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]]>Hey my beautiful friends,
I have missed you all, can you believe it is 2024 and March already! Three months in and it has flown by. I have so much to catch you up on.
Before I begin, I just want to say that make sure you know 2024 is the year where you put yourself first and push yourself. Goodbye to putting things off and hello to just doing it. TRUST me, I know all about the fear holding me back and putting things off. I vow to make a change on this because put it this way our goals are not going to be just given to us.
So, an update to my health, I know when we last spoke, I had been in hospital yet again for a relapse. Well, I have seen my surgeon at the start of the month and another dreaded colonoscopy has been scheduled in to see if there are any further adhesions. I am hoping not but, considering the last few relapses I have had who knows. I have defiantly been so much more mindful when it comes to food. I meal prep everything which I find is so much better for me because I get so tired, this means I do not have to worry about cooking anything and can just pop a meal I have prepped for the week in the microwave. I also had an appointment with my dietician who has told me to cut out sweeteners for a while and see how my bloating goes with this. I am not going to lie, yes it has made a slight change but not much, so I guess when it comes to my bloated belly it is what it is.
Back in December I filmed an educational video with Channel 4 for the UK government. This was to help raise more awareness for IBD. I participated in this alongside two fellow IBD friends, both males, one had both Crohn Colitis and a stoma, the other Colitis with no surgery and myself, Crohn’s disease, and a stoma reversal. The video was a success and I honestly think we gelled well together and helped raise a lot of awareness. Of course, as with everything you do you will always get negative comments but reaching a wider audience to potentially help others outweighs that massively. Some commented about IBD is so much more than just a ‘poop’ problem. I agree it 10000% is but the point of this video was to help raise awareness on accessibility to toilets and for people not to judge a book by its cover, on top of all the other side effects that come with IBD which can leave us bed bound for days or at worst cases fighting for our lives, having to deal with judgement from others when we need to use a disabled toilet just contributes to our stress, I have to admit, I get so nervous using one or even showing my disabled rail card. I find myself explaining to a stranger who I show my card to that I have Crohn’s disease. This is not even any of their business and I should not have to explain myself, but I do because I feel they will judge me because by eye I do not ‘look’ disabled. So, I do think the point of this video was very valid because the more people aware of this can help us be less nervous to ask to use a toilet facility when out and about. This will also help make our journeys and lives less stressful.
I have attached the link to the video here and I do hope you enjoy it.
To finish off a little update on my life so far as a dance showgirl instructor and PT. I love it dearly however, I have found sometimes it very hard to teach and have struggled and not been able to dance my class. Luckily my regular ladies know the routines so can lead the way. My PT clients are amazing, and it feels so lovely when they let me know I have helped them get stronger and fitter. Therefore, I do what I do to help boost confidence and show you can still get strong with IBD and the importance of this.
I hope you enjoyed our catch up as much as I did. I will speak to you again in the best part of the year June, the halfway mark of 2024 and the month of sunshine which means I am happy every single day.
Lots of love and look after yourself
Natalie-Amber. X x x
Natalie-Amber | @natalie_amber1 x
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]]>The post What to wear with a stoma? appeared first on Pelican Healthcare.
]]>Hello wonderful pelican readers! It’s been a while…
My work/life balance has been super, crazy busy recently but something that hasn’t changed is the thought of what to wear whilst living with a ostomy!
I had an image in my mind before my stoma surgery that I would have to buy a completely new wardrobe and also that I would be living in baggy clothes for the rest of my life. I was totally wrong… and it’s really surprising how many outfits that I wore previously look absolutely fine!
It will be three years with my stoma this year so I have found a few favourites that look great but are also super comfortable! Here’s my top items
An important reminder that the way we dress and how we feel about the way we look certainly starts within; so it’s really important to give yourself time to heal and feel confident in your new body.
Once you are accepting your stoma, what to wear will automatically become much easier and should become more fun!
Lots of love!
Charlotte xxx
@char.crohnsftwilson
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]]>I cannot believe it’s been a year. A whole year. 365 days of stoma life.
