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Tuesday, 30 January 2018

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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Friday, 24 November 2017

Headspace

If you follow me on social media, you would have seen that this week has been quite a challenging one for me - especially with regards to my Crohn’s and how I’m maybe not handling it in the best way this time. It’s an emotionally draining disease: the rollercoaster of feelings you can have in such a short space of time is quite overwhelming and this particular flare up seems different. I don’t know why, it just does. In all likelihood it could be down to the fact that I currently have no ‘normality’ yet; I’m still in a settling in period. My mundane routines are shot to hell what with the relocation from London, being a newlywed, going back to work after Maternity Leave and the mum-guilt associated with that. My support network is still there, oh for sure. But my personal go-to coping mechanisms aren’t necessarily.

I guess I just don’t feel like I have that guarantee this time, where my mind doesn’t need to flap so much (I have zero reason to think things won’t be ok and I am more than aware at the irrationality *eye rolls at self*) But for instance, these are the things I worry about…how I haven’t been back at work long enough to feel like I can prove myself, e.g. when my insides go mental don’t worry guys! Because when I’m healthy, oh I’m grand. Or to know how to function as a Mummy when really poorly. Or worrying about WHAT IS THE ACTUAL PLAN WITH MY CROHN’S. And when you’re sitting in a hospital bed on your lonesome in the middle of the night, you can’t help but let your mind wander.

There just seems so much uncertainty and for a woman who likes a plan…this one’s tough.
I spoke with my IBD nurses at the hospital and they recommended reaching out to the psychologists here. I’ve always been very vocal how for me counselling has been a great help – I’ve tried a variety over the years from one-to-one youth counselling, to a more general CBT approach and also group sessions for people with other chronic conditions. And now I feel that I need another outlet. For who I am as a person now. As a mother. As a wife. As a new West Country bumpkin. Where do I fit in and how do I learn how to manage with my Crohn’s for the current set up? Excuse the wanky term, but that’s a ‘journey’ that I’m going to have to go on and hopefully find out some of those answers.

I need to learn that only I put pressure on myself to be worrying for everyone one else in the world. But hey, once a worrier! But also that it’s key to know it’s all right that there’ll be things out of my control and everything will be just fine whether I’m in hospital or not. Whether I sit in this bed for another two weeks or I’m allowed home tomorrow. And that I’m also no use to anyone if I don’t allow myself time to get better: do as I’m told. Do as the doctors say. Rest when told. Let my body do its thing. Because my Crohn’s alone looks to be laden with many more hurdles and challenges over the coming months and I need to be ready for that. And it’s something I’ll be sharing with you all for sure.

From a more general standpoint as it stands with regards to my care, we are yet to manage a full meal. However we have had the camera up the ass today – wonderful Friday morning activity – and also had another x-ray to see what the bloody hell is happening inside me. There is a pesky 30cm section of small intestine that was found back in Summer 2015 and it was something we were ‘keeping an eye on’. Well the eyes have been subsequently peeled and nothing has changed so… but herein lies the problem. 30cm is a sizable chunk of small intestine. We don’t just whip that out willy nilly now guys. When discussing the large intestine, there are slightly more options surgically speaking – in that you can actually take it out completely if needs be. But when it comes to the unusually named small intestine (bearing in mind you have around 6m), you can’t live without that. And the more you chip away at it with resections, the more you leave yourself susceptible to future complications. Nutritional issues, feeding through tubes, being open to more serious diseases. Lovely stuff. So we’re tackling this from a medical point of view first. We’re mixing up the meds. We’re changing the doses. We’re hoping that I haven’t indirectly been overdosing on azathioprine as my weight has dropped. To quote the surgeon, is the resection off the table? No, not particularly. Is it something that requires urgent intervention this week? Also no.

So it’s time to get my game face on. It’s time to get my headspace sorted. Take those 3 minutes a day to meditate and zone out. To plan whatever is within my remit to prepare for.

And know that the rest will sort itself out.

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Tuesday, 21 November 2017

First Year

One full year since we welcomed our little boy into the world. And now we're parents to an already independent, chatty, funny little boy who has (somehow) managed to use his eyebrows to express his feelings - in context - since the day he arrived.

I say it every year, but this last year has been one of the quickest in my life. It has also been simultaneously one of the most rewarding and challenging.

Let's take it back to the start...

Anyone that followed my blog previously will have read the journey we went on throughout my pregnancy with regards to my Crohn's. Around this time last year it was my elective c-section date; elective due to previous abdominal Crohn's operations; c-section so my arse didn't fall out when pushing. Our bags were packed and off we headed to the hospital on the Friday morning ready to have a baby by lunchtime. And we did! Everything went as planned as it can and we were home by the Sunday. A weekend of new baby.

