I am doing an event on Facebook premiere with Clinimed about helpful hints and advice for looking after your stoma. I am joined by a ostomy product specialist and a stoma care nurse to answer all your questions about life with a stoma.
Join us on Thursday 15th July at 10.30am on Facebook.
Sam xx
It is National Vegetarian Week! In January this year, I decided to go veggie, something I didn’t think I would be able to do with a stoma. And so I thought this was the perfect time to write about being a vegetarian with a stoma.
Firstly, let me just say that I am no dietician or medical professional and if you are making a big change to your diet and you have underlying health problems, you should speak to someone far smarter than me. I have had a stoma since 2013 and over the past 7 years, I have figured out what works for me and what doesn’t. You know your body really well, and in my opinion diet with a stoma is totally personal and differs drastically from person to person.
Stoma
When I first got my stoma, I heard these horror stories of blockages and never again being able to eat certain things. A nurse told me I would never eat curry again and coming from an Indian background, I nearly lost my head. I got a very basic pamphlet telling me to try and eat a healthy diet and that was it.
After struggling with my weight going up and down, having no energy and feeling totally adrift over what I should or shouldn’t eat now I had no large intestine, I got a referral to a dietician. It took a year to get an appointment and it was a total waste of time. At the time, I had a J pouch and she asked if she could see it… For those who don’t know, a J-Pouch is a pouch formed from your small intestine and is inside your body attaching your intestine to your rectum. She had no idea about how to advise me and just gave me the same pamphlet I had been given years before. It was a total waste of time. If you are seeing a dietician, it really needs to be one who has a good idea of diseases such as Crohns and Colitis and the body after having parts removed.
Conspiracy
Anyway, I digress. Last year, we decided to really cut down on the amount of meat we were eating. Then I watched a documentary called Cowspiracy. It is about the environmental impact of eating meat. It made me realise all the things we were doing like recycling, not buying single use plastic etc was overshadowed by eating meat due to mass meat farming. Now this isn’t a post to preach to you about the rights or wrongs of eating meat, that is up to you. But I just wanted to explain our reasons for going vegetarian this year.
My concern was that as I don’t have a large intestine, I don’t digest food the same way as other people do. Especially non soluble fibre, so those foods that are great for someone with a full digestive system like roughage and veg. So sometimes the food I eat comes out in my bag looking very similar to how it went in. (Peas and onions, I am looking at you!)
But I know my body well now and know what I can manage and what I can’t and I have learnt to chew well. VERY WELL. And now there are very few things that I can’t eat. Some things still cause me issues, particularly black beans.
What do I eat?
So how have I found it? Well after 38 years of being a meat eater, I did miss meat at first. And I have to admit that we have had one or two meat meals since January. But once I got used to it, we actually find it easy. Meat replacement foods are much more prevalent now, so we get quorn mince, sausages and chicken nuggets and fake burgers. But generally we just eat the same meals but without the meat. Supermarkets are so much better now, we literally see the plant based food fridges expanding every month. It turns out I can be a vegetarian with a stoma!
Some of the meals we eat are;
I also love a smoothie (though they can be high in sugar so I don’t have them all the time), spinach, mango, and apple juice is a particular favourite.
Can you be vegetarian with a stoma?
I have met hundreds and hundreds of people with stomas in the past few years and every one has different food issues. Some can eat mushrooms but would be in agony and blocking up with brocolli. Some can happily eat raw carrot but not popcorn. We are all so different. And we also change. For years, I haven’t been able to eat mushrooms, they would just cause pain and blockages and come out looking whole no matter how much I chewed. But now, I eat mushrooms at least once a week.
I have read people saying that people with stomas can’t be vegetarian, and that might be true for some people. But if you want to give it a go, then it is worth a try. Think about the veg you eat now alongside your meat diet. Meat eaters still eat veg too! If your system ca manage a good amount of fruit and veg, then great!
It is also about how things are prepared. I love salad. But if I have too much then I know I struggle. The lettuce is hard on my system, but if I shred lettuce and limit it to once or twice a week then it is ok. Other veg like cabbage and brocolli can be hard to digest but if I cook them for longer so they are soft, then it is ok for me.
