The Waiting Game

Hey guys,

Thought it was time for an update!

So, at my last post I had just met with my surgeon who revamped my tests plan & aimed for my surgery to be in August. A week after that appointment at 7:30am  Mum and I arrived at the hospital ready for my investigation under sedation. The previous day, I had spent hours emailing and calling many different departments as my name was not on the surgery list for the following day. I was told it wouldn't be going ahead but fought my corner and chased it up enough that by 6pm they were able to confirm it would be going ahead after all. It turned out my notes had not been given to the correct people and no appointment had been made. I've grown to learn, unfortunately through far too many bad experiences, that you often have to fight and stay on top every aspect of treatment/referrals/admin tasks. Although this time it ended well, it definitely causes a huge amount of stress at a time when my anxiety is high and I'm feeling pretty rubbish.

Upon arrival the nurse couldn't quite work out who was having the procedure, me or Mum. When I popped my hand up, she looked a tad confused before asking my age. When I told her I was 24, she looked relieved, and replied "Oh good, because we don't do under 16's in here". Brilliant!

The area you wait in before the surgery was having building work, meaning that no friends or family were allowed in with you, whilst you waited to go through to the operating area. For me, this wasn't too bad. I wasn't particularly nervous, as no actual op was occurring, I knew exactly what to expect and sedations don't really scare me. For others going in, however, you could tell it was a really big deal. Some of them were having big surgeries and clearly needed their loved ones their before hand. I found it quite hard watching and listening to people try and keep calm, on their own. Once there and on my tod, I had to change in to a gown and have my obs done (blood pressure etc.), the anethetist popped in to go though the 'keeping me asleep' plan followed by one of my surgeons fellows who went through what the procedure would look like. I was only having an 'investigation' so there was nothing too complicated to go through.
I was the first one going in to the operating theatre, so I luckily didn't have long to wait. In the anesthetic room, I chatted away to the nurse who was shocked at how small my hands are and laughed at the nurse thinking I was maximum 16 years old, reassuring me that yes I look young, but definitely not that young.

The next thing I knew, I was awake and in recovery, lying on my side. I had my painkillers topped up, which I enjoyed a little too much and stayed there for around an hour before being wheeled back on to the day surgery ward. Here they like to make sure you can wee, check the op/investigation site to make sure any bleeding has stopped and generally make sure you're back on your feet and ready to go home. At this point I was super sleepy but ready to go, my surgeon was still in theatre so I wasn't able to speak to him but I was told everything had gone to plan, biopsies were taken and he got all the info he needed. A few hours later they set me free and I was able to meet Mum at the ward entrance again. I left a little confused at what the plan would be going forward, the nurse mentioned an appointment with a different surgeon, who I had never heard of, but they couldn't tell me much else. Recovering from the procedure I couldn't believe they originally going to do it with sedation rather than general anesthetic, I am still so incredibly happy that this decision was made.

In recovery, loving the painkillers

The following day, still not being able to drive following the general anesthetic, it was Dad's turn to drive me back up to the hospital for my pelvic MRI. For the second day in a row my eating was limited, so I was starving and grumpy but not phased by my millionth MRI. That, again, all went to plan!

Nearly two weeks on from this, not much has changed. My temperature goes up and down but doesn't seem to be peaking too high, which is good. I'm very tired, all the time, and have good and bad days in regards to pain. I seem to gradually be losing weight and my appetite is a little lower but I'm definitely still eating (nothing can stop my love of food). TMI Crohn's symptoms are the same, painful and horrible. Mood wise, I think I've got my head around it, I get frustrated and angry with the delays, lack of communication and admin errors but I'm doing okay. The surgery has meant I've had to cancel a trip to the Caribbean in October, which is truly gutting but I've started making lists (obviously) of things to do when I'm back on my feet.

