Testimonials and stories from those that have been through stoma surgery

Did you know that there are around 130,000 ostomates in the UK? Given that so many people in the UK have an ostomy, it’s surprising to see that having one is still often surrounded with taboo and stigma.

We want to see public attitudes changing and a greater sharing of experiences, showing that ostomates can live their lives to the full without secrecy or shame. To this end, we see having an ostomy as being akin to wearing glasses or a using a hearing aid — something that both men, women, young and old can have.

Having a stoma shouldn’t be viewed as embarrassing, but as something that has often saved its owner’s life. The reasons for having one are diverse. They can range from cancer, to different types of inflammatory bowel disease (IBD) such as ulcerative colitis and Crohn’s disease, to diverticulitis or complications with the bowel’s function. Until cures and preventative treatments are found for these conditions, ostomy procedures will continue to be a life-saving solution for many.

Our Stoma Stories section brings together answers to some of your everyday questions on living with a stoma, achieving more and helping you to live your life the way YOU want to.

If there's a particular topic or subject area that you'd like to know more about, contact us and we'll happily take a look into providing you with some further advice.

Hidden Voices- "A Bag for Life" : living with a stoma

Clothing - what to wear!

Nicola wearing Loose fitting dress from Fat Face

Swish up your post op wardrobe

"I think one thing that most women can safely say they have in common when finding out they will need an ostomy, is a collective worry over how they are going to dress..." Read more

What to wear after Stoma Surgery

Guest blogger Nicola is a mum, a student and a writer. Due to advanced colorectal cancer in 2012, Nicola's rectum, lower part of the colon and surrounding muscles were removed and she now has a permanent colostomy.

I think one thing that most women can safely say they have in common when finding out they will need an ostomy, is a collective worry over how they are going to dress.  I am a big fan of the #GetYourBellyOut campaign, but you don’t necessarily want my ostomy out on display all day, everyday.  Just like anyone without a colostomy bag, I think women generally like to keep their toilet habits, whatever they may be, under wraps… or at least under clothes.

Before having my stoma surgery, I used to predominantly wear tops that were very tight around my stomach and low-slung hipster jeans. I then wore maternity wear when I was pregnant and for about 6 months after with the first baby, and, to be honest, I don’t think I ever truly got out of it after the second baby – but that’s another story. Anyway, basically as far as I could see it, everything in my wardrobe was not going to work with an ostomy.  Excellent.

After my operation I found it very hard to dress.  I struggled just to get my head around how I needed to dress let alone actually find anything to wear.  I felt like nothing suited me.  Anything big round the waist, I felt like I was wearing a tent. Anything more fitted, I felt made the bag obvious – on reflection, it probably didn’t, that was just my fear.  Plus I still wasn’t feeling well enough to be traipsing round shops. Every time I opened my wardrobe my heart would sink looking at all these gorgeous clothes that I had accumulated over the years, some having special meanings, especially the items passed down to me from my mum and I was devastated that I wouldn’t get to wear them again. Getting dressed became a nightmare because I would spend the whole time looking at what I wanted to be wearing. Eventually I decided it was time to take control of the situation, starting with a major clear out.

I have heard many times before that you should clear out your wardrobe once a year and throw out anything that you haven’t worn in two years. I have never done this!  As a result this seemed like a huge and daunting task, so I needed to make it fun.

Fashion Show

Get your partner, a couple of friends, your sister, anyone whose opinion you would trust round and give them a fashion show.  Think ‘Sex in the City’ when Carrie moves in with Big and can’t take all her clothes. It will make it more fun having a support there but the main reason you want other there is because, having a change to your body can feel like it did when you were a teenager with a spot – you feel like there is a bright red beacon shouting, “look how awful I look” but no-one else even notices until you point out how horrid it is.  The same will go for your ostomy, so a second opinion is always a good idea. Try everything on and split into ‘keep’ or ‘get rid’, but don’t throw your good ‘get-rid’ clothes out; I have a very good use for them.

Now I would take this opportunity to put everything your are keeping back neatly and well organised, so that opening your wardrobe is now a joy and you can see and find all your beautiful clothes (that look gorgeous on you) easily.  A much more joyful experience when opening your wardrobe than before!