Looking back, I’ve come a long way, in the first few weeks I couldn’t shower myself, walk, drive or even look at my stoma, and definitely couldn’t change my own bag. I feel so sad for that person, I wish I could have had an insight into what was to come. It hasn’t been easy, I’m not one to sugarcoat the situation. It’s been hard, and I have cried a river over the past year. But there has been good times, I’ve met some incredible people, I’ve helped others, I’ve done a podcast, I’m training for the marathon, I’ve been on holiday, I’ve held a quiz night to raise money for crohns and colitis, and I’ve shouted from the rooftops about stoma life. The best thing…I have found this wonderful little corner of instagram where people lift each other up and take time to talk and help just because we are all in the same boat.
It sounds so cliche but this has changed me, something I sometimes saw as a negative but ultimately I am stronger than I ever could have thought.
I’ve found places that make me feel safe and I have found people I can confide in.
I have no idea what the second year of stoma life has in store, but I’m sure it’ll be full of ups and downs (but let’s hope for more ups)
Happy birthday Oma, on to year two…let’s see what you’ve got.
Love Nikki and my sticky out Oma.
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Preparing for a newborn to have stoma surgery is not a position any parent/carer wants to be in. Having notice is awful enough, as an emergency even more devastating. Unfortunately, at the time of typing this I find myself being told to expect the imminent birth of my second son to mean stoma surgery soon after birth. Genetic testing has led to this for the condition Hirschsprungs Disease. To find out more of what this is, and how it results in stoma surgery can be found here.
Support network
Prepare your loved ones with the news. This is where you need to decide how much or how little you want to tell them. Be sensitive to how they may react. It may be too much for them, and you don’t want to be worrying about supporting them when it is you that is living in the reality of it. It may be that you want to keep it to a very close circle of people, or you may feel you want to share it to a wider group. There is no right or wrong with this. Whatever option gives you the support you need, and alleviates any pressure or anxiety is what’s best. Protecting your own mental health, and being able to share with others takes courage and strength. Never underestimate that. I made the decision to share our journey to support others, as I couldn’t find much to take comfort from myself. I have received lots of inbox messages from anxious parents/carers, and hope that I have helped in some way so those individuals know they are not alone.
Clothing
When shopping for baby clothes the options have never been so splendid! So many beautiful things that you want to dress them in, but what you need to think about first and foremost is accessibility. All in one outfits that aren’t very giving are not appropriate for surgery, or soon after. For me, dungarees were a great option for my son as they were easily accessible with poppers on the top and bottom to access the stoma bag quickly. Clothing adorned in zips and poppers have been the focus for us, wanting to make sure we can access the stoma bag with minimal disruption to the baby. In the early days when we establish which stoma bag works for them, there may be multiple outfit changes day and night and leaks to go with it. We have been lucky to receive some wonderful gifts of clothing and second hand too which all helps to keep the costs down. Wearing their Sunday best will not be the focus in those early days!
Health care professionals
With a newborn there are so many variables to contend with, in terms of finding the right bag for them. Much like adults, the one you go home with may not be the one you need to use long term. If leaks start happening a lot and you have followed a stoma nurse’s advice, ensure you reach out and ask for alternatives. You should leave the hospital with contact details for who to reach out to. They are very busy people, with many hospitals not even having dedicated paediatric stoma care nurses as such. This means they are covering both paediatrics and adults. Don’t leave anything to chance, and if you have a question however big or small, make sure you ask as you may not get answers back straight away.
Home environment
Having your baby’s nursery ready for stoma bag changes before they get home will help you immensely. If you are having a c section, having everything above waist height will be advised as you shouldn’t be bending down. Having a changing space for nappies and bags with the products you need next to you is essential. You won’t be able to have cut bases ready for doing stoma bag changes until your first order arrives. The stoma nurses will send you home with enough to start off with, and an order will be placed to arrive when you get home. Check which supplier they use, and if you have good experience with a certain one ask if you can use them. For me, I have used Respond for my little man for 8 years, and myself for 5 years. I wouldn’t want to go with anyone else, and luckily for me it is the hospital’s go to choice! A carry case with enough supplies for a few bag changes is enough to start off with. Ensure you keep it regularly topped up and don’t leave anything to chance. It goes without saying, the same in the car is essential also.