I now just want it to happen, get it over and done with, playing the waiting game is not much fun but at the same time it feels really odd to be wishing for such a nasty, life changing, hardcore surgery to happen. I don't want it and want it, at the same time. There has been a lot of hassle trying to get answers about what is happening next and getting to speak to the right people, but on my last update, this morning, I was told that my surgeon had all the results on his desk and a plan was going to be made. For me, this is one of the worst bits, I hate the not knowing. He had previously said it would be August, but we are well in to the month and I've not had any news, so I'm not 100% sure yet when it is going to take place. Hopefully I will be told more in the next couple of days.
In the mean time, I'm sleeping, trying to keep on top of work and generally taking it very easy. I think it's hard for others to understand the on going, seemingly never ending process of this waiting. I'm not feeling better & it'll be months before I'm back to my old (hopefully better) self. I feel like a complete drag when people ask how I am and the response is no different to the last time, having no news is so annoying.

Unfortunately, we've also had some really sad news, with one of our family labradors, Harry, having to be put down. He had a very aggressive cancer, with a tumour on his face, so we knew it was coming, but in the end, it was much quicker than expected. I feel completely devastated, right now, it's the last thing I needed and think it has effected me a lot more given everything else that is going on.

The good news is, it's all up from here! Hopefully in the next few days I will have some news, my control freak ways will be satisfied and I can start to plan moving forward! The Olympics have also been a brilliant distraction and has given me the best TV to get in to 24/7, which is great. I've also gotten out the house to see Finding Dory (which was SO good) and a couple of hours at a leaving BBQ for my friend heading to the RAF, as well as light strolls with the dog, all things which have made me feel a lot better.

Will of course, continue to update xxx

Well that escalated quickly

Hey hey hey, 
So, following the unfortunate news last week, things have developed rather quickly. Just a few days after my last post I started to feel really rather poorly, I was exhausted with a high temperature. After two and half days I decided to contact the IBD nurses at my hospital. With a series of tests already booked and with things set in motion for the next 3-4 months, I didn't expect that much would be done, with the possible exception of some antibiotics. Alarm bells did start to ring, I knew this wasn't normal and things had gotten worse. 

Whilst the email discussions went back and forth, my temperature got higher, peaking so far at 39.2 but never really dropping below 37.6/37.8, I also discovered a fistula (an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs.) Either way, it was nasty and caused by an abscess, clearly where an infection and why I was feeling so terrible. I updated the nurses again and an emergency appointment was made for the following day with my surgeon. Until then, I had been waiting for a routine appointment letter to come, and still didn't have all my test dates through, so things had definitely stepped up a gear. The morning of the appointment, I had gone through a good five days of feeling pretty terrible & really not sleeping well, it was safe to say I looked horrendous (a kind nurse described me as 'a bit peaky' which I could almost take as a compliment, given the state of my face).  

I went in with my Mum to see the surgeon, really not sure how it was going to turn out. Last time he offered to do the surgery that evening, so I was preparing myself for any eventuality. We went through the symptoms, the tests I had upcoming and how things had progressed in the three weeks since I'd seen my consultant. He then had a 'look' (always a pleasant experience) before sitting down to give his view. He agreed that a panproctocolectomy was needed but that before he could do it, he would need to see what he was getting himself into and have the results of a few tests. It was at that joyous moment, with bells ringing and angels singing that he cancelled my colonoscopy.
For those that don't know, following a very traumatic colonoscopy experience four years ago, all of the procedures since have been done under general anesthetic, ensuring I was completely asleep throughout. However, after moving hospitals, my new consultant decided it was best for him to complete the test himself and therefor it could only be done with sedation. Now for most sedation works wonderfully, my brother for one falls asleep straight away. I however, have never fallen asleep and remain awake, remembering and feeling everything. That alongside having very painful, inflamed perianal Crohn's makes for quite a nasty experience. Since the news that I would have to go through with the colonoscopy, I have been sick with nerves, unable to comprehend how I was going to get through it. The knock on effect of the experience four years ago has been huge and although my consultant was incredibly kind and reassuring I couldn't help but feel genuinely terrified. It may well have gone ahead with no problem at all (colonoscopies are a very routine procedure), but I wasn't sure I'd be able to stay still long enough for them to try. So when my surgeon announced this would no longer be happening, I very nearly jumped out of my chair and did a little a dance. In fact, when he did briefly leave the room, I did a little chair jig.

