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My colostomy operation

I thought it might be helpful to give you all some information about my colostomy operation. But, first and foremost, don’t get too worried reading this if you are newly or not yet diagnosed. What has happened to me is unlikely to be ahead in your future. Secondly, I’ve not held back on some of the detail, so if you don’t want to know, don’t read it. Apologies for the length.

For those who don’t know, this is what led up to the operation. I’ve had MS for 20 years. And whilst I’ve been diagnosed as having Relapsing Remitting for most of that time (now pretty much classed as SP), I’ve had very little benefit of DMDs due to drug reactions. So I have wound up being quite disabled, I’m a wheelchair user and walk only a very little, using an FES and a walker, and that only in the house for a small amount of exercise.

I have had trouble with both bowels and bladder for years. Apart from the slow transit of waste through the intestines common to MSers, nerve damage has meant that I’ve been unable to relax the external sphincters of both bladder and bowel. I tried many oral solutions for my chronic constipation, from Senna, Movicol, dietary changes, castor oil, and glycerol suppositories amongst others. Most recently, I tried the Peristeen anal irrigation device. This involves using an anal catheter, filling the bowel and part of small intestine with warm water and sitting waiting for the water, together with faecal matter to come out. Unfortunately, it didn’t work for me. This is partly because of the sphincter not relaxing, so any expulsion of water etc didn’t come out without digital stimulation.

I was also using intermittent self catheterisation (ISC) for about 5 years for bladder retention. I have found over the past year that I was feeling sore in the urethra from constant ISC use, although this wasn’t causing any actual infection, there was a certain amount of inflammation from time to time. I also used digital rectal stimulation (DRS) to open my bowels for close to 7 years. DRS means physically inserting a finger into the anus and using circular movements, open the sphincter and stimulate the rectum to produce bowel movements. It was not ultimately a good long term solution as the constipation alternated with diarrhoea. Ultimately, haemorrhoids both internal and external plus a partial rectal prolapse were the result of the constipation. The prolapse itself caused mucus to exude from the anus, leading to a permanent rash, which bled and meant I was using nappy rash cream all the time.

This year, I decided to take the bull by the horns, so to speak, and take action on both the bladder and bowel issues. In March I had a supra pubic catheter fitted and in June a colostomy.

With a colostomy, a section of the colon is pulled through ones abdomen and a ‘stoma’ is formed. (Stoma means opening.) The colon is sealed off from the rectum so no waste products go into the rectum after the operation. The stoma sort of acts like an anus, in that waste products come out of it and are collected in a bag or pouch, although it has no muscles or nerve endings. So what it does and what it produces, in general cannot be felt and does not hurt.

Prior to the operation, I had what is called a ‘sigmoidoscopy’. This is a surgical procedure where a camera is sent up into the colon. They do this to identify any problems (such as growths, ulcers or cancers in that part of the colon). As part of this procedure, the surgeon ‘banded’ some internal haemorrhoids and the prolapse.

Further to the sigmoidoscopy, I met again with the colorectal surgeon at which point we decided that a colostomy was the best option for my problems. I also met with the Stoma Nurses to discuss what happens after the operation, stoma care and to receive some information packs and samples of stoma pouches. I then had a pre-op and a lung function test. The lung function test is performed to ensure that as someone with little mobility, I have sufficient lung power to allow me to breathe unaided after the quite heavy general anaesthetic. The surgery itself takes a couple of hours, or so I’m told, but of course you tend to have no idea of time until quite a long time later that day.

I had my operation on 14th June. It included a spinal anaesthetic (aka epidural) where a needle is passed directly into the spine to paralyse below that section of the spine. Soon after, I was fully anaesthetised. I did have a post anaesthetic reaction of which I was dimly aware, my blood pressure dropped and I had quite severe spasms. A drug was used to bring both under control which was a little hallucinogenic, thereafter I was unconscious again. The operation was done by ‘keyhole surgery’ where several holes are made in the abdomen. I ended up with the stoma itself, a largish wound through the belly button and two other smaller holes. Each of them is glued shut, and the stoma is sewn onto the skin with gradually dissolving stitches. (Modern medicine is a miracle.) It’s always possible, with an operation like this that keyhole surgery isn’t enough and so you have to be aware of the possibility of a larger wound, but I was fortunate.

The operation itself is mostly pain free. Or, in my case at least, there has been little pain including post operatively. My colorectal surgeon also removed 18 inches of twisted intestine, which has probably also been adding to my problems over years.

