So there I was, going into my second year as an ostomate, and surprisingly still happily naïve about the whole thing. I had woken up from surgery, there it was, best get on with it. So I did.
Naming it helped. Zeppy the Zeppelin had been born. Some mornings I find that the overnight gas production has been quite prodigious, hence the Zeppelin. The “product” that goes with it can be quite prodigious too, those are Led Zeppelins. I am of course very fortunate that I still have prostate cancer, as that means I get up at least once in the night for a pee, and can monitor Zeppy. Only once (so far) have I experienced the pouch leaking through detaching from my belly, and I was lucky to be able to deal with that without any untoward consequences.
Did I just say I am fortunate to still have prostate cancer? Good God, I did. I suppose you’ve got to look for positives in everything if you can. So there you go, getting up in the early hours for a pee does have its uses! My PSA has been fluctuating between 0.1 and 0.2, which oncology seem happy with to the point of only seeing me (or phoning me) every six months instead of quarterly. I still have my hormonal Prostap jab every 13 weeks, and daily meds keep the hormonal sweats under control nicely.
Of course, Covid19 hasn’t helped with my medical experience of the whole process. The stoma nurses disappeared off the face of the earth, oncology was at the end of a phone, and GPs were on the end of a website in a cloud somewhere.
Stoma supplies were still responsive, and very helpful, especially as the pre-cut hole in the pouch wafers needed to be varied in diameter as Zeppy grew a little. That’s something else you find out – the size and shape of the stoma changes through time. I started with a 25mm hole in the wafer, now it is 32mm. And the good news is that my stoma is still pretty well circular.
I’ve found out how much my pouches cost. Just over £100 for 30. Every time I use a new one it costs the NHS about £3.40. Mine are what’s called “drainable”, and that means you can in theory empty them. That is something easier said than done, unless you’ve only been passing rabbit droppings and they are safely enclosed in a protective gaseous environment; then you can just rattle them into the toilet. I read about how to rinse the pouch out with a bit of warm water. That works, although it can be a bit of a pain for me as I have to kneel in front of the loo and it kills my poor old knees. It also gets through a fair bit of toilet paper. But if it means I only use a new pouch every other day, then I’m doing a bit for the NHS budget.
Anyway, back to my own ongoing personal reality. The slow but sure dismantling of Stew Russell has continued – at least in the planning stages – as the days have gone on. My regular readers will recall the pyogenic granuloma from last November, and how they chopped it off? Well, slowly and inexorably it is growing back. Thankfully it is not as hideously leaky as its predecessor, but what they had trimmed flush to my lip is now a very noticeable lump. It inhibits the shaving of my top lip, and I don’t want a sad old Magnum PI moustache (again), so I was growing and strimming a rather sparse grey beard. I’ve now got an electric razor that does the business without harming the granuloma. They’ve agreed to have me back at MaxFax in June, the day after my birthday. That’ll be nice.
Further dismantling is promised by Podiatry, who want to chop off half of my left big toenail, because it is persistently ingrown. And it bloody well hurts. If they look hard I think they might find another granuloma that has developed alongside the nail following what I suspect has been a long-standing infection. It’s surprising how much you depend on a big toe not hurting in everyday life. I’ve been waiting for them to get me in there for a while. And they’ve been waiting to get me in there for a while.
They are waiting for my Oncologist to write to them confirming there are no contra-indicators between the meds they will use, and those I’m already on. They’ve been waiting over a month for this letter; I know this because I rang Oncology. This is after Podiatry had asked the same question of my GP, who “helpfully” emailed them a 42-page pdf of my entire medical history by way of a prompt reply.
Meanwhile I did manage to get dismantled a little bit when I had my long-overdue colonoscopy in early March. This was the one I should have had before meeting my surgeon back in November. And this was an adventure. It started with being invited to collect a preparation pack on the Monday before my procedure on the Thursday. It turned out to be the dreaded Devil’s Brew, Picolax. Then I had to go to the drive-through Covid19 testing on-site. Then I had to self-isolate for three days. Cathy, freshly Covid19 vaccinated, kindly joined me in the isolation wing of Russell Towers.