Out With The Old & In With The New

Now there is one obvious thing you need when revamping your wardrobe – money! The saying is; ‘one woman’s rubbish is another woman’s treasure,’ and I definitely think this is true of clothes. Since having a colostomy bag, I am suddenly looking at clothes that I wouldn’t have seen before. My sister came round wearing a jumper that would be perfect for me post-surgery so I asked her where she bought it. She couldn’t remember but a few weeks later she brought it over, telling me that she hardly ever wears it so I may as well have it (yay!). I know that I have loads of lovely tops my sister would look great in that I’m never going to wear now so it gave me the idea for a clothes swap. I had heard of the ‘Swishing’ craze some time ago, so decided it was time to get involved.

For a Swishing Party you basically invite friends, everyone brings clothes they no longer wear and you all swap. There are varying degrees of how seriously you can take your Swish and numerous websites offering fountains of ideas, so just pop ‘swishing party’ into Google and pick how you want to do it.  If you not keen on the idea of hosting your own swishing party, there are organised parties all over the UK that you can go along to, again all with varying degrees of seriousness and organisation on your part.

Selling your clothes is another option. It’s not just eBay anymore; there are hundreds of website dedicated to selling second hand clothes such as http://www.preloved.co.uk or http://www.vinted.co.uk where you can sell or swap (as well as buy).  It may also be worth checking Facebook for a local selling page so people can just come and pick them up, save posting items all over the place, we have a wonderful one for my area.

What Works?

This advice is actually similar to what I mentioned in my ‘Swimming with an Ostomy’ article.

  • Patterns – Patterns make it harder to identify any bumps and movement.
  • Ruching – Especially when it is on the same side as your ostomy, will hide all manner of sins. I have even more good news… ruched gives the illusion of a smaller waist. So it will hide the ostomy and make you look slimmer – what could be better than that?!
  • High Waisted Jeans, Trousers or Leggings – They effectively act a bit like protective layer, over the bag. I have found that I can even wear tight tops again over the top of my jeans which has been quite revolutionary for me.
  • Rockabilly – Think 1950’s glamour! Pinching in at the waist and flaring back out again.  This again is very slimming as your waist is your thinnest point and them it flares out so you can’t see anything underneath.
  • The biggest piece of advice I think I can give when it comes to coping post surgery is – be kind to yourself.  Your body (as well as your heart) has been through an astonishing ordeal and it will take time for your body to settle and your concerns of how you look dwindle.  So give yourself time and then have lots of fun swishing up your wardrobe after surgery!

Food, drink and eating out

Going out for meals

Going out for meals

"They say steer clear of baked beans and stuff that can give you wind, but I find small amounts okay. I do tend to steer clear of fizzy drinks – a tip with carbonated drinks..." Hear more from Clive on food & drink

Clive provides insight into eating out with a Stoma

Guest blogger Clive has Crohn’s disease. Clive had a panproctocolectomy in June 2013, and now has an ileostomy.

Dining out before stoma surgery.

Now this is not a thing I do very much of, as when my illness was very bad I could not go out of the house let alone out for a meal. I was rushing to the loo every five to ten minutes, sometimes I could go for half an hour, wow! I only had to look at food and I was on my way to the loo, I even thought of putting a bed and a TV in there, haha! But seriously, it was no laughing matter.

Straight after my surgery, I just had sips of water, then moved on to jelly and ice cream, and within a week I was back on to normal food.
I appear to be very lucky as I can eat almost everything I used to be able to eat, with only a few exceptions like nuts, sweetcorn and mushrooms, although I have had these in small quantities and as long as you chew your food well, hopefully there should be no problem. I do have to remove the peel off of apples as I think that would be a bit too much to cope with.

It is just trial and error and what suites you personally.
They say steer clear of baked beans and stuff that can give you wind, but I find small amounts okay. I do tend to steer clear of fizzy drinks – a tip with carbonated drinks: if you tip your chosen drink from one glass to another a few times, it will take the fizz out of it! Not very practical in a restaurant though, so I just tend to stay with soft drinks or the odd Guinness.

The first actual meal out in a restaurant since my operation was in the September when I took my wife out for our anniversary.

I was a bit apprehensive but I chose carefully and chewed well and it was very enjoyable. This might sound a little strange but it felt funny to be eating out after three years of not being able to eat hardly anything or not wanting to eat anything because of the pain, stomach cramps and bloating I had after any food. Now, though, as I said, I can eat almost anything! I do try to eat healthily but I’m afraid I have a very sweet tooth and do love chocolate, so when I saw a double chocolate sponge and ice cream on the menu well I just had to have it!