On waking, I had a clear collection bag over the stoma. Through this the doctors and nursing staff can see the product of the colon and the stoma. As expected, initially, the product was blood and very thin excreta. It was a little disconcerting to see this (essentially a plastic bag of blood and liquid poo attached to a largish red lump sticking out of my stomach). And there is a temptation, easily given into, to keep checking the bag. I was in the high dependency unit for the first 24 hours, then relocated to a surgical ward. I was disappointed that in general I had no machines going ‘beep’ at regular intervals, but was reassured that I was alive by the use of new technology which can check most of your vital signs: blood pressure, pulse etc automatically. (I had been worried for a short while about imminent death whilst hallucinating immediately post op!)

I saw the stoma nurse the day after the operation and most days subsequent to that. They changed the collection pouch, initially to another clear bag, then to a covered drainable pouch, then finally to a closed bag. All the time, they were measuring the stoma, when first formed it is quite large, but it shrinks all the time over the 6 weeks or so following its formation. The collection pouch is cut to fit round the stoma. The idea is that excreta goes through the hole in the bag but the skin around the stoma should remain poo free as much as possible to avoid irritation (ones excrement is alkaline apparently and this is bad for skin!) So as the stoma shrinks, the hole is cut smaller. Eventually, when it reaches the size it’s expected to stay at, the bags will be delivered already cut out to fit, but initially the nurse or you have to cut out the ever decreasing hole. Whilst the pouch is initially changed by a stoma or a ward nurse, you are learning all the time to change the bag yourself in order that when you get home you can cope without assistance. On one day, my husband was asked to come in so he could see the procedure, in order that he can help at home. (Obviously now that I’m at home, he does as little as possible in this regard, but when needed, he’s fairly quick to assist, see the ‘Vesuvius’ incident, during which his help was invaluable!)

I keep interchangeably using the words ‘bag’ and ‘pouch’, strictly speaking, it’s a stoma pouch, not a bag at all. I think I grew up with the thought that to be carrying a colostomy bag around with you was a big issue and that old people who have them always smell of poo and are carrying round a bag which is quite separate from the body. In fact, a stoma pouch is actually a fairly discrete thing. It’s stuck to the body with adhesive, you can have a shower with the pouch on and it won’t come off. There is a filter on the bag, so gases are filtered out in order that it doesn’t balloon, but no smells come out. The first bag I had had no filter and the smell when it was changed was really vile. But now changing the pouch isn’t too offensive.

Each time the stoma pouch comes off, its’ adhesive is weakened by a spray so the skin isn’t damaged. The pouch is taken off and out straight into a small rubbish bag, you clean round the edge, especially the skin, with wetted dry wipes, and lastly gently dried. Then a new pouch is placed over the stoma. They fit quite happily under clothes and you wouldn’t know it was there, apart from the occasional ‘phut’ noise. As you can’t control what the stoma does, it can gurgle and phut a bit as it pleases.

I had one very nasty early experience, following a feeling of bloatedness and like I was full of gas which needed to come out, I went into a hospital bathroom for a wash, bent forward to pick something up and whoosh, out of my rectum came a whole load of poo in a great hurry. To say it was a sh*t storm is no joke. There was excrement all over me, my wheelchair and the floor. We (i.e. a rather lovely, if unlucky, Healthcare Assistant) got the worst of it off, but thereafter I needed a new wheelchair, which arrived the following morning (for once, no complaints about Wheelchair Services, they acted pretty swiftly). Luckily, I no longer have severe embarrassment about such issues. A great deal of apologising and grateful thanks, were the order of the day.

I was in hospital for 6 days and then transferred over to my hospitals neurological rehabilitation unit for extra support and some physio rehab (it’s one thing that we are extremely lucky to have in West Sussex although I have been assured that there are others, the fact that ours is a unit separate from the hospital although on the site is a bonus). The rehab unit has a staff of nurses and healthcare assistants, physiotherapists, occupational therapists, speech and language therapists and doctors. It’s mainly under the care and direction of a quite brilliant Neurology and Rehabilitation Consultant. My fellow patients could include stroke sufferers, people with brain injuries and haemorrhages, other people with MS as well as many other neurological diseases and disorders. I stayed in the rehab unit for altogether 6 nights, but came home over the middle weekend.

Subsequent to the operation, I had a problem with my left leg and foot. I’ve got foot drop on my right side, but my left foot and leg are generally stronger. I lost motor abilities, feeling and movement of the left foot, so walking was impossible for several days. It wasn’t an immediate effect of the anaesthetic luckily (damage is always possible with spinal anaesthesia), so the next fear was that it could have been a relapse. Even though I haven’t actually had a relapse for several years, that was a worry. Luckily it has mostly resolved over the last couple of weeks. In the rehab unit, I had daily physiotherapy and occupational therapy, which provided some really useful help for my hands (have a look for Theraputty). My stoma nurse visited the unit daily as well.

