So… I’ve been thinking about what’s actually been done to me and to my insides during this epic journey of the past 2 years… so thanks to Google and Youtube, I’ve managed to find some videos that pretty much show what I’ve been going through… I would have never guessed that my life from the ages of 34 to 36 would see me face death twice – but I survived!

Let’s start at the beginning – Sunday 9th September 2012. I had gone to bed early with abdominal pains. As some of you will know, I’ve suffered from various bowel / intestinal / digestive issues for many years (I’ve had IBS since my teen years, I’m hyper acidic, I have a hiatus hernia and many digestive intolerances) so I’m used to a certain amount of abdominal pain… anyway, I assumed it was a “normal” episode so went to bed with a hot water bottle to try and soothe the pains… however, the pain continued all night, and by the time it got round to 8am (Monday morning, 10th September) and I hadn’t slept, I thought, well, I’d better get up and walk down the road to the NHS Walk-In Centre to get it checked out. However, as soon as I got myself upright and out of bed, I fell to the floor in agony. Pain like I’d never felt. I assumed it was my appendix. I managed to pull some clothes on and drag myself to the phone to call 999.

It’s amazing what the mind and body can do in moments like this. Somehow, despite all the pain, some still small quiet part of my brain was explaining to the ambulance call-handler that there would be no point them coming to the front door of my building, because (a) it’s on the pavement of a roundabout and fenced off so they would have to park some distance away, (b) I knew I would never be able to walk such a distance so I explained how they could drive up a different road to the back alley where my building has another door. Although, of course, the back door doesn’t have a buzzer so I wouldn’t be able to let them in, so I’d have to get myself along the corridor and down the back stairs…

They keep you talking on the line until the ambulance arrives – when I heard the siren I told them I’d need to get myself downstairs, so I ended the call. That still small quiet part of my brain told me that I might not be coming home today, and I grabbed my phone charger and my prescription medicines and chucked them into my bag, let myself out, locked the door and staggered down to the back door and into the arms of the paramedics.

Things get a little hazy after that as morphine kicked in but I remember waiting for some time on a bed in the A&E while the phone alarm kept going off in my bag, out of reach. I had a chest x-ray which showed the lower part of my left lung had collapsed due to pressure from below. Then I had a CAT scan. Whilst on my bed in the corridor waiting for the CAT scan (I think I had to drink some liquid to line my insides for the scan?) I found myself wondering how I was going to let the various people in my life know what was going on… and truthfully, Social Media saved the day – I sent a tweet from my phone, knowing that someone at work would see it on Twitter, and because my Twitter feed automatically updates my Facebook, my sister (who lives in Canada) and my friends would see the status update.

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10th September, 1.05pm

The brevity of that tweet is, I think, indicative of the amount of morphine in my system by that point! After the CAT scan, I was back in a bay in the A&E, and then a doctor came and sat on the end of my bed.

And told me that the scan had shown that my colon had a perforation.

And that they would need to operate on it.

Within the next few hours.

That was when the morphine haze suddenly disappeared. I can remember it was like the fog was instantly sucked out and the world sort of caught up with me very quickly as the realisation dawned that I was seriously ill. I can’t really remember much after then, apart from when my sister called me on my mobile (she lives in Canada) when she saw and I explained what was going on. I was in tears and very scared. She then called our Dad on his mobile – he was on his way home from a vacation and had literally arrived back in the UK that afternoon… He had to drive back to his home to drop off his companion and then turn around and drive to Exeter (he arrived the following day).

I went into surgery around 7pm and came round in Recovery about 1am (the nurse allowed me to turn on my phone for 5 minutes to send a tweet update).

The “perforation” which had been about the size of a £2 coin had been where my colon met my rectum (kinda where the bowel turns a right-angle). They had needed to remove about 8-10 inches of my colon (ie most of the sigmoid colon) in what is called an Emergency Hartmann’s Procedure, leaving me with a “rectal stump” and a colostomy.

The operation to create my colostomy was something like this one here (CONTENT WARNING – graphic video of surgery). I can’t remember how many staples I had but my big scar is about 8-10 inches long from a few inches below my sternum down towards the pubic area. Thanks to the surgeon for cutting around my belly button rather than straight through it – at least I still have the navel I’ve had all my life (some bowel surgery patients lose theirs due to the surgery…)

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11th September 6.37am and 7.53pm

(the tube coming out of my nose is called a naso-gastric (NG) tube and is used to suck out (aspirate) stomach acid and other secretions which you would otherwise be inclined to vomit out, until your bowels start to work again after surgery and they start go leave the normal way…)

I was in hospital for about 12 days – in which time I lost a stone in weight.