Digestion with a stoma
And chew. Chew, chew and chew again! Digestion starts in the mouth, so don’t be rushing meals and shoving it down. Chewing well grinds up the food into smaller pieces and increases saliva which helps the process.
When you have a stoma, it can feel like your food world shrinks and it does take some time to settle into your new digestive system. But with time and learning about your own body, you can find a diet that suits you. I know there are some people who will never manage a full veggie diet, who have a very limited diet. And this isn’t a post to talk you into changing your diet.
But if you are considering going veggie or even just having more meat free days and you think having a stoma will stop you, I just wanted to share that it can be possible to be a vegetarian with a stoma.
For inspiration, I love Pinterest and you can see my Veggie food Pinterest board here.
Let me know about your diet and what foods you can and can’t eat and if you are a vegetarian with a stoma.
Peace and love
Sam xx
As we are having a bit of an Easter heat wave, it’s more important than ever to talk about dehydration with a stoma.
Its bad news for anyone but if you have an ostomy, it’s far easier to get dehydrated than someone with all their intestines because the large intestine plays an important role in helping absorb water from food waste.
Severe dehydration can be life threatening, and any dehydration with a stoma can make you feel poorly causing tiredness, a feeling of sluggishness and more. If your output loosens and you find you are emptying your bag more frequently then it’s worth upping your fluid intake.
The NHS also say:
With an ileostomy, you will be losing more salt and fluid. This happens because your colon is not being used and therefore is not absorbing extra fluid. You will need to include a teaspoon of salt a day into your diet. Salt is an essential requirement for your body and low levels of sodium (the main ingredient in salt) can affect how well your heart works. Signs of salt depletion are tingling in the fingers.
If you are also a renal patient, you will need to discuss your salt intake in more detail with your Renal Nurse Specialist, as your salt and fluid requirements may be different.
You will need to drink plenty of fluids to avoid becoming dehydrated. The recommended amount is 2-2.5 litres per day (a minimum of 8 cups per day). If you are becoming dehydrated it can generally make you feel very unwell.
We recommend that you have isotonic drinks, which are higher in salt and sugar. Isotonic fluids are better for you because of the higher sodium (salt) and glucose content. They encourage fluid to be absorbed into your gut, rather than passing straight through into your stoma bag.
These types of drinks include Dioralyte (which you can buy from supermarkets and chemists) and Lucozade Sport or Powerade, or you can make up your own rehydration drink using:
• glucose – 6 flat teaspoons
• salt (sodium chloride) – 1 flat teaspoon
• sodium bicarbonate/citrate – 1⁄2 teaspoon • make up to 1 litre with tap water.
You can flavour this with small amounts of fruit juice.
Its so important to keep on top of hydration with a stoma, I would say it’s one of the most important things. The make up of your body has changed and you need to readjust how you look after it. I remember after my first surgery the shock of just how thirsty I was.
My tips would be to have a bottle and sip through the day. I always drink sugar free squash and water as I find water alone goes straight through me. I also take a jug to bed with me as I know I get so thirsty in the night.
Rehydration sachets are not just for when you’re ill! I have them in all the time, I have one in my handbag for emergencies and they’re part of my ostomy kit.
Theyre my go to solution if I feel more tired than usual or if I have loose output, if I have any alcohol, I have one before bed and one in the morning and I highly recommend getting some in! I like the ORS tablets available from chemists and supermarkets.
When the temperature rises either at home or if you’re off on your holidays, then be very mindful of dehydration.
And as always, I can’t give medical advice so if I’m doubt, speak to a medical professional.
✌?& ❤️
Sam xx
Just a word of warning, this post has lots of graphic and medical images of my old stoma site healing and may not be suitable for everyone.
So after the last surgery where they resited my stoma, the old site was left open. I was gobsmacked when I first saw it as I’d never seen an open wound like this before.
They explained that they heal better if they’re not sewn up and they want it to heal from the inside out and so it was packed with dressing and I saw a district nurse every day for just over a month till it healed up.
I had a big cry when I first saw it, it was 3.5cm deep and looked like a gunshot wound, they said it would take around 4-6 weeks to heal and I couldn’t believe that could be true!
So I took photos of the healing process as I found it intriguing and I thought it might help others going through the same situation.
What follows are the images of it healing, as previously warned, they may be upsetting to some so don’t scroll down if you don’t want to look!
