You’re Getting On My Nerves!: 19th December 2013

Hello! So it’s been a while and I do apologise for that. Wrote too many ‘down in the dumps’ posts and I try to keep my blog as upbeat and positive as possible but also try to remain honest at the same time. I love all the feedback on my blogs as it gives me a clearer direction as what you guys want to read, know about and so forth. It’s nearly 1am so this blog might beshort and I’ll post a better one tomorrow but I feel bad for neglecting those who read this and I think my last post was….Mayyyy?…. o.O

Anyway, a lot has been going on this year.. it’s hard to keep track now! So far I’m under: surgeon, gastroenterologist, dietician, gynaecologist, pain consultant, stoma care team and colorectal team, on four different meds (two introduced in the last month) and it’s all very very confusing at the best of times! It’s sadly gotten to that point now where people don’t know what to do and are discharging me, don’t know what to do and are trying out all the options or don’t know what to do and have no options left. Hmmmm. In about 8 hours time I’ll be sitting in a room with my surgeon to basically come to the finality of whether or not a reversal is even an option anymore and send off the referral to St Marks down in London before my stoma may or may not become a permanent solution. Now, I’m not saying a stoma for life is a terrible, terrible thing.. it’s not. Would you rather be dead or adapt? My reason for this being my possible outcome is because I was never told it was going to be permanent, I have spent nearly three years being told it is temporary and therefore your mind is in the zone of “it isn’t forever, so we don’t need to fully come to terms with it and adapt”. Yes brains are weird, complex, mumbo jumbo blobs of fudge. Well.. if your brain is made of fudge I’d be a bit worried but metaphorically speaking.. big blobs of fudge!

This week I have spent two days bed bound, the first day was a “warning”, the second I was daft and pushed myself too far and the third and fourth I’ve given in the twats they call nerves and stayed in bed, but eating and watching dvds so it has it’s perks ;-) This is caused by what is called Visceral Neuropathic Pain. Which basically means the nerves in my pelvic floor and surrounding organs have been damaged in one way or another and this can very rarely be cured and only dimmed slightly by drugs (average percentage is a decrease of pain by 30-50%). Unfortunately the drugs I am on and have tried do not seem to be preventing these random ‘attacks’ of pain that make me very immobile for several days. I am currently on 225mg of Pregabalin which is an anticonvulsant drug used often for neuropathic pain, as are strong antidepressants such as Amitriptyline but there is no specific drug designed for neuropathic pain, instead drugs that give off a side effect of easing neuropathic pain is used in an attempt to decrease the pain. So far nothing is working and this is the hardest out of all the problems I have going on at present. Once the Pregabalin kicks in, it becomes extremely difficult to focus visually and balance, and my consultant is aiming for me to be on 600mg split into 300mg morning and night…. balls. 

Strangely enough not everyone responds the same way I do to these drugs. A good friend of mine is currently on Gabapentin and has no side effects whatsoever but when I took it I felt violently sick and had to come off it after a week. Another drug I tried was Duloxetine and for an entire 24hours I couldn’t focus properly and felt very nauseous and never repeated it. No matter what you hear from other patients, if you have prescribed a drug you should always be willing to give it a go and the worst that can happen is that you need to come off them, at least you can say you tried. I’ll be perfectly honest, drugs suck and I swear illegal drugs would not screw you over as hard as some these that are prescribed! 

Today is going to be a difficult day, and it the day I have tried to avoid for over a year and a half now but what will be will be and whatever I’m told later today is going to be something I’ll grab by the horns and fight till I know the battle has been won. By winning it doesn’t mean the conclusion I may of liked but regardless I’m going to do it. As Saoirse Ronan says in ‘Hanna‘: “Adapt or die”, well Eric Banner technically says it but if you’ve seen the film you’ll know what I mean and if you haven’t, YouTube! I’m growing to grow the biggest set of bollocks that I have and walk into the room, take a deep breath, read through my notes, be diplomatic, formal and patient and then walk out of that room and accept whatever feelings suddenly rush through my body when I’m out of the room. Never forget, at the end of the day you are still human, and you should never get caught up in being an emotionless robot because you feel you need to keep missioning on all the time. It’s going to mission on I feel but it’s also good to know when to let everything out and embrace the moment there and then. As my Aunty always told me, “you can feel shit and sad today, and then tomorrow you pick yourself back up again and get on with life” and it’s true, I say it to my friends and I say it to myself because that day of crying, screaming, shouting etc is just what you need and then missioning on the next day is what helps you carry on. Life is wasted on drama, over-thinking, worry, stress, fears, grudges and all of that negative, bitter nonsense. It doesn’t matter what you’re going through, you need to tell yourself you will never let it get the better of you and live your life how YOU intend to! Yea I’ve spent this week stuck in bed in my pjs, when I’d rather go out and have fun but this time next week I’ll be doing exactly what I want to do and my stupid body can’t tell me what to do. Tomorrow will not stop me being able to live the life I want and stoma or no stoma, I am me and I’m goddamn proud of that!