The Wednesday was prep day. That was entertaining. Just follow the instructions and – if you’ll pardon the expression – run with it. It’s amazing how much a stoma pouch can (just about) hold while you rush to the loo to let it all out. Thank goodness for drainables. Over and over again. I weighed myself before and after I took it, and in less than 24 hours I had shifted 4lb!
They didn’t tell me not to go in, so I presume my covid test was negative. When I turned up they ushered me into a cubicle to get changed into a hospital gown – “you need to wear it back to front” – and what they laughingly called “dignity shorts”. These pants were hugely baggy blue paper boxers, with a sort of fly to allow the stoma pouch through. Dignity indeed. Following examinations for both prostate and anal cancer, not to mention my pesky ureteric stents, my dignity has long since departed.
So in I went, and the first thing a nurse said to me was “You’ve got your gown on back to front, and we need you to lie on your side.” No, look, stoma, it’s the right way round, and I’ll lie on my back thank you. Then one of them had the pouch off me, and the doctor prodded the stoma to work out which of the wrinkles and folds was actually the access point. Someone stuck a cannula in the back of my hand, and I was sedated; clearly I looked the anxious sort.
The sedation was more effective than I expected, and I don’t really remember too much of the rest of the procedure. I know there was a tv screen showing a particularly pink and wholesome looking tunnel that the camera was travelling along. The report that was sent to my surgeon complemented the cleanliness from my Picolax preparation. It was like the best ever school report: A+. I have no memory of me or anyone else putting a pouch back on afterwards, but someone obviously did.
Later on that day I treated myself to a shower – without my pouch! I had seen how clean my insides were, and there was no chance of anything coming out of Zeppy for quite a while (2½ days as it turned out) following the Devil’s Brew. Cathy was fascinated, and watched through the shower screen; it seems it’s a spectator sport. It was lovely to just wash myself down without the pouch in the way. I’ll do it again one day, when Zeppy’s biorhythms feel right.
The reports that I got back also mentioned a couple of polyps they had removed while they were in there; yes, I told you they’d been dismantling me from the inside out (again). Following detailed examination, these turned out to be benign tubular adenomas. Not tubular adenoids as I initially misread. Both letters they sent indicated that there was no need for further colonoscopies; the second letter rather sinisterly used the words “no further surveillance”. I didn’t find that decision at all disappointing.
In amongst all this, I do look around for bits of information about my situation, and more by accident than design, I found a closed Facebook group for the charity Colostomy UK. It manages to be entertaining, heartbreaking, reassuring, educational, and uplifting all at the same time. Through that, I found out that my operation was technically an APR – Abdominoperineal Resection – which is also known as a Barbie/Ken Butt; mine is a Ken Butt because I’m a man. This is an American phrase, and the USA-based support group for APR ostomates that I have joined is called “Abdominoperineal Resection (APR) Surgery and Barbie/Ken Butt Support Group”. Trips off the tongue nicely. Being British, I naturally always refer to mine as my “Ken Bum”.
I’ve also found out that there are things called ileostomies, which I really don’t understand; this is too complicated for me. Life’s too short to learn everything about everybody, and goodness knows I’m still struggling to fully understand my APR. What I think I understand is that ileostomies result in large volumes of quite loose, very liquid, “production” on a daily basis, and somehow they link the passing of faeces with the passing of urine. They also park the stoma to the right of the belly button, rather than the left. That’s how you can tell us apart. Of course some people, somehow, have both.
The highly respected medical team of Doctors Google and Wikipedia tells me that ileostomies are a result of surgery leaving the ostomate with very much less functioning bowel/intestine from stomach to stoma than I would seem to have. If it can later be reversed, then presumably much of that plumbing is still in there, just hanging around not doing anything for a while. Of course there are other ostomates who still have their anus, because their cancer (or other problem) was higher up their bowel than mine. These people get phantom stools and pass collected volumes of mucus on what seems to be an irregular basis. By way of contrast all I get is a feeling of my bowels moving their contents along through my dismantled behind like it’s a disused railway station – this train don’t stop here no more.