Advice on what to eat and drink when having a colostomy or ileostomy

Now some people as reported in the media a while ago may say that my Crohn’s is caused by eating junk food. Well, I have been a truck driver most of my working life and they have a stigma of not eating too well, but I always kept my diet quite healthy and not eating out in the greasy spoon type places, and always kept myself pretty fit. I can remember in the 70’s I went into a service station on the M1 and the guy I was with ordered egg & bacon and seeing the egg float to the bottom of the oil, like a sinking ship, along with the bacon… well I thought, ‘that’s not for me,’ so I just had a sandwich with some or other plastic filling! I’m glad to see that motorway services have improved a lot since then, but you do need a small mortgage to eat on them now! Oh, by the way, the guy with the grease-filled egg and bacon died a few years later from a heart attack! So I don’t think my Crohn’s was caused by my eating habits, plus everyone is different in the same way as peoples’ Crohn’s or UC symptoms are different.

We do have takeaways from time to time; Chinese, pizza, fish & chips and so on – not at the same time, I might add! And we do eat out at our various daughters’ houses which I couldn’t do before, or have lunch out in town or on a day out somewhere! My surgery was the best decision I ever made it’s given me so much more freedom to do the things I could not do before and, of course, if I had not had it I probably wouldn’t be here now. So go forth, people – do the right thing and enjoy your life again.


Fitness, Health and Sports

Swimming with an ostomy

Swimming with an ostomy

"The thought of swimming seems to be something that a lot of ostomates struggle with and, of course, I understand why. It was something I was very worried about but it just sort of happened..." Read more from Nicola

Handy tips to know when swimming with a Stoma

Guest blogger Nicola is a mum, a student and a writer. Due to advanced colorectal cancer in 2012, Nicola's rectum, lower part of the colon and surrounding muscles were removed and she now has a permanent colostomy.

The thought of swimming seems to be something that a lot of ostomates struggle with and, of course, I understand why. It was something I was very worried about but it just sort of happened.

A friend asked me to join her on a trip to an amazing spa close to where we live to celebrate and relax after finishing my cancer treatment, which I leapt at, paid nearly £200 for (I know, but I had just survived cancer, totally deserved it), then went into a complete hyper-melt-down-type-panic over. How on earth I was going to do this with a colostomy?

This was only about 6 months after the surgery that gave me my colostomy and two months after my final bout of chemotherapy had finished, I was still wearing balloon sized clothes. There was no way I could wear a swimming costume – the bag would show through, it would become unstuck and float around the pool, and if that didn’t happen, the large neon sign flashing ‘this girl has a colostomy on’ above my head was bound to give it away!

I first decided that I probably wouldn’t use the pool, or the sauna, or the steam room, basically anything that involved any sort of water coming into contact with the bag was going to be a no. This was going to defeat the point of a spa day but hey, needs must.

However, I still wanted to look the part, and I was going on holiday with the family later that year so better get on with trying to find a swimming costume. The great news is that swimming costumes are back in fashion – yay! Pretty much everyone is selling them now. I ordered about twenty so that I could try every style, type, pattern and this is what I found worked…

  • Go patterned – The funkier the better, as the pattern makes it so much harder to identify lumps and bumps and movement under a pattern (this incidentally is true of all clothes).
  • Go ruched – Especially if it is on the same side as your ostomy, this will hide all manner of sins. I have even more good news… ruched is also incredibly slimming, in fact most shops sell their rushed swimming costumes as their ‘Miracle Swimwear’ as it gives the illusion of a smaller waist, so it will hide the stoma and make you look slimmer – what could be better than that?!

Now we’re talking! I must say once I had found a swimming costume that worked, it alleviated most of my fears and I had even decided I was going to give swimming a go. I took two swimming costumes and about fifty-three ostomy bags – just to be sure. My thinking behind the two swimming costumes was that I wouldn’t want to put a wet swimming costume over a fresh bag.
When we got to the spa, I slipped into the disabled toilet to change into my costume, so no embarrassing moments there. My friend, not even thinking, said she loved my costume and when I asked if she could see my bag, her face was a picture as she said she had forgotten I had one because you definitely couldn’t see it.