So do me a favour, look in the mirror and be proud of who you see.

Goodnight :)

Appreciation: 14th March 2013

Just a quick blog to say THANK YOU to those who have left comments, they are incredibly touching and it means so much to me to get such fantastic feedback from those who follow my blog. It’s great knowing the work and effort I try to put into helping others and creating more awareness is working, even it’s just a little bit I’m happy with that :) Even if I only help one person it’s better than not helping anyone at all. Regardless of what has happened to us throughout our lives and where we are going now it has made us who we are. We may not exactly like it but just think, you wouldn’t be you otherwise!  If I ever get the privilege to be reversed I will be proud of my scars, and if I don’t then I will adapt to how my physical self will be till the day I die. You will always meet at least one person who will not understand your situation, who won’t care, who will laugh or shout abuse, and you know what I say? SCREW THEM! Post them an old pooey bag if you must seek your revenge but remember they’re losers and have nothing better to do than live a narrow-minded life. I’m proud of who I am and my bag is something that is part of my physical self, not me in general. If people choose to judge you for the way you look or what you have had to had due to a chronic and serious health condition then they don’t know much about the world do they?

You can shout your abuse and hate at me but know who I really am and you can judge all you like but you’re judging someone you hardly know. We are given a life to live and one life at that. Live it how you want to live and the rest will follow.

Remember that. x

Long Overdue: 14th March 2013

Well it’s certainly been a while! I apologise, life has been more than hectic with doing my finals at uni, the ongoing health business, managing the support group and general life stuff as they say. A LOT has happened since my last blog and I’m not sure where to begin or what to talk about! I’ve got about 7-8 weeks left at uni and then I’m DONE! Scary business to say the least but if I pass with the degree grade that I want then I’ll be amazed and extremely proud of managing university over the past three years with my health and surgeries. Currently ungoing several tests at the hospital for my extreme bowel output with it being unable to slow down (even with a lot of loperamide capsules) and not digesting my food properly. I’ve lost a lot of weight since christmas but still in a healthy weight so that isn’t really a huge concern of mine. It looks more than likely that the nerves in my pelvic floor have been damaged from my recent surgery so a third open surgery is on the cards so they can investigate what is causing my ongoing pain. Regardless I’m trying my best to ignore it all and bury my head in uni work and life in general. I’ve been asked by a good IBD friend of mine to do a talk at an IBD conference down in Birmingham in May and I’m extremely honoured and excited to have been given what I feel is a once in a lifetime opportunity! About a month ago I met a guy and things are going really well! It’s great being with a guy who is so understanding about my stoma and health, among other things and trying out the dating scene with guys was an interesting but nerve wracking experience!

On the 8th Feb I celebrating the two year anniversary of my intial life-saving op and had a good together at my house. Unfortunately wasn’t able to go out as planned as I spent the night before stuck in the out of hours department in A&E. So far I’ve had a small bowel barium test, ultrasound of my liver and MRI of my lower back. Need to ring up to schedule a breath test and fasting blood test and then I shall awake to get details about a pill cam test. I’ve decided after I graduate this year to take a year out before I do my PGCE course, that way I can sort out what surgery I’ll need to have and earn some money. All in all life is busy but I’m missioning on as always and always focused on releasing the negative stigma towards IBDs and Ostomys and helping those like me to help build their confidence back up. It’s great working with a good team of people who share the same ambition and determination as me and hopefully we can all help raise awareness and rid the stigma!

ooooh! finally after 2 years I’m finally starting to get muscle definition and tone back in my stomach! I’m not rocking a six pack or anything but as I’m sure some of you know it’s an amazing moment when it happens! I go waffle on forever but I thought it was about time I wrote a blog and I’ll try and keep up to date more once my finals are done and dusted.

Keep smiling guys :) x

Another Year: 19th January 2013

Firstly let me say Happy New Year everyone!! Yes I’m a bit late on that one sorry! I hope your start to a new year has been better than the last! Although I know not everyone has had the best of New Years with many of you being in hospital and so forth. With each new year we must try to remain as positive as possible, even if things may not go the way we planned. A lot can happen over 365 days!