Thanks to my wonderful friends and family, I had many visitors every day, which kept me going. My lovely friend Lucy Orchard even created a visitor rota to make sure that I would have someone there every day – thanks Lucy! Thanks also to Lucy for being a great advocate for me when I wasn’t in a position to ask questions or take note of answers regarding my aftercare etc… My sister kept in touch via Facebook through my mobile phone, which fortunately had good internet coverage (!)

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My Dad arrived on the Tuesday around lunchtime and stayed for the ten or so following days. Thank you to another good friend (Eva) for arranging for my Dad to stay at her family’s house (they often rent out rooms to touring actors). Thank you also to Holly for inviting my Dad round for dinner one night during his stay, and thank you to everyone for your cards, flowers, messages and well-wishes. I don’t know how I would have got through it all without you.

I found a group on Facebook run by the Colostomy Association, which was very helpful. When you’re going through something like this, having access to a support group of people in a similar position is invaluable.

I was off work for about 4 months, returning to the office in the New Year (and gained 3 stone). I had the colostomy for six months. They found some diverticular disease in the bit they removed, which is what caused the weakness in the wall of the colon where the perforation occurred – that combined with stress and other factors.

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floral gifts (even a rainbow rose!) from friends & colleagues that really helped to lift my mood during my recovery – thanks everyone!

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Once at home, I had to focus on recovering my strength and confidence, and learning to live with the daily routine of a colostomy. I contacted the local council and arranged for a weekly clinical waste collection (free of charge) for my stoma appliances etc. From the Colostomy Association I obtained a RADAR key as well as a Disability Rights ID card. When you’ve had bowel surgery, knowing you can get into a suitable toilet when you urgently need to is vital.

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The next photo shows one of my monthly delivery boxes of colostomy appliances and associated supplies (thanks to the NHS I didn’t have to pay for this essential prescription which would have cost around £500 a month…), and next to that is a picture of a “bag of shit” (one week’s worth of used appliances, ready for collection by the council and disposal by incineration…)

 

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I’ve struggled  with depression for many years, and – understandably – the next few months saw my mood rollercoaster up and down over the next few months. An increase in the dosage of my antidepressants and some intensive counselling (fortunately accessed through the NHS), and the support and love of family and friends saw me through the worst parts.

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23rd September 2012 – my colostomy “Geoffrey” – I asked my Facebook  friends to suggest a name for it (many people with a stoma do this) and it was named after Alison’s former pet chicken, which had been called Geoffrey (!)

(the white dusting you can see around my stoma and in the big scar is a product called “stoma powder” which is used to help heal the sloughy skin; the other scars on the left and the right are from where the drains had been inside me post-surgery)

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30th September 2012 – I kept my belly shaved to make it easier to keep the wounds clean while they healed, plus the colostomy bag adhesive sticks better to smooth skin, rather than a hairy surface, ensuring a good seal against the skin…

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7th October 2012

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18th October 2012

The colostomy bag sat right on my natural waistline, and with the scars it made it impossible to wear any of my normal trousers, apart from tracksuit bottoms. This affected my self confidence greatly, until a friend of mine (thank you, Sally Sunshine!) suggested I try maternity clothes, which have a low-slung and soft elasticated waist. I found the perfect pair of jeans in Dorothy Perkins online – and in the sale! and ordered a couple of pairs. Finally I was able to feel comfortable and confident to go outside (sadly, Dotty P have now stopped making maternity clothes, which is a shame, but I continue to find them online)…

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17th October 2012 – skinny leg maternity jeans!

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26th October 2012

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19th November 2012

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1st December 2012

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13th December 2012

The four photos (above) show the redness of the big scar fading. A good friend of mine – Lizi – gave me a bottle of Bio-Oil which was leftover from when she had had a big operation, and I used it regularly every day, rubbing it in small circles up and down the scar (I read that this can help break down the lumpy keloid bits of scar tissue). I also used Waitrose Baby Bottom Butter (review here) which is a very natural cream based on olive oil and is very nourishing for the skin. I truthfully believe that using both products has really helped improve the appearance of my scars.

I went back into hospital on 5th January for an ultrasound scan, to check that everything was working ok, and it was.

