A New Chronic Illness

Hello again!

I've alluded to a new chronic illness a number of times in recent blogs, so it's time to actually explain myself. It's not really a mystery (and people who read the new blog description might have already spotted it!) but with so many ideas and topics to cover since relaunching the blog I didn't want to overwhelm you with essays too soon. And let's face it, even my short blogs are kindof essays already! This one really is a long one though, so much happened in such a short space of time and I don't want to skip anything in case it's useful for other people with similar experiences, so you may want to grab a cuppa and get comfy...

Jumping straight to the "big reveal", at the end of July I was diagnosed with Crohn's Disease; an inflammatory bowel condition that can cause a whole host of symptoms that are less than fun. You get phases called Flare Ups, similar to Endometriosis, where your symptoms are worse and you generally need to be under the care of a specialist team during this time (though not necessarily in hospital) and phases of Remission where you're in better health. Another similarity to Endo is that peoples' experiences of Crohn's vary widely - some enjoy normal health during remission whereas others still struggle with a variety of issues and flare ups can range from digestive issues that are treatable with drugs to severe complications that can result in surgery.

So far I have only had one flare up - which resulted in my diagnosis - so I can't really say which of these categories I'll fall into yet. My flare up has been quite bad, lasting a number of months with quite a lot of the 'classic' symptoms making an appearance (including swollen and blotchy ankles and a severe sensitivity to light in one eye - not something you'd expect of a largely digestive-based illness!). However it is all being treated with drugs and I haven't had any of the severe complications, so I still count myself lucky in the grand scheme of things.

Early symptoms

Looking back initial symptoms started mid-April, when I noticed some appetite changes such as not being hungry at all and feeling sick whenever I did eat. I was eating between 200-600 calories a day and just couldn't stomach anything more despite knowing it wasn't good for me. At the time I put it down to the stress of my break up, but I now know this is one of the early symptoms of a flare up. Gradually this eased and I didn't think any more of it.

The next sign didn't happen until early June on a visit to Belfast. Without going into too much detail I simply thought I had a stomach bug and didn't feel well, but when the symptoms continued for several weeks it was becoming apparent that wasn't the case. I was also having appetite issues again, with some foods sending me running to the bathroom in minutes and other times I just couldn't face food at all. I'd been gradually losing weight since April already and by the end of the month I had lost 1 stone. I was delighted as it's a goal I've had for a while now, but it was also starting to ring warning bells in my head.

I was also noticing pain in my wrists and ankles - one night my wrist even swelled up for no reason - this was something I'd experienced after having tonsillitis before but I thought it was unusual to be happening without an accompanying virus...

Heading to the doctor

Upon leaving Belfast in mid-July I started suffering from what I assumed was a cold that I'd caught from Chris - in my mind this explained the joint pain, but I really wasn't having much luck! I saw my doctor about the stomach bug symptoms but failed to get anything else checked as I was sure the cold would pass on its own. She thought I was suffering from a bad IBS flare up. I didn't agree as it was nothing like any IBS issues I'd experienced before, but as samples were being sent for testing "just in case" anyway I didn't bother to argue. I was also sent for a blood test at the same time to check up on inflammation and see how my anaemia was doing (this becomes relevant a little later in the story).

Within a few more days I had what I was now certain was the flu - a fever had joined the mix, I wasn't sleeping and I'd started vomiting. Plus I'd waved goodbye to my appetite once and for all, struggling to keep sips of water down. My joints were all swollen or sore and my left ankle had reached more than twice it's normal size, with purple bruising appearing on the sides and sole of the foot. I had 14 ulcers lining the insides of my lips and on the day I finally decided it was time to head to the out of hours doctor about the vomiting my eye had become so bloodshot and sensitive to light I had to wear sunglasses indoors and cover the eye to leave the house.

As you can imagine I was not a happy bunny. By this stage I was only able to lie pathetically wherever someone helped me get (usually the sofa) and my mum was acting as full time carer - bringing me fresh water, food when I wanted to attempt it and doing her best to help when I was sick.

The nurse I saw in out of hours was a huge help, prescribing me an anti-sickness drug that thankfully stopped the vomiting and was the first to suggest that Crohn's might be my issue. She suggested I head back to my GP urgently and relay my new symptoms to them (this was already the plan, but now I could tell the receptionist a medical professional had told me it was an emergency so she couldn't ask "Are you sure it's urgent?" in that annoying skeptical voice she has...).

The next day at the GP only some of my samples were back and while they looked suspicious it wasn't quite enough to confirm Crohn's just yet. I was given some more advice to help me cope with the symptoms and given another appointment 2 days later to give the lab time to finish everything. It was also at this point that I found out my anaemia had reached pretty dire levels and the doctor was pretty worried about it (at this stage I should mention this was a different doctor to my usual one who I see when mine is fully booked). I was given iron tablets and a repeat blood test, but as I wasn't keeping anything down I had to hold off on taking them for the moment.