January will not be the best month for some and I must admit there are several hospital appointments glooming over me. When it gets to a certain point all you automatically do is expect the worse and I dread every hospital visit I will have to make now as the box marked with an enormous question mark tries to be solved. Over the past 3 months my eating has struggled and until a week ago even the thought of food was not easy. Regardless as grim as you may feel eating you’ve just got to persevere and even if you’re only eating teeny tiny bits at least it’s something :)

The 25th Jan will be my first appointment with the new gastroenterologist which will be our first step to trying to resolve all the current issues. I think one thing that is getting to me the most and I’m sure a lot of you can relate is when you’re constantly being told “these problems are never going to go away and you’re a very complex case”. ‘Complex’, what is complex? From a medical perspective what is complex? Does complex mean the average GP will never be any good that specialists are the only way forward? Or is complex a polite way of saying you’re pretty much fucked?…

I think when we become the ‘complex’ ones we’ve just got to grin and bear it and find the silver linings in life and I have quite a few of those that are keeping me going thankfully. I’m getting to grips a bit more taking my loperamide and taking bag supplies with me so constant leaks and output issues won’t be as big a problem. A few of my friends will need surgery this year and some ending up with stomas. For many this year is going to be a tough one on us all but I’d like to hope that this is just going to be another hurdle for us all and we will look back and feel a bit relieved looking back on it (so I hope anyway!).

Anyway, that’s me for tonight. Must admit health crap is effecting my concentration and attendance at uni more than I’d like but I’m still carrying on as always and trying my upmost to stay positive. The support group I run with another young lady is still going well and with us both under many stresses I thought it was best to add a pair of deputy admins to help us along. I think things are running a lot smoother and I hope it will continue to keep supporting and helping people for another year and hopefully many more to come!

Cya guys :)

Christmas Is A Comin’!:21st December 2012

my cat is currently lay next to me snoring <3 got hit by a car a couple weeks back and recovering okay. Looking forward to christmas day and seeing all the family :) It’s nice to have a few family days too considering big get togethers don’t happen very often! Got my split-cover bags back (woohoo!) so not feeling as anxious about eating christmas dinner. Went 3 days without pain patches which wasn’t good and body feels all fidgity from withdrawals but back on them so hopefully things should start to settle down. Anyway, short blog. Hope you all have a very Merry Christmas and 2013 is a better one for you all! xx

The Show Must Go On: 15th December 2012

I look at my friends who suffer from crohns or colitis just like me and wonder how on earth do they manage to keep going the way they do. A couple of my friends at the moment are battling surgery or recovering from pretty extensive surgery and they still manage to get dressed, put a smile on their faces and soldier on every single day. Don’t get me wrong, just like me they have their down days and that’s understandable by far, we aren’t machines after all. But if you weren’t told by that person what’s going on in the personal parts of their health life you wouldn’t have a bloody clue. I admire each and every one of them. To have the courage to still live out their lives and come to terms with some of the stuff this horrible disease gives us is beyond admirable. Many of them roughly the same age as me, others older and even some in their late teens. Each and every one of you should be proud of who you are and how strong and determined you really are. I hate how their is nothing to take this away from you but then without the challenges you have had to endure you wouldn’t be the fantastic troopers I know today.

and also, thank you for supporting me too, even if you have your own shit going on your support and kindness never goes unnoticed. We’ll all get there one day, we just have to remain positive and keep fighting <3

12.12.12: 12th December 2012

I think I’ve rewritten this blog about five times trying to think of what I should write about today and how I should word it. Even deciding what I named this blog was hard…
Today was my follow up with my surgeon Mr Slade. I hadn’t slept and felt sick with worry the night before. Welled up several times this morning but then telling myself that I was probably getting over worried about it and I would leave feeling better. This wasn’t going to be today.

We all have our bad appointments, our crap appointments, our disappointing appointments and the shit appointments. You know the ones I mean. I haven’t stopped crying all day, I burst into tears in front of him and one of colorectal nurses, I cried down the corridor with my gran, welled up in the car, burst into tears when I got home and soaked my flatmates hoody (sorry), went to bed, got up and didn’t cry and then started crying all over again. Just rung round some family and was in a flood on the phone to my mum. Barely touched anything today, forced myself to eat some food and that was at a push.

I’ve redrafted this blog so many times, deciding what I write or how much detail I go in to and I’ve decided that the only thing I’m going to say is we’ve ran out of options. After being referred to more people I’ll then be being referred to St Mary’s hospital in London. I can’t help but fall apart today but sooner or later I’ll pick myself back up and soldier on. Will get back to working on this ridiculously hard essay tomorrow and see where the week takes me.