Siblings
It is such an exciting time for siblings expecting the arrival of a new brother or sister. This can be teamed with anxiety and typical worries about how life will inevitably change. For babies that are born with a stay in intensive care planned, siblings should be prepared for what they may see. The intensive care environment is intense, clinical, and as far from a nursery as you can get. Your baby may be cannulated, have a feeding tube, and need support to breathe. Seeing this is distressing and upsetting for anyone, least of all children. We are fortunate that our hospital has sibling packs which provide activities to provide comfort and preparation for what siblings will see. There are two little teddies, one for the baby and one for the sibling, so they can have one each to keep each other company. Visiting is extremely limited in intensive care which may be difficult for siblings to accept when they just want to visit and spend time with your new addition. Lots of comfort, video calls and reassurance that it isn’t forever, and they can make up for it with lots of snuggles when they get home.
Distraction
Wherever your changing base is for nappies and stoma bag changes, when the newborn phase has passed and they are far more inquisitive and active, you will need ways to keep them from not moving away when you try and change their bag. Someone else may not always be on hand to help, and in the middle of the night when output is pouring out and they are wriggling, getting a bag on when you are sleep deprived is pure hell!! Having a mobile, lights on the ceiling, quiet soft music, comforters, or other distraction devices you have should be easily accessible and on stand by to help.
There is plenty more you could explore, but for now they are the basics. If this blog applies to you, I wish you all the best with your baby and their stoma care. Remember you aren’t alone x
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]]>The post A self love journey with a stoma appeared first on Pelican Healthcare.
]]>Embracing your body with a stoma is a ride filled with twists, turns, and unexpected challenges. I’ve been on this journey myself, and let me tell you, it’s been quite the adventure. Along the way, I’ve learned some valuable lessons that I’d love to share:
On my own journey, I’ve faced negative comments and hurtful remarks about my body with a stoma. But instead of letting them drag me down, I chose to rise above them. I decided to love myself unconditionally, despite what others may say or think. And let me tell you, it hasn’t been easy. This journey is filled with bumps and hurdles. But the outcome is worth it. The feeling of self-love and acceptance is unparalleled. So, if you’re struggling to embrace your body with a stoma, or even without, know that you’re not alone. Keep pushing forward, keep choosing love, and remember that you are worthy, just as you are.
Thank you for reading!
Ange (@thebaglife_) xx
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]]>The post Intimacy after stoma surgery appeared first on Pelican Healthcare.
]]>In my two decades of being diagnosed with crohns disease I have faced and had a lot of surgery. Ill be honest, Intimacy was not the first thing on my mind after stoma formation!! I was more focused on recovery.
First stoma
Things were pretty dire after my first stoma formation. As well as a stoma, I had an open wound, I was attached to a Vac machine for close to a year, I also had a hickman line for close to nine month.
It took a good two years for my open wound to close. Intimacy then was the last thing on my mind, I had a young baby to look after as well as recovering from a three month stint in hospital. It took me a long time to even feel remotely attractive. It was close to six months post operative that I attempted sex, I wasnt ready and I had to ask to stop!!! In time the Intimacy came back into play, due to the nature of the relationship with my ex, things never got back to “ normal “ as my stoma was considered repulsive and wasn’t spoken about.
Second stoma
After my stoma surgery in 2016, I was back to resuming sexual activity 3 weeks post operative and things were fine. I had a few issues following my surgery in a 2 year period, I have extensive scar tissue in my uterus and surrounding areas, this has caused things to be a bit tight on the inside,much to my partners detriment, lets just say something got ripped. We both learned after this and started using lubricants to help and to avoid permanent damage and mental scars for the both of us..
I do sometimes think that the bag kind of ruins the spontaneity , nothing quite beats Oh crap, I need to empty and having to do the quickest empty and hand wash you’ve either seen, I have to admit that it wasn’t an issue whilst in Paris but have to admit there are times when its more of a oh hey, I have emptied, Let’s Go….
Third stoma
Oh dear god, my third stoma was also attached to having my barbie butt surgery.
Me being rather psychotic thought sex 3 weeks post op was a fantastic idea (pain meds have a lot to answer for!). Honestly I shouldn’t have tried it, but I did and got a stern telling off from my recovery nurse as that was apparently the equivalent of brutality on my rather sensitive insides that close to surgery.
At the time I asked my nurse when would the right time to resume sexual activities be? She said she had never been asked and that she doesn’t know.
This for me was rather confusing, when is the right time? How do you know? What if my body is sending mixed signals?
