Hallelujiah, thank the Lord, it is finally Thursday! The big day has arrived, the day I have been looking forward to for God knows how long. Why has this day been marked on the calendar for so long, I hear you ask? Well, why don’t you fathom a guess. Is it:
- I’m finally heading out, with my friends, for an evening out.
- I’m finally taking Citramag, a drug used to clear the bowels’ of patients prior to bowel procedures by inducing violent diarrhoea.
- I’m finally going down to the seaside with my family.
I’m sure you guessed correctly, if not just from the name of the title (and my slight obsession with my bowels of course), that the answer is the aptly numbered number two: Today is the day devoted to my bowels.
To you it may seem a bit much to give them a whole day, but to me and the thousands of others who have completed or are going through cancer treatment, today is only the tip of the iceberg. The combination of nerve damage, reduced mobility and highly constipating pain meds and chemo drugs have reeked havoc on my poor bowels and left me massively and majorly constipated. I cannot remember the last time I had a normal day of pooping and this gets stressful. Such a mundane thing that I never even used to think about has become the fricking bane of my life.
Not only is this lack of pooing driving me mad mentally, bringing back stressful memories of that eleven day poopless stretch that resulted in enemas, suppositories and God knows what being stuffed up my ass, as well as that CSF leak, physically it is altering my appearance. If you have seen me recently and been struck by awesome wonder about how successful my egg harvest must have been, judging by the size of my enormously bulbous stomach, you have been slightly misled. That is no baby I am carrying, just a good two weeks worth of toilet trips that have left me looking AT LEAST ten months pregnant. It feels like all the worst bits of child bearing: my clothes don’t fit, my stress and paranoia is through the roof, and if you’re thinking, “Well, it’s not like you’re going to have to go through child birth,” then I shall warn you that Citramag induced poop labour ain’t pretty either. Plus at least child bearing ends in a cute little bundle of joy; whatever is coming out of me can in no ways be described as cute, and even less as a bundle of joy.
So anyway, today I was looking forward to saying goodbye to the pregnant look, and hoping that the Citramag would also rid me of that constant feeling of bloating and fullness, that has meant I haven’t been hungry for a good week, except for – if I’m being honest – yesterday night when I had a nice drink of cherry brandy, felt mildly tipsy from all 0.5 units of it, and marched straight to the fridge to eat cold leftover curry takeaway.
It would also be good to drop a whole load because knowing that I had God knows how many days worth of toilet trips in me means I have been pretty paranoid for the past week…
Prior to my struggles with sarcoma starting, by which I mean around Christmas 2014 when I began experiencing bad leg pain and taking very constipating pain meds, I used to poop every day and it was glorious. Now, worsened by the chemo which bungs me (and most others on the same regime) up something tragic, my pattern of number twos goes as follows: I go on day one, then for days two to five I go very minimally or not at all, and finally on day six I blow. This involves mounting stomach cramps, mounting stress, and suddenly the urgent need to go within seconds. This is fine if I am at home and there is a toilet on hand, but what happens if I am in the car, or out and about? Well unfortunately it means I poo myself.
This hasn’t happened for a good while, but the last time it did happen it wasn’t great. It was actually on Valentine’s Day (nothing like shitting yourself to get you in the mood) when my friend Caitlin was staying over and we were heading up with my parents to London for some tests prior to chemo starting and to have a nice Galentine’s meal out (my parents weren’t coming to this bit). I knew from the moment that I woke up this was the day I was due to blow, and blow I bloody well did.
Almost immediately as I got out of bed my stomach started cramping, gently at first, then stronger. Just before we got into the car I had to run to the loo, staying firmly stuck on it for as long as time restraints would allow despite not being physically able to do my business. After what felt like a few seconds my mum called for me. I remember sitting on the loo, my eyes tightly pressed shut, my head against the cold tiled wall and my arms hugging my swollen, sore stomach. I knew we needed to leave but at that moment I wanted nothing more than the outside world to disappear, to leave me alone in my familiar and
friendly bathroom with my behind planted to the toilet. Yes, the reading material was and is totally shit – a few old copies of out of date Which magazines, the highlight of which was probably which vacuum was Best Buy of 2003, but I would have traded reading that all day with leaving the security of my toilet and taking a route to London, where I had no knowledge at all of the toilet situation.
