MeMyselfAndBubbles

It's my 10 year anniversary on Tumblr 🥳

So back in August, my ileostomy turned 18 (a.k.a it's been 18 years since my first op). If it was a person, it would be a whole ass adult now.

It really is crazy to think about. I just turned 31 (about 5 weeks after Bubbles' birthday) and I've had my ileostomy for the best part of two decades. I've had my Crohn's for around 27/8 years-so the best part of three decades-now tell me that's not a complete mind fuck for me.

I've actually spent the past 2.5 weeks in hospital (I'm a lot better now and should be leaving tomorrow) but I think this is the 3rd time I've been hospitalised this year and like 95% of times I end up in hospital nowadays, my stoma (ostomy) played a big part. So here's the thing, I've literally spent my whole life ill in one way or another, so I don't just go to the doctors/hospital every time I have a hiccup with my health. I literally have a checklist of things that need to be happening before I take myself to a&e. It includes shit like;

Have I been able to take my medication and keep it down?

Have I become dehydrated to the point where I got my dehydration headache and surpassed it? (because if i did i absolutely need I.V. fluids)

Just how much pain am I in compared to my norm/ my own pain scale ?

Is my heartrate above 120 when I'm completely at rest? ( This one might sound weird, but I don't exactly outwardly express the level of pain I'm in at any given time.) I literally spent way over 2 decades learning how to internalize all that, after spending my childhood with medical professionals saying things like "You can't be crying/screaming anytime you're in pain"/ "You can't expect to go through school/get a job if you're always crying/screaming/letting everyone know you're in pain"/ "You have to find a better way of dealing with it/expressing it"/ -and my 'favourite' a.k.a the one that has been, by FAR, the most commonly said-"You'll have to learn to live with it" and yes, all of those were said to me REPEATEDLY as a CHILD. So now, I don't look like you would typically/stereotypically expect someone in a lot of pain to look like and with the fact that I'm on opiates (something that I actually get so much judgement/ suspicion/ discrimination for-not even joking here) it can be really hard to get a doctor/medical staff to take me seriously/ understand the level of pain I'm actually in. And I get it, opiates can be very addictive and some people out there will lie to get some. But I can't fake my obs. So when I'm sat there verbalising my pain, there is strangely more belief when they take my blood pressure/ heart rate and it's very elevated.

So, is my life/health really different from Jo of 18 (+) years ago? Abso-fucking-lutely. And there are so many ways that is a positive

While my rate of hospitalization is higher than your average person, it is nothing compared to life pre-ileostomy. I don't have to spend days-months in hospital a few times a year anymore.

I don't have to take steroids (especially for prolonged periods) anymore. Hell I'm not on a handful of medication daily and definitely not on 30-40(+) medications daily when I'm in hospital

I don't have to fight to convince people I have something 'wrong' with me/health issues, when I look perfectly healthy

And oh yeah, I'm not dead!

But. All of that does not mean that everything has changed for the better. Let's look at the negative parallels of those points

I do still end up in hospital a lot more than the majority

Even though the op was supposed to (as I like to say) "Get rid of where my Crohn's liked to live best" and in doing so eliminate the need for things like daily medication. I'm still on medication everyday (about 13 across tablets, modified release and liquid-10/13 are pain related)

Now it's the complete opposite. Everyday I live with visible-and very clear-reminders that there's something 'wrong' with me. Even when I feel pretty good, my bag and scars can make some people view me in a negative or 'weaker' way /make assumptions about me.

Okay yes I am going to make a negative parallel to this too, but first, yes I'm glad my own body didn't kill me. Yes I actually (usually) really enjoy my life. HOWEVER. I've spent every day of the past nearly 15 years in pain. And let's be clear about this, not just pain, but severe and constant pain. Every second of every day I feel like I'm getting stabbed near my ileostomy.