Here we go…
12th June – 5 days post op
21st June – 14 days post op
27th June – 20 days post op
29th June – 22 days post op
1st July – 24 days post op
2nd July – 25 days post op
5th July – 28 days post op
11th July – 34 days post op
15th July – 38 days post op
18th July – 41 days post op
11th August – 65 days post op
So there we go! Isn’t the body brilliant!!!
I hope this helps anyone who is facing this sort of healing process to know that it does get better.
Loce Sam xx
Don’t worry, I don’t have a mac and follow people around at night flashing my boobies. But I am a very proud flasher of my osteomy bag and here’s why…
I have had many comments about the images I share of my ileostomy bag, most of them are positive but I get the occasional one that says ‘why are you doing this? We don’t want to see it! Is nothing private any more? Won’t somebody think of the children?!!!’
OK, I may have made the last one up! But the point is that people do seem offended by the fact that I happily flash my bag, and these comments always seem to come from a person in the position of priviledge who have never had to face the scary event of surgery to remove your bowel and being fitted with a colostomy or ileostomy bag.
I remember sitting in a hospital bed, having just been told that I had to have surgery and they were going to remove my entire large intestine and I would have a stoma, they were going to give me an ileostomy bag and I was in tears. I was terrified, I couldn’t imagine how my life would be afterwards and though I was in part relieved to see an end to the severe and excrutiating pain, diarrhoea, accidents and misery of ulcerative colitis, I was also devastated.
I thought my life would be over, how would I ever feel beautiful or sexy again? What would my husband think of my new body? Would I ever wear a bikini again? Would my new body inspire disgust from others? Would I be able to love myself? I sat in bed weeping and I felt so lonely.
I googled ostomy bags and it came up with frightening, medical images of sick, old people in bed wearing huge bags on their stomachs looking sad and frail. And I felt numb. Was this the end of life as I knew it? This was in 2013 and there were no UK bloggers talking about this, no one sharing their images of a happy life, no positive, joyful photos, just misery and illness.
And that is why I started this blog. And that is why I am proud to flash my bag.
You see, though life can still be tough now, my ostomy bag changed my life for the better in so many ways, it gave me back a sense of control over my body, it made me feel well again, it stopped the pain and the isolation that 9 years of ulcerative colitis had caused. And once I had the surgery, I realised that rather than fear and sadness, when I looked at my bag and my body I felt pride! I felt strong and powerful, I felt like I had dealt with a huge surgery and my body was still standing.
I realised that I never wanted another person to sit alone, frightened and crying in a hospital bed, wondering what their life would hold for them with a stoma. I wanted to be the image that came up when they googled that showed them happiness, a fresh start, a normal life, damn it an EXTRAORDINARY life!
I wanted to be a small ray of light in an otherwise frightening time that could show someone that life with an ostomy bag is a positive and wonderful thing. That they could be what they wanted to be with their bag, that it wasn’t something to be feared or disgusted by, but to be proud of.
I wanted to show the world that my ostomy bag saved my life and that I am proud of it and myself.
I wanted to show that I can feel beautiful, sexy, strong, powerful and like ME.
I will never stop flashing my bag because every time I do, I get messages from people thanking me, saying that it helps to see others with a bag, that it inspires them to be proud of their bodies, that even if they don’t want to show their own bag, that they share my images to explain to their friends and family what they have.
No, of course not! It is a totally private and personal decision, I am happy to flash my bag but that doesn’t mean that everyone should. I hope that showing my bag off will help those people who want to wear a bikini on a beach to do it with pride, to show them not to be scared of being themselves. But some people are very private and don’t want to have their ostomy bag on show and their privacy is as important as my desire to flash mine.
The stigma around talking about poo is part of day to day life, generally if we talk about toilet habits, it is done by making fun about it. We find it hard to have an honest and open conversation about our bowels and that needs to change. This fear of talking bums stops people from accessing medical help when they have bowel issues, it stops them from asking for help and that can have a hugely negative effect on our health.
The aim of my blog has always been to help others, to stop poo being taboo and to raise awareness of IBD, Crohns, Colitis, Ostomy bags and invisible impairments as a whole. If I have to continue flashing this scarred body of mine and showing off my ostomy bag to keep the conversation going then I will do this till the day I die.
