Let’s Be OstoMATES…Simon’s Story

Simon's story

Simon’s stoma story is a really good read I just couldn’t cut it down too much!

simon ostoMATES

After emergency surgery on a bank holiday weekend, May 2016, I had a new thing. A stoma. I’d not heard of a stoma previously, so this was all very new to me. I’m not squeamish; having previously worked in a human gross anatomy lab, witnessed autopsies, and helped teach human gross anatomy in a cadaver lab. This occupation had been an eye-opener for me, whilst being fascinating at the same time. However, the prospect of learning to live and work with a stoma would have been daunting had there been time to be daunted!

For many years I’d had trouble with my guts. Trouble would flare up 4-5 times a year and would be very painful and result in a week or so in bed. Then it would go away and I’d be fine for several months. However, although I didn’t want to admit it, I seemed to be getting progressively worse by degrees. Some times I’d have a full blown attach, where I’d inflate like a balloon, other times stuff would just get stuck and I could work through it. My PhD students had taken to calling me “gurgles” on account of the noise trapped wind would make traversing my large intestine, grumbling as it moved from caecum to rectum and back again. This noise was clearly audible and was another sure sign something was not quite right.

I have a job that I work very hard at in a university, running a research lab, teaching students and looking after research admin for the faculty and university in general. Consequently, I’ve been immersed in biology for many years and know quite a lot about cancer, anatomy, and how a human body works. So I was fairly sure my condition was not caused by cancer. That said, I am not a physician and don’t claim to be. I have a PhD in drug delivery and cell biology and although I have taught in medical schools, I’ve never practiced medicine and have no desire to do so. However, even through the bouts of denial, it was clear that this condition wasn’t going to go away and wasn’t getting easier to manage. So, after one particular attack several Christmases’ ago I decided it was time to see my GP. I summarised all the facts, dates and symptoms as well as any relevant family history and discovered I couldn’t get an appointment for 3-4 weeks. Harrumph ! By the time I did get to see my GP, the attack that had inspired activity was long gone and I was back to normal.

It was obvious that stress and generally being tired, as well as having colds, etc. were contributing factors to bringing on attacks and they would normally happen (like clockwork) as soon as I stopped work for a vacation. I’d tried various things like enemas (talk about desperation) and exercise to manage the symptoms, they seemed to help a bit but… not enough. Having discussed this with my GP we decided it’s probably stress related IBS and should be managed by keeping my stress levels down with exercise and finding things to eat that didn’t aggravate the situation. This sounded reasonable to me and I left the surgery with a spring in my step!

So, Easter 2015, huge attack, lots of work stress, flying about, and after 10 days it’s not getting better. After a night of retching, it would have been vomiting but I’d not eaten for a week, my wife decided enough was enough and it was time to call 111. As usual she was right and we were given an emergency appointment at the local medical centre. I’m still all over the place at this time, right in the middle of a whopper of an attack, and really not doing well. I’ve not eaten anything for a week and was beginning to fade in and out a bit. The doc notes I’m a bit dehydrated and asks me a bunch of questions and listens to my tum with a stethoscope. He then gives me an envelope and tells me to give it to the on call surgical team at the local hospital. So… off I trot thinking antibiotics and steroids will fix it !

About 9am I get to the local hospital and over the course of the next 10 hours I’m cannulated, X-rayed, CT-scanned and finally, it’s camera up the bum time! Not the end of the world, though I think I remember making the attending laugh complaining that “man, you didn’t even offer to buy me dinner first.” About 7pm I’m taken into a consulting room and told, yes, you have a very large mass blocking your intestine and at the moment, we don’t know what it is. It is a whopper and needs to come out asap, so you are going to have an operation tomorrow ! If you have any pain here, let us know and we will operate tonight. Oh yes, and we will probably need to form a stoma as we don’t really know what we are going to find in there. I duly signed the consent form and wondered if it was cancer after all. The CT scan had shown my liver was clear of anything unusual and that is normally the first port of call for secondary tumours from colorectal cancer, so that at least was a blessing.

Next came pain relief and oral morphine. I think I had a fair bit of this and the best thing about it was that it stopped me worrying. “God’s own medicine”, yep I see why morphine was called that and why it is so addictive! Very nice, probably too nice. Saying that, as you can imagine, I didn’t sleep much that night and in no time I was being wheeled off to the OR. Quick chat with the OR staff which I think consisted of me saying …for God’s sake don’t let me wake up half way though, I used to smoke a lot of pot when I was a kid, will that alter the effectiveness of the anaesthetic, and for Gods sake don’t let me wake up half way though.. several more times before being reassured that this was really not in the game plan. The staff they asked me if I wanted to be conscious when they put in the epidural line in. I very politely declined and …the lights went out.

Regaining conscious in the recovery room was a curious affair. It wasn’t like waking up from a deep sleep but waking up from oblivion. Usually, when I wake up, I can recall what day it is and what I am going to be doing that day quite rapidly. I can remember what I was doing the previous day and even, where the traffic cone came from, and who I need to apologise to if it’s a Sunday or Saturday morning and I’ve had too much beer / vino the night before. Nope, none of that, in fact, not much of anything. It’s a bit like having to assemble your reality matrix from scratch. Not unpleasant or worrying, though I think more curious that anything else. I was aware that quite a lot of my higher cognitive functions weren’t in tip top shape but I could remember quite a lot about the latest guitar pedal I fancied getting my mitts on. Time passed. More time passed. More time passed (possible 2 hours). I think that I’d just about got my eyes open but wasn’t speaking when I became aware of other patients in the recovery room and of the presence of nurses. Again this wasn’t scary or unpleasant just a bit of an adventure. Then, I remembered I now had a stoma. Cool, I wonder what that’s going to be all about. Does this mean then end of the attacks I have had? What about the mass they removed? Meh, I can’t do anything about any of that now so I’m not going to worry about it.