I unfortunately fell into a small, uncommon minority when it comes to the surgery. My body didn't do what it was supposed to (shocker right) and healed in a way that actually ended up being damaging for me. It tried, it did and when healing it actually kinda went overdrive and that resulted in a fuck-tonne of scar tissue. So when they opened me up to do my last op (a major op-because they had to open my entire abdomen yet fairly simple/quick) they had to spend additional hours in surgery because they literally couldn't see for the scar tissue. I'd already had my Crohn's come back with a vengeance and started getting pain round my ostomy site. They realised the reason I'd been getting the pain wasn't due to narrowing of my intestine, like they suspected, but because I'd healed with scar tissue over nerve endings. So in that surgery they basically had to remove all my abdominal organs, scrape scar tissue off and put them back, all before doing what they were supposed to do. And for any of you out there that doesn't know this, the more you cut into scar tissue, the harder it heals. So just as my first op was supposed to be this solve, the last one was-in part-meant to get rid of the pain round my ostomy. Except when I woke up, they had to tell me that not only had they not been able to get rid of the pain, but actually it was probably going to be worse. Spoiler alert, they were right. Now there's no way to solve it. They can't give me medication to treat it-like they tried with my Crohn's. And they can't give me surgery to get rid of it-like they tried to with my Crohn's. The only thing they can do is give me painkillers to mitigate the pain. And there comes the other crux of the matter, because now not only is my pain severe,constant and permanent but 1) the medications they give me are highly controlled and thus i'm basically treated with suspicion everytime I need to re-fill my script/meet a new Dr/ come to hospital 2) I've been on those meds for a long time already and while the rate of tolerance has been less than most people (who understand) would suspect when they really think about it. I've still been building a tolerance and will continue to do so

I'm barely into my 30's and my main/strongest medication is something that is used in palliative care. So where the fuck am I going to be in another 10 years?

I was so young when all this started, so much younger than statistics say I should have been. Like you have no idea, so let's look at it. The average age for a diagnosis of Crohn's, for example, is 20's-30's (I was diagnosed & started treatment at 4, after 18 months of being ill). And the ostomy one is way more of a mindfuck than you're ready for. The average age of a person when getting an ostomy is in their 60's (I was 12...)

And yes it is possible for babies/young kids to have an ostomy and yes there are a ‘lot’ of 'young adults' who get one done (like mid 20's-30's) but even getting one at those ages is a very small percentage of the overall number.

I'm currently in hospital (have been for, god 17 days now?) I've actually been really lucky (bar the 30 hours in A&E) because after that backed-up-cluster-fuck-of-the-nhs-waiting-times, I got put on a ward I've been on a few times, then I actually got moved to a side room on the surgical ward (think it was probably a combo of where they had a bed and covering themselves as they found a bit of a hernia with one of the scans they gave me in a&e-they also found fluid in my lumgs and so treated me for suspected pnumonia for a bit there, but i'm all good now)

The obvious benefits of a side room include; 1) Your own bathroom (great when you have an ostomy and even better when said ostomy kept being a dick and going crazy with production), 2) Control over the lights. I cannot understate this. Hospitals are kinda renowned for having bright as fuck lights and their day/night schedule is so fucked too. This becomes even more important when someone has, oh I don't know, crazy insomnia and so does not remotely have a normal circcadian rhythem (hint, me). 3) Because I am a prepared bitch when I come to hospitals (we're talking, phone/laptop/ headphones/chargers/books -and this time pens and colouring book) So having a side room has meant that I could just have my laptop on without having my headphones on practically 24/7. one so I don't disturbe other patients and two cos my headphones are fucking awesome at noise cancelling all the normal hospital noises (other patients, medical staff, the beeping of machines)

Also been super lucky because the staff on this ward are just the sweetest/nicest/funniest I've come across in so long.

The amount of times I’v heard people go on, about how individuals with illnesses/disabilities complain, about how much harder things are for them, not just healthwise but day-to-day stuff. These kinds of people like to spout out the things that have been done to help these ill individuals, to bridge the gap between them and the able-bodied. And this is true, many things have been done. For me though, one of the most infuriating double standards is how we’re treated in reguards to being ill. ‘Healthy’ people are encouraged to speak up if they think something is wrong, if they don’t feel well or are in pain. We’re encouraged to shut up. The amount of times I’ve been told (in about 20 years of being ‘ill’) that I’ll “Just have to learn to live with it” That is so easy for someone else to say. If you have something for life, it’s not often it becomes easier, you just become more capable of dealing with things. When I was a little kid, in pain with my Crohn’s, I used to cry, to scream in pain and I remember feeling like it wasn’t possible to feel any more pain that I was in. But I’d prove myself wrong time after time. You can think something is the worst it could possibly be, until it’s not, until something worse comes along. For me, my worst was after my first operation. I can’t even begin to describe to you the level of pain I experienced and I know that the memory will never, ever leave me. I thought the pain before had been bad...but I had no idea. 

