Ass Issues

Needless to say it's certainly been a little while! And even though it seems wildly out of context, Merry Christmas and a Happy New Year to all. So now to 2018.

Brief update on what's been happening: got discharged from hospital after my stay in November (don't think I'd cope if I was still there now) and I had everything crossed for a lovely normal Christmas period. Wanted to start 2018 with a 'new year, new me' attitude and all that shite...Dyed my hair blonde. Strong start. 

From a general Crohn's point of view though, we made it to January in a relatively normal state - no more hospital admissions, and I will take the small wins as and where I can! Also had both an outpatient appointment and a catch up pre-Christmas with my consultant. I mean it wasn't great news?! Essentially, your inflammatory markers should be around 50 and mine was coming in at 507. Whoopsy. Have a vitamin D deficiency too, but as far as I'm concerned, if ever there was an excuse to go ahead and get the honeymoon booked it was my body medically crying out for a bit of sunshine. And I finally got my iron infusion - second time lucky as the first time I had a temperature after the flu jab. Swings, roundabouts, etc. Was also still on the waiting list for the EUA from September - and herein lay the problem; THAT'S A VERY LONG TIME TO HAVE A POORLY BOTTOM.

But as of yesterday, I got my long-awaited EUA. All up in my personal space trying to figure out what exactly is happening with my ass. The surgeon came to see me beforehand as they do, and tried to explain to me what was going to happen. As with any type of IBD surgery, it's very much a case of consent to almost everything and then see what you wake up with. I know this. Yesterday was my 16th time in theatre. It's just a bit tough when they essentially say they don't know what's wrong with you.

I had an MRI in November and it showed that there was unusual activity in my pelvis. So then I was sent for the flexible sigmoidoscopy but they couldn't find anything? Yesterday's surgeon spoke to the people who carried out the MRI and the Flexi to literally try and get to the bottom of it. But to no avail, it seemed. The surgeon also mentioned that maybe the only way we can stop my bottom being such a pain, is to stop using it all together. That's an intimidating thought as having a permanent bag in this scenario would be more of a choice, rather than a necessity from emergency surgery. Brain. Fried. But hopefully that's a long way off before we have to weigh up all the pros and cons.

However, I knew I was pinning a lot on this EUA. Very much viewed it as: if you're physically up in there then surely you can see what's happening?! Alas, nothing is simple and to the naked eye they couldn't find any polyps, fistulas, abscesses or fissures. She did however confirm that I have erythema and induration on my right hand side. Personally I'd almost prefer her to tell me I just had piles like a normal person who's been pregnant but then that would be too simple! Anywho. After my EAU the surgeon came back out to see me and explained what she'd managed to do. Or not, in this case. I'm going to need an urgent MRI to reassess for presence of sepsis, with the plan to go back into theatre as she didn't want to delve further when going in blind. 

There was talk previously of botox, applied to the internal sphincter (cue jokes about the most youthful bumhole) but actually that was a no-go from the get-go. The botox paralyses the muscle and the last thing I need is help to go to the toilet. Any more urgency and I would be in a position where I thought I needed the toilet toilet and it turns out I'd have already been. I'm not even 30 yet. Let me get to Nana age before I start shitting myself on the regular!

Next on the list of fixing me, is a SeHCAT scan that I have tomorrow and again next Wednesday to see if I have a bile salt malabsorption. This is a double edged sword for me as it'll either show that yes indeed I have something wrong. Not ideal, but at least we'd know what we're dealing with. Equally if it shows that I don't have bile salt malabsorption, then we're very much still wondering what is wrong with me.

In other news, I started seeing the hospital psychologist. She's been amazing. She's helped me figure out that actually I am pretty well equipped with the 'tools' I thought I needed, and that maybe - just maybe - my expectations for myself were a little too high and that sometimes it's ok to just be ok. Being able to shift my mindset ever so slightly and not give myself a hard time when ill has done me the world of good. I feel more like I can take on the challenges Crohn's throws at me, whilst also maintaining my mama skills I was worried I'd lose because I'm the 'poorly mum'.

Towards the end of our last session we briefly discussed body image. I'd like to delve into this in slightly more detail so will do so in another post - mainly because it's something I've been struggling with of late, as I don't know what I look like anymore. What is my body after pregnancy and Crohn's flares? What shape am I? Who knows?! I certainly don't.

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Circus Act

No, I'm not joining the circus. Although if there's a space available for a Bearded Lady?