Now that I’ve arrived home, I am changing my stoma pouch mostly alone as needed. The actual product (ie the poo), is taking some time to settle down. There have been a couple of days over the last fortnight where it actually produced excreta of the right consistency. But in general I’m having to exercise a lot of trial and error. Initially you anticipate that it will be overly loose. So happily the treatment for this is eat unhealthy food (hospital food really comes into its own here), and sweeties which contain gelatine, so marshmallows, jelly babies, fruit pastilles, etc. But, then it will also have several days where it stops producing anything solid, so then it’s a case of trying a bit of Movicol and adding fibre to the unhealthy food. I went a bit overboard on my first weekend at home and gave it too much Movicol, bran fibre, fruit and veg. Then the stoma turned into Vesuvius and there was ‘lava’ oozing out (which was the time when I yelled ‘helllpp’ and my OH came into his own as a helper in corralling the lava!) So, I’m still trying to get it right. It is likely to take several months to settle down. After years of being constipated, it’s bound to take time.

I will be receiving stoma products and stoma nurse visits from a delivery company (in my case Charter Healthcare). I have also had to sort out collection of clinical waste from the local council.

Hopefully over the next few weeks and months, I’ll get used to my new addition, figure out what it likes in the way of food and drink, and with a bit of luck it’ll decide to produce on a regular basis so I can organise my life accordingly. I’m thinking of it as being like a new born baby, I’m starting off feeding it bland food and introducing other food (and wine) gradually. I’m dealing with changing of the ‘baby’ and learning how to do so without to much mucking about in muck. And I’m accepting that this baby chooses to do whatever it likes, when it likes and to hell with what I’d prefer it to do. (In Freudian terms, this baby is all id, a completely selfish beast!)

Feel free to either ask me questions on this thread or by PM if you prefer. Once upon a time I was about as embarrassed as it’s possible to be about bodily functions and completely unable to talk about it, so anonymous postings are as welcome as open ones.

Sue

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Well, that should keep the Brain Fog thread off the top spot for a few weeks!

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Welcome back (or nearly) my luv; you are missed.

George

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Thank you so much for this very informative update, Sue. I am so pleased that you are starting to get used to a new way of doing things. I hope that you very soon feel real benefits and a big improvement in quality of life that this sort of surgery can give.

Alison

Well done Sue, for taking the time and patience to document all this. It can’t have been easy to recall, especially when Brian pops round!!!

It will definitely help anyone who might be following your path.

You’re a trooper, you really are and I’m nominating you for Woman of the Year for bravery,tenacity and just for being you.

I am honoured to be your friend.

Pollsx

Thanks Sue - very informative - and good to hear things are going well.

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Really, really informative - thank you so much for going to the trouble of writing all this down. Hope things go as smoothly as possible from here.

How about making this a sticky?

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Thank you for so much very informative and useful info Sue. You really have been through it haven’t you x.

Glad you’re home, and I hope you now have some peaceful times ahead after all the trauma.

It’s good to have you back,

Ang

it`s very sticky!

pollsx

I would say more gueee than sticky!

WOW! Just wow! Thanks for sharing and welcome back. xx Eve

Oh Sue, I’m totally in awe. Very informative indeed.

My dad had a colostomy bag after having what we now think was ulcerated colitis for years. It was an awful thing and my dad absolutely hated it. He had it for 20 years before he died in 1992.

Back then they weren’t so good and it was always leaking and dad bless him always smelled of poo no matter what he did.

i am just so glad things have improved tremendously and people can live their lives with these things.

I was speaking to a girl in her twenties not long ago who also through ulcerated colitis has one and she says it’s the best thing she has done. She had on the tiniest of skirts and you would never have known.

Thanks once again, Sue.

Mags xx

A wonderfully written piece Sue. Informative and “light”. I don’t understand why it isn#t a Sticky. How does one go about requesting that it be made one?

Sue oh sue oh sue

you talk of pee and poo

and ops to help you through.

there’s lots of oh! And oooh

very clever too

we wish you well and thank you xxx

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Thank you all so much for your encouraging comments about my original post. I thought it might be interesting for some of you to know how things are going with the colostomy. So I’ve written a bit of an update, its split in two, one month after the op and 8 weeks after.

One month after the operation.

So, it’s now a month since the colostomy. Some things have changed, some haven’t. I’ve been gradually getting used to feeding and changing ‘the baby’. I’ve discovered that calling ones stoma a baby isn’t unusual. I’m a bit more comfortable with it now and am eating more interesting food.