Unlucky for me, these tests really needed doing and they really needed doing in a couple of hours, so I got it together, gave myself a pep talk second only to Rocky’s and got in the car, stressed in full knowing that there was no way I would be making it up to UCLH incident free.
We drove and my stomach cramped, getting more and more painful until I finally could take it no more and I knew without a doubt that I was about to my poo myself any moment. I screamed at my dad to stop, but JUST MY LUCK it was a bloody Sunday and all the supermarkets were closed. Then the wonderful Caitlin, who I have never been more happy to be friends with, shouted about FRANKIE AND BENNY’S SUNDAY BREAKFAST and my dad put pedal to the metal.
He pulled up out the front and I ran in, through to the back loos as fast as my little crutchless legs and metal pelvis would carry me, clutching my behind as I pooped myself whilst I hobbled full speed, with my mum behind me carrying my bag full of wipes and a change of clothes. I wish I could have seen camera footage of us running in because we must have looked hilarious. I hid away in the toilets for as long as time restraint would allow, making sure that a repeat wouldn’t be on the cards, changed myself and that was that really.
It’s all got a lot easier now that I have got to the point where I am okay with the idea of pooing myself, and I have come to realise that whilst it may be horribly uncomfortable in that moment, no one else has any clue that I am pooing myself. And since I have gone totally public with all this and tell bloody anyone that I am incontinent, any embarrassment has been taken out of it. Caitlin already knew and so I didn’t have to reveal my incontinence to her unwillingly in the moment when I was already stressed about it, instead she could just help me. Speaking openly and frankly about my incontinence means I am never alone in dealing with it, instead I have a team always ready and willing to help me, no matter the situation, no matter the time and place.
So we actually went on and had the nicest Valentines Day I’ve ever had. That may seem crazy to you, but lucky for me I’ve got to the point where I am no longer mortified by it happening and it is now merely an annoyance; I am not upset afterwards nor do
I feel the need to hide away for the rest of the day in fear and devastation as I used to. Instead my friend and I were free to go out and have a nice, romantic meal in a restaurant FAR nicer than KFC (yes, that is where an ex-boyfriend took me on Valentine’s Day, and yes, I am a vegetarian.)
Nevertheless no matter how used to these accidents happening I become, the stressful desperation for a toilet in that moment never gets any easier to handle. The heat that rises up my body and the shrill, frantic tone of my voice as I shout at my dad to find somewhere to stop never goes. It doesn’t show any indications that it will ever go either, which makes sense because in these moment all rationalisations vanish and I am only ever acting on instinct.
So I hope any moments like this will be put off for a while by the Citramag, or so I did in the earlier hours of today. I was instructed to take one sachet by my bowel doctor and “stay close to a toilet and make good use of a book or iPad”. Granted, today was not going to be the most pleasant of days but I didn’t give a shit (figurative of course, the hope was that I would be giving many literal shits today) about that. I took one sachet at around midday, which was a bit later than I originally hoped but I have been feeling drained since chemo and waking up is hard. The instructions said I should be prepared for immediate bowel movements, so I excitedly (yes, I was excited) stocked the bathroom with books, my iPad and this cool foil art thing that a friend had bought me. My stomach was rumbling a little already so I stationed myself firmly on the loo and stayed there for about half an hour.
Apart from a decent amount of belly noise, nothing was happening and I was still really tired so I gave up and went back to bed until five in the afternoon. (I’m living the life, I know!) At this point I gave up entirely on the first sachet of Citramag and turned my hopes to the second. I made a second batch, which nearly bubbled over the sides of the jug and was equally as terrifying as the first, when considering this was something I was actually going to consume. I drunk it slowly, not particularly relishing its gross lemony taste with overtones of burning and ash.