Instead of the colonoscopy under the sedation, due to what a state the area is in, how much pain I'm in and the fact the surgeon wants to have a look before surgery, I will be having an 'Investigation Under Anesthetic'. They'll get the info they need, whilst I'll be none the wiser. The robot tablet swallowing that I was so excited about was also cancelled, which I am disappointed about but the MRI does remain. Both of these tests are happening back to back, this Thursday and Friday. After which, he will book my surgery for August.

My surgeon gave me all of this news alongside my consultant (who was now also in the room), both gave me a sympathetic look, waiting to see how I was going to react. I, meanwhile, was beaming (with the colonoscopy news) and said something along the lines of, "To be honest, just cut it all out, as soon as possible." I think they thought I was insane and at any minute would collapse in a mass of tears but I instead left with a big smile on my face that I would never, ever again have to have a colonoscopy. The news of the op, was not new and the fact it is happening sooner, rather than later is a good thing and means I won't have to feel this poorly for too long. It's going ahead, and there is nothing I can do about it. I also strongly believe that going in to these things with a positive attitude can work wonders when you're recovering. The whole life long ostomy thing is something that will take time to get my ahead round. The operation and recovery, however, I feel a bit more ready for. The whole thing is pretty overwhelming and I have very low moments but the incredible support from my family, friends and complete strangers has been so wonderful. To those who have arranged to visit, offered to help me with Chroma or simply messaged me, thank you so much.



Onwards and upwards
G x

Not the news I wanted

At the start of the month, I spent the best seven days with my family on a lovely holiday to Cornwall. I took the whole time off of work, which I never do & it did a lot of good. We ate a whole lot of fish and chips, went on cliff top walks & I devoured four books. I needed the time to chill out after a pretty crappy week before.

Two days before we left for Cornwall, I had my first appointment with my new consultant, at my new hospital. My original greatly trusted, consultant had moved elsewhere, so I felt it was a good time to get a new perspective at one of the best hospitals. My surgery was done there and it's where my brother is treated, so it made a lot of sense. At the appointment I had a very honest but much needed conversation regarding the disease. After not much more than 10 minutes it was decided that Margaret was definitely going to be made permanent. No going back, rest of my life, permanent. Until now, I have all of my intestines, bowel etc. intact and a chunk of it has just been sat there chilling out. The goal was that the long rest would allow my intestines to clear up and I would be flare free. The ideal scenario was to eventually have Margaret reversed, allowing the bag to go and the disease to be more under control. Unfortunately, this hasn't happened. I knew, going in, that I had a 1-2 in 10 chance of having the reversal but I (like everyone) was confident I might be that small percentage. This nasty disease has other ideas.

Since my Margaret surgery, three years ago, my life has been so, so much better than before but definitely not 'normal'. The rested bowel has not remained flare free causing symptoms to get worse intermittently. These symptoms have been slight and so much easier to cope with than pre-surgery that they have been pretty easy to live with. Recently, however, these symptoms have gotten worse. The inflammation from the perianal Crohn's is bad, I have slight stomach cramps and back ache and my knees react to the inflammation every couple months. Fatigue has also been something that I have had to cope with on a daily basis, this symptom never went away but in the past few months, has gotten worse. I wake up tired, spend days recovering from a busy weekend and need to pace my day constantly. It is by far, my worst Crohn's symptom. The consultant confirmed that had I not had Margaret I would undoubtably currently be very sick indeed. Due to all of this, the fact I have run out of medication options & that despite Margaret I am still flaring, she is going to become a permanent fixture.

