first time anyone mentioned Crohns Disease to us, in reality, Sara had been sick for many months beforehand, with bouts of terrible pain, nausea and vomiting. Our GP kept putting it down to a bug, or food poisoning. I had put it down to the stress of starting year 11 and school work.
There were still many weeks before Sara was diagnosed with Crohns Disease, but it was at this point I did refer to Dr Google.
To be continued
- Judy
I suppose our story starts in April of this year 2012, when we were called by first aid to pick Sara up from a One Direction concert. We were told that she was throwing up and in severe pain and that we should take her straight to the hospital.
Friday nights at casualty (at St Vincent's hospital in Sydney) are really not pleasant, but fortunately Sara was seen to quickly and efficiently, once the staff had established she was not drunk and had not taken drugs. Sara was given every possible drug to stop her vomiting and to help her with pain. Her blood was taken, however the doctors were unable to establish what was causing the pain or the vomiting.
At midnight it was decided that she would be admitted to the quieter side of casualty (yes there is one) and spend the night. If she was well in the morning we would be allowed to take her home, however if she was still vomiting further testing would have to take place.
My husband and I left the hospital at 2 am and returned there at 8 the next morning. As soon as she saw us she threw up. And even after a morphine shot, she was still in excruciating pain. Terrible to see your daughter like that. Just terrible.
After an ultrasound we were not any wiser. Her scan showed some fluid in the lower abdomen, but nothing that would equate with her pain. Her bloods were fine except for an abnormally high white cell count. We were told that she would need a CT scan, but though we were not happy about the extra radiation exposure, we knew there was really no other choice.
The CT scan showed a high grade small bowel obstruction and immediately after, we were admitted into a ward under a colorectal surgeon.
While this was just the beginning of our stay in hospital and the first time anyone mentioned Crohns Disease to us, in reality, Sara had been sick for many months beforehand, with bouts of terrible pain, nausea and vomiting. Our GP kept putting it down to a bug, or food poisoning. I had put it down to the stress of starting year 11 and school work.
There were still many weeks before Sara was diagnosed with Crohns Disease, but it was at this point I did refer to Dr Google.
To be continued
- Judy
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