… followed a few days later by a flexible sigmoidoscopy (camera up the bottom – although as I pointed out, it wouldn’t be much of a sigmoidoscope because they’d removed most of my sigmoid colon…) this was to check how much of my “rectal stump” was remaining, and how it was recovering following the major surgery back in September.

… and this showed all was well inside – it was rather a strange experience (whilst breathing gas & air, which in a hospital environment was much less fun than at a festival !! and really just gave me a banging headache…) to see the staples inside me on a large TV screen…

The photo below shows how my big scar has expanded horizontally. This is because, despite losing nearly a stone in weight whilst in hospital in September, I then subsequently gained nearly 3 stone (net increase of 2 stone compared to my weight before the emergency operation). I put this down to a lack of mobility and lack of energy, plus my very low mood / depression following the emergency operation and learning to live with a colostomy. One of my symptoms when my depression gets very bad is to comfort eat, and of course being inactive as well, this meant my belly size increased, which of course added further to low mood… I have since then managed to lose some of the weight but I’m still heavier than I was – at least I’m alive though!

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9th February 2013

A follow-up appointment with the colorectal surgical consultant on 21st January gave me somewhat premature joy, with the news that he’d pencilled me in for a reversal in March…

He did say at the time that about 1 in 5 of these reversal operations end up being done in two stages with a temporary ileostomy, but of course I didn’t really take that on board or prepare myself for that eventuality…

This next photo shows my “supplies station” that I had to set up in my bathroom at home  to hold all of the various products necessary to keep the stoma clean and healthy, to apply and remove the appliances and so on…

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I went back into hospital on Thursday 21st March 2013 and my colostomy was reversed laparoscopically (keyhole surgery), but in a two-stage procedure, meaning I would need to have an ileostomy for 3 months to allow the re-connection of colon to rectum to heal better.

Photo: View from the hospital window… http://t.co/TQUquMqEf0

— Tom Milburn (@sparklytom) March 21, 2013

There were complications, however, and after the 4-hour operation I suffered a major bleed from the anastomosis (the reconnection of the colon and rectum) – fortunately I was still in the recovery room so they were able to treat me straight away, but it still took them about 12 hours to stabilise me. The recovery nurse had told me that I would need to “pass” some blood clots so when I felt the need “to go”, had to lever my sore body up onto a bed pan, and push out the clots from the surgery. However, after the clots came out, the blood didn’t stop. It started gushing out from my bottom. I started to have a full-on panic attack, and I really thought I was dying. I was so scared. Much of my memory of this is now just a blur or different faces coming and going around me. Because I had litres of blood pouring out of my arse, obviously the medical staff had to wear protective clothing. They were wearing bright yellow plastic aprons, and curved plastic visors in front of their faces, and I was lying on my back obviously, so all I could see was strange figures covered in plastic and distorted faces through the plastic visors. I can remember I kept asking what was happening, and the on-call emergency doctor just kept telling me to “calm down” – hardly the best thing to say to someone who is having a panic attack! I can remember there was this one nurse, standing on my left just by my head, and she was holding my hand. I don’t know what her name was, but I remember she was quite short, and she just kept squeezing my hand. In the midst of all this chaotic, frightening episode, her constant quiet presence really kept me grounded, and really kept me going throughout. Thank you, whoever you were.

I needed a blood transfusion of 4 units (the average adult has 11 units in the body in total). This episode was very frightening – I really thought I was going to bleed out and that this was the end. Thank you to the blood donors.

… and yet I went home only four or five days later – compared to the nearly 2 weeks I was in hospital in September, it was very swift. Laporoscopic abdominal surgery is really quite amazing – compared to the massive scar from the first (emergency) operation, the second operation left me with just three little scars (each between half an inch and an inch in length), plus a scar actually inside my belly button…

Normally after surgery, you have to wear compression stockings and have anti-clotting factors injected into your legs to avoid the risk of deep-vein thrombosis (DVT) – and yet, because I was clearly at risk of major bleeding internally following the surgery, I was receiving extra clotting factors intravenously, so as well as the usual precautions, I had to wear a rather bizarre pneumatic contraption (a bit like this) wrapped around my legs for the first day or so. This was a form of external massage of my legs to keep the blood flowing, and it made sleeping rather difficult due to the noise every few minutes of the pump and of course the pressure on my legs. Fortunately, it was removed fairly soon after.  My lovely dad came to take me home again, and he stayed for a few days to settle me in. He also bought me a new TV once he realised how bad the picture was on my old one (when he was trying to watch a football game!) – thanks Dad!