Despite knowing that this was probably going to happen & it really not being a shock (as always I went in guessing what the consultant was going to day) it was still a very shitty blow when it was confirmed. This is a much bigger surgery than the first one, (probably going to be a panproctocolectomy) which is the permanent removal of my colon, rectum and anal canal (how lovely). It is, clearly, irreversible. The recovery time is longer, the risks are high and the long term effects are worse. The main consideration is the potential effect on the ability to have children, when you want them. This particular surgery can create a 30% delay in having kids. The good news it doesn't effect how the reproductive system works, if it's healthy to start with it tends to remain so, but it can create a delay when trying. It doesn't effect every woman and doesn't mean 'I'll never have kids' but does mean it can take 30% longer to do so, if/when I wanted to. On the other hand, I know plenty of women who have had this op who fell pregnant straight away, with no trouble at all, having anticipated it taking a while. It's something I have no control over, is not the end of the world but equally something I'm trying no to think about. Working for myself is also a consideration, the operation will hopefully be on my terms and at a time which best suits my life and schedule.

This surgery will be different to the first. Last time, I had a three day warning. This time, I may have weeks or even months to plan it. In many ways, this is great! We all know, I love to plan (think of the lists!!!). The downside is, I have far too long to worry, stress & overthink about it. Now that I know it's happening, I'd rather it was over and done with.

My feelings on the impending surgery are mixed and ever changing, which I think is probably normal and is why I've taken a few weeks to write this. My loveliest, closest friends and wonderful family all know and have, as always, been amazing. This is a big deal, but hopefully humour and positivity will see me through some of the bad days.

The next couple weeks are, unfortunately, filled with tests, scans & appointments, allowing my consultant and surgeon to get a complete picture of how bad the disease is, where it has spread & how long I can hold off on having the surgery done. I'll ensure to document the journey, as always, including the very exciting 'tablet endoscopy' which involves me swallowing a capsule sized camera/light/transmitter device which films my insides as it makes it's way through my body. You read correctly, I AM SWALLOWING A ROBOT.


Over and out.

Three Years On...

Today marks three years since I had my ileostomy surgery. 

This time three years ago I was sat in the ward with my Mum, feeling a bit shell shocked, exhausted and very sore. Two years ago today my life very different again; I had just handed in my final major project & was looking forward to graduating. Reading my post from one year ago today, I was having a bit of a wobble. Margaret was looking permanent and I think that hit me harder than I thought it would. A year on and today I’m in a pretty good place, the last year has had it’s tough moments but Margaret and I are getting along fine. 

Three years on, I thought I’d look back at the things I have learnt along the way…

- I pretty much fail at being embarrassed.

From tubes put in places they should never go, in front of a room of people and an old man opening a toilet door to show me & Margaret to a queue of people, to bag leaks and non flushing toilets. It’s safe to say that there is little left that can embarrass me. I guess I live life on the edge and am now able to largely brush embarrassing moments off with a laugh. 

- People don’t care.

When I found out I was going to be having Margaret part of me really worried about what others would think. In the past three years I have never had a bad word said directly to me & only once has something been said behind my back, that I'm aware of. I think that’s pretty good going. I’ve learnt that frankly, people don’t care about her and a lot of people have forgotten she is even there. Although a big deal to me, she’s not a big deal to anyone else. 

- The only limitations I have, are those I put on myself.

Apart from wearing a pair of silk shorts, Margaret hasn’t stopped me doing anything. The times I’ve worried about her, have all been down to my own issues rather than anything to do with living with an ileostomy. Margaret does not limit my life, in fact, compared to the pretty miserable year I had before her, she only enhances it. 

- You never get over it. 

