Busting Stoma Myths!

So what is it like to pass poo through a stoma?

I love this question!  I think this is a great place to start. Being able to poo anywhere any time is great, having an Ileostomy my poo (sometimes referred to as output) is very liquid-based and I can lose a litre of it over the course of the day. I can literally poo sleeping, poo watching telly, poo cooking and cleaning also during festivals and concerts. I have a strange relationship with my stoma, some days I love her and some days I hate her. So, let’s get to the nitty-gritty stuff what is it like to poo with a stoma? It’s a strange one really, I don’t know how to describe it, most the time I don’t even know that I’m pooing. The only indication I get is when my bag is full, your output with an Ileostomy should be a consistency like soup. So it just trickled out throughout the course of the day along with wind of course. Even though I don’t fart out of my bottom any more I still pass wind but through my stoma. Sometimes the wind can be loud and noticeable and sometimes it’s silent, the beauty of it is people hear a noise and are waiting for smell that never appears. Although, on lazy days the wind can collect in the bag and it blows up like a balloon. With a stoma, you are advised not to eat fibrous food as it can cause blockage, this rules out most of the healthy foods, if I’m being naughty and eat a carvery I will spend the night feeling my stoma struggling to process the sin food. I used to love mushrooms, garlic mushrooms in particular but let me tell you they come out whole! Even though I swear I chewed and chewed! It felt like I was giving birth through my stoma, let me tell you that put me off mushrooms for life. I’ve had lots of fun with other foods also, no one tells you that strawberry laces turn your output bright red that was an embarrassing trip to A&E! I once had a piece of glittery wedding cake and let me tell you I shat glitter, see lad’s women really do poo glitter! The stoma itself has no sensation, you’d think having a piece of bowel pulled through the abdomen would be a pretty painful ordeal, the recovery is tough emotionally and physically over time when things settle stoma becomes painless. People fear touching stoma’s, I’ve seen nurses pause but let me tell you this there is nothing to be scared off! They are pink and have the same texture as your gums. They are moist and squidgy, some big some small, some protrude outwards and some invert. They vary, no two are the same that’s because everyone has different reasons for opting to have a stoma.

Are all stoma’s permanent?

No not all stomas are permanent! Although mine is, I had a temporary stoma for 3 years but further testing showed part of bowel was damaged beyond repair and a reversal wouldn’t have been safe. I opted to have my stoma made permanent, this meant having my rectum and anus removed. However, there are many health conditions that can lead to having a stoma, sometimes a stoma is needed temporarily to help diseased bowel heal or give the bowel a break. Sometimes having a stoma can be part of completing a complicated surgery, which is done in 3 or 4 parts. This surgery is called J pouch, I won’t bore you with the details but it’s very interesting and worth a read!

Can people smell/tell you’ve got a stoma?

I’ve found most people aren’t aware that I have a stoma unless I’ve told them and made them aware! I’ve had the luxury of being able to control who I tell! When I first had the surgery 4 years ago, I wasn’t confident and the last thing I wanted was people knowing I had a stoma. I was 18 and I just wanted to fit in. Years have passed and I’ve become passionate around raising awareness and advocating for people with stomas and disabilities. I’ve known people through my journey who’ve chosen to be discreet about their stoma only disclosing to close family and friends. The latest research suggests 1 in 500 people here in the UK have a stoma, you’ve probably walked past or been in the company of someone with a stoma and not even known! I frequently hear ‘you can’t even tell you’ve got a stoma’ or ‘you don’t look the type to have one’ although I’m sure these comments come from a good place they aren’t always appreciated because what does the ‘type’ look like? I’ve found being organised really helps me conceal my bag on days I don’t want to show it to the world, being on top of what food/drink you’ve consumed, aware of the bag filling up and being cautious of any leaks are key in helping the bag go unnoticed.

If you caught your stoma would it hurt?

No, the stoma its self would not hurt it has no sensation! Although, it is common for the stoma to bleed a little during cleaning or if the skin surrounding the stoma breaks down due to irritation. After having a stoma, we are advised to take extra care and precaution around preventing hernias as unfortunately a large percentage go on to develop hernias as a complication. We are advised to buy or get hernia support wear on prescription!

Can people with a stoma have sex?