Re-engaging after surgery
Everyone’s recovery period is different, there are no right or wrong ways of getting back to normal with your sexual habits.
It is perfectly normal to be nervous, for me it was pretty much the equivalent of it being my first time again.
Foremost you need to make sure that you are ready, there is no harm in saying no if things feel uncomfortable. Mood settings may make you more anxious as there is sometimes an expectation from having a romantic evening and what that ultimately leads to.
Warming up and getting used to things will help, being intimate does not just mean having sex, cuddles, kissing, massage and foreplay will all lead to you being in the right mood and frame of mind to be ready for penetrative sex.
It may take you a few attempts before getting to that point, if at any point it hurts or you are feeling uncomfortable, then stop and go back to what you were doing previously.
Intimacy post op for me
I have a pretty healthy sex life even though we have been together for 8 years it is something that we both enjoy and I feel it brings a closeness and intimacy to our relationship.
I have been having pain during and after sex, this is thanks to a rather large inclusion cyst that I am awaiting surgery for, I will also be having a hysterectomy having started chemical menopause at the back end of 2023. I have just adopted to positions that work for me at this current time.
The Modavi also helps me feel more attractive and the fold up function of the bag makes it less bulky and it doesn’t get in the way.
Should any of you have any female related questions you wish to ask then don’t hesitate to message me, nothing really daunts or scares me these days and I am pretty open and honest.
As always
Many thanks for reading
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]]>The post Learning to love my body after surgery appeared first on Pelican Healthcare.
]]>My body doesn’t look like a normal woman’s body in my eyes. I have stretch marks all over by tummy, pregnancy and yo-yo weight gain and weight loss thanks to Crohn’s disease, endometriosis and now a rather large inclusion cyst has wreaked its havoc and to me at this moment in time, my body is not my friend. I don’t feel intune with myself at all.
Learning to love myself
Pre-cyst I was happy and confident with where my weight was, I was so happy and comfortable with myself.
At this moment in time I’m not loving myself, I am spending a large amount of time in bed , on a lot of medication and currently going through chemical menopause.
I’m currently implementing self care twice a week where I pamper myself and have a bath, exfoliate, skin care regime and down time with essential oils. My husband has also been helping by using a massage gun on my back and shoulders after a hot bath.
Body confidence is such a fickle , we all have those small imperfections. Mine is a mass of stretch marks and some rather epic scarring.
My end thoughts
For me my ostomy doesn’t bother me, it’s the stretch marks and lack of stomach muscles. I have mesh holding in my innards so regardless of how fit and healthy I am, my stomach is still slightly rounded and rather solid thanks to scar tissue.
Body image is unique to each of us. We all have our own neurosis. There is no right or wrong way with stoma life.
As always
Many thanks for reading
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]]>The post Body acceptance and learning to love your body appeared first on Pelican Healthcare.
]]>In the month of love, the hot topic on socials is always body acceptance and learning to love your body. The term body acceptance is used so much, but shouldn’t be underestimated. Whether it’s Valentine’s Day or not, body acceptance is arguably the most challenging aspect of becoming an ostomate.
It is important to say that we all come to accept our bodies the most we possibly can, in different time scales. Unfortunately some never do. It isn’t to be taken lightly, and when you have had your surgery, there are so many things to get your head around practically that when you do find yourself standing in front of a mirror, your reaction may not be the one you thought you would have. You can be following all the ostomates in the world, have done your research and mentally prepared yourself, but still that first time you see your new body can be quite the shock. Surgery can also be done in an emergency, which for someone who has never heard of a stoma can be incredibly upsetting to wake up to.
For me, I had planned surgery with a few weeks notice at the start of 2020, but had a stoma previously as a baby, until I was 2 years old. At the time I had a 5 year old, who also had a stoma from birth and was caring for him. You could say I couldn’t have been more prepared if I tried, whilst also engaging with fellow ostomates through social media. Despite all this… I was shocked at how I reacted to my own stoma. I didn’t want to look at it, I couldn’t face emptying it. I completely underestimated how I would feel seeing it on my body when I had always supported and championed ostomates, and was looking forward to surgery and a new chance at life. What I take from my own experience is that you can not assume anything.