Now though, I know how just how bad things can get and so even when I’m in moderate-severe pain, it doesn’t seem like it to others and so I constantly have to like justify it. If I’m with a doctor or in A&E and they give me that infuriating 1-10 scale and I say a 8, they think “Oh, well it could be quite a bit worse yet” and then I have to explain, what my 10 is, and that a 8 on my scale is high and pretty fucking bad. I never really seem to fit their description of someone in a lot of pain though, because instead of screaming, I’m still and silent and crying and it’s exhausting having to constantly justify yourself, especially to people who should know better (but then again they don’t do they, because they’ve never experienced anything close to what you have)

First of all I left my house and the girls I live with super early in December, because I was going away before christmas. I went away-To Austria to see a close friend of mine- for a week, came back and had just over a week to make sure everything was sorted for christmas & to do some work as my Dissertation deadline is getting ever closer. Then it was Christmas day and I had an absolutly awesome day. Got to see all my family together for the first time in like a year, got to see my auntie and my god kids for the first time in months! (which is possbily one of the longest stretches it’s ever been) and it was manic and crazy and funny and brilliant, all day!

I was reallly tired but I still didn’t manage to fall asleep till nearly 4 and then at 5 I was up being sick (keep in mind, I don’t even realy drink and I hadn’t had a drop of alchohol all day so it wasn’t some version of a hangover or anything) So I basically spent boxing day in bed, dropping in and out of sleep when I wasn’t running to the bathroom to sort my bag because it was acting up and the output was basically water. Then at one point I slept too long and woke up to it having leaked all over me and my bed. So then I had to strip the bed and my clothing and put them in the wash while I jumped in the shower.

Actually sat and watched a film and a few things with my parents after that, before heading back to bed (early hours again). Today’s been better and I’ve slowly been making my way back to 100% but tomorrow I have to go pick up my oramorph and go see a couple who are both pretty good friends of mine and I also have to pack again cos early afternoon on Saturday, me my brother, his girlfriend and a couple of their (...our) friends are heading away for a few days for New Year. We did it last year and it was a really fun couple of days.

So I’ve been having a bit of a bad bout recently. About a month or so back now I was taken off my codeine and put on some slow-release morphine tablets, still messing around with the dose and it doesn’t help that my pain has been spiking pretty badly. Actually went home and to A&E last week, they didn’t keep me in but I did have a really awesome young doctor who had actually read through my notes before seeing me. Not the notes of the notes of my notes (At that level of being condensed what they usually know is ; My name, my age, that I had an ileostomy because of Crohn’s) anywho, he was great and re-jigged my dosage (which is working a bit better so yay) but the downside is my bloods showed my platelet levels are high, which means that my Crohn’s is flaring. It’s probably the lowest grade flare I’ve ever had which is something, because my Crohn’s has never pulled its punches before, so definitely grateful for that, but I’ve gone four years without it flaring. Four years. 

Me: ah yes

Me: 4am

I mean I’ve had plenty of times where I’ve wished I was normal, or thought how my life would be different if certain things hand’t happened, or they had happened at  different time in my life. But the last few day’s I’ve really been thinking about what it would be like to live as a regular person. 

To have a life that’s not dictated by my painkillers & when/if someone signs my prescription at the right time. To be able to be 22 (nearly 23) and have finished university, actually be out in the real world with a real, grown up job that’s in the field of my degree. For my biggest problem to be that I’m single while most of my friends are in relationships, or that my job sucks and I don’t get paid enough. To be secure in the knowledge that I’d like kids within the next 10 years. To recognize that the government in this country is kind of a mess, but to not worry too deeply about it because it’s not going to effect me that much. To be kind of messed up, but only the same amount as most people.

That’s just not the case though. I spend my days drugged. One part of me just being relieved that they help or work, but the other being really worried that I’m hardly into my 20′s and I’m already on a pretty strong dose of oramorph-up to 4 times a day. Being so worried of the tolerance I already have to these medications, and knowing that, as things stand, I will never get rid of the pain that means I need them. Because if this is the strength of things I’m on now, what position will I be in, in another 10 years. I’ll only be in my early 30′s. What if things are still the same. How are they going to be able to keep on top of my pain if I’ve built up a tolerance to the oramorph? That is something that scares me more than I can say.

Education & job wise, I’m going to be in my mid to late 20′s before I even finish university. That shifts the time line for everything else, for things like starting a family. Except, that’s not easy either. Because there’s the chance that I could pass all of this onto a child & the potential of passing it onto a child would only be a possibility if I had my own children, and with all the medications and operations I’ve had, who knows if I can?