Changing the stoma pouch has become a lot more normal, I change it 2 to 4 times per day, depending on how active it’s been. There have been a couple of days when it’s been a bit ‘frisky’, and the bag has filled almost completely. I’ve become more confident about changing it, even when it’s been fuller. I still don’t have it behaving reliably or in anyway regularly. Some days the consistency of the product is thick and claylike and others it’s looser. I don’t seem able to achieve a perfect balance. I can’t really tell any difference depending on what I’ve eaten.

The stoma itself has shrunk, the stitches have dissolved although I can still see the marks round the edge of the stoma. I’ve learnt to cut out the hole in the stoma pouch, it has remained the same size for about a week now, so it’s likely it won’t shrink too much more. The feel of the actual stoma is harder than you’d expect. It’s still very pink and looks raw and even like it should feel sore, but it has no nerve endings, so it just doesn’t really feel anything like the way it looks.

I’ve not learned yet the difference between the stoma just gurgling, squeaking and phutting to the feel of it filling with poo. I’m expecting (hoping maybe) that I will be able to tell the difference eventually.

I’m quite enjoying using sweeties as medicine. The stoma nurse from Coloplast suggested licorice as a mild laxative. So, it’s licorice to make it produce, and marshmallows or jelly sweets to thicken it up. I was hoping they could be obtained on prescription but have been told that’s not likely!

I’m still using Movicol, but again, it’s really difficult to get the right balance.

Some days all it does is phut. We tend to just ignore it. I don’t know what the right etiquette is. Should I act like it’s a fart and say ‘excuse me?’ Or should I do what I am doing and ignore it? If it’s a fairly discrete phut, then I think I’ll continue to ignore it. But if it’s more like a little steam train, I think I’ll have to start being polite and excusing my unruly digestive processes. Sometimes it seems to be as badly behaved as a 10 year old boy.

Oh the social manners of the stoma!!

I’ve now seen the Stoma nurse who is employed by Coloplast, she came to my house for the first appointment but subsequently will see me in her clinic which is held in a doctor’s surgery nearby to where I live. She’s really quite helpful. Like most of the nurses I’ve encountered, there’s an ‘everyday’ sort of feel to the whole process so it takes any prudiness out of the encounter.

4 weeks later.

So it’s now 8 weeks since my colostomy operation and it’s fair to say that me and the stoma are getting on reasonably well. In fact, I think it’s possibly easier to cope with than a supra pubic catheter. I’m managing it on my own in spite of having problems with my hands.

The stoma itself started out post operation as a largish ugly looking beast with stitches all round it and was really pretty daunting. It gradually shrank in size, the stitches dissolved, it looks just pink and reasonably healthy and is altogether more attractive. If it’s possible to call a stoma attractive.

It’s not exactly reached any kind of a routine as yet. It would be very nice if it had. But then after having spent years with an unruly bowel, it would be surprising if it had a set time when it produced a nice neat poo which would mean that I could arrange my life accordingly. No, this beast works according to what it wants. It is continuing to excrete whenever the hell it wants, as many times a day as it feels like. I could be midway through eating and it decides to work, and sometimes it’s been midway through being cleaned and changed. There is something actually quite interesting about watching how it’s working!

I had started thinking that maybe it was settling into a routine whereby it would produce a lot on one day, then barely anything the next, so a two day cycle. But then it’s decided to produce every day for about a week. So, it’s really anyone’s guess as to what it will do.

As the stoma works, the product (i.e. the poo) goes straight into the pouch (rather than a bag) which is kept closed off from the outside world. It is attached to the skin by means of an adhesive strip (what they call a flange). I have got quite sensitive skin so luckily the adhesive is gentle. I’ve been told that sometimes people become sensitive to a particular stoma pouch so have to change to another. The stoma pouch fits over the stoma and the hole is cut to fit snugly around it. There’s a little filter which lets gas out but filters out any nasty whiffs. And you remove the stoma pouch with a spray adhesive remover, clean around it and particularly cleaning the skin with dry wipes which you dampen in water, then dry it off all over and stick a new bag on.

So it’s not like carrying a colostomy bag around (as you might imagine). It’s a completely different way of working to having for e.g. an indwelling foley or supra pubic catheter where you have tubes that go from the bladder to a collection bag which is some way off from the bladder. And because it’s poo, you don’t have to keep everything sterile.

Because I’ve got an SPC, I’ve been ultra careful about contamination, I’ve actually been Micropore taping a small disposal bag to my skin to create an exclusion zone (so to speak) around the SPC wound. In spite of this, I’ve still been having a problem with a persistent UTI. But I don’t think this actually has much to do with the stoma, it’s more of a catheter related infection. (Since it’s not a straightforward e.coli bacteria causing the infection.)