You Can’t Stop Me Mr.Bowel!: 5th December 2012

ImageToday has been a lot of butt clenching up stairs, half hour bog sits and essay writing! At lonnnnggggg last I finally finished it! YIPPEEEE!!!! So tomorrow I can neaten it up, print it off, hand it in and start to work on my next one :) Had a good old Skype sesh with my Dad who is living in Dubai and he announced I have a baby brother arriving in May! This will be my 5TH sibling!!! (3 so far with my dad and 1 with my mum). I think though with me being 21 years older than this one on the way, when we’re both older I’ll more than likely be looked at as his mum! haha. Changed my Fentanyl patch today but still not getting any reduction in my pain. Just one week to go till my appointment with my surgeon and hopefully somethings can be resolved or at least a plan will be made for the very near future. Christmas is near and although I am not religious myself I’m looking forward to it. Will be nice to watch my brother open all his presents and hopefully Skype my other siblings or have a phonecall with them :) SBS got the better of me again, pasta didn’t full digest that was fun and after knocking back a mouthful of loperamide it’s calmed down slightly so fingers crossed I’ll get an alright nights sleep tonight. Rocking on as always, just thought I’d post a little update. But as goes the title of this blog: YOU CAN’T STOP ME MR BOWEL! Cause I’ll continue to kick you in the ass till you stfu! ;)

Night all. x

Hard Work Paid Off: 4th December 2012

ImageYesterday I got the mark back for my first essay of the year and I got back a mid/high 2.1!!! Do not ask me how I managed to do this, I honestly thought the essay was horrendous and was instead told it was enjoyable to read and my points were valid and very interesting. She said if I had expanded on one thing I would of got a First!!! ahhhh.. such sweet relief! Up until yesterday I honestly thought my degree was going to go down the pan and a 2.1 would be out of reach. With everything that’s been going on these past few weeks this really made my day. I can now work on my next two that are due in before christmas feeling more positive hopeful that they’ll come back with a mark just as good. Had my second session of Alexander Technique today which is to see if I can rid my painful back issues. It went well and I’ve felt a slight relief in my body, will have a third session next week and then afterwards will have my first appointment with the pain psychologist so that my level of pain can be determined as a serious problem or not. I must admit I’m not seeing a great improvement from the Fentanyl patches but today I’ve felt less woozy and light headed so there’s a plus! Got 500 more words to write on my current essay which should hopefully be finished by tonight and then it’s on to the essay I’ve been dreading for weeks! I’m glad I’ve become a bit more optimistic now about the future and things have started to settle down a bit, hopefully things will keep improving and this may have just been a rough patch that I’ve overcome :)

Enjoy your night guys! x

This Wasn’t What I Bargained For: 1st December 2012

ArcSoft_Image80Man, we have now gone 6 months of the ‘unknown cause of post operative pain’. Since yesterday I’ve been experiencing pain which feels like a fucking flare, no joke, this is wayyy beyond funny. Today I woke up to go to uni and it just wasn’t happening. Walked now faster than an old fogey around the house and up the stairs, housemate has had to help me get off the couch or out of bed. Fentanyl hasn’t helped the pain subside at all, instead it’s just wiped me out and I’ve just slept all day, whether it was my choice or not. Appetite is pretty crap too, I’ve ate one sausage roll and that was forced, some beetroot and lettuce, handful of cookies which made me feel sick and less than half a portion of chips (the other half I gave to my housemate). Just felt rough all day, it’s not like me at all to stay in bed and sleep, its driven me mad not being able to go outside today. I stuck my head outside for 5minutes and inhaled the air like it was some rare source! haha. So yea, Fentanyl just seems to be creaming me out but not eliminating the pain, I’m currently wear the 12MCG patches which are changed every 72hours. I’ve stuck it on the top of my arm and it’s doing well to stay on over its first 24hours. Tomorrow I’m going to make the attempt to get out of the house and see my folks, at least I don’t have to make too much of an effort with my appearance and I’m sure a shower and fresh bag change will make me feel a bit better, just hoping the patch stays on in the shower!

ArcSoft_Image83 Crappy picture but here’s the Fentanyl patch, when I finally get round to fixing my phone I’ll have a better camera rather than relying on my shitty webcam. Yea.. can’t think of what to write in this blog to be honest. My brain is mush, I’m shattered and should probably go to bed. Watched a few youtube vids and had a couple of convos with my mates which cheered me up haha (thank god for the internet ey!). But yea, seriously, fuck colitis. Had it up to here *points very high* with it all, been sat on the bog with mucus coming out of my backside and for once my stoma output has been ‘kind’ to me which I’m glad about cause it’s bloody agony getting in and out of bed. So here’s two swell photos of me looking like complete and utter shit. and on that note I’m going to bed! Tomorrow’s a new day and maybe the Fentanyl will have started to kick in a bit more. So long folks.
This just really wasn’t what I bargained for when I took all the horrid NHS drugs, did the surgeries, worked my arse off afterwards and have tried to manage everything. I’ve got 2 deadline coming up in the next week and I’m falling behind taking so much time out with all this health shit. moan moan moan, I don’t care today I’ll moan if I want to. ong[engc[9eicg[ix[wh

Goodnight.

ArcSoft_Image75fuck this shitty disease, I’ve had enough now.