Tuesday, 27 October 2015

Bye Bye Bread

Hi everyone!

So, as I mentioned at the end of my last post, after months of waiting for medical help / diagnosis & finding out that it was all linked to having Crohn's Disease anyway, I decided to take matters in to my own hands and do my own research.

I know we are always told not to Google our symptoms, but since diagnosis I always have done and unfortunately have rarely been wrong. The control freak in me needs to know where I stand, all the possibilities and all the details. I have pretty much always been correct in what I think is happening, the treatment I will have or what I think the Drs will say, maybe I missed my calling in life!

After Googling arthritis due to Crohn's Disease & trawling through my trusty Crohn's Forum for advice, a few things stuck out. Lots of people noted that lifestyle and diet had helped their arthritis. Now diet has never been proven to effect/cause/cure Crohn's Disease directly, but many believe diet can effect inflammation. My joints have been inflamed for months & in fact everything "wrong" with me, comes in some form of inflammation; eczema, asthma, Crohn's Disease, arthritis. I am basically just one big inflamed thing. After much advice, positive stories & studies I decided to take on board some suggestions. For two weeks now I have been Gluten free and taking fish oil supplement every day (with bread, pizza & pasta being my favourite things, this hasn't been easy). I am trying to eat a much more Mediterranean / anti inflammatory diet. From what I have read, some have found it changed their lives, others have said it made no difference at all. I have never been one to believe or jump on to every new study/diet/fad but at this point, I haven't got anything to lose...

Amazingly, since I started this revamp two weeks ago, the swelling and consequently stiffness in my knees has gone down by about 90%. I am in a lot less pain & able to actually walk upstairs properly for the first time in a long, long time! Coincidence? After three and half months I would be surprised, although it does feel too good to be true. You might be able to control pain with your mind but you can't make your legs swell up to double their size.
I have also been having Epsom salt baths, massaging both knees, using moist heat with wheat bags & gently trying to get my normal range of movement back. Now the change in my symptoms could be down to any of these things or a combination of a few, I don't know.

What does feel really good is to have a little bit of control back or at least feel as if I do. For eight years I have been at the mercy of the disease, never knowing when I am going to be poorly. For most of this I have also been relying on my Dr's to keep me well, diagnose what is wrong & decide my medication. I am already on two quite harsh drugs and the thought of pumping another medication in to my body doesn't fill me with joy. If lifestyle & food can make enough of a difference to keep me from having to take more tablets, I am all for it. It won't cure me, there is no cure. But it may be able to make things a little bit better & it is something that is 100% down to me.

In the mean time, I finally had my appointment with the Ortho & Trauma Dr who was great. I filled him in on everything & what I thought was going on, after which he agreed with what I had said. I had some bloods taken looking for different things than my usual Crohn's blood tests & have been referred to the Rheumatologist who specialises in arthritis. Now the wait to see him begins which could be anything up to 18 weeks. I have an appointment back with the Ortho man at the end of January, to make sure things are progressing in the right direction, which I guess is a positive and should stop me from falling through the gaps & ending up with no treatment or help. Until then it's a sit and wait situation but at least I am able to get around much more easily, am not in awful pain & can start to work out when I'll be moving to Cardiff & getting my life back to normal!!

The only way is up after all.

*Please note, I am not a Dr & don't advise anyone to do what I do without seeking medical advice or help! 

Monday, 19 October 2015

A sorry state of affairs

Hi Guys,

So the last couple of weeks have been a bit mad. I had my cousins wedding mid September, which was so so amazing. Initially I was determined not to wear my bright blue knee brace, but in the end decided to opt for safety rather than vanity. I had one crutch throughout the day and managed to stay pretty much on my feet. I sat down a lot throughout the reception, as both my knees started to swell up & my muscles were aching but I did manage to dance, briefly, just moving my arms. The whole day was really beautiful and it was so nice to get out of Newbury for a couple of days.