Yes! Although it’s important to take your time and listen to your body. Following my first stoma surgery back in 2013 I was advised to refrain from sex for 4-6 weeks and up to 12 weeks following my latest surgery which was the removal of my rectum and anus. This it to give your body time to heal and regain your stamina. Having major bowel surgery can affect your sex life; many people have reported decline in self-esteem, vaginal dryness, vaginal pain, vagina feeling too tight, problems getting erect and maintaining an erection (due to nerve damage) and the role of removing the anus in its role during anal sex as barriers to sex since having stoma surgery. To achieve maximum pleasure many with a stoma experiment with products and sex positions, many found propping a pillow beneath a woman’s pelvis helped along with lubricants, stoma caps (a small cap used to put over the stoma in place of a bag during sexual activity) and crotch less knickers and intimacy wraps. However, not everyone wants to cover up their stoma bag during sex as they feel it gets in the way, so make sure it’s empty and go free! Yes, accidents can happen during sex, its happened to me on many occasions but it’s not stopped me having a healthy sex life! With a stoma, you can still have a healthy sex life may that be with a long-term partner or a one-night stand. Gay, straight, bisexual or trans! We want to feel sexy and enjoy sex like everyone else.

Does having a stoma affect pregnancy and fertility?

The stoma its self should not affect fertility but there may be underlying health problems which may make conceiving difficult. Following any pelvic surgery there is a risk off adhesions (problematic scar tissues) which can wrap around the reproductive system and make things difficult. If you have a history of chronic medical problems it is probably wise to discuss fertility and pregnancy with your medical team prior to conceiving this way they can assess your individual risks and make sure any medication is safe during this process. According to research if you have a colostomy you may be classed low risk whereas if you have an ileostomy the risk may be higher due to the risk of pressure build up; it’s not uncommon to plan for a C-section. During pregnancy, the stoma may change size, shape and swell.

What happens to your anus and rectum if you have an ileostomy?

In the stoma world if you have your anus and rectum removed your known to have a ‘Barbie butt’ this comes from Barbie dolls having no anus’s. When you have your anus and rectum removed, the surgeons use the skin from the bum cheeks and in some cases skin grafts of the abdomen to fill the gap or where the bum hole used to be, eventually this skin grows over and voids the gap. I had this surgery not too long ago and honestly, it’s as painful as it sounds. Imagine the pain, you use your bottom for everything from sitting, standing and core strength. The wound takes a long time to heal, ensuring you keep it clean and dry. It’s not as easy as it sounds because your bum is naturally sweaty and us ladies dribble bits of urine in that area when we pee. For a long time, it felt tight like anytime I’d move I felt as though it was going to split and the pressure like a vacuum. I experienced constant kidney infections and gynecological issues; the rectum supports the vaginal wall once its removed it can affect the vaginal structure. Phantom rectum is something I’m left to deal with, this is where I feel like I’m about to explode with poo but I know nothing can come out because its sewn up. However, plenty of people opt to keep their stomas permanent but choose not to have their rectum and anus removed; again, it totally depends on the underlying health conditions. Leaving the rectum in but not in use can lead to discomfort and may develop disuse colitis and inflammation and bleeding. Although the rectum may not be in use for poo with a stoma it is common to pass old stools and mucous this is one of the many reasons many chose to have the rectum removed.

Do you have to take more precautions in your day to day life?

Those who know me well will know I’m known for carrying round a handbag which resembles a suitcase! Why you might ask? Because I find the key to ‘normal’ life with a stoma is being organised. In my bag I carry ostomy supplies, hygiene items (Soap, wipes and sanitizer), change of clothes and a set of my medication. My other health conditions are the ones that cause me the problems and effect my quality of life. I find if I watch what I eat whilst I’m out and cautious so I don’t cause a blockage, have my pain and fatigue under control and know where the toilets are I’m ready to fight the day!

Can you live your life with a stoma? Everyone’s experience with a stoma is so unique not 2 peoples experience is the same. Many find it liberating and others really struggle to accept it. There is no ideal way to living your life with a stoma. However, with my stoma I’ve seen the world, studied a nursing degree, met the most amazing friends and met the love of my life; the reason I get out of bed every morning and fight the demons of the day, someone who make me love, live and laugh! If it wasn’t for my stoma and my other health conditions and disabilities I wouldn’t have this passion to fight the stigma and campaign for awareness. I wouldn’t be here without my stoma, she’s saved my life so many times! I love her and love the person she’s crafted me in to. I know not everyone has a good relationship with their stoma but that’s okay too, after a major change we go through the cycle of grief and it just depends where were up to with that, we must grieve for the person we once were and accept the person we now are.