As the light of day began to further penetrate into my consciousness, I became more aware of my surroundings and then, it was time to be moved up to the intensive care ward. An hour or two later, my wife, the wonderful Catherine, my mother and my lil’ sister turn up. Lovely! The staff are fantastic. The care is extraordinary (I have my own nurse….check me out !) and its not until I hear one nurse coming off shift talking to another coming on shift that I hear them describe me as having had a large tumour removed from my abdomen. PANIC!!!! Then I start to think, tumours can be benign (non cancerous) as well as malignant and your liver is clear, boy, so chill. Let’s wait for the path report and make decisions based upon evidence rather than gut feeling.

I was counting the tubes being removed from me, which was my way of counting down to going home. First went the one up my nose to stop me from being sick. Then went the drain through my abdominal wall, then the big old central line (cannula) from my neck and finally the catheter. “Deep breath in” said the nurse and …. out it came. My willy didn’t speak to me for a month! All back to normal now I’m pleased to say but man that was a big old tube! Out come the epidural and there’s just one or two smaller cannulas left and then the prospect of going home becomes more real.

I’ve managed to get up and about, and now it’s made clear to me that if I’m going to be discharged, I need to get the stoma nurse to say, yes he can manage his stoma at home. OK what do I need to do? Well I get to see the stoma nurse again and I’ve been reading the booklet that came with the stoma kit and I tell the nurse how I intend to change the bag, what the steps are and how I will do them. She gives me the thumbs up and the following day (Thursday now, the operation was on the previous Sunday) and we are getting ready to get the final signature from my consultant. This takes a little time as there is some problem with the pharmacy. We eventually get the signatures we need and my mate from work comes to pick me up and off we trot. Several twists and turns aside, over the next couple of days, I develop a really substantial infection in my wound. This means there is really smelly wound fluid everywhere. It also means once again I’m reduced to having the cognitive powers of a lettuce and don’t realise what’s happening. On reflection this was probably a mixture of pain meds as well as the effects of the infection, however anyone who has ever seen the effects of a UTI on an older lady will know what I’m talking about.

On the advice of the stoma nurse, who has come to pay me a visit, and make sure all is well, off to the local wound centre I go. They take one look and say, yep it’s antibiotics for you mate! Lots of antibiotics. Over then next three weeks the antibiotics do their thing and I’m very grateful even though they and the other things I’m taking like paracetamol, piriton, ibuprofen, stomach acid regulators and sadly no more morphine, seem to have taken over my life. That and the Fragmin (anticoagulant) SC injections. Man, I hate those. Possibly not as much as my wife who has decided that giving them to me is only marginally worse than me dying of a pulmonary embolism. However, like my good self, she is a proper trooper and onwards we go. About this time I’m starting to come to terms with the fact that I’ve got a stoma. Fortunately it’s a colostomy rather than an ileostomy, however at the moment I’m not keen on looking at it and protect it like a wound.

Over time I’m learning to love my stoma. I can’t shower at the moment as I don’t want anything non-sterile coming anywhere near my wound. The wound is healing and with a second course of antibiotics we are seeing good progress. The stitches are out and I’m otherwise healing well. I’m also starting to sleep though the night again even though my little furry tummy will never be the same again!

About this time I found Thaila Skye’s youtube channel which has loads of great stuff in it. I would heartily recommend it to anyone who is a new ostomate. Thaila also recommended (not to me personally) but more generally, Shell Lawes & Stephie Simpson’s facebook group “Making Ostomies Cool” which is also fantastic and a place I still hang out. It’s a relief when I’m finally given the all clear by the wound centre and by this time I’m also starting to wonder where the results of the biopsy are of the tissue that was removed (that is most of my sigmoid colon). I phone up a bunch of people to try to find out what has happened to the lab reports, and it’s only once I phone up my GP that I’m told (this is now 2 months after the operation) “oh, no you don’t have cancer, it was diverticular disease that caused all the trouble. Were you not notified by the hospital”? No, I bloody wasn’t, though if the truth be known, I was so relieved I completely forgot to be angry. One month later, I’m back at work. Part-time to start with, then a phased return. I’m now back at 100% and although I’m constantly knackered and have learnt to manage my stoma at work, I’m very grateful just for the normality of it all.

Managing a stoma is not something to be underestimated, but not too hard either. Thinking ahead is key. I have a big stoma kit at home, a little one in my laptop bag and a medium sized one in my desk. I’ve only had one big leak at work, which really was spectacular! Mostly problems can be dealt with using flange extenders, which is great. I do have my own office, which helps and means I can have a quick check all is well without freaking anyone out, which is good.

Things I have learnt are the NHS is brilliant and absolutely worth fighting for. The idiots who are keen on privatising it live in a fantasy world. The people who run front line support are brilliant. However they are not very good at communicating with each other, which means you have to get involved and ask questions to find out where you go for this or that. Most stuff is looked after by your GP which may seem obvious but you are not born knowing it, so don’t ever be afraid to ask. Figuring out where sick notes come from, how to get prescriptions refilled, where to get large wound dressings from, all takes time and effort.

If you are having surgery, make sure you have enough dressings for mopping up wound fluid. And, learn to love your stoma. In time, even if you are revolted by the idea at first, you can come to terms with this life altering and life saving change in your physiology. My life has more or less gone back to normal and my stoma and me seem to get along very well. We have our moments as he has a certain temperament but that’s okay, so do I. As for the times we fall out, well there’s always the shower to clean my self up in, which is not the end of the world. After all, pooping is one of the few things all living people have in common.