Special delivery!

Hey Team!

Just a quick post today.
I got my delivery of Fortisip nutritional drinks yesterday. So this is me for the next month!

My meals for the next month :(

I'm actually not that sad. They're flippin delicious. I would like to know if other people love these drinks or if I'm just a weirdo…? I'm always pretty intolerant to dairy so I tend to steer clear of it. But these are really low in lactose and don't make me feel ill at all. I'm loving the fact that I get to drink a banana, strawberry, vanilla, coffee or caramel flavour milk shake 5-6 times a day! I'm sure they will be sending me to the dietitian again soon to lose weight! haha.

I'm feeling really proud of myself today. I had a really good day at work and have sold the most travel this month, which is a little goal I had for myself. If I can do that while feeling like I do, imagine what I can do when I'm better!

Love to you all,


Holly

Surgical Appointment

Happy Friday!
(slash Thursday as I have readers on the other side of the world now - go  me!!) LOL

It was a semi big day for me today, I got to meet with my doctor that will be performing my ileostomy surgery, Dr Chow.
It was a relief to meet her, I knew she was a lady before going into the appointment, but all I could picture in my head every time they said Dr Chow was this guy.

Chow from the Hangover films, who is also a doctor in Knocked up.

She is the complete opposite to that guy - fewf! Really friendly, kind and confident, so I feel safe putting my life in her hands.

We talked about the surgery, but she couldn't give me too much information as I haven't been able to have an MRI scan yet, so she cant see whats going on.

She discussed how she would like to give me a temporary ileostomy if possible. This will mean that they leave my colon still chilling out inside me, give it time to heal, so one day we might be able to reconnect that bad boy back up after it gets a good rest. 

I don't think that will happen. I know my body quite well and I think it will be too damaged, but we will wait and see the MRI results. I don't even know how I feel about having a temporary one to be honest. I don't think I like the thought, weird huh? If it's permanent then I have to deal with it, and Ive already got my head around the fact that it will be permanent. If it is temporary I may have to have another surgery down the track to reconnect myself back up, that will be up to me but I don't want to give myself false hope that I might one day get to go back to normal. But like I said, I will be very surprised if that happens. She talked over what would happen with either situation though, what she will do in surgery for which ever one we decide (permanent vs temporary), the recovery time etc

My biggest question was about having children. When I have children, I will have to have a caesarean because of all the complications Crohn's has given me. So i was really worried that having already had a resection on my stomach, and then having another operation with the potential for one down the track that I might not be able to have them. C sections are pretty invasive as is my surgery and they can only operate so many times (3 I think usually for c sections) But providing that every thing goes to plan she is going to perform key hole surgery through my pre existing scars - hooray! So she will be going through my belly button if she can. I may lose my belly button when they stitch me back up, I don't know how i feel about this. It's absolutely pointless having it but I'm going to look weird without it…Then again I'm going to look weird with my poo in a bag next to me too! haha. But yes children will be ok, providing I don't have a tribe. Which is fine by me!

I go back to see Dr Chow on the 19th of July, once the results come back from the MRI scan, which I will be having on the 10th of July. She said her waiting list is around a month but she will pencil me in now, which I thought was great news! Well...until I came out of the appointment and Will and I were like, is she penciling me in a month from now or a month from the 19th…? Either way we are predicting August sometime. Really good to have a time frame!

I still can't  believe how much I am looking forward to the surgery. I know it's going to be dreadful at first but I cant wait to be healthy again!

I had to miss out on my friends leaving party yesterday due to not feeling well. It wasn't even my belly playing up this time. Not eating has given me serious withdrawals, I think my body was cranky at me for not providing it with its usual gluten and sugar so thought, right you shall get a migraine for that! I have to bail on pretty much every night out and even though I can't help it I feel like such a crappy friend! I'm sorry Lika, I will seriously miss you and will try to fly to Samoa ASAP for a visit! 

Well my friends, I shall be off to work now. Some how through this all I still manage to work full time. Probably a contributing factor to not feeling well sometimes, but also what distracts me from being sick at the same time. Catch 22!