I’m still in the process of having to cut the hole in the pouch to fit my stoma. This week I saw the Stoma nurse in her clinic. She measured the stoma (30mm x 36mm) and thinks it has now settled to a size that doesn’t seem to be shrinking any more. Although stupid me ordered some supplies of new pouches without taking this into account. Next time I order, the holes will be pre-cut to fit the stoma. It’s irritating because I have to keep drawing round a template and then cutting the hole out. And I was never good at crafts, now that my hands are a bit rubbish, it’s even harder. Yesterday I actually started just cutting freehand, knowing the measurements and having rings marked out with sizes on the pouch, I think it’s probably easier and more accurate.

The stoma nurse asked me whether I’d changed the pouch outside of the house ‘yet’! Cripes, I thought, not bloody likely. At home I have all my kit laid out in front of me. I have wipes, a small Tupperware box for water, bags, adhesive remover spray, a peg (to get my t shirt out of the way, don’t know how I shall manage in a jumper in the winter), a spare small bag and micropore (to keep the SPC protected from contamination), and of course a new pouch. How on earth would I replicate this away from home? And my OH keeps talking about holidays, how would you manage on a flight? Or in a public loo with no convenient worktop / table? Or in a hotel, I’ve always moaned about how in most hotels there isn’t enough counter space for all ones toiletries. So how do you cope with ‘toiletries’?

I’m still figuring out whether eating certain foods are likely to make it perform better. Thus far, I’m completely in the dark. I started off going for just one type of vegetable at a time, but honestly, it doesn’t seem to change the product no matter how many type of fruit or veg it’s fed. It just does what it wants, some days it doesn’t perform at all and then the next day it won’t stop. I’m still taking Movicol. But again, it doesn’t seem to respond exactly as you’d expect. So I’m having to balance that out as well, going from half a sachet to one and a half, depending on what was produced the previous day.

I had an experimental ready made curry a couple of weeks ago. And while there weren’t any side effects exactly, it smelled horrible when changing the pouch the next day. So since then I’ve tried other food experiments, gradually increasing the chilli level as well as varying the ingredients. I’ve yet to have anything with more pulses, but no doubt I’ll try this soon.

The stoma doesn’t seem to object to wine. Which is a bit of a relief. I’d have to change personality if I couldn’t drink at all. I’ve learnt to be cautious over quantity just because of balance and transfer issues, so I don’t think it’s had a decent work out over the quantity of wine. I don’t think I’d want to try changing the pouch if I wasn’t reasonably sober anyway.

I’m still using the ‘licorice is a natural laxative’ argument for my new licorice addiction. I’d just forgotten just how much I like it.

And I’ve discovered new noises it likes to make. I previously described the wind noise as a ‘phut’. It has extended its range. It sometimes squeaks or squeals, sometimes it goes ‘chuff, chuff’ like a small train. It still phuts. And I’m still constantly checking (by looking through the viewing window) to see if it’s just a phut or a chuff, or more of a bag filling with poo. Perhaps one day I’ll know the difference.

I hope this is still interesting to people. I don’t want to be the irritating kind of person who can stop talking about her bowel movements, or lack of them!

Sue x

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Got a poem Slug?

Sue, I think it’s amazing the way you are able to talk in detail, about ‘a day in the life of a stoma’ . You’ve actually given it a personality, like some kind of inner being with its own agenda.

I was talking to a friend today who is going to have a colostomy in November. Don’t panic, mercifully she hasn’t got the dreaded big C, but diverticulitis and fistulas.

She looked naturally quite forlorn as she told me.

Well I said, 'Oh I am sorry to hear that…BUT a good friend of mine had one recently and she says it’s marvelous…a million times better than before, coping with everyday difficulties. ’

If you could’ve heard me, singing the praises of your ‘baby’! You would’ve thought I was selling stomas on commission!!!

I did tell her you also have an spc like me, and I call you A 2 bag lady!

So your experience and my description of it, I believe has made my friend actually look forward to her op and ‘new baby’s’ arrival!

As I’ve before, you are a true soldier Sue and I love you for your doggedness in coping with every horrible thing MS throws your way!!!

Much love, Pollsxxxxx

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This is brilliant to read Sue. I don’t have one but know several people who do. It’s a great report and gives a wonderful understanding of life with one. All the things you want to know but were afraid to ask. Thanks for being so open xx

Thanks for posting this Sue you have helped ease my mind about having a pouch. Don