How that was a year ago is utterly beyond me. Even when looking at photos, it still doesn't quite compute that I've been pregnant, had a baby and now he's one.
But it's times like this weekend just gone, at his first birthday party (which let's be honest, he had no clue about, because why would he?!) and seeing him with his little mannerisms and movements, his interactions with others; it's intriguing watching him grow and develop into a proper little boy. How much he's changed over the last few months in particular - so close to walking...a few waddles and then a slow sit down to the floor again - yet you can see that determination there. It's fascinating and it makes me excited for what else is to come as he continues to grow up and become his own person.

Can we just take a moment to discuss a child's first birthday party though? What a strange party to have. The guest of honour is completely unaware of the occasion; it's mainly for photos and the memories for others and to look back and say "this is what we did for your first birthday". Because you can't do nothing, it's their first birthday! First ever celebration of birth! Equally you know that from age 2 and onwards, the parties will be much better... So you do baking in rainbow coloured sponge, you get the pink wafers and party ring biscuits and you display the finger food along side the bottles of squash. And at least I finally had a good reason to eat kids' party food: I was hosting an actual kid's party this time.

But being surrounded by all of our family and friends, it made me ever so thankful and realise how lucky we truly are as our own family to have such wonderful people around us.

Because it gets tough sometimes. Parenting is genuinely all the clich├ęs you get told beforehand. I have learnt so much in what seems like such a short space of time. You are thrown in the deep end and learn on the job as a new parent - each day is different and throws challenges at you - some days are harder than others, but that's ok. The majority of people will have been through it too, at some point. And even if you are doing everything in your power to provide the best for your child, you will still read an article that makes you question how you are as a mummy or daddy, or hear the advice givers and nay-sayers and wonder what more you could be doing. My son makes me proud every day. And I have to know that as his mummy I am doing everything I can for him. And so is his daddy.

Happy First Birthday Son.
We love you very much.

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Thursday, 16 November 2017

All New

*I've amended the heading for my blog, as I'm not sure how long 'new' lasts with regards to being a new mama. And am now no longer wedding planning as I'm a wife. But Crohn's is still ever present. We can talk about that another time perhaps?

Since I last blogged...
  • We relocated from London to the Westcountry
  • Moved in with the in-laws
  • I came off of Maternity Leave and am now a full time working mother
  • We got married!
  • Had a minimoon, sans son
  • It's our son's first birthday

So everything's still a bit new for me.

Having a blogging hiatus seemed slightly more acceptable when I sat back and realised how much change was happening in my life. I also feel that I very much wildly underestimated what the above tasks would entail; in both a physical and mental sense.

We'd covered all major life events in a period of around 8 weeks - never mind the sister-in-law's wedding, cousin's wedding and all the hens and stags in between. I think by the end of October I had decided that 'time' wasn't a thing any more. It didn't exist. It either went way too fast or chunks of time seemed to disappear without warning; not enough hours in the day, etc. etc.

So you're probably thinking, everything seems to have calmed down a bit now - why hop back onto the blogging figurative bicycle and share my thoughts? Well...this is by no means a 'woe is me' post; however I've mentioned before that sometimes slapping the keyboard with my feelings is quite the therapeutic task in itself. I've been thinking a lot about blogging of late - whether it be to help actually process all the change that's gone on, the fact my son is reaching his first birthday milestone and all that it brings with it (parenting highs, lows, challenges and rewards), that my own little family has done a full relocation of living and work, life as a newlywed (and what that even means?!), or that my Crohn's is still a pain in the arse and it bothers me.

I want to post about each of the main topics over the next week or so, as I'm currently signed off work (there's a wee insight into how my Crohn's is doing! *collective sigh*) But having blogged on and off for the last four years, I know when things have been on the tougher side, writing has really helped. Equally when things are on the lovely side, it's really enjoyable to write and share those moments, too.

And what better way to start again, than in two days time when it's our first born's FIRST BIRTHDAY. He's been here a year already. Out of the womb and our bab for a whole 12 months. I still don't feel like I was pregnant long enough to have grown him, let alone see him doing proper human things on his own like an independent chap. But he's here. And he's going to be one this weekend.

For he's a jolly good fellow...

Side note: having had a full life change of geographical location, working situation, my marital status and introduction to parenthood - I'm now trying to work out what Hattie, etc. actually means. So I'll get back to you on that once I've worked out what direction this here blog is going in.

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