Love love love

Holly X

The dietitian was smaller than me

Yesterday I went to see the dietitian and have been put on a "no feed" diet *cries*
I have been given these nutritional drinks called Fortisip to have instead. They are high in calories, vitamins and full of all the stuff you want if you are malnourished. They are going to allow my belly to have a bit of a rest and hopefully allow me to gain weight, if not at least maintain it. I have lost a kilo just in the last week and am down to 48.8 kilos. For those of you who know me I am 5'9 and never usually a big person to begin with, but this is way too small, I'm feeling all skin and bones and really unattractive. A recent thing that has been happening lately, is that my hair has been falling out because I'm not getting the nutrients I need. Here's hoping these drinks help otherwise next time you see me I will be bald!

Downside of only having the Fortisip is that I've still been feeling hungry and every time someone mentions food I lose my train of thought. I've decided I am going to have little bits of food when I can manage it, like last night I had half a wrap which was nice and soft and filled the void, and didn't make me feel yuck at all. WINNING!

Second downside…the cost $$$
While you may be thinking..Holly you said you were given these drinks?! I was given enough to last me until my $249 prescription gets filled and delivered.
But you gotta do what ya gotta do I'm afraid! If this makes me healthier and less likely to get an infection post surgery then I am keen.

I am yet to go near the tropical flavour drinks I have been given to try. I do not want a milky like tropical drink unless it is a pina colada thank you very much.

Also the dietitian was tinier than me and I felt really awkward asking her for advice on how to gain weight. I can assure you she was a perfectly healthy person but I still felt weird!

Love to you all

Holly X

Feeling Positive

Hellooooo!

So today I had my appointment with my gastroenterologist, Prof Tim Florin, who I just think is amaze-balls. He pulled his contacts and got me an appointment with the surgical team this Friday! Otherwise I would be waiting a LONG time (the joys of the public health system) Whilst there, my IBD nurse, Heidi, who I also think is amazing (throwing around this term a lot right now) got me an appointment tomorrow with a dietitian.

Basically the last 4-5 days have been exceptionally worse than my usual worse…if that makes sense? What I am trying to say is I have Crohn's that's flaring…so I always feel like crap, but lately I have been CRAP. So I haven't been eating properly because it hurts or sends  me into the bathroom for hours on end, usually in the middle of the night so I am getting no sleep either. The dietitian is going to have a chat with me tomorrow and I will probably get put on these drinks called Fortisip. I have had them before and I didn't mind them to be honest. They are meal replacements so I can just get my on the drinks if I need to and hopefully give my poor belly a rest. The only thing I'm worried about is what if they send me to the loo too! Only time will tell… I shall keep posted about that.

Also on a side note, I haven't cried at all about this operation until today! Heidi (ibd nurse) is just so motherly and caring that I just fricken well up every time I see that woman and have a good old cry. I wasn't bawling my eyes out or anything but I shed a few! Haha.

The last few days I have been investigating the shit out of stoma's and all that jazz and have come across some ABSOLUTELY lovely ladies on twitter. A couple have vlogs (if my mum reads this, that is a video blog :P) so I have seen them talking about living with a stoma, asking peoples questions, and basically just showing everyone that its possible to lead a perfectly normal life after an ileostomy. I am feeling inspired and very positive about it all which is a good thing. I know its not going to be all fun and games and fairies and unicorns and pretty things. Its going to be down right disgusting at times and things probably wont go to plan, but I am a tough nut to crack and it will not get me down.

I can't wait to see the surgeon, I have A LOT of questions to ask… It would be nice to ease my mind a little bit. I'm really hoping to get an idea of when this surgery will be. Unfortunately the MRI department haven't been playing along so nicely (you guys don't get a shout out for being amazing) (they're actually really lovely from previous experience and I take that back)
I have to get an MRI so the surgeons can see what they are dealing with and then can work out the urgency of it all and can schedule me in. The MRI department came back with an appointment time at the end of August. 2 months away!! At the moment I'm struggling to see how I can get through 2 weeks! So my gastro specialist, Tim, is going to have a wee chat with them and see if we can get me in urgently. Its looking like I'm probably not going to have it before the surgical appointment which is a bit dumb, so its unlikely that they can schedule in my surgery.