If you are struggling to accept what the new you looks like, try to focus on what it is doing for you in terms of its functionality. Major bowel surgery, or you may have had even more extensive surgery due to your medical condition, will have been done in the hope of improving your quality of life. What will you be able to do that you couldn’t before? What will be easier? What are the positives that can come from it? Don’t just think of it, write it down whether it be on a post it note or a journal. Keep it somewhere that can act as a reminder. If you are into your positive quotes and memes, create a Pinterest board, or a new photo album on your phone to refer to. There are apps you can use that can display a new positive quote each day on your phone home screen to act as a boost. Here are some recommendations:
Apple – http://tiny.cc/qvcuwz
Android – http://tiny.cc/1wcuwz
When you first have surgery it can be a struggle to find underwear that sits in the right place for you. Some can carry on wearing underwear that sits on your knicker line, but others find comfort and security in high waisted underwear. Waistbands are available to wear daily to conceal your bag, and are available with some health boards on prescription. Be sure to check with your ostomy supplier to see what they can offer. Respond offers a bespoke service where you can be measured and custom belts can be made for you, whether it be for everyday use, or more specific functions such as exercising.
Having the right appliance for you, that doesn’t create issues such as leaking and skin breaking down, can give you a lot of confidence making it that little easier in accepting your new body. If you do have the wrong appliance for you, it can breed resentment of your stoma and get you into a very negative place mentally. If you are getting issues regularly which are getting you down, don’t suffer in silence. Be sure to reach out to your stoma nurse or your ostomy appliance supplier. There are products coming out all the time which can act as a game changer. For example, I had a chat with the lovely Jo many years ago from Respond customer service, about my son’s output being incredibly high. With an ileostomy it didn’t matter what bag we were using, the leaks would keep coming with him losing four litres a day. I was informed of the product Absorb. These little magic capsules act as an absorption tool that you put in your pouch. They completely dissolve and absorb liquid, whilst reducing odour and noise. By solidifying your output from a watery consistency, to a more formed consistency, they remove the risk of watery output channeling from the peristomal site creating a leak.
Finally, surround yourself with people that raise you up and support you. Toxic positivity involves failing to recognise negative emotions, which can be just as damaging. There will be hard days, hard weeks, and we all have days where we don’t want to leave the house and face the world. It is important to feel all your emotions, let them flow through you like water. Feel them, and when ready to do so, let them go. Go out and grab life as much as you can. Go for the meal, go on holiday, bite the bullet and go on that date with the person you have liked for a while. Try as much as you can to not let your stoma stop you from living. Baby steps if you need to, and focus on that feeling of accomplishment when you have done something you couldn’t before your surgery.
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]]>The post How Do I Learn To Love My Body? Finding Beauty in My Scars appeared first on Pelican Healthcare.
]]>Today, I wanted to share something quite personal, my journey of self-love and acceptance after my stoma surgery. It’s been a mixture of vulnerability, strength, and a lot of new experiences.
Pre Stoma
Before my surgery, I’ll be honest, I was always a little hard on myself, especially about my tummy. Having UC, it felt no matter what I did, I always felt so bloated. My confidence was already at a low, and then it was time for surgery, which left me with scars and a stoma bag. At first, these changes were difficult to deal with.
A New Perspective
But you know what? As I started to heal physically, my perspective started to shift. Instead of looking at my scars in a negative way I started to think of them as a reminder for all that I had overcome. I used bio-oil twice a day for a few months, my scars started to fade, and this helped to boose my confidence too – they just became a part of me (would 10/10 recommend bio-oil to reduce scaring!!).
Sunshine & Poolside Revelations
There was this one day that really started to change things for me. I was on holiday, by the pool, bikini on and stoma bag out. And guess what? The sky didn’t fall. No one pointed or stared. The world kept spinning, and I kept smiling. That’s when it hit me – the only person who was really worried about all this was me. Don’t be afraid to be yourself, don’t let having a stoma bag stop you from wearing a bikini.
Self-Love & Stomas
I’ve come to not just accept but truly appreciate my stoma. It ultimately saved my life and has given me a new lease of life. There are so many things I can do now as a healthy 20-year-old that I could have never done before. Take running for example, I am currently training for a 1/2 marathon. I would have never dreamed of doing this when I had UC, I was too ill to do anything like this. If I’m ever having a bad day, I think back to when I was at my worst with UC and think how far I’ve come because of my stoma.
