10 Year Challenge

You may have been aware of the latest internet craze called the #10yearchallenge? Essentially a then and now (or at least a 'then') from 2009. Why someone felt 2019 was the year to look back from is beyond me? Surely 2020 would have been better, as a multiple of 10. Or maybe I'm just thinking too much about this.

Anyway. I hopped on the bandwagon on this drizzly Wednesday, after many a day of scrolling through various social media platforms seeing people's throwback to a decade ago. Glow ups, etc. Lovely time. And I put up a picture of me from ten years ago.

But it wasn't until I started looking through my own photos properly from 2009 that it dawned on me: I've been having my own 10 year challenge. January 2009 was the month I got diagnosed with Crohn's. 2009 was the year that what I thought I knew of my health was all change for forever more. A whole decade of diagnosed IBD.

I pretty much spent all of my 20s - in one way or another - poorly. In hospital. Lying down because it hurt to get up. Sleeping on a narcoleptic level. Fat. Thin. Steroid moonface. Taking medication. Injecting medication. Having an IV for medication. Keyhole surgery. Robot surgery. Slice me open surgery. Hospital admissions. Inpatient. Outpatient. Too many perianal abscesses to mention. Too many visits to a toilet. Too many medical professionals looking up my asshole.

In January 2009 I was presented with a challenge I didn't know I'd have to face; a challenge that had mini-challenges en route. But Jesus Christ it has absolutely been the making of me.

And here we are now! Yes OK, I'm like 17 operations in (who's counting?!) But I am in my 30s. Married. Mama. Now a homeowner (what a palaver that was - will pick up that topic of convo another time). Back working on a magazine portfolio that I love so much. Things are actually really good! And I'm so happy that everything finally seems to be falling into place for me and mine.

Sure, I still have to do an assessment of where all toilets are if I'm out for a family walk. Or there might be times where Mummy just needs to have a quick powernap before we watch Teenage Mutant Ninja Turtles for the 6th time that day. There might also be times - like now - when I'm sitting on a train and I catch my reflection in the window and it's apparent that my tired bags have developed their own bags. Eye bags on eye bags. It's quite a look and I don't think any form of makeup layering is going to help this face out.

I don't mind you see, because besides being rather tired, I am content. I have spent three days in London doing meetings and what not for work and it brings me joy. But not as much joy as stepping off the train to be greeted by my husband and son will bring me. My boys. My little team.

To be honest...I'm not sure where this blog post is going. Am I waffling? I just knew that I had to take a moment to acknowledge the ol' decade long anniversary of knowing my insides were broken. And that however shit things might have seemed at times, it works itself out. Ish*

Here's to the next ten years.

X

*I mean nothing is a guarantee. But all in all, I guess if you can find the positives where possible and then just ensure to have a ruddy good time?

PS: I'm running out of sentences to apologise for my MIA blogging. I do get annoyed with myself that it's so infrequent. But I guess it's going to have to be as and when, probably the best way forward. So until next time...(whenever that is!)

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.

X

Sigmoidoscopy What?!

Well the good news is I saw my consultant this afternoon. The bad news (for my bumhole) is that I have to have an urgent sigmoidoscopy tomorrow.

Nope, I'd never heard of it either.

Here's a diagram that should make it a bit clearer:

Hopefully the doctor's face will be a bit further away than that?! Good lord.

It's a good job I'm used to these consultant appointments though; nothing says 'a normal Thursday afternoon' like pants down, knees to chest and invasion of the personal space.

But at least he couldn't feel any abscesses. So that's a plus. Also got my bloods done and had my steroids increased to 8/day. More fun prednisolone times ahead. Just want to know what's going on in my body!!

In the meantime, its liquids only ready for Anal Invasion v.2.

Needless to say, it'll be a different type of Friday feeling tomorrow...

X

Hospital Fun

HI GUYS!

I appear to be becoming quite slack at regularly posting - but it's only because I've started a new job and it is all very very busy!

I'm sure once everything has settled down it will give me the opportunity to post more often.

So a quick update from where I left off:

• Had the hospital last Thursday; generally good news with regards to results from the colonoscopy and MRI. My doctor did tell me that although there were signs of inflammation, it was general Crohn's stuff so nothing I can really do about that other than keep on the meds!

• I've officially been put back on Azathioprine now; didn't get on well with this AT ALL last time. But he explained how I shouldn't really be on Humira on its own (why I didn't know this before is beyond me)

• And obviously I did the honest thing and told him about the lump on me backside. He said it seems superficial and not too much to worry about - but because of my history he has put me on antibiotics. Not Metronidazole though which is a plus! As after 10 times with that and 10 ops regardless, it's nice to know there is an alternative. However, as with all my lumps on bums, if nothing has changed within ten days then I am back into see him for a meeting with the surgeon for another EUA.

Reeeeeaaallllyy hoping it sorts itself out as I love my new job and don't want any unnecessary time off (one could argue an op is in fact necessary, but you know what I'm trying to say!)