More importantly, how was swimming? It was fine! As I often find with anything ostomy related, the thought of it was immeasurably worse than the reality. It was exactly the same as before (except I wasn’t worrying about whether I was truly skinny enough to be in a bikini). It felt amazing after all that surgery, treatment and time in bed to feel my muscles stretch and move again with the support of the water. When I had finished I did rush to the bathroom to check but the bag was still stuck down to problem so I didn’t even change as I knew that I wanted to go back in the water again, which I did, again no problems. It was heavenly.

This was such a break-through moment for me. I remember being so upset when I found out I was going to have a permanent colostomy that I would never get to go swimming with my children (who were only two years old and three months old at the time), lay by a pool with them, go to the beach, let alone actually go swimming with them. Once I had done it for the first time and knew there was nothing to worry about, I felt confident to swim numerous times while on holiday. Now I have done it a few times I honestly wouldn’t think twice about jumping in a pool. So far removed from that panic moment.

If you are feeling nervous about the bag coming away, you could always use some Brava Elastic Tape, to be extra sure and alleviate the worry. I have done a little hunt around this summer’s collections to bring you some fantastic choices all different prices and looks so I really hope this will help you find something gorgeous so you can feel confident and beautiful by the pool.

Running and exercise following Stoma surgery

From down and out, to up and running

"Following my illness, I decided that I needed to try and get active as soon as possible. I remember asking my surgeon at a follow-up appointment, about four weeks after my operation, if I could start running again..." Read more from James

Exercise after stoma surgery

Guest blogger James Sharman shares his experience of getting back into an active lifestyle after ostomy surgery following  a perforated colon.

My name is James and I live in West Yorkshire. You might have seen my article in the Winter 2015 edition of the Colostomy Association’s Tidings magazine (page 12-13), which documented my story of how a sudden bout of diverticulitis turned into a perforated colon in March 2014. This lead to a temporary colostomy. Before this unexpected turn, I was very active; going running, coaching a junior football team and generally in good health, so I wanted to write about how having a stoma need not be a barrier to an active lifestyle.

Following my illness, I decided that I needed to try and get active as soon as possible. I remember asking my surgeon at a follow-up appointment, about four weeks after my operation, if I could start running again. He said I could as long as I didn’t do any marathons (he’s obviously not seen me run, I look ready for the knackers yard after three miles usually, let alone twenty-six!). The first thing to do was to consider if any additional equipment was needed. It wasn’t just a case of throwing on a t-shirt and shorts and getting on with it; I had stoma practicalities to consider now. My excellent stoma nurses at Calderdale hospital pointed me in the direction of a hernia belt and, whilst my first thought was that the belt looked like it might cause more damage than it prevented, I went with it!

I decided not to go road running immediately and build up slowly at the gym instead. Here came conundrum number one and a completely new experience for me as a new ostomate – getting changed beforehand in the changing room! Do I take a cubicle so nobody sees my bag when I strip off, or do I get changed in the open plan area and risk people seeing this funny looking bag strapped to me? “Stuff it”, I thought and went for the latter option (I felt I needed to push my bravery on occasions to face up to things). I maybe got changed slightly awkwardly and tried to hide it to a point but I was confronting the situation and, for me certainly, that is what was needed. Plus, I’ve found since that if people see the bag, unless they’re “in the know”, they don’t really know what they are looking at; it just looks odd I guess.  I suppose we should embrace being unique as ostomates!

“After a few weeks I went back road-running and it felt great.”

So into the gym I went and, if at this point you’re expecting anything remarkable such as I lifted four times my own body weight or ran so much that I wore the belt out on the running machine, then you’re in for a disappointment as nothing like that happened. I ran, I rowed, I even tried the jaywalker and slowly but surely over the next few weeks I felt like I progressed. I didn’t lift anything, as lifting has never been my forté so I’m damned sure that having an increased risk of a hernia, my abdomen is not going to suddenly propel me to the status of Olympic weightlifter (hats off to Blake Beckford for his sterling efforts in this area!).

After a few weeks I went back road-running and it felt great. To this day, I’m still building up and, even after 13 months, don’t yet feel to be back at my former level which, whilst never marathon or even half marathon status, consisted of a few 10k’ers. The stoma presents no challenges; indeed when I’m running, it’s not active (my 16-year-old A Level PE-studying son tells me that there is a biological reason why bowels go into “sleep mode” whilst doing any strenuous exercise, so that’s good news for all ostomates!). Touch wood, I never get any pain but always make sure I warm up thoroughly and the only thing I’ve needed to buy recently are new Sorbothane insoles for my trainers to help give spring in my running shoes, and that’s not linked to my stoma in any way (can’t blame it for everything!).