Heart-to-Heart Advice
If I could sit down and have a heart-to-heart with you, I’d say this: Look at what having a stoma has opened up for you. It’s a new chance at life, let’s not dwell on the negatives. Let’s celebrate all the amazing positives, shall we? And love our bodies <3
Signing Off with Love
I hope by sharing my story, I’m sending out a little bit of courage and positivity your way. Remember, we’re all beautifully unique, and every scar, every stoma, tells a story.
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]]>Dating with a stoma is arguably one of the more anxiety inducing aspects of post surgery. Even if you are in a serious relationship before and after your surgery, it can change things and it can take time to adapt and gain confidence in yourself again as your body changes. Whatever stage in your romantic life you are, there are ways to approach things, and research to be done to help the transition into stoma life.
Be open and honest
If you are in a relationship already, having frank and honest conversations about what to expect and how you feel is essential. It is hoped that you have a partner that is on the journey with you and fully supportive. I understand more than most what it is like to not have this in a previous relationship. If this does happen to you, it can certainly show you someone for who they really are and change things. But please believe me when I say you deserve all the love and acceptance in the world, whether you have a stoma or not. You are going through major surgery, a life changing thing, and the person you are with should be supportive and stand by you. If they can not, they are not meant for you. You deserve all that as a minimum.
When I started dating my partner, one of the first things I shared was my stoma story. It’s not exactly the easiest conversation to have. I shared with him my awareness Instagram profile, and remember feeling sick waiting for his reaction to it! But my thought process was that it is better to be open and honest from the start, so that it doesn’t become an issue or anxiety inducing for myself by hiding it. Thankfully this time I chose a very good egg, and he has been a dream about it all, and never made me feel anything other than normal. Despite my experience, it doesn’t mean you need to share anything you are not comfortable to do so, until you are ready to. There is no right or wrong way to navigate all this. What approach works for one person won’t for the next. Stay true to yourself, your boundaries, and take your time. If it is meant to be it will be.
Dress for you
Going on a date you want to look your best, and wear something that makes you feel a 10, which can be restrictive for some if you have a stoma bag, and in some cases multiple stoma bags. A snug fitting dress may not be for you, if you don’t feel comfortable with your bag showing through your clothes. Finding jeans or trousers to sit in the right place on your stomach, but also fit correctly at your bottom and legs can be a challenge. High waisted tights/leggings, layering, smock dresses and accessories can work well to help your bag not be on show. For some, seeing your bag through clothes is not a concern, but for others it is something that fills you with dread. Many ostomates share their outfits daily on the gram, if you search for hashtags such as ‘#ostomyfashion’. Lottie Duran who curates My Bloated Wardrobe has been a godsend to follow for me. Having IBS, Lottie shares hints and tips and lots of looks to copy. She is a ray of sunshine and a joy to have popped up on my feed. The only problem is you will want to buy everything she shares!
Being intimate
Being intimate with a stoma for the first time can be frightening, let’s not sugar coat it. It takes an incredibly confident person to crack on like nothing has changed! With the development of ostomy products in the last ten years, the most exciting for me has been the choice of different colours. For me the Pelican ModaVi is my bag of choice, and having the black option is key. It makes me feel confident, and is a vast contrast to the medical beige and greys that we know all too well. The outlets for draining and cleaning have become much simpler, allowing you to rest assured nothing is going to leak. Obviously, we all have leaks now and again which is more commonly due to human error or diet, rather than the bag itself. Ensure your bag is the right one for your skin, and if it doesn’t feel right or you are getting leaks regularly, contact your stoma nurse and sample different ones. Everyone has the right to have an appliance that works for them to feel secure.
To avoid my bag filling up at an inconvenient time, I always empty it when I use the bathroom to pee to avoid double the trips. I know alot of us do this, but some of you daredevils live life on the edge and wait for it to fill up! Do what works for your lifestyle, but by emptying little and often it can avoid the bag blowing up at the most inconvenient time!
Research the experience of others
Finally, have a look on social media where many ostomates share their dating stories, and on ostomy company websites where they publish blogs for ostomates. Pelican have many of us who have had different experiences and share them on their website. Lots of tips can be gained, and when reading through, I know for myself I take comfort in knowing my worries and anxieties are similar to others.
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