My doctor also feels that once I see the dietician (mid-October) that I could actually be in a position where my Crohn's is relatively under control. Music to my ears!!! But he did say he's still a bit baffled with the bloat as medically, all my things check out normal...

Now. My old hospital sent me a letter the other day. This was a double-edged sword really, as it contained the results from the CAT Scan I had a little while ago (good) but also a sentence which really ground my gears (bad)...

"Miss Stevens did not attend her Outpatients appointment today. I hope this is not been due to an administrative error."

WHERE DO I START?!

I'm not too sure how many departments I have to call again to inform them that I have left the hospital and joined a marvellous one?! Also. Why be so quick to reference my not turning up/administrative error when I spent over six months fighting with the administrative system!?

Anyway, ranting aside, the letter said the following: The SeHCAT scan has revealed severe bile salt malabsorption with a total body retention at day 7 of 1%.

That doesn't sound too great, but it seems to be easily fixed. Doesn't explain the bloat though, just the watery insides haha (sorry if you're reading this over lunchtime)

And on that note, I am off to get some lunch myself.

Taraa chaps!

X

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

***

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.

***

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

X

Arse, Bottom and Bum (squared)

For all those mathematicians out there, you may have noticed I wrote three different words for your backside, followed by 'squared'. That's because...

3 x 3 = 9

And 9 is the number of abscesses I have had over the last three and a bit years.

The only way to talk about these lovely little lumps and the pain/trouble/embarrassment they've caused me, is to give you a brief overview of some of the more memorable ones.

August 2008

This was the first abscess I had, and will always be the most memorable - not only because of the pain before, during and after - but because I was having to self-pack the open wound when in Cuba with the man. Oh and whilst in Cuba we got stuck in Hurricane Ike. First time the resort had been hit by a hurricane in 45 years...not ideal!

Once an abscess has been drained, it must be packed with what I named wadding. Think of it as a cavity in your tooth; it must heal from the inside out to avoid further infection, so less wadding must be put in each day. FACT: This is because skin heals faster than tissue.

The pain is indescribable. It's simply awful. I don't know if it's because it is unnatural to have medical tools digging around in your body tissue when you're awake, or if it's because they were perianal abscesses. (Hopefully I won't need to explain exactly where they were...? I'll give you a clue: perianal)

But I got through it and back to uni and continued my investigation into why I got this little bugger in my bottom.

June 2009

This was my second abscess in a matter of months. The difference with this time was I knew I had Crohn's and they were able to tell me that abscesses were something that I was going to be prone to. 

However I soon learnt that what happened back in August with the medicine, was going to be a pattern that kept repeating itself: "Take the metronidazole, the lump will stay but the pain and swelling will go." YES. YES IT WILL....NEVER. Here we go again...

August 2009

This one is memorable because it was so close to my kidney op. And it was also the one where my surgeon at the time (from Chelsea & West) decided the best course of action was through surgical intervention and to place a seton inside me.

For ease of understanding, a seton is a surgical-grade cord which (in my case) went through my bum hole, threaded through the fistula embedded in my pelvis and came out of my bum cheek. This was then tied together and gravity (?!) would pull the wire up towards the surface. Ta da!

The aim is to allow healing of the fistula without too much interference, as too much prodding down there could lead to incontinence. This was obviously not something I wanted to be worrying about! "Oh I need the toilet...ahh it appears I've already been."

I got told I would have the seton in for around 3 months, where they would then remove it and all would be well. Except I got another three abscesses whilst with said seton, which meant me and my wire were together for around nine months.

May 2011

Now this has to be my favourite of all the abscesses, because the circumstances are so ridiculous.

I knew I had an abscess and was back on metronidazole, but I also had a weekend in St Ives planned with one of my best friends and decided I was going to go, whatever. And what was to say that this time the meds wouldn't work? I had a longer prescription, I felt better in myself, I had high hopes.

So we went out for dinner and I knew on the walk that things were not great. Skip a few hours and I'm throwing up blood in the toilet, my best friend's on the phone to the ambulance and I have an ass throbbing like I'd had the skin ripped right off me.

Cue operation #8 down in Truro A&E and an odd phonecall to your boyfriend (who's currently in Bristol) to tell him you're about to have more surgery....in Cornwall. On the plus side, I did learn that St Ives is probably one of the most relaxing places to recover. And I also got a spontaneous mini-vacay as the man came down to see me. What a marvellous ending to an unusual (and extended) weekend away!

Last but by no means least...September 2011

This was my last abscess operation where they found that I actually had two fistulae and they were able to lay open the one closest to the surface. And it seems that that was the one that was causing me problems as (touch wood) I haven't had another one since. Yeahhhhhhh!!

I realise I've basically mentioned them all! But as you can gather, I pretty much had an abscess encounter every three months from June 2009. It's been exhausting.

Without ending on a bum note (pun intended) that's the end of my abscess recap.