I am a flasher and proud!
Love Sam xx
When I first had a stoma, the nurse told me that lots of people name theirs and it helps them to come to terms with it. I believe I wanted to tell her to f**k off, though I held my tongue. I just wasn’t ready to have that conversation.
I am comfortable with my stoma now, but at the time I remember being laid in HDU and not wanting to look down. I just didn’t want to see it or deal with it, it was such a huge ordeal to know that my body had changed so much. I remember laying in the bed and turning my head to the window, counting the slats of the blinds as they checked my wounds and changed my bag. I couldn’t look…
When I did, I was shocked. A stoma (when we are talking about an ileostomy or colostomy) is the end of your bowel that is pulled through your abdomen wall and stitched to the skin. It looks like a red or pink, wet, soft lump with a hole in the middle. So it is a big shock when you see your insides on the outside for the first time!
But over time, I got used to it quite quickly, I realised it was my life line, that it had saved my life and it was nothing to fear. It was part of my body and I started to understand that people name their stomas as part of the idea of coming to terms with their new body. Naming it can feel like you are welcoming it into your life.
I named my stoma Barack Ostoma… I wanted something funny but also quite grand! I then had jpouch surgery and so Barack left office, as it were. After 18 months of chronic pouchitis, I had stoma number two. I only have one stoma now, it is a permanent ileostomy, but in numbers I have had, it is the second one. This one is called Babadook, due to the weird creaking, farting noises it sometimes makes and the fact that baba and dooky are terms for poo, so it seemed to make sense.
So my question is, what, if anything do you call your stoma, and why did you want to name it or why did you choose not to name it.
Sam xx
If you follow me on Facebook and twitter, you may have seen that I have had a blockage in my stomach for the past couple of days. It started with crampy stomach ache and a realisation that my ileostomy bag had not been filling as it usually does, it was very empty and the stuff coming out was watery and dark. I was sweating and nauseous and feeling terrible.
I have had this before and recognised the symptoms of a blockage (or bowel obstruction). This is when something is preventing stool from passing through the intestine in the normal way. IA Support uses an analogy of a garden hose to help explain what is happening when you have a bowel obstruction.
“If you stand on a garden hose, water cannot pass through it. The tap keeps pumping water into the hose but it cannot get past your shoe. Soon, as the pressure from the tap continues to pump the water, the portion of the hose above your shoe starts to expand and swell up with the backed up water. If you do not remove your shoe, the pressure inside the garden hose will cause it to break open and leak. The same principles apply to your intestine.”
Signs of a blockage can include
You can find out more on their site, I knew I didn’t have a full blockage as I was passing some stool but I mentioned it to my stoma nurse who reminded me of how to relieve symptoms at home and so I thought I would share them here. (Via IASupport)
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DO |
DON’T |
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A bowel obstruction or blockage is a serious condition and you should not ignore it as it can sometimes turn into an emergency situation. Always get in touch with your stoma nurse if you can’t relieve the symptoms or if you are in a lot of pain, passing no stool at all and vomiting.
I am happy to say that my blockage passed at home with me using the above treatment, plenty of fluids, hot tea, heat pads, a bath and gentle tummy massage. Though now I am left a bit exhausted and drained, I was wondering why but I think it may because I haven’t been absorbing all the vitamins and minerals over the past couple of days.
I know we all like to have a google but just remember that the internet is not the best place for medical advice, speak to your stoma nurse or doctor and listen to your body.
Sam xx
One of the most common questions I get sent to me is about what clothes to wear when you have an ostomy. People asking if they can ever wear ‘normal’ clothes again, how to hide your bag, what underwear is best and how to still feel like themselves.
My answer is usually that you can wear anything you like! There are no hard and fast rules, it is about personal preference, some people don’t mind if you can see the bag, others want to mask it. I think the only thing that affects my clothes choices is comfort. I want to wear things that I am comfortable in and feel amazing. Amazing for me feels like wearing something that I love, that also fits well around my stoma and means I can go about my day without paying too much attention to my ostomy bag.
Now I am a permanent ostomate and will have this bag forever, it has meant a reshuffle of my wardrobe and some new clothes. I started by going through all my current clothes and chucking out EVERYTHING that doesn’t fit well around my stoma, this was pretty depressing and I have to admit, I had a little cry.