The 4th of October was my 24th Birthday! By this point I had planned to already be living in Cardiff so it wasn't the exact weekend I had in mind a couple months back, but it was still a really brilliant birthday. On the Friday before hand I went out for some drinks with friends, it was pretty quiet but so lovely to see everyone who came. It was the first time I had been out in ages and I even risked it with no crutch or leg brace... Probably not the best idea but nothing too awful happened!
On the Saturday I went to Bath with my parents to visit my brother, Dan, who started Uni there in September.  On the Sunday (my actual birthday) I woke up to pink balloons decorating the lounge & some of the best presents! I even had a card from Toby!... Two of my best friends are currently on the other side of the world, which can be pretty tough, but they had remembered and had a card sent in time, which is pretty amazing of them and really, really made me smile. I went out for lunch with Mum and Dad before a bit of shopping with Mum. It was quite a chilled out day but perfect!

Through out this time my knees haven't really improved, I have good and bad days. Sometimes I am able to walk without crutches and there is minimal swelling, at this point I always think it must be getting better. The next week, the knee swells up so much I can't bend it and becomes so painful. What has been really strange, is my 'good' knee has often been worse than the 'bad' one. I've been soldiering on, counting down to my ortho appointment to discuss my MRI, waiting to find out what I have actually done.
Three months on from the yoga class I received a letter saying that my appointment had been cancelled and pushed back by another 2 weeks to the 29th of October. It is safe to say I had a bit of a melt down. I have been unable to work properly, walk Toby, drive or move to Cardiff & the thought of any more time not knowing what was wrong panicked me a little. I spoke to an ortho receptionist who I have to say was unbelievably rude & failed to help at all, she even disconnected the call when I asked to speak to someone else. After a good cry I rung PALS, hoping they might be able to help. Cutting a long story short, a couple days later I received the good news that the appointment had been bought back forward by a week, to the 22nd. Not ideal, but a definite improvement!

In the mean time, I also rung my GP, mainly to get more pain killers but also to touch base & to check whether she had access to my MRI results, as I still didn't know what I had done. She hadn't been sent the results (the new way of doing things) but was able to look it up for me. The scan revealed that, I had done no damage to any tendon/ligament etc and my joint was perfectly healthy. Safe to say I was confused. For 3 months I had been told by multiple people that they thought my meniscus had been torn. Although it has not been formally diagnosed yet, it is thought that my knee pain is actually an arthritic reaction linked to my Crohn's...

Yup. Three months of pain, sitting on waiting list after waiting list, being seen my so many different people & it turns out to be something completely different to what they thought. I had a bit of a wobble when I found out, the whole process has been exhausting and so frustrating, I couldn't really believe it.
I'm still not sure what the outcome is going to be but from what I understand, the yoga will have weakened and irritated my knee joints & my body reacted badly causing an arthritis flare. Normally, this is associated with active Crohn's, however, I am currently not experiencing a Crohn's flare and my bloods are normal. Aha this is where it gets interesting! This form of arthritis, although caused/linked to the Crohn's Disease can apparently go un noticed on bloods but also flare and react independently to the Crohn's. Brilliant news all round.

I am yet to know anything about treatment or when I will have any of it sorted. It is, however, looking like something I will have to manage and deal with, like the Crohn's, for the rest of my life. Fab. This revelation, does however, explain a lot. Why both knees were bad & why it goes in waves of severity, with one minute fine and the next awful. It is thought that I will be referred from ortho to rheomatology, to sort this all out. Who knows how long that will take but at least we are now (fingers crossed) heading in the right direction.

Right now, it is safe to say I'm pretty fed up but also un surprised. On hearing this, many people will be rolling their eyes, "classic Gabi", "always something", "here we go again" - & you would be right, but it also sucks. I'm sure I will get my head around it & once under control will be managed and kept stabile so I can get my life back to normal. Three months is a really long time to put pause on everything.

Due to the fact I have no idea when it will be sorted, I have started to do my research and take matters in to my own hands. A bit of a lifestyle over haul has occurred which I will explain more about in my next post later this week.

Lots of love xxx