I mentioned junior football at the top of this article and, after only three weeks out of hospital, I was back on the touchline managing my Under 16’s team. Now here is where I had to be very careful because I took the team warm-up previously and that’s not advisable for anyone fresh out of hospital after abdominal surgery. Setting up nets, taking them down, twisting, turning, even returning a ball to the field can all be a strain on your abdomen, so I took it easy. I looked like Brian Clough just wandering on to deliver the team talk and then going back to the sidelines to sit in my fold-up picnic chair! However, I’m glad I took it easy as it assisted my recovery and, by the last game of the season six weeks after surgery, I was able to take the warm-up again and have pretty much full involvement (by strange coincidence, the last game of the season was just around the corner from Huddersfield Royal Infirmary where I had my operation; a kind of strange symmetry I thought, to show how far I’d come!).

“…even in the most sudden of circumstances it’s possible to get back to the level you were at before…”

By the start of this season I was back up and running fully, and determined to carry on coping and challenging myself to do everything I did before. No stoma or bag was going to stop me!

I even played volleyball on holiday (not intended to be serious, just the usual entertainment offering, although it got serious once we started!). As ‘Preparation’ was now my middle name, I took my stoma guard with me. I chuckled to myself as I put it on thinking about how everyone else was just turning up and playing but I had to go back to the apartment to get the guard just to play a holiday game of volleyball. But again, half of the battle is psychological and the guard gave me a feeling of protection so job done!

Hopefully, the above helps to demonstrate how even in the most sudden of circumstances it’s possible to get back to the level you were at before, if not a little better in terms of determination and a desire to better yourself. I hope you’ve enjoyed reading this and feel free to follow me on Twitter at @jamess90.


Relationships and Advice

The importance of support

The importance of support

"My family throughout my illness was essential to me. My wife especially, who became my carer through all of this as, a lot of the time, I had to have help in the bathroom, getting in and out of bed, and getting dressed..." Read more from Clive

Just how important is the support from family and friends

Guest blogger Clive has Crohn’s disease. In June 2013 Clive had a panproctocolectomy and now has an ileostomy.

I would like to talk about how important the support is from family and friends when you are ill. I will base this on my personal journey.

When my Crohn’s disease became uncontrollable, I decided to take some time off of work. I was a courier at a family-run firm and didn’t want to have to let them down at the last minute, as it was becoming increasingly difficult to carry out my duties. My boss was quite understanding but obviously the situation couldn’t go on for ever, so I had to make the decision to give up my job. I had made some good friends in my thirteen years with company and one in particular always came to visit me at home, and also when I had various stays in hospital. He had come from Australia but was originally from Surrey near where I was born, so we had that in common and we got on really well, and I was glad of his friendship in those early days. After about two years we unfortunately lost contact so I guess he went back to Oz to his wife and child.

My office boss came to visit me at home and we still meet up from time to time. I call into the office for chats sometimes, as he only does a couple of days a week now since his retirement. Those visits were very important to me as I was feeling very cut off from everything, and all I ever saw was the four walls of my house. It helped me get through those difficult times.

I know this sounds mad, but sometimes it was nice to go into hospital, after the initial shock of being admitted of course, just to get out of the house! I always went into the same ward so I got to know the staff and made some good friends with a few of the patients. One guy I met in particular has become a very good friend and we are still friends today. He also has Crohn’s and has been through a lot more than I have. A lot of the time we seemed to be in hospital at the same time and always in the same ward, and when we were in separately we always visited each other! In fact the first time he visited me in hospital I didn’t recognise him out of his pyjamas! Haha! But seriously, . We also have the same consultant who we both get along with well, as he is a very down to earth guy, as well as being one of the top gastro doctors in the south.

My family throughout my illness was essential to me. My wife especially, who became my carer through all of this as, a lot of the time, I had to have help in the bathroom, getting in and out of bed, and getting dressed. This sounds pathetic, I know, but anyone with this illness will know how debilitating it can be. I am very lucky to have five wonderful children; although all grown up now, they were all my rock. My youngest daughter, who has just finished college, was very good and looked after mum during the times I was in hospital, and even though she was studying hard and also leading her own life, she and her boyfriend always visited me in hospital. My two step daughters, who have been with me since they were very young and who I consider as my own and I am always dad to them, were also always there when I needed them, as they still are. My son and eldest daughter also gave a lot of support and always came to see me when they could. My brother visited me often at home and in hospital and always kept a good supply of model railway model railway magazines coming my way!