It all felt so FINAL to give away my favourite trousers. But those fave trews have a waistband that sit directly on top of my stoma, I tried wiggling them lower or pulling them over the top but neither worked. I had to accept that my stoma ain’t moving so what is the point in keeping the trousers?
Then I went shopping! YEY! Last time I had a stoma, I found that maternity trousers are awesome for life with an ostomy, especially those that have the stretchy panel attached to them and so I hit H&M and bought two pairs of maternity jeans and a pair of maternity leggings. I also find that a slightly longer than usual top makes me feel tons more comfortable and so searched for tops that made me happy.
So this was my going shopping outfit. A long stripy skirt, the waistband sits above my stoma and a longer black top with a scarf. It’s super comfy without being too casual and if you’re concerned about showing the bulge, the scarf hides everything.
Top – George at Asda
Skirt and scarf – Primark
Onto my bought items, this is maternity jeans and a tight fitting top that is just a bit longer than usual. I don’t mind if the outline of my bag shows and I am happy to wear tight fitting clothes. I know some people are more self conscious but I find that no one cares! And if anyone notices, I am happy to tell them about my bag.
You can see the panel and wear it sits with regard to my ileostomy bag. I love that it keeps everything tucked against my body and it feels safe. You can also see it from the side.
MAMA super skinny jeans – H&M £24.99
Conscious Long Sleeve Jersey top – H&M £7.99
I also went in for some maternity black leggings. Leggings are great for going under anything and these make me feel the bag is kept tucked against my body so when I wear a dress or top over, it’s not flapping about!
Outfit three was more maternity jeans, black this time and a loose fitting shirt. I love this outfit as I just feel like myself in it, I can see myself wearing it around the house or going out with the kids. It’s so comfortable too, I hate wearing joggers, I feel like Waynetta Slob in them and so a comfy, relaxed outfit that I feel like ‘me’ in is just brill. Again, it’s easy to shove a scarf over for those times when your bag fills up instantly and you look like you’re smuggling a bag of potatoes…
Scarf Primark – £3
This next outfit made me smile, it is a dress I bought pre surgery and I wondered how it would fit me now. I teamed it with my new black maternity jeans and pumps and I felt like me again!
So there we go, my first post ostomy shopping trip. It may just seem like a couple of pairs of jeans but to me it was the start of getting back to feeling like myself. I have spent weeks recovering in pyjamas and to now be back in ‘human’ clothes feels amazing.
I really enjoyed sharing my clothes ideas and after receiving a few emails recently from women who feel they can’t wear what they want I think I may share some other fashion posts again. I am a size 16, 34 year old woman, I know I am no clothes horse but I love fashion and I want other people with an ostomy to know that no matter your condition, your size or your age, you can wear whatever the f**k you want. Fashion is about fun and expression, the only person it matters to whether your clothes look good is you.
Your style and fashion with an ostomy may have to adapt, you might have to think twice about where that waistband sits, but it is not the end of the world and you can still look and feel like yourself again. You may want to flaunt your bag, hide it or care neither way, but there is a style of clothes that will fit you and make you feel awesome again. You just need to look for it.
Sam xx
I have had some issues with my Stoma post surgery. The stitches came away from the skin leaving me with a large hole into my stomach.
It was bloody awful to look at, it was really nasty and made me queasy. I documented the healing process though as in the beginning I couldn’t imagine it getting any better.
Be warned that the images in this post are really quite graphic. If you don’t like images of open wounds and stomas, I really wouldn’t bother with the rest of this post!
The reason for this post is not to shock but to teach and comfort anyone who has had this happen to them, when it first happened to me, I panicked and was really upset and terrified. I could see into my body!! I spoke to my stoma nurse (and I 100% recommend that you speak to a medical professional if you are having any issues!!!) and she told me that it wasn’t that rare, that I needn’t be too concerned and that with treatment, it would soon be sorted.
I used a paste to fill in the hole, it was the Convatec Stomahesive paste that does really sting for the first few seconds when you apply it, but it does the job. It fills the hole so poo can’t get in and then heals it from the inside out.
