My Stoma Story

10 minute read.

2 weeks ago I had life changing surgery. I wanted to capture my thoughts and experience for my benefit (something to look back on), and thought maybe it’ll help others going through something similar. I’d also like to do what I can to encourage openness about stomas and ostomies, and this is as good a place to start as any.

Besides, I like writing and this is part of my healing process. Go on, indulge me.

NB: Everyone is different in the nature of their medical conditions, the medical advice and treatment they receive, and how they respond to such treatment. This is a personal reflection and a lay person's understanding of my condition and treatment.

Contents

• Polyposis
• Colectomy and IRA
• APER and ileostomy
• Anaesthesia and pain relief
• The post-op period
• Hello stoma
• Life with a bag - learning the ropes
• 1st week post-discharge
• Postscript

Polyposis

In addition to his practical skills and somewhat annoying habits, I inherited a genetic defect from my dad called Familial Adenomatous Polyposis (FAP). This causes polyps to grow in the duodenum, colon (large intestine) and rectum. If untreated the polyps will turn cancerous, resulting in a 100% chance of dying from colon or rectal cancer, and I believe a 1/3 chance of duodenal cancer.

I was diagnosed in 1990 when I was 27 after my sister, pregnant at the time and suffering haemorrhoids, went to her GP who recognised the signs of polyps. My sister, being a nurse, realised the genetic aspect and suggested that me, my sister, and my parents get checked. We all trooped off to St Mark’s Hospital in London (the world’s centre of excellence on polyposis and colorectal disorders); Dad was identified as the carrier and all three of his children had inherited the gene defect.

Colectomy and IRA

Once we were diagnosed, treatment was a full colectomy and ileorectal anastomosis (removal of the colon and joining the end of the small intestine to the rectum). This not only reduces the risk of colon cancer but apparently can also help slow down growth of polyps in the rectum.

Within a year the four of us had our operations at St Mark’s Hospital in its old charismatic but cramped City Road building. There was no keyhole surgery back then, we were opened up with a sternum to groin incision and spent three weeks in hospital, two of which were nil by mouth. It was, I recall, an extraordinarily painful experience that took many weeks to recover from.

Following the colectomy, treatment continued with endoscopies every 6 months to check for polyps in the rectum, and gastroscopies every 2-5 years to check for polyps in the duodenum, with polypectomies to remove any that are getting large and potentially dangerous.

There can come a point though when the polyp load in the rectum becomes too much to be managed via endoscopies, and it is then time for the rectum to go.

I reached that point in 2020 aged 57, my sisters having reached it at a similar age in their lives. Conversely, my dad managed to live out all his 88 years with his rectum. Luck of the genetic draw I guess.

APER and ileostomy

My consultant, the eminent Professor Sue Clark at St Marks Hospital, explained that I had two choices for prophylactic surgery:

• J-pouch: the rectum is removed and a new one is formed by creating a loop of small intestine which is then attached to the anus. Two operations are needed, one to create the pouch and a temporary ileostomy (taking the small intestine out through the abdominal wall), then a 2nd operation to reverse the ileostomy and attach the intestine to the pouch.
• APER & ileostomy: the rectum and anus are removed (Abdominoperineal Excision of Rectum) and a permanent ileostomy is created (with, of course, an external stoma bag).

Prof Clark explained the benefits and drawbacks of both approaches, and I particularly remember her "Ford Fiesta" analogy:

A j-pouch is like a Porsche: it’s amazing technology and looks great, but it takes practice to learn how to use it, can be very high maintenance, and if it goes wrong it might need to be replaced.

A permanent ileostomy is like a Ford Fiesta: it’s simple, effective, low maintenance. It just does what it does and very rarely goes wrong.

Aged 58 I really wasn’t bothered about the lifestyle aspect of an external bag, I wanted peace of mind and just to get on with life. I also thought of my dad who struggled with bowel incontinence in his later years, and I honestly think a bag would have made life easier for him.