On the morning of my operation, my eldest stepdaughter took me into hospital along with my wife and youngest daughter. They came up to the pre-operative suite with me but when it was time to go in there I wanted them to go as I think it would have got quite emotional for all of us, and I needed to keep it together before this daunting operation. My daughters stayed with my wife all day and ten hours later when I awoke from my operation, my wife and eldest step daughter were there as I came round. All of them came into see me every day I was in there, and also my friend whom I met in hospital.

On the day I came home my wife and daughter picked me up and took me home. My family all rallied round to help during my recovery, my wife especially with help dressing changing dressings and so on… it’s a good job she used to be a nurse! Just over a year on and she is still my rock, as I sometimes have bad days and suffer with debilitating joint pain.

Just before I close, I would like to say , so goodbye for now and keep your chins up, dear readers.

My stoma bag story

My stoma bag story

"Without the support of my family, boyfriend and friends I wouldn’t of gotten through my struggles the way I did and also the amazing work of my surgical team they worked so hard with me to make sure I was back to good health..." Read Leanne's story

Leanne Hammond shares her story about what life has been like for her since her diagnosis of FAP (familial adenomatous polyposis).

Leanne Hammond lives in Dublin, Ireland. She is a very fun girl who loves to take on new adventures. Here, she shares her story about what life has been like for her since her diagnosis of FAP (familial adenomatous polyposis). 


From the very beginning, I was an average 18-year-old girl from Dublin. I was always very healthy throughout my whole life, loved nights out and having fun, however I started noticing changes in my bowel habits, cramping and also bleeding. Eventually in 2014 at age 18 I attended my local doctor for a blood test and discovered I had a low iron count and low vitamin B12, which was an indication to an absorbing problem and, along with the my bowel symptoms I had, my doctor decided to send me for a colonoscopy and an endoscopy (a camera down into my stomach). About 7 months later, I received my appointment for the hospital to have these procedures done the following week, so on 27th February 2015 aged 19 I had my colonoscopy and endoscopy.

To everyone’s surprise, doctors discovered hundreds of polyps in my large bowel and one polyp in my stomach which was very rare and there was no sign of bowel problems in my family previous to me. They removed 20 of these polyps during my colonoscopy to biopsy in the lab. I got the results back 8 weeks later when I found out the biopsies had come back abnormal, my world crashed down around me as I thought ‘why me?’ No 19-year-old should be faced with this.

I was later transferred to another hospital to have a genetic test done, which then I was diagnosed with the condition FAP (familial adenomatous polyposis) which is a genetic condition that develops into cancer if it’s ignored; but it was not genetic in my family – I was the first to develop this condition.

Within weeks I had met with a surgeon because surgery was the only answer to cure and remove these polyps as my bowel was carpeted with them and I was told it would only take one of these polyps to turn cancer before It would be too late, so we discussed surgery to remove my bowel and I found out I was going to need a temporary ileostomy. I was terrified and so upset and worried what my body would look like, I was upset because I didn’t think my life would be the same, would I be able to wear the same clothes that I wear now? Can I eat the same food I eat now? So many questions ran through my head.

As the weeks passed and the anxiety was slowly worsening I realised; instead of worrying about the bad things I started looking at the good things and dealing with it in a positive way, as this surgery was going to save my life. I was back and forth to the hospital for different scans and then 3 months later my surgery was scheduled. I went under an 8 hour surgery on 10th September 2015 to have a total colectomy which meant I had my full large bowel and rectum removed. I also have a J-Pouch formed using my small intestine which was left to heal inside, and this is the reason why I needed a temporary stoma.

After my surgery I didn’t improve and every day I got worse. On 14th September I was taken for a CT scan which showed I had a peristomal hernia and my small intestine had twisted which was the cause to my nausea and vomiting because it had stopped my output into my bag. Later that evening my surgeon made the decision to bring me down for emergency surgery. From then on every day, I started improving in hospital and I was slowly back eating a light diet.

I was discharged from hospital 10 days after but things got worse when I got home – I suffered with back pain which caused many problems as I found it difficult to walk for more than two weeks. I was then taken into A&E and my doctor suspected a clot in my lung because I had severe pains, but thankfully everything came back clear.