Why not just have a colonoscopy and get it over a done with straight away you ask? If you have had a colonoscopy you will understand why! I also get really sick from the prep. I am unsure if its psychological or if my stomach just doesnt agree with it. I have to say picoprep, you son of a bitch, are the most foulest tasting shit! Nothing takes the taste away and leaves a gross coating in my mouth, usually making me vomit, instead of what its supposed to do - come out the other end!

I would also like to share another predicament. How much does hospital parking suck! It costs me around $20 everytime Im there, and I will be going there 3 times this week and at least once next week that i know of…sigh. I know of somewhere that I can park thats free and only a 10 minute or so walk away but I have Crohns thats in a flare and walking lately…lets just say stirs things up and makes me need to find a bathroom like NOW. Ahhhhh going to have to bust out the ol credit card.

Well that was  my day, I am going to get up and make myself a hot water  bottle and snuggle up for a night in with the hubby.

Muchos Lovos

Holly

P.S check out @TheStomaBagLady on twitter, along with @ThailaSkye, they are the ones with the vlogs that have really helped. (Mum I wish you were better with technology so you could go onto youtube and watch these girls videos so you would feel less freaked out about this all too!) XOX

Me, myself and I

Hi there!

I started this blog months ago, wrote my first article..(do you even call them that…post?) Then accidentally deleted it, since I have no idea what I am doing. I got discouraged and didn't go back..until now.
I originally wanted to start a blog as a diary for myself, mainly to document my journey with Crohn's Disease. I also wanted to have it as a way to show friends and family what I am going to so I don't need to blag about my life story over Facebook.

Soooo…where to start..how about i give you a quick run down on myself?

My name is Holly, as you probably figured out by the title of this blog.. I was born in Australia but moved to New Zealand just before I was two with my mum. I went to New Caledonia when I was 15 and while over there, got really sick. Nothing to major, but felt generally unwell, lots of trips to the bathroom..that sort of unpleasant stuff. When I got back to NZ, this kept happening. I was so unwell and lost weight drastically. After lots of doctor and hospital visits and many tests and procedures…they figured out that I have Crohn's Disease. I have been battling it most days since then. I have had good times, don't get me wrong, but mostly its been a struggle. I have had a resection on my intestines and bowel nearly 3 years ago and many many surgeries to treat abscesses which have to be one of the worst things to come with Crohn's. I feel like I have been on every drug trial and medication known on this planet.

This is Will and myself :)

I am now 24, and despite having this shit disease (pun absolutely intended) I moved back over to Australia, and I am now married to the most supportive, amazing, loving (the list goes on and on) husband, Will. I am in a job that I love, working as a receptionist in a busy Brisbane backpackers.

This time last week I made the decision along with my doctor to have surgery to get an ileostomy bag, we decided that this was really the only way forward. I can honestly say this decision was followed with a tonne of relief and happiness. I have known for a long time that this day would come, it was just a matter of when, and I am so ready. I have been very unwell and just want to get on with living my life! I have no tears to shed.

The very next day I was at work and I didn't want to tell my boss until I knew more about the operation  ( I will have to take around 2 months off to recover) I didn't want to freak them out, but since this is such big and life changing news, its all I could think about. So I manned up, sat down with my manager and told him. He was really supportive and great about it, so that has been a huge relief. From there I have told the majority of my work mates, who are also good friends. I am not ashamed of what I have to have done, so thought screw it I will tell them - and I am glad I did. They have all been really understanding and humoured me which is nice. When the opportunity is there, you can absolutely make poo and fart related jokes. I will not be offended and find it just as funny as you!
I also wanted to tell them so when I go back to work they don't think I am slack if I keep ducking off to the bathroom left right and centre.

So that's pretty much me right now! I go to the hospital tomorrow to have another appointment with my gastro specialist and will know more from there. I still have to be referred by him to the colorectal surgeon who will be doing the operation, and hopefully will know more about when I will be undergoing surgery soon. I will keep you posted.

If anyone ever reads this, thank you for listening to my rambling!

Much love

Holly x