Just saw my consultant, all good, catheter out today, drip off today, prob home Monday! Next op in 3 months to close ileostomy…

— Tom Milburn (@sparklytom) March 23, 2013

This video shows the method used to reverse my colostomy (again I give you fair warning of a  graphic video of surgery). Looking at the battering the innards go through, it is no wonder we end up with bruising, swelling and lots of pain!

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7th May 2013 – my ileostomy “Jemima” – the name came about because the previous stoma had been called after a hen, and the word association following that came up with Jemima Puddleduck (!!)

You can see quite clearly how an ileostomy looks different to a colostomy. Colostomies tend to be formed flush to the abdominal wall – indeed some (like mine) will retract post-op as the wounds heal which needs convex appliances in order to name a good seal; ileostomies are formed more like a funnel with more of the bowel pulled through. This is because the output is much more liquid (colostomy output is more like normal poo in consistency) and it is more acidic so can burn/irritate your skin.

At this second operation, I was given a temporary loop ileostomy. This was to allow my digestive waste to effectively bypass the anastomosis surgery site where my colon had been reconnected to my rectum and allow it heal without waste output affecting this process. They used the same hole in my abdomen to bring the ileostomy through, to avoid creating a further weakness in my abdominal muscles which could have led to a risk of hernia (normally, colostomies are on the left and ileostomies on the right)

Living with an ileostomy was very different to living with a colostomy, and much harder to cope with. Whereas the colostomy was very regular, almost like normal bowel movements, the ileostomy was constant all the time, and also very high output. It was a constant battle to keep hydrated, and it was also very difficult to ensure that I was eating properly, because I had to avoid things like veg and fibre and greens. Anything and everything I ate passed out about 3 hours later, so well as battling dehydration, I was also not absorbing many nutrients. Even medication like tablets would come out more or less whole, so I had to crush them and mix them with juice (yuck!). Basically, I was eating beige food for three months – white bread, white pasta, humus… and similar stodge. I had a greatly reduced quality of life for those three months. The only positive outcome of having the ileostomy was losing some of the weight that I had piled on after the first operation – about 10 kilo or so from March to July. I had to take medication to slow down my digestive transit – normally, I would have been prescribed loperamide (Immodium) but I have always had a bad reaction to it with lots of bowel spasms, and now, following surgery, due to pain from adhesions (webs of internal scar tissue) those spasms made it far too painful to use that drug. So I was prescribed codeine – for the best part of 10 months I was taking large amounts of codeine to deal with this, so I had to come off it gradually.

One thing I learnt from the experience of both types of stoma was that, if I had to, I could live with a colostomy, but I would find it very hard to live with an ileostomy…

On 25th April, I was back in the hospital again, this time for a contrast enema fluoroscopy examination – basically, they squirt gel up your bum and then x-ray you at the same time. This was to check how well the anastomosis (rejoin) was doing and see if there were any leaks…

… the outcome of this was good, overall, but the x-ray did show that the section of bowel where the join was, was quite narrow (stenosis), and I was told that I might need to have a dilation procedure to make sure that there would be no risk of a blockage, once they reversed the ileostomy and things were going through the normal passage again.

I had the ileostomy for three months, and was due to go back into hospital again on 21st June to have the loop closed. I had a temporary set-back, however, due to administrative errors, and it got put back by a week, to 27th June. Before I set off for the hospital, I prepared a humorous surprise for the surgical team by writing a message on my final ileostomy bag (a bit of a tradition amongst patients in stoma surgery):

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27th June 2013, 6.30am “Dear Surgical Team, please let this be the last bag I have to wear. Thanks for giving me my life back (could you give me some liposuction too please!)”

 

As before, I had to arrive in hospital for 7.30am, and then sit around waiting for hours and hours before going into surgery…

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This procedure was much less invasive than the other two surgeries I had: all they had to do was close the hole in the loop of small intestine and “drop” it back into my abdominal cavity, then sew up the stoma site and allow the wound to heal. At the same time, my surgeon had a look up my bum with a camera to check whether the join was still narrow – and it was, so he carried out the dilation procedure as well. When I got back to the ward, the surgeon told me they’d all had a chuckle at the message I’d left for them on the ileostomy bag, and he apologised for not giving me any lipo while they were there! LOL

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27th June 2013, 10.07pm – post-op selfie (!!)