I had a very bumpy recovery which was so terrifying. I saw no end to this pain and I started regretting ever having the surgery done in the first place. My body went through trauma because this was such major surgery (and also the first surgery I had ever undergone) and I was so afraid, but now I’m 9 weeks after both operations and I’m doing great and I love my bag! I adapted to emptying and changing my bag almost straight away, I wear the exact same clothes as I did before surgery and the bag is never noticeable! I also eat and drink the same as I did before! I also hope to return to work in a few weeks.

I’m so grateful for my stoma because it saved my life and gave me a second chance to do all the things I’ve wanted to do! All along I was worried about how I would feel about my bag… but in the end my stoma bag was the easiest part of it all and I wouldn’t change my experience because it has made me a stronger person!

I hope to inspire other young people to believe that ostomies are not the end of the world and a lot more people have them than you realise. I knew nothing about ostomies before my surgery and now I can’t believe how common they are. I’m waiting for my 3rd and final surgery in the coming months to have my bag reversed and to live with my J-Pouch, but I know in the future if my J-Pouch stops working I won’t be afraid to face a permanent bag because I’ve had the chance to live with an ileostomy. Everyone’s experience is different but it’s so important to look at the positive side to everything. Without the support of my family, boyfriend and friends I wouldn’t of gotten through my struggles the way I did and also the amazing work of my surgical team they worked so hard with me to make sure I was back to good health, with both operation I was only left with 3 tiny keyhole marks that aren’t even noticeable now. I’m proud of how far I’ve came and how well I’m doing only weeks after such major surgery.


Support and advice

Stoma skin care

Stoma skin care

"When I first became the owner of a stoma (which I named ‘It’) three years ago, I was really concerned about how my skin would cope with being covered by the adhesive layer and baseplate..." Read about Ken's technique for removing his ostomy pouch

Techniques and supporting products that have helped me to look after my skin.

Ken is retired and enjoys running, golf and gardening, as well as repairing IT equipment. He was diagnosed with ulcerative colitis in 2011 and had keyhole surgery to remove his bowel, leaving him with an ileostomy. Here, he talks about techniques and supporting products that have helped him to look after his skin.

I was careful to apply barrier cream and anything that was recommended to assist in the care of that area of skin. The baseplate had a tendency to come detached in those days which does cause us all so much stress and embarrassment. My skin was also very sore and patchy especially close to my stoma.

On changing from a one piece bag to a two piece system I determined to start my regime again from scratch and see if I could establish the reason for the problems I was experiencing. I determined to change my baseplate at the slightest sign of a tingle (I’m sure you know what I mean) even if the baseplate seemed fine. A good quality adhesive remover used copiously was always part of a careful removal of the baseplate. The emphasis being to be as gentle as possible to my skin by supporting it as the adhesive gave way. Secondly I only used soap and water to clean my skin and showered with old ’It’ naked as nature intended when changing  the baseplate. Using a stoma cup helps to get in and out of the shower without ‘ incidents’ and only dry wipes to dry the skin before applying the baseplate ensures an additive free skin surface.

To my great delight that regime resulted in my skin healing really well and virtually no incidents of the baseplate ’letting go‘. On the occasion when that happens now I can usually put it down to my mistake. Having the baseplate on too long when I’ve been very active is mostly the reason. I have continued looking after my skin around my stoma in this way for the past couple of years and I’m content with it. I suspect we all have different skin types but for me this simple formula is perfect and keeps me free of ‘stoma worries’.

One of my biggest skin problems generally since ’It‘ is that of dry flaky patches on my face and legs. I generally had put this down to inadequate hydration of my skin for whatever reason. Because we do not have the water which would normally be extracted from food in our colon there is a natural shortfall in our hydration, I’m informed. It’s been recommended to me that I should drink about 2 ½ to 3 litres of water a day. I’m able to achieve this by sipping often during the day. I find that when I do this, and also use a moisturiser on the effected parts, my skin returns to normal. I also take a good quality omega3 fish oil capsule daily.