In the past I have expected myself to get over the fact I have Margaret, that I would get used to her and that she wouldn’t bother me anymore. Right now, I don’t think this will ever happen. I have very good times when I feel like I can take on the world, but I also have times when I get so fed up. The reality is, it’s not all positivity and loving life, sometimes it feels really, really shit.

- My support system is pretty great. 

They say when times are tough you really get to know who cares and I’m hugely lucky to be surrounded by such caring, wonderful people. 

I don’t think the amazing friends who have stuck around every time I have to cancel plans because I’m exhausted, text me from the other side of the world when I'm fed up or offer lifts because my knee is swollen (again), realise how much better they make my life. They are incredibly understanding yet treat me no different and I love them all for that. 

My parents, especially, have always been so, so incredible, I don’t know what I would do without them. Every set back and flare up effects them as well, yet their love, reassurance and support has never wavered (even when I moved back home for the millionth time), I love them and my two brothers to pieces, and can’t thank them enough. 

Happy Birthday Margaret

XXX

World IBD Day: My thoughts.

Today is World IBD Day, a day dedicated to heightening awareness, raising money & ridding the stigma associated with IBD (Inflammatory Bowel Disease).

Every 30 minutes someone in the UK is diagnosed with Crohn's Disease or Ulcerative Colitis, 300,000 people in the UK are currently living with the IBD; that is 1 in every 210 people living with a life-long, incurable, unpredictable and life changing disease. These are pretty staggering figures for a group of diseases with very little coverage, knowledge or awareness. This generally comes down to the fact that it's an 'embarrassing' and largely hidden disease, people are scared to talk about it for fear of others reaction.
Just a few months ago BBC South Today asked views to 'look away now if you're eating your dinner' before a feature including ostomy bags. No graphic imagery was shown, this warning was cast at the mention of the subject. The Archers on Radio 4 also has a running story line where a particularly nasty character has been left with an ostomy. It is mentioned nearly every week, each time with a tone of negativity, horror or disgust. Those following & commenting on Twitter, actively show their pleasure in seeing such an awful man 'getting what he deserves' in the form of a colostomy. I am sure other medical topics such as cancer, stroke, limb amputation or MS would never be used in such a way, so why Ostomy bags?
This kind of public stance, only compounds many peoples incorrect and ignorant perception of those living with IBD or bags.

Of course, it isn't all awful. IBD and Ostomy's are being discussed much more than they ever used to be, and I believe it is all generally going in the right direction to both raising awareness and finding a cure. However, a huge amount more is still left to be done. Awareness needs to be generated, sufferers should not be made to feel isolated, embarrassed or frightened, stigma needs to removed, IBD should no longer be a taboo subject.

This past year my bowel has largely been on it's best behaviour. I am now nearing 3 years of living with Margaret, my ileostomy, and symptoms have settled more than I could have ever imagined. My quality of life has been improved immeasurably and I've grown to accept the little pouch attached to my tummy. Of course, I have my down moments but these are much fewer than they ever used to be. So whilst my bowel symptoms have been on the up, I have had to deal with a rather nasty side of Crohn's disease, I barely knew existed. Being diagnosed with Axial Enteropathic Arthritis has not been easy and has annoyingly gotten in the way of lots of things in the past 12 months. I won't bore you again with the (very) long story, you can always read back on the last few posts for that, but it certainly hasn't been smooth sailing in the old knee department. Fatigue is also something that effects my life every day and anxiety likes to rear it's ugly head too. It hasn't been the worst year for having Crohn's but it's certainly not been the easiest.