Having had three major bowel operations in a period of less than 12 months, I’ve learned a lot about how the human body reacts to this kind of procedure:

When the intestines are handled, as they are in this kind of surgery, they kind of go into shock and stop working – the peristalsis action that normally moves food along the tube shuts down. After the operation is finished, you then simply have to wait until they start up again. In many ways, this is the worst part, to be honest, because you go into a phase called ileus where the stomach fills with bile and acid and the intestines fill with gas but none of it is able to escape. Each time, my abdomen became swollen and distended to a very painful and uncomfortable extent with the skin stretched taut (a friend suggested once that I looked pregnant!). Also, each time, I ended up being sick in order to get rid of the bile and stomach acid – and if you think of all the muscles that you use when throwing up, and then consider where the incisions had been made, you can perhaps imagine the kind of pain I went through, being sick… In June, three days after the operation when I was being painfully sick, they ended up giving me three different kinds of anti-sicness drug, none of which worked. It was quite horrible. Hooray for oramorph:

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Eventually, though, the bowels wake up and things begin to move. When that first little fart arrives, that is a moment of celebration! Then, finally, the first poo happened and I knew that things were working properly, I sent a tweet:

and there was jubilation across the globe 😉

My stay in hospital this time around was the same as back in March – Thursday to Monday, and my friend Lizi took me home this time.

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1st July 2013, 2.27pm – returned home selfie (!!)

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23rd July 2013 – almost 1 month after the final surgery. You’ll notice that my belly piercing is back in place – I had to remove the piercing for surgery and I had assumed that I had lost the piercing following the various operations… once I no longer had to use stoma appliances, I was overjoyed to discover that the piercing hole was still intact.

The foam pad dressing is covering the stoma site wound which was left open to heal from the inside out by a process called granulation.

At first they pack the inside of the wound with sterile fibre that is derived from seaweed. This absorbs the exudate (ooze) and is changed every day or two. The tissue regrows from within and reaches the surface, and then they stop packing but keep covered with the film & foam dressing until new skin has grown across the site (epithelialisation). It took about 6 weeks for the wound to close and fully heal over.

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31st December 2013 – all healed up

I started to write this blog entry quite some time ago, after all the operations were over and things were “back to usual” – well, kinda… Then for some reason I saved it as a draft and filed it away… Now, a year on, I’ve decided to finish writing it it up and publish it. The act of writing is in itself very cathartic, and it isn’t always necessary to let others read what you’ve written. But as I’ve spent the past year or so getting used to living with what’s left of my bowels, I’ve realised that there’s a lot that I used to take for granted.

I have less bowel than most people now. Compared to some post-stoma patients, I’m still very lucky – some lose most of their bowels, some have permanent colostomies or ileostomies: I don’t. The damaged part of my colon that they removed was most of the sigmoid – its primary function is to absorb liquid from the waste and so I do find that I can get dehydrated more easily, so I have to make sure that I drink enough water. Also, a side effect seems to be that I struggle maintaining a stable body temperature – I can get very hot very quickly and it takes a long time to cool down again.

The anastomosis (join) of the resection of my bowel still has some stenosis (narrowing) and so things can be a little explosive, as bowel contents move from one part of the bowel through the stenosis into what’s left of my rectum and then out again. Buscopan tablets can help with this spasmodic movement, but because I have some nerve damage in my abdomen, I don’t always have a lot of notice. Indeed, I can’t very often tell whether the “need to go” is actually just a fart, or an actual need to pass a motion. I just have to live with it. I still have codeine from time to time to slow things down when needed.

I still get some pain from the adhesions – there’s not much that can be done about it.

I have to be careful about lifting heavy items – the midline incision will always be a weak point in my body and I have to avoid the risk of hernia through the scars.

I never had washboard abs, but I’m unlikely to ever get them now. My core muscles were cut in the emergency operation back in September 2012 to gain access to my abdominal cavity and so I have weak core strength now. I can live with it. I’m not as flexible as I used to be, again because of damage to my abdominal muscles. You get used to it.

I was fortunate to get a referral from my GP last year to the Mood Disorders Centre at the university and take an 8-week course in Mindfulness-based Cognitive Therapy through a partnership programme with the NHS. This has really helped me to come to terms with what I’ve been through and see past the limitations of my body, and look to what I can achieve.

So there you have it. 2 years of my life. And the rest of it still to come…

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