I find it difficult to consume that amount of water in a day. I do drink a fair amount of tea so I have been drinking organic decaf tea for a couple of years. The majority of decaf tea has the caffeine removed chemically which leaves residues in the tea which in turn upset my system. By using (hard to find Clipper) organic decaf tea that problem is avoided as the process is water based. I can then drink copious amounts of tea and count it towards my water quota per day. In fact, I think I will have one now…

I did think that because of my age my skin was having a hard time anyway so short of having a Ready Mix lorry load of anti ageing cream delivered I made use of Google to investigate solutions. It turns out that wearing sunscreen above factor 30 when outdoors (I do), eating a healthy diet (I do my best) and not smoking ( I don’t ) are the main contributors to a vibrant healthy skin. There are vitamin supplements of vitals C and E which are meant to work so I will have to try those or just accept this craggy old face as it is.

Glass is definitely half full. Have fun.

Leakage & seepage

Leakage & seepage

"Now I’m not saying that as soon as you put a bag on it’s going to start leaking, not unless it hasn’t gone on smoothly, or the hole is cut to the wrong size, or you’re just that unlucky...!" Read more from Clive about stoma bag leakage

My experiences of leaks, how to avoid them, and coping with them if they do occur!

Guest blogger Clive has Crohn’s disease. In June 2013 Clive had a panproctocolectomy so now has an ileostomy.

Now I’m not saying that as soon as you put a bag on it’s going to start leaking, not unless it hasn’t gone on smoothly, or the hole is cut to the wrong size, or you’re just that unlucky! However, I expect that some time in your ostomy life, you will experience at least one leakage or seepage of some kind.

After my operation, I didn’t have any problems with leaks of any kind for months, until I started to become more active and put on a bit of weight. Then one night, I got up to empty my bag (which unfortunately for me is at least two or three times throughout the night) when I noticed that there was a small leak at the bottom of the baseplate. It was not a large one but I did have to change the bag, as the output had started to break down the adhesive and, if left, would become a real problem as the output from your stoma can really damage the skin.

I have had these sorts of leaks a few times, but can then go for weeks or months without one.

My stoma is funnelled down so the output always seems to work away at that spot, sometimes I may have not placed the bag correctly and there may be a slight fold that the output finds its way through. I have a hernia around my stoma site and my tummy tends to bulge, so trying to get a smooth seal is sometimes a bit of a challenge. I always have a few wrinkles at the top of the outer adhesive but make sure I get the bottom half and the inner on smoothly.

When I go out, I have to wear a hernia support belt and, if I have had it on all day, I sometimes have a leak at the end of the day. It is important that if you do start to experience any sort of leaks you should check the size of your stoma to make sure the bag fits snugly (but not too tight as to force the stoma through the hole… ouch!) If you find measuring the stoma difficult I’m sure that if you contact your stoma nurse they will help or failing that talk to your GP or practice nurse.

The worst leak I have ever had was in the night and the whole bottom half of the baseplate adhesive had broken down because, silly me, I had not changed the bag at the first sign of a leak. We all learn by our mistakes! Fortunately, it was not too bad and I was able to get to the bathroom and clean up and change it without too much of a problem.

If I go out for the day I always take my emergency kit with me which contains:-

  • Two spare bags and Brava elastic tapes
  • Two disposable bin bags
  • Adhesive remover and a small water spray
  • Dry wipes and skin barrier wipes

I keep all of this in a small travel wallet, but obviously if you go for a longer trip, then take more stuff with you.

If you are unfortunate enough to suffer from leaks, speak to your stoma nurse, your GP or your ostomy product suppler to see if they can advise anything to help you.

I have used mouldable rings and tapes to cure this problem – I personally have settled on Coloplast’s Brava Elastic Tape and the Mouldable Ring.

The elastic tape is a semi-circle adhesive strip that tapers off at the edges and is designed to fit over the baseplate and down onto the skin giving you extra protection.

The Brava protective seal is a stretchy and slightly sticky type of material you can mould to fit snugly around your stoma to protect your skin. These are also very helpful if you at any time suffer with sore skin around your stoma as the bag adheres to it and not directly to your skin.

I use a one-piece midi drainable bag which I have pre-cut to my size, and this works well for me. I have tried the two-piece system but because of my hernia I had problems with adhesion.

I suffer with joint pain due to the Crohn’s disease and one of the things the hospital tried me with was a few sessions in the hydro pool. Well, I was a bit apprehensive about going into the pool, especially with other patients, wondering or not if the bag would stay on. But there was no need to worry as it was perfectly secure – no floating little pink bag! I have since been swimming in the sea and no problems at all.

Well, dear readers, I hope that this blog is of some use to you, and look forward to talking again soon, so take care and goodbye for now!


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