This didn’t do anything for a couple of hours either, and so I was beginning to get concerned about how constipated I must actually be for two sachets of a drug, which is used to completely clear patients’ bowels prior to bowel surgery, to do fuck all. Obviously my mum’s friend, Louise, who is an acting matron at our local hospital had similar qualms as I received a text from my mum whilst she was out with her and other friends asking, “Have you pooed?”, typed by Louise.
It’s nice to know my bowels are up for public discussion now, but then again I talk about them all the time and they are exciting, gloriously glamorous body parts so why wouldn’t they be?! (I actually don’t mind at all, I really appreciate any poo tips and fun facts.)
Thankfully for me and Louise I had pooed several times by this point in the evening, and had pooped my pants once too. I must have been pretty constipated because my poop was nothing like the explosive diarrhoea the sachets had promised and I had so excitedly hoped for. It might sound weird to hope for diarrhoea but what it meant for me was having a normal, non-distended stomach and going back to being completely and utterly not constipated, at all.
But noooo, the one time I hope for diarrhoea I don’t get it! Instead I get an easy number four on the Bristol Stool Chart, that I would pray for any other day but today. “What is a four on the Bristol Stool Chart?” I hear you ask. Please refer to the picture!
This chart has been such a big part of my life since the surgery that I have known it off by heart for months. In fact, since I got to Jacksonville and started going to pelvic rehabilitation (far less exciting, and far more pooey than you can ever imagine) I have been keeping a poo diary, starting each day with, “dear poo diary…” (Okay, that bits a joke) and recording in it exactly what laxatives I have taken, whether I have pooed, what number the consistency corresponds to, whether I strained and whether I pooed myself that day. This might seem like a bit too much
information for you, and you may feel like you really don’t need all this graphic detail on my poo habits, but I am going to write this anyway because this is the reality of my best life now and you should take the fact that you even get to make a decision about whether or not you want to know these things as an absolute blessing, because I don’t get that choice.
Regardless of if I want to or not, I need to wake up each morning and deal with my incontinence and the constant, impossibly difficult battle against constipation. It never goes away, and the only thing that ever slightly improves is the constipation. The incontinence never does, only my attitude and ability to deal with the symptoms gets better as more time passes since my operation and that day I realised, like a slap in face, that I had lost control of the muscles needed to clench. I was trying to explain this to someone the other day who was telling me that in their opinion my incontinence had improved, and that I just couldn’t notice it in myself because the improvement had been so gradual.
It may seem like that to the people around me, but I can’t stress enough that it is just how I handle the symptoms that has improved, because of the guidance and encouragement of those around me, and that my confidence has improved too. That is the reason I frequent the bathroom less than I used to, less than once every other minute, not because I have gained back some ability to clench.
I wish it wasn’t this way, and that my nerves had recovered more, but I am still totally incontinent and there is nothing going on down there. It is hard to explain what it feels like; I can only describe the lack of ability to control those muscles as paralysis, because that is what it is. It is not something I can work on, because my brain is no longer connected properly to the muscles and so I have no ability to access them – it is like the muscles have just disappeared. Someone once said it is like I have the car with the motor all ready to use, but I am missing the gas.
Fingers crossed someone takes me to the Shell garage soon because I’m getting tired of lacking in gas, especially when I have this constant battle with constipation, flicking between that and diarrhoea, because it is not at all easy. Just imagine the worst ever diarrhoea you have had minus your ability to clench your butthole.
And I shall end now, leaving you with that lovely image, because my belly is rumbling and I need to run. I still look at least six months pregnant so although it is late right now, I have a bad feeling the night is still young and the Citramag will be continuing to work its smelly and foul, but direly needed, magic into the early hours of the morning.