Haha, lies. I have a goatee instead.

(I don't, and that is not me in the picture - 
just for added clarification!)

I have called this post 'Circus Act' because I am fed up of jumping through hoops to see someone from the hospital.

Why is it so hard?!

I went to the GP yesterday because I am still in pain, bloated and generally mehh. And I wanted to see what was happening with my scan follow up. But according to the doctor I saw, abdominal fistulas are not a painful thing to have as they're embedded deep in the tissue. Erm...

I beg to differ my friend. Well, not my friend. My relatively unhelpful doctor man.

To be fair to him though, after his ridiculous sentence re my pain, he put together a letter which was addressed to my illusive surgeon and also my gastro consultant. It said everything that I want to say to them; how I'm close to making a complaint as it's gone on for so long, how I have no idea what's happening with follow up and no one seems to be telling me anything, how I have on-going symptoms which, quite frankly, are not ideal for general day-to-day living.

I then asked when I could expect to hear from someone at the hospital. He said the only thing I could do was to wait until someone gets in touch. Heard that before!

Fortunately (I guess) I have an outpatient appointment with the gastro team on 20th May. So if I haven't heard anything by then, at least I will be in the hospital speaking to a person face-to-face. Except this isn't even anything to do with the gastro team?! They've already told me it's for the surgical department. So God knows where that leaves me in all this?

Maybe it's better I join the circus after all...

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Scan Ramblings

The original draft for this post was short and sweet. But by default it has turned into another late night/early morning ramble because I can't sleep.

And so we begin...

I made a friend. A friend who was also having to drink TWO JUGS of ridiculous laxative type water: that cleared me out big time. [I just love the accents, 0:32] Cue mini scuffle between the two of us for the toilet.

She was under investigation to see whether she had Crohn's (cheeky opportunity for a blog plug, but also for support to know she's not alone, even though it may sometimes feels like you are.) But meeting her reminded me of how messy your thought patterns are when you're first finding out what's wrong with you. And even now, when you know what's wrong with you, you just need to know *specifically* what's wrong this time.

I know we didn't exchange numbers, but if you are reading this, I hope you're ok and if you need anything please get in touch.

It's crazy when you actually take the time to have a mini-reassessment of how much your life alters when you're diagnosed with Crohn's. Well I'm sure it would for any chronic disease...but I have Crohn's so I couldn't possibly comment on others - I have no experience!

It isn't just the obvious physical side of things that change; symptoms and what not. It's the mental side; how your perspective on things can be so different from what they once were.

When you're going about your daily business and realise that you've already done a mental calculation of where the nearest toilet is, can you get there in time, god I hope there's toilet paper, oh it's fine I have tissues in my bag already. Maybe even some spare knicks...just in case.

Things like that were never something to be concerned about before. But back to my scan...

I got scanned - lying on my stomach, wtf?! Got blurry vision from the injections, said my goodbyes and plodded on (both figuratively and literally).


That's it. I have no more news haha. I am now waiting for the cogs of the NHS to get turning, as I eagerly await what they've found inside me.

I am scared though. I feel like a vain, shallow person too. And I tell you for why!

I was Google imaging (don't) enterocutaneous fistula as I have discovered that this is the medical term for an abdominal fistula, which is intestine to outer skin. And the potential op/healing/management/scarring scares the living shits out of me. It's all just so open! And just, there.

I won't put any pictures on here in case some of you are reading this with your lunch or dinner. Wouldn't want to make you ill!

I already have a few scars on my tum and obviously I would rather feel better, than have less scarring but with aliens inside me. But I just feel like I'm going to need help to essentially cope with how I will look after surgery. It just seems so, I don't know, bleurghhh.

Pfft. My head just seems full again, like it was when I first started my blog back in January; so many questions, not so many answers.

In Other News

Now I'm not sure if I'm being paranoid, but I can pinpoint particular areas of excruciating pain on my tum. Plus the whole bottom-right-hand-side-not-my-actual-bottom-quarter of my stomach still feels incredibly numb. I suppose the best way to describe what it feels like when I touch the numb bit is this...

When you were a child (or a not so sensible adult) and you tied an elastic band around the end of your finger until it went blue. And the you touch things with that finger whilst you wait for the blood to come back. It's like that. You know you're touching it, you can feel it a little. But then also can't really feel anything at all.

So there we are. This week I am on abdominal-surface-busting watch, NHS hunting and trying to find out what happens now.

