Another Complication & Leaving Home

In 2017 I was diagnosed with an abscess in my pelvis – a complication of Crohn’s Disease. Almost a year to the day this year, I am faced with the same problem again. While I am grateful to have been lucky enough to spend 9 months painless and symptom free, to be hit with this again is incredibly frustrating.

What is an Abscess?

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Okay, so this is diagram is pretty lacking scientifically but its the simplest way I can explain it. While in a normal colon white blood cells attack bad cells and bacteria, in the colon of someone with Crohn’s Disease the white blood cells attack the good normal colon cells, breaking down the wall of the colon, creating a channel. Any bad bacteria now gets trapped in this dead end and builds up to form an infection. This then continues until the channel reaches the surface of the skin and bursts though. This is then known as a fistula. So in short, imagine Pacman, but way less cool and retro.

So, from the outside I look like a pretty averagely functioning human being, the inside at the moment is a very different story. So its no surprise the most common response when explaining this is “but you look so healthy!”. While I used to find this comment very frustrating, I take it as a compliment: my insides are falling apart, I’m off my tits on codeine and yet I still manage to pull it together and look fab. Recognition appreciated

Just because it cant be seen, unfortunately doesn’t mean it cant be felt. I can only describe it as having a really intense bruise like feeling in your butt cheek. The location of this means thats it hurts to walk, sit, move – basically it hurts to live. And not the same level of pain as your average bruise, the kind of pain where high doses of codeine only take the edge of it. Naturally, I’ve got really good at my fake smile.

 

Whats the fix??

Last year I returned to the UK for an MRI scan to locate the abscess and a few days later I received a phone call to come into the hospital for surgery the next morning. This surgery involved extended the channel to the surface of the skin, allowing the abscess to drain. In order to allow it to fully drain and heal itself a thing called a Seton Stitch is inserted. This is what I have referred to below as a medical grade scoobie, (remember them??) as quite honestly thats the only way to describe it. This tiny rubber string is inserted into my bum, up through my colon, down through the channel, out of the surface of my skin and ties in a little bow. This stays in place until the body heals the channel enough to push it out naturally (which is apparently anything from 6 months to 60 years for someone with a compromised immune system such as myself). So yeah, I have a bow in my bum. The visible part is only roughly an inch and not visible whatsoever unless I’m in a somewhat compromising position. Never the less, I’m pretty grateful I have a boyfriend, don’t fancy trying to explain this one to a one night stand. Mood kill.

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Now’s the serious bit…

The part of all this I’ve never really spoken to many people about is the surgery and recovery itself. The whole thing was a bit of a rush and I was in the hospital ready to go before I had even contemplated what was really happening. On awaking I found myself in an ears nose a throat ward – gastroenterology was full and I was a last minute surgery. I can’t be sure of exactly why, I suspect my notes were still with the surgeon, but nobody seemed to be fully aware of the operation I had just had. When the anaesthetic appeared to start wearing off I pressed the call button to ask one of the nurses to help me get to the bathroom. A young nurse appeared and helped me / half carried me to the bathroom. I can only assume due to the awkwardness of us being the same age, or perhaps that she wasn’t fully aware of my current condition, that she didn’t come into the bathroom with me. Alone in the bathroom I realised my gown was drenched in blood. Confused and still only semi conscious I press the call button in the bathroom, but no-one comes, it takes me every ounce of strength to reach and open the bathroom door. Opening it appears the nurses must be occupied. I look towards my bed, my blood stained sheets, and realise that that mere 15 meters is a marathon at this moment in time, and I cant even take the first step. I burst into tears, sparking the attention of one lovely old lady lying in the bed closest to the ward door. She starts to shout into the corridor and thankfully somebody (for all I’m aware or can remember I don’t know whether this was a hospital worker or just kind human being) helped me back to my bed. Those mere seconds of being stranded truly provoked the realisation of just how debilitating this illness can be. I realise I’ve very much changed the tone of this blog with this last paragraph, but I think sometimes its really important to admit that my ever optimistic and jovial approach to dealing with this disease isn’t always possible.

Other than this scary moment, my recovery went fairly smoothly and after a few days I was out of the hospital and after two months I was back to my normal self, able to walk and run normally again.

 

That’s last year – what about this year?

Well I’m currently typing this sat on the plane from Faro to Gatwick winning the award for most pissed off passenger. With my MRI due in a few days there isn’t a great deal of certainty in anything I say. After being sick for a long time you really get o know your body and for me this time I am pretty confident another surgery is coming my way. The intense bruise pain came back, this time worse than last year and I’ve gone into what is called a ‘flare’ in Crohn’s Disease terms. This mean I’ve come out of remission and my disease is active, this causes abdominal pain, exhaustion, nausea, joint pain and last but not least I’m back to he glamour of shitting 15 times a day. As always I like to try and find a positive in these situations so I’d like to point out that when nothing you eat actually stays in your body for longer than twenty minutes, you tend to lose a few pounds. A silver lining when you live in a country in which beer is cheaper than water.

Leaving Portugal really feels like leaving home this time and it’s made me realise how much I love living there. While it might look like I’m leaving some sunny season work to come back to the real world. The reality is, my life has really become Portugal. My home is there, my car, my job, my wonderful boyfriend and an amazing group of friends. These times really make me incredibly grateful to be living such an incredible life out there, I just wish I could live it without these interruptions. But nevertheless I’m doing my best to not let this faze me, I’m going to fight tooth and nail to be able to live my life the way I want and I won’t let this disease stop me from doing what I want to do.

 

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PS. Thank you to @ChicksOnWaves and @DebsAlexanderPhotography for this lovely photo

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