So, I opted for the APER (jokingly referred to by ostomates as a "Barbie Bum") and ileostomy and was very fortunate to have the operation scheduled for the 20th August 2021... although that was my 33rd wedding anniversary.

Anaesthesia and pain relief

The biggest change in the 30 years since I had my original colectomy – apart from hospital stay being cut from 3 weeks to 1 week – was in anaesthesia and pain relief.

Prior to going into hospital my anaesthetist called me to discuss the surgery and post-op pain relief. “Have you considered an epidural?” he asked. I hadn’t, and said that I didn’t really want one because I didn’t want to lose sensation from the waist down (thinking about my understanding of how epidural is used in childbirth).

He listened to my concerns and patiently explained how it works; I’d still be able to use my legs and feel everything except for the pain in my torso where the incision would be. Remembering how painful my original operation was – and in particular how just breathing was like knives in my chest and belly – I agreed to it.

Being totally honest, the administration of the epidural was not a pleasant experience; the cannula is correctly placed when you can’t feel it going in, and it took 3 goes to do that, each one was a little bit like the dentist scene in the Boys From Brazil, and at one point I nearly fainted. I was ready to give in, but the 4th attempt was painless and it worked.

But you know what? I'd go through it again without hestitation because the affect was astonishing: on waking after surgery, I rated my pain as a 1 or 2 out of 10, compared to 8-9 following my original operation; I could breathe easily, I could cough up the post-op blob of phlegm from the bottom of my lungs, I could move my legs and hips. There was literally just a section of my torso from belly button to nipple that was desensitised, I could feel pressure but nothing else.

The one down-side was being periodically sprayed head to toe by a nurse with a freezing spray to confirm the area of numbness, just what you need in the wee small hours of the morning.

The epidural was in for a couple of days, after which I was moved on to PCA (patient controlled analgesia), basically a button connected to a pump delivering morphine. Feel pain, give yourself a shot, simples. No risk of overdosing, instant hit. Personally, I got to the point where the morphine made me feel a bit queasy and gave me strange dreams, at that point I abandoned it and went onto paracetamol, but by then it had done its job.

One of my big concerns was how painful my backside was going to be after having my anus removed and the resulting wound stitched up. The truth is that I was aware of it, it was a bit uncomfortable, but nowhere near as eye wateringly painful as I thought it would be. Once out of bed it was helpful to sit on a cushion, but otherwise no big deal.

The other thing is how general anaesthetic has improved. I’ve had several GAs since my original operation, but I am mentioning it here because I know people can be very worried about going under (the thought absolutely terrified me until I was 27).

Modern anaesthesia is a miracle; a shot of something that has the effect of a triple scotch, then the next thing someone is saying “hi Graeme, you’re out of surgery”. That’s it. It literally is like the best sleep you've ever had, and in my case I had absolutely no after effects apart from a feeling of euphoria (yay! I’m back!) and an insatiable desire to tweet about my experience.

The post-op period

I was in surgery for about 6 hours; in addition to the APER and ileostomy, my belly was basically one big hernia following previous operations and 30 years of being obese, so my abdominal wall needed to be reconstructed. So, in all it was a pretty big operation.

But I was astonished at how good I felt; I lost count of the nurses, doctors and anaesthetists who came to check on me saying “you don’t look like someone who has had major abdominal surgery”, and the truth is I didn’t feel like someone who had.

Part of this is my approach to a challenging situation; I try to rise to it and maintain a positive and cheerful disposition. But even so, I was surprised at the way I felt. That’s not to say I was putting a brave face on – if something hurt or was uncomfortable I made sure they knew because honest communication is critical in helping the medical staff care for you.

The 1st night post op was fine apart from being tortured by a blood pressure monitor that sounded an alarm every time I nodded off to sleep because my BP dropped when I did. I wasn’t in pain, I was reasonably comfortable: “I’ve got this” I thought.