Hope it wasn't too detailed for you haha.

X 

Diagnosis

So I'm one abscess in, have sat with the Gastro specialist at Chelsea & West and I'm awaiting my first colonoscopy in order to find out what's going on with me and my body.

I have to say, quite honestly, the colonoscopy was one of the funniest yet strangest hospital experiences I've had. For starters, nothing quite prepares you for the amount your body expels the day before your procedure!

And then there's the whole awake sedation. Which essentially is feeling completely off your face, slurring your words and laughing because you know you sound drunk, but keep talking because it's funny. Funny until you realise you currently have a camera up your bottom. Oh and you can see your intestines on the screen next to you.

To give you a general idea of how it went:

"You have a large intestine like a helter-skelter." How fabulous! And we're not even half way round...
"It's also severely ulcerated."  Again, I woop with delight at this news.
"Ahh. Seems we can't get through into your small intestine as it is very narrow." Well that has made my day.

OR NOT.

I get wheeled out, sobered up and I'm now sitting on a bed waiting for them to come and talk to me, tell me in detail what they've found. More so because details from during the procedure seem to have got lost in the fuzzy haze that is awake sedation.

"We have taken some biopsies. But it seems conclusive that you have Crohn's disease."

Cool. So what is that exactly?!

X

That awkward moment...

When you're in a leotard and tights, in a ballet class at university and you're worried that if you do a split leap you may inadvertently shit yourself. Not ideal, I think you'll agree?

Well this was pretty much my thinking during every dance class whilst aiming to get my BA Hons in Dance Studies at Roehampton a few years ago.

Luckily I never actually pooed whilst dancing. But still, I certainly mastered the art of the quick strip when getting to the toilet (FYI, never underestimate the difficulty of stripping when in 75 layers of Lycra)

So there I was: just turned 20, in my second year of uni up in London, living the dream of dancing every day. And then it all took a casual turn for the worse.

And by casual, I mean UTTERLY HORRENDOUS.

It's the little things you notice at first...how suddenly it's a lot trickier to finish a meal without feeling sick. How the ones closest to you start wondering why you're pushing your food around your plate, but never actually finish a meal. The weight loss. All of these things tend to compound to (apparently) mean one thing to the ones who love you. I must have an eating disorder. Of course! How silly of me to think otherwise (?!)

To be honest I can see where they were coming from; I was a dancer up in London living away from home for the first time. Each time I was home from uni I was that little bit thinner. Eating was tough. When I'd finished eating I sat in the bathroom for a while. Didn't look great.

But what they didn't realise is that at no point was I voluntarily getting my food back out my body. If you can find me anyone who can poo on demand, well...I'd give them a bloody great high-5.

And this is what I found most concerning. The amount I had to go to (what I call) the toilet-toilet.

Now after reading up on this, the average amount for a normal person to poo can range from three times a day, to once every three days. Either way, I was suddenly going a lot more than this. And by a lot more, I mean at one stage going 18-20 times PER DAY.

So this lead me to visiting the Student Medical centre on a regular basis, as I was convinced all was not well with my internal plumbing.

"You've got IBS"
"This is your normal"
"You may have Coeliac disease"
"Let's strip back and build up each food group"

I'm sure if you are a fellow IBDer, then these will most likely be things you've all been told at some point.

I had another blood test...turns out I had Helicobacter Pylori. To you and I, that's a duodenal stomach ulcer which was in some way helpful as it explained the constant-vomiting-when-eating I'd encountered. But I still wasn't convinced this was my main problem.

So I gave it a fair shot, I did as I was told. That was until I had a quite horrifying experience whilst on the toilet-toilet.

WARNING - descriptions ahead
Those of a queezy disposition may like to skip the next paragraph

The best way to describe it would be if someone had poured a tin of red paint into my toilet; completely liquid and red. Yes, you guessed it! It was blood. A lot of it. And at this point I'm around 7 and a half stone and not really able to keep anything in me, at either end. Unsurprisingly, I was shocked/panicked/scared and so I cried. I sat on my bathroom floor and sobbed. What was wrong with me? Why was this happening?

Come morning I'm back down the medical centre for another blood test, desperate to find out what was going on. But still nothing conclusive.

*Forward to the Summer holidays when I'm back at my home-home*

I have a lump on my bum and it hurts. Sneezing hurts a surprising amount (so many muscles down there?!) and it doesn't seem to go away, so naturally I go to see my GP. Turns out I have an abscess?!

"Take these antibiotics for three weeks. The lump will stay but the pain and swelling should subside."

Sure it will...

Three weeks later, the lump is still there and if anything it's bigger. So I see a different doctor and he sends me straight to A&E, where by all accounts, I should have gone three weeks prior.

Long story short: abscess drained and packed and a few weeks later I'm back at uni and at the Student Medical centre, hospital note in-hand.

"You need to see a Gastroenterology specialist, now."

Oh hi Chelsea and Westminster hospital. Seems you and I are going to become good friends...

X