For a girl like me who loves a bit of organisation in my life, this is not so easy!

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PS: Sorry-for-all-the-hyphening
PPS: I know I'm all wobbly-brained again; I shed a tear watching Ashley Banjo's Secret Street Crew earlier because it made me miss my dancing days. I'm officially a worried wimp. For the international readers amongst you, to be fair even the UK guys, it is not a show to cry about. Ever.

Balancing Act

Hmmm... yesterday didn't go so well.

Went to work as normal, had a niggling pain and felt a bit spaced out - but planned on just cracking on with the day.

Then I threw up. And then again.

Cue journey home and the hope that I didn't vomit on the underground.

When I got home I had some Oramorph, as it's the only painkiller that totally wipes out the pain. But it also meant that I was knocked out for 5 hours (didn't even get to watch the whole of Pocahontas!)

So this morning I have decided to work from home and will be going into the office this afternoon for a meeting. Power through, and all that.

It's just soooooo frustrating. And it's wearing me down.

It's the unpredictability of what's going to happen with my MRI on Friday...what I'll be told in the follow up appointments...and what this means for my own life and working life.

I'm not sure how to find a balance of doing 'normal' things, when I don't even know the true extent of what my insides are doing and what happens next?!

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Little bit shit

As you all know I had my scan yesterday; originally planned as a CT and changed to a contrast ultrasound.

I didn't eat anything yesterday (as informed by the accompanying rules to the letter) and arrived ready and waiting. Fortunately it wasn't a contrast ultrasound after all, so no weird aniseed/vanilla/medicinal drink to have *sigh of relief* it was just a normal scan - I just needed to be empty inside for them to have a good ol' browse.

In my mind I told myself that I didn't really care what they found, or how bad it was, as long as I knew what I was dealing with...

Well they found something!

It seems I have an abdominal fistula. That's a little bit shit.

At this point I may have shed a tear or five.

I don't know if I cried because it was relief at there being a reason why I'm so bloated. Whether it was pure dread because after already having two previous fistula in my ass region, things didn't go so smoothly [did I tell you the time I had 9 perianal abscesses?!]

So yes. This it seems, is what's giving me grief.

Although not talked about much, abdominal fistulas are dangerous and difficult to manage for both the medical team and the patient.

By definition, a fistula is an open passage connecting the abdominal organs to the external surface; in layman's terms, it's a hole between one of the abdominal organs out to the skin's surface.

Based on when the problems started going crazy, I'm going to take a stab in the dark and state that this is the reason I have the fistula:

Fistulas caused by complications from surgery may involve an incomplete closure of an incision made on an organ or from an inadvertent nick by the scalpel that doesn't heal and may become infected.

Read more: About Abdominal Fistulas | eHow.com

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I got told I will be called today - haven't as of yet - with a time and day next week to go get MRI'd for further detail.

Also on the chase for a follow up appointment with the surgical team. AGAIN.

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To cleanse my brain, I called one of the lovely girls I met in hospital last night, as I felt like I needed to question/worry/rant about what I'd been told and I know she's been through something similar.

She was so helpful and told me what to look out for with my scar, how I was feeling etc.

Although I've had two fistula in my bum/pelvis, the abscesses it caused were near the surface, but were never really visible... unless you were in a yoga-twisted-acrobatic-move-with-accompanying-mirror. And by 'you' I obviously mean me. Because it would be a little bit weird if you were doing it too.

Whereas with this abdominal fistula, it's right in my insides and I'm assuming from what I've been told, it will be trying to work its way to the surface - typically through the weakest part of my skin. How convenient I have a 10cm scar right in that spot.

Apparently the redness of my scar should have gone down within (maximum) a month post-op. Well this is what mine looks like today...

Outfit theme of the day: Club Tropicana drinks are freeeee

 

  

(Please also excuse the lower trouser elastic imprint - part and parcel of the bloat and wearing clothes)

But as you can see, my scar from my kidney op is nice and white (near my belly button). Granted this was from 2009, but once the scab fell off it was pretty much like this straight away. So another thing to keep an eye on, I guess!

If I can get anything out of this ridiculous situation, I'd hope that it's at least a few months of normality and that it won't be too much longer until I generally feel better - both physically and mentally.

I'm doing ok. Just feel a bit let down by my body haha.

Fret not, as in the meantime, I shall look forward to the weekend where I shall be painting my nails, getting my hair cut off and enjoying what's left of the sunshine!

Toodleoooooo

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