The diagnosis

Jump forward to my next appointment and things got a little dramatic. The results were in and my doctor had even called a Gastro specialist to discuss what to do with me - they were now pretty sure Crohn's was the right diagnosis and I was packed off to A&E for some tests there and then. Until this point I'd known I was ill, but I wasn't particularly worried. I'm no stranger to severe symptoms and dramatic illnesses, they always work themselves through and after I'm left wondering what the fuss was about. But on my way out the other doctor caught me for a chat and the concern both of them had for me really hit home how serious this was. I now know that it's because I could've had a blockage in my bowel, which thankfully wasn't the case, but at the time it really spooked me and I became quite disstressed by it all.

In A&E things went from bad to worse. A nurse trying to be 'helpful' sneakily put a cannula in my arm while telling me it was a blood test. Not a good idea for someone with a severe needle phobia I can tell you! Queue lots of tears as everything just got a little too much for me and I was asked to sit patiently in the hallway until a doctor was ready for me.

Ever the drama queen I promptly fainted in the hallway - giving them just enough warning that two nurses managed to haul me into a bed before I went completely out. Admittedly this might have been a little extreme, but it did mean I got to a bay and seen by a doctor faster than it would've otherwise happened!

After talking through my symptoms I was sent for an X-ray of my abdomen (clear) and it was discussed whether I should be kept in overnight or not. It was touch and go, but they managed to secure me an appointment with the Gastro specialist the next day and that sealed the deal on my ticket home for the night. I was to come back first thing for an iron transfusion (something I'd been arguing for since December, result!) and to see the specialist who would decide what to do with me.

The next day we arrived bright and early - entirely unnecessary as everything was running late as usual and it was 3 hours until we saw the specialist. More discussing of symptoms and while I had a verbal diagnosis of Crohn's confirmed, we needed to do all the tests that would tick the official boxes... ideally before I moved to Belfast in just 11 days. They told me to leave it with them, so I had my iron transfusion and went home to start the steroids they'd given me and wait for the appointments to roll in.

Nothing happened over the weekend except for steroids and the first signs of recovery - a little scrambled egg here, less swelling there.. I was still weak and being cared for, but it was a start. Then I got my timetable through for the following week and it looked like this:

Monday: Riggle went to the vets for her check up (even when your baby is furry you put illness aside to take care of them!) plus an emergency trip to the GP about my vision going completely blurry. Apparently a known complication of steroids and something that should ease over time.. still waiting for it to be 100% normal as I write though!

Tuesday: An MRI of my small bowel, the 3rd cannula in less than a week.

Wednesday: Back to work for a few hours as it was my last day and I couldn't face missing out on my leaving lunch! We had a celebratory meal with everyone from work and it was also the first time I ate an actual meal instead of a snack, woohoo! It was also time for cannula #4 for the second installment of my iron transfusion.

Thursday: A day at home to finalise packing (yes, through all of this I was trying to pack boxes with huge help from Momma M and Nan) and take a whole host of drugs in preparation for...

Friday: Cannula #5 and my first (and hopefully last) colonoscopy. It was also the day Chris arrived to help me pack up and move!

As you can see it was a busy week for me! It was hugely overwhelming in every sense of the word and I'm taking a moment out here to say a massive thank you to Kassi, Nan, Chris and especially Momma Marshall for the support they gave me that week. I literally couldn't have done it without them as I would've been a pile of mush on the sofa! From packing boxes, feeding me, listening when I needed to rant it out and even doing my make up so I didn't feel like a complete zombie, they did everything they could to take the pressure off and help me cope with all that was going on, so thanks guys, love you! <3

What next?

Here we meet up with the blog all about moving day so I'll leave the story there as far as timelines go. As for what's next for me medically, the first step is that a specialist will be reviewing all the results from the tests and I assume giving me a final, official tick on the diagnosis. In the meantime I'm in the middle of registering with a new GP over here in Belfast who will then get my notes and my shiny new diagnosis and in theory pair me up with an Inflammatory Bowel Disease Team (IBD Team for short) at the nearest hospital. From there it's all a mystery to me. My understanding is that the IBD Team will be able to give me more information about ongoing management of the condition, information about if/when/how I can get a job over here and how to tell my employer etc. so I'm really just waiting on that now! And taking my steroids of course.

On the health front I'm finally starting to feel close to normal again. There are some lingering symptoms and the side effects of the 'roids are taking some getting used to, but I'm back to looking after myself at last and my appetite has returned with a vengeance, haha!

And now I can stop alluding to a mystery diagnosis, because now you know! Being a predominantly digestive-related illness, there is a dietary element for me to learn about which at first filled me with dread but I'm now actually looking forward to. There's a lot of overlap with the Endometriosis diet and in general it's mostly about keeping up nutrition and not losing too much weight too fast during flare ups, so it's not going to be terribly strict. More an education in even healthier eating, which can only be a good thing!

In terms of the blog I'll be sharing any helpful information related to that journey, as well as any tips for keeping healthy and coping with symptoms where I find them. (note: as always these will be my experiences and not medical advice - never try anything without the help and advice of your doctor!)

So... questions? Comments? Experiences from people who've shared a similar journey? I'm completely new to this so I welcome any and all advice!

I'll wrap things up here because this is possibly one of the longest blogs I've ever written and Chris is waiting to plan food with me, haha! So until next time my friend...

Love,
Ami
xx