You have to tread a fine line on social media among people in similar or even wildly different circumstances to yourself. Can I be critical of what people say or do? Constructively maybe. Can I comment on something I have no experience of? No, just no. If I can’t empathise, can I at least sympathise? Absolutely. Can I have a laugh? At myself, certainly. Laugh at someone else? You have to read the posts carefully first, to see if that’s what they are inviting you to do.
Sometimes I get annoyed at what people write. In which case I simply try to scroll on by. One example was someone who had a temporary stoma, and was looking forward to having a “reversal” now that the presenting problem in their bowel had cleared up. As it happens, this one I didn’t scroll by, I stopped and went back. I copied, pasted, and saved the text. It got me thinking about whether people really understand what they are saying about themselves as they write their posts.
As someone whose stoma is permanent and irreversible, I don’t think I’m being bitter and twisted when I question comments like this about the joy of having a reversal: “One step closer to getting my life back.” It made me wonder if a return to sitting on the loo, having a shit and then wiping your arse really counted as “getting my life back”? I can understand people wanting to be “normal”, and returning to the state you were born to if at all possible, but really, is that what truly defined your life? Well, if you take the time to read on further through some of these posts you realise that for some people the pain, discomfort, and non-stop attention that a stoma, and especially an ileostomy, can demand really does take over their life, and wanting their reversal, their old life back, is really a very long way from being a shallow aspiration.
So yes, I know, it turns out that I probably am bitter and twisted, and certainly judgemental. Never mind. Sometimes I long for a bit of self-pity to surface, but it’s no sooner here than it’s gone. We can’t unhappen what’s happened; move on.
In the meantime, I have learnt to be really grateful that I don’t have any dietary restrictions. So many people with stomas have real problems with different foodstuffs. Others, and I seem to fall into this group, don’t have any problem eating whatever they like. Since Zeppy arrived I’ve gradually worked up to consuming the same food and drink in the same sorts of quantities as I used to before. I’m looking forward to the end of covid restrictions and getting back to restaurant and pub grub. But now I have learned that there are so many people who have to be enormously careful about what they eat and drink, so I should take more time to appreciate my good luck.
Of course there are other external problems people experience. The internet is a global phenomenon, I know this by the statistics from my blog, which have revealed readers from all over the (mainly English-speaking) world. So when I read about ostomates in different countries experiencing problems with their local health system, I am so grateful for the accident of birth that gives me the NHS. When a patient in the USA finds that their health insurance company no longer includes their familiar and trusted Oncology team on their list of preferred suppliers, and is instead sending you to start all over again with new doctors in a new hospital “just because”, it seems so wrong. Thanks goodness that doesn’t happen to me; yes a doctor or nurse might move on to another job or retire, but I’m still with the same hospital and their reliable routines.
While I’m on these Facebook groups I feel a bit guilty a lot of the time, as the problems some people encounter and have to manage dwarf my experiences into insignificance. Then I remember that my experiences aren’t actually at all insignificant. So what does that make those of other people? Well, they are incredibly strong. Incredibly. Whether it’s a young infant whose parents are looking for advice and support, or some rugby playing ostomate who’s looking for a protective shield to play in, or an old fool like me asking stupid questions about “if I eat less will I poo less” (I know, talk about the bleedin’ obvious). We’re all in there doing the best we can. This is what I mean when I say that the support groups can be entertaining, heartbreaking, reassuring, educational, and uplifting, all in the scroll of a mouse or swipe of a screen.
So this is what Facebook can lead you to: the good side of the internet. Awareness that there is more to life out there than you ever imagined. As a result, welcome to a world of total confusion and a roadmap into a minefield of medical terminology and outcomes.
I’m not even 18 months into this part of my journey yet, and already I’m looking forward to the end of November when Zeppy and I can celebrate our 2nd stomaversary together. See, I’m learning the lingo.
Stewart's Blog 