Photo credit @spoiltbytes

I've often thought, if I could snap my fingers, would I get rid of having Crohn's Disease? And of course, I would, it would be great not to have to deal with it on a daily basis. But in many ways, I can't imagine my life without it. Aside from being completely used to the daily medication, giving myself injections, having blood tests & Dr's appointments every few months & dealing with the constantly changing symptoms. It has also, without a doubt, changed me as a person and I really don't know what I would be like or how my life would be, had I never been diagnosed.
IBD has made me strong and resilient, I have learnt to let go of the minor, insignificant 'small stuff' that used to bother me and to not let other people and their actions get me down. I'm much more aware of who and what matters & massively appreciate the amazing people around me and the times when I'm able to live life normally, I try not too take these things for granted. IBD has made me fiercely determined; to succeed and to do everything I want to do. When life knocks me down, I've learnt to bounce right back up again. All of these traits and skills I've developed largely from having the disease. Crohn's has taken a lot away and made life pretty damn hard but it has given me a lot too.

So here is to another year of IBD. Talking about it, raising awareness and hopefully getting one step closer to finding a cure.

Happy IBD Day guys!
XXX

Never stretching again.

Hi everyone,

How are we all doing?

As you know last year I found out my flexible joints weren't just a party trick but a condition called Joint Hyper Mobility Syndrome. Although this comes in handy when doing the limbo, it can also make life pretty annoying. I have recently found it near impossible to stretch off my muscles, especially in my legs. They ache all the time & my ligaments and joints just keep on bending when I try to stretch them off. A few weeks ago, I decided enough was enough and I had a real good stretch. I tried to be careful as I'm super aware of my naughty knees and their need to swell up when I do anything other than a gentle stroll, but I just couldn't help myself.

Sure enough, the following morning my left knee started to give me jip. The arthritis just jumps on the weak joint and causes havoc. I spent two days trying to walk it off, resting it when I could and basically ignoring the problem until I had no choice but to give in. The brace went on, ice & hot water bottles were alternated and I spent days sat resting but my knee continued to swell up until I was no longer able to walk. The crutches had to come out the loft and I was popping codeine to try and stop the constant pain. Luckily, this time round I knew what was going on and knew I wouldn't have the months of hell ahead like last time.

I already had an appointment with my consultant the following week but I rang the hospital arthritis helpline for some advice to get me through the next few days or hopefully bring the appointment forward. They eventually got back to me the following day to tell me there wasn't anyone available to speak to me until after the weekend, when they would call back. By Monday I was thoroughly fed up, the weather had been amazing and I had spent most of the time sat in a chair watching my friends Snapchat their lives at the beach and having picnics. The pain had been particularly bad and more constant than last time. As predicated, the hospital did not call me back but given I had an appointment in place I didn't worry too much and concentrated on getting through the next couple days.

A few days later I hopped (literally) in a taxi and saw a knee Dr who once again aspirated the knee, taking out all of the excess fluid that was causing the swelling. The average knee only has a few ml's of fluid in there but she managed to get a whole pot of yellowy/orange liquid out of my little knee. The procedure wasn't pleasant, in fact, it hurt a lot. Having a needle placed in the side of your knee, under your knee cap, is not fun but the Dr was amazing in keeping me calm and the instant relief once it was done was bliss and 100% worth the discomfort. Within days I am now able to walk again and the swelling has (touch wood) not returned. The Dr agreed that my Crohn's seems stable and that both my arthritis flares have been due to 'exercise' (see gentle stretching) and that I would therefore benefit from having physio and strengthening the muscles in my legs again to try and support the joint. Fingers crossed, once that is sorted I won't have these flares as often!

Next week I am off on a city break to Rome & I could not be more excited! Having to cancel my holiday to Paris last year was absolutely gutting so I was determined to make it this time round and so far things are looking good... Roll on Italia where I will be doubling my body weight in pasta, pizza & gelato!

XXX

The knee mystery is solved.

Hi guys!

So my recent week back home was jam packed busy. Although Cardiff is a great city, it is annoyingly a little too far from everything else I have going on. I have to plan every trip back carefully to ensure I'm not spending all my time, back and forth on the M4. 

This first visit back was spent childminding, heading to Chroma meetings and importantly at two hospital appointments for my knee. 