Night 2 was a different story, as it was for my 3 sons following their colectomies. The gut doesn’t start working all along its length at the same time after an operation like this (“ileus”); my stoma was working (doing the occasional equivalent of an Alexa “Long Wet Fart”, LWF), but other parts were probably still asleep. The result was belly ache from hell – trapped wind with no way to release it (particularly as one no longer has the anatomy required to force it out).

Night 3, better. Big ball of trapped wind in my stomach, getting difficult to breath, have to sit up, legs over the side of the bed, have big burp, repeat every couple of hours. This was a worry because I hadn’t experienced this before and I started getting illogical worries about having a hiatus hernia. Hiccupping and burping stayed with me for a few days.

Night 4 onwards, things getting better. I was on fluid from Day 1 and started introducing soft solids (ice cream, jelly) on Day 2, and then more solid food. Eating wasn’t easy because (a) no appetite, (b) that constant gassy feeling in my stomach, and (c) everything is so darned tight there surely can't be any room for food (exacerbated by the abdominal binder I was wearing).

One side effect of ileus can be vomiting, and my sons suffered from this when they had their colectomies, one in particular winning the world record for the amount of green bile that could be thrown up in 24 hours. In this respect I got off very lightly with only two very minor episodes and hence a very temporary membership of the Green Bile Club.

Hello stoma

Apparently people give their stoma a name. Given the noises mine was making I thought I’d call it Sid, in homage to Kenny Everett’s “Sid Snot”, but that changed when I saw it for the first time and I thought Jabba (as in Jabba The Hut from Star Wars) was far more appropriate; it was big, ugly and wobbled about.

It was far bigger than I imagined it would be, measuring 60x50mm and standing about 30mm proud of my skin, and very dark in colour. The stoma nurses explained that post-op it was shaped like a mushroom where the exposed portion was wider than the hole it was coming through, and as it healed it would shrink in size.

There’s no denying the thing was pug ugly. It moved (a bit weird to see one’s own peristalsis in action) and was covered in mucus and what is politely known as “output” (i.e., faecal matter). The output at this stage was very watery, and combined with never ending peristalsis meant that the stoma was very good at doing an impersonation of a sea cucumber by squirting out liquid whenever the bag was removed for changing.

Life with a bag - learning the ropes

The St Mark’s Stoma Nurses trod a brilliant line in encouraging self-sufficiency whilst being on hand to identify issues and help with solutions. If there is ever a time when you need calm professionalism it’s when you’re facing your 3rd bag change in 30 mins due to leaks and thinking you’ll never get the hang of it.

For the first bag change we walked through a to-do list together (the kit and procedure), and they showed me how to clean the skin around the stoma, cut the bag aperture to size and apply it. Each day I was expected to take on more of the tasks myself until they were happy that I could change a bag independently (this took me 3 days).

Issues? Well, it proved hard to get a leak free seal because of the proximity of the bag flange to my midline wound and the puckering of the skin around the stoma site. Once this issue was diagnosed the stoma nurses suggested using a stoma ring (think of flat ring of chewing gum) in the areas that were puckered, and that fixed it.

The proximity to the midline had to be addressed by cutting the aperture off-centre, which combined with the fact that the stoma was oval in shape meant for some creative scissor technique. Also using a bag with a wider than normal flange helped.

I opted to use a clear bag rather than one with a “modesty cover” (which hides the stoma and output) because I wanted to be confident that I was getting a very close fit between the aperture and the stoma (important because regular skin is irritated by the acid in stoma output), and it’s difficult to do this unless you can see it clearly.

The biggest problem I had in hospital is that there was nowhere to put the bag change paraphernalia (wipes, bowl of warm water, adhesive removal spray, new bag, ring, mirror), it was a matter of balancing stuff on my knees, floor or any other surface I could use either in the toilet or at my bedside.

It wasn’t until I got home and set myself up there I realised how important and helpful using a mirror is in cleaning the peristomal skin and measuring/fitting the bag.

