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?

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

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.

• 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! 

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.

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

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