Apart from the obvious need to heal the hole, what is important is that when you have a would like this, it stops your bags from sticking properly and when you don’t have a well fitting bag, you get extremely sore, wet skin which in turn, further stops your bag from fitting… It is a vicious circle that is miserable as if you don’t have a well fitting bag, you get leaks and leaks stop you from living a normal life.
I feel I have given enough warnings now, the photographs below could be upsetting if you don’t like seeing inside a body!! So scroll down if you want to see the healing process and I really hope it helps.
*FINAL WARNING*
Day 1 – 15th January – the stoma has come away from the skin. You can see the stitches still surrounding my skin.
Day 3 – 17th January – you can see it has got worse here, this is before any treatment. You can see right inside here!
Day 5 – 19th January – I had been using the Convatec Powder but it wasn’t really helping.
Day 7 – 20th January – it was really bad here, though the wound is starting to heal from the inside, you can see how my bags haven’t been sealing properly and therefore the skin around my stoma is blistering and burning. This is from my very acidic poo getting on my skin and burning away at it.
Day 8 – 21st January – still really bad! Those open burns and blisters are extremely painful. I saw my stoma nurse on this day and she wasn’t happy with the powder treatment and started me on the paste.
Day 11 – 24th January- after just three days using the paste, you can see the VAST improvement. The wound is healing and you can see that my skin is healing too. The paste goes around the stoma and fills in the hole, it means no poo can get on my skin. You can also see that the last of my stitches have dissolved or come out.
Day 14 – 27th January – my skin is almost completely healed after 6 days using the paste and you can see that the wound is almost completely closed.
Day 21 – 3rd Feb – after another week using the paste, my skin is healed and the wound is well on it’s way to being filled and healed!
Day 23 – 5th Feb – another two days and it is pretty much there!
Day 29 – 11th Feb – the wound is completely healed though my skin is still slightly discoloured. You can see how well healed the rest of my skin is as my bag is fitting perfectly and so I am having no seepage or leaks.
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So there we go, that was my process from wound opening to healing. As I said, I have shared these photos and this post to help anyone going through skin problems and so I hope this has been of use. It can be extremely scary when things go wrong and I think it is good to see other people’s experiences so you can see there is light at the end of the tunnel.
Don’t forget that your stoma nurse is the best port of call for any stoma issues, they have seen it all before and will have treatments and solutions. My first treatment didn’t work for me but the second was brilliant, my stoma nurse told me there were more things to try if it didn’t work though.
I hope my openness helps everyone with a stoma to not worry, not be embarrassed and to speak out and get help if you have any issues. And for all you who just wanted a gawk, I hope you enjoyed it!!!
Sam xx
It has been four weeks now since the big op and I am beginning to get used to life with my ileostomy, it has been a bigger change than I thought. This is the second time that I have had a stoma, the first time was two years ago and then I went on to have a ‘reversal’ where I had a jpouch, when that failed, the decision was made for me to go back to have an ileostomy.
I really thought that as I have been through the shock of this surgery once already, that I would be better equipped to cope this time round. And in many ways I have, the knowledge of how to change my bags and care for my skin have meant that I have been able to dedicate my time to recovering from the operation rather than learning the technical side of life with a stoma. But it has still knocked my confidence.
I think it is the knowledge that this stoma is permanent, it is a bag for life. It was a necessary move but one that I wasn’t entirely happy with, and so I have had some negative feelings about my bag. I have felt self conscious, embarrassed and upset. I am trying to remember all the positive things to have a stoma, the health benefits, the lifestyle choices, but it is still a blow to be back with my bag and I have been struggling to come to terms with it.
Today I read about a Japanese art form called kintsukuroi, which means “to repair with gold”. When a ceramic pot or bowl breaks or cracks, it is put back together again using gold or silver to create something stronger and more beautiful than it was before.
It doesn’t hide or cover up the damage, it embraces the crack and acknowledges the history of the object whilst celebrating it’s imperfections and flaws. It is the art of understanding that the object is stronger and more beautiful because it has been broken.
What a gorgeous sentiment!
It got me thinking about my stoma and reminded me that how we see things comes from our attitude. I can choose to feel sad that my body is covered in scars, that it’s broken and damaged. Or I can think of myself like Kintsukoroi, I have been repaired with something precious and I am stronger and more beautiful for it.
I think I’ll choose the latter.
Sam xx