My knees have actually been pretty good recently. Although I haven't been able to kneel properly since July and they do ache after any form of exercise, they are no longer swelling up or particularly painful. My first knee appointment was with the Ortho surgeon, it was a follow up from my last one - the idea was to ensure that the Rheumatologist was happy to take me on before Ortho discharged me. The waiting time has however been so long that upon my Ortho appointment I had yet to see the Rheumatologist... Safe to say I think the Dr felt pretty awkward at the lack of progress since I had last seen them but agreed that there was nothing they could do for me as no surgery was going to be needed! He was happy to discharge me & allow the Rheumatologist to take over treatment from here on, in. 

Five days later I headed to finally see the Rheumatologist. I had expected a 10 minute outpatient appointment as normal but ended up being in there for 45 minutes! I did however, leave with a diagnosis & plan of action going forward. 

It turns out that I definitely do have arthritis, enteropathic arthritis to be exact. This is not your usual rheumatoid or osteoarthritis, it is not associated with the elderly and often has little effect on the actual bones themselves. 

It is a form of "chronic inflammatory arthritis associated with the occurrence of an inflammatory bowel disease". Basically, it's all down the to Crohn's. Like the Crohn's there is no cure and no rhyme or reason why it happens. My body is doing the exact same thing it does with my bowel, but to my joints. It usually flares up when the bowel is inflamed but it can sometimes work alone. It is another thing that will need treatment and will come and go for the rest of my life. Fab news all round. 

The treatment for the arthritis is largely the same as with the Crohn's, meaning that the list of medications that no longer work for me with the Crohn's won't work on the arthritis either. The Dr has upped one of the drugs I'm already on & will now be in touch with my Gastro Dr on what can changed or swapped going forward should the knees swell up again. 

The last flare up occurred three years ago, before I ended up in hospital for the first time. The Dr explained that because of this it could be years before my next arthritis flare. If that is the case then he reckons treatment could be removal of the fluid and a steroid injection to nip it in the bud.
If, however, the flares become more regular then new meds will have to be looked in to, although I'm trying not to think about that for now.
He did also casually mention that really, I should have had the fluid extracted & a steroid shot right at the very start and that may well have sorted the knee out straight away... way back in July, seven months ago. Again, something I'm trying not to think about. 

After 20 minutes of going through my medical history, diagnosis & treatment plan I thought the appointment would be coming to and end. Boy was I very wrong. Upon examining my joints & realising that the knee was still giving me a little trouble he decided fluid extraction & a steroid injection would be a good idea. Now, the last time fluid was taken from my knee I think I hit the ceiling with the pain, and three pots of fluid were extracted. Safe to say I wasn't looking forward to this. 

I'll save too many of the details for the squeamish but the procedure involved a 2inch needle going in to my knee (with no local aesthetic), not the most fun way of spending a Wednesday afternoon.
Unlike last time, he wasn't able to get any fluid out, which meant there wasn't much inflammation at the time. He then put a steroid injection in to the joint, hoping to relieve some of the stiffness and achey pain when I exercise or kneel down.
Due to the joint not being inflamed the pain wasn't as awful as I remembered, although still pretty uncomfortable. Luckily after about 45 seconds it was all done and I was able get out of there! My knees ached a hell of a lot for the next two days but have since felt amazing. I am once again able to kneel down and have had no pain or stiffness at all, it's a miracle! 

My research and previous knee issues meant I was pretty prepared for the diagnosis, once again I saw it coming and turned out to be right. Being told for certain that it is something I'll have to deal with on going was a bit of a blow, but I am pretty used to it by now. Going forward there isn't really anything I can do to stop it happening again; reducing stress, keeping up exercise & taking my medication is really all that is in my control. I can also once again eat gluten, something which makes me ever so happy!
Hopefully the Dr is right & it could be years before I next have any issue. If it does flare up again, however, I will already be in the system and will never have to wait over 6 months to see the right person again.

Finally the mystery of the knees has been solved! 

Onwards & upwards....

XXX