1st week post-discharge

I was discharged on day 7 post-op, and I felt really good albeit very tight, sore down below and across my torso, a bit weak and easily tired.

Looking back, I think I was a bit dehydrated; the stoma output continued to be?very watery and I was emptying my bag about 4 times a day (maybe about a litre?), and my appetite was very low so I probably wasn’t getting enough fluid or nutrients. This surprised me as I thought not having a colon for 30 years would mean my digestive system wouldn’t react differently to having a stoma compared to an IRA (it was a just change in “output port” after all), but clearly that wasn’t the case.

The stoma would become active immediately on me eating something, and my guts sounded like a wonky central heating system with air locks and bubbles. Pain was a bit of an issue in the first couple of days when the stoma was active (I guess because the peristalsis was stretching the stoma wound on my belly), but I managed it with paracetamol.

After a couple of days, I put myself on loperamide (Imodium) to reduce wateriness and reduce the tendency for the stoma to do its thing on eating. It didn’t reduce the wateriness but did help with the latter.

On about day 5 post-discharge things suddenly clicked: all pain went, my appetite returned, I started eating more regular sized portions of food (high protein and carb, low fibre), the output started to thicken, bag emptying became less frequent. Mentally and physically, I felt very much like my old self and my wife said how much brighter I appeared.

The stoma shrank by 10mm (hopefully more to go as it still “flops down” on the peristomal skin at the bottom during bag changes). Bag changes became much easier and quicker (down from 20 to 10 mins), leaks non-existent, though I’ve still had issues with peristomal skin exposure through incorrect aperture size or not being thorough enough with pressing the flange against the skin to create a tight seal.

The most significant milestone for me was night 6 post discharge when I slept in my bed for the first time and got a blissful night’s sleep; I know from previous abdominal ops that I sleep more comfortably initially in a reclining chair, but this is no substitute for curling up foetal style in bed.

The next morning I was astonished at how little I was aware of my bag during the night; prior to my op I was worried about the impact on sleeping position but I needn’t have been. Also emptying isn’t an issue, I currently do a single bag empty at about 3am (when I generally need a wee anyway). Apart from that I don’t notice the bag at all at night

Bag emptying is a doddle btw; the suggested way is to sit on the toilet and empty the bag between your legs, and take the opportunity to have a wee at the same time. Maybe it’s my fragile masculinity, but I really don’t feel comfortable weeing sitting down, so I kneel in front of the bowl, empty the bag, clean the opening, close it, then stand up and have a wee. As a bonus I get a bit of exercise in the process. For those concerned about smell and mess, all I can say is that it’s nothing compared to doing a baby’s nappy.

At the time of writing, I am one week away from having my surgical staples removed, and I’m wearing an abdominal binder that my surgeon asked me to wear for 8-12 weeks post-op to help my muscles recover and prevent further hernias; the one I’m wearing is from Amazon and is much better than the one I was given in hospital. Sadly that's not my body in the above photo... Mr A Mehta (who reconstructed my abdominal wall) is a brilliant surgeon but even he can't work miracles.

Concerns about wearing the binding over my stoma and bag have proved unfounded (Where will the output go? Will it burst?) especially as output returned to normal, but I’m looking forward to getting a custom one that is being arranged for me that will accommodate my stoma and bag.

Postscript

On the evening of day 7 post-discharge my wife and I took advantage of a warm sunny evening to have a drink at our village pub.

All totally normal and uneventful apart from the fact that Jabba decided to do a loud LWF just as I took a mouthful of beer and scared the life out the young couple on an adjacent table.

Joking aside, dealing with this manifestation of my stoma is probably going to test my confidence the most. Highly audible LWFs are not socially acceptable, and I need to learn how to strike a balance between ignoring it, explaining it, and laughing it off.

Maybe I should get a t-shirt that says, “That wasn’t me, it was my stoma”.

See also part 2 and 3:

• My stoma story - 1st month
• My stoma story – 3 months on