Can you keep up with the latest fashion trends?

Yes! I find it easier to wear dresses and skirts as the loose fitting is easier on my bag and doesn’t tend to squash and pull on it, I can and do wear jeans and pants you just need to be more observant. There are some brilliant companies who take pride in creating underwear suitable for people with stomas and to compliment their body, smoothing out outlines from the bag and helping conceal the bag filling up. There is now a market opening for designing swimwear for people with stoma’s as currently there are 2 options; 1) High waisted bottoms 2) Let it all hang out unhidden I look forward to seeing the advances in fashioned aimed towards those who have disabilities.

Can you go on a plane with a stoma?

Yes! I’ve been on a plane with my stoma plenty of times, there’s a myth out there that the air pressure will make the bag explode this is NOT the case.

Can you go swimming with a stoma?

Yes! I’ve been in pools, Jacuzzis and hot tubs without any problems! I took extra caution to ensure the pool water didn’t break down the adhesive. There are some excellent products you can use to make sure it doesn’t break down and you get maximum use out of the bag. People do stare at me with my bag out on holiday, I try not to get to angry or upset they either are intrigued by me or they are uneducated about stomas and stoma care.

So what is it like to pass poo through a stoma?

I love this question!  I think this is a great place to start. Being able to poo anywhere any time is great, having an Ileostomy my poo (sometimes referred to as output) is very liquid-based and I can lose a litre of it over the course of the day. I can literally poo sleeping, poo watching telly, poo cooking and cleaning also during festivals and concerts. I have a strange relationship with my stoma, some days I love her and some days I hate her. So, let’s get to the nitty-gritty stuff what is it like to poo with a stoma? It’s a strange one really, I don’t know how to describe it, most the time I don’t even know that I’m pooing. The only indication I get is when my bag is full, your output with an Ileostomy should be a consistency like soup. So it just trickled out throughout the course of the day along with wind of course. Even though I don’t fart out of my bottom any more I still pass wind but through my stoma. Sometimes the wind can be loud and noticeable and sometimes it’s silent, the beauty of it is people hear a noise and are waiting for smell that never appears. Although, on lazy days the wind can collect in the bag and it blows up like a balloon. With a stoma, you are advised not to eat fibrous food as it can cause blockage, this rules out most of the healthy foods, if I’m being naughty and eat a carvery I will spend the night feeling my stoma struggling to process the sin food. I used to love mushrooms, garlic mushrooms in particular but let me tell you they come out whole! Even though I swear I chewed and chewed! It felt like I was giving birth through my stoma, let me tell you that put me off mushrooms for life. I’ve had lots of fun with other foods also, no one tells you that strawberry laces turn your output bright red that was an embarrassing trip to A&E! I once had a piece of glittery wedding cake and let me tell you I shat glitter, see lad’s women really do poo glitter! The stoma itself has no sensation, you’d think having a piece of bowel pulled through the abdomen would be a pretty painful ordeal, the recovery is tough emotionally and physically over time when things settle stoma becomes painless. People fear touching stoma’s, I’ve seen nurses pause but let me tell you this there is nothing to be scared off! They are pink and have the same texture as your gums. They are moist and squidgy, some big some small, some protrude outwards and some invert. They vary, no two are the same that’s because everyone has different reasons for opting to have a stoma.

Are all stoma’s permanent?

No not all stomas are permanent! Although mine is, I had a temporary stoma for 3 years but further testing showed part of bowel was damaged beyond repair and a reversal wouldn’t have been safe. I opted to have my stoma made permanent, this meant having my rectum and anus removed. However, there are many health conditions that can lead to having a stoma, sometimes a stoma is needed temporarily to help diseased bowel heal or give the bowel a break. Sometimes having a stoma can be part of completing a complicated surgery, which is done in 3 or 4 parts. This surgery is called J pouch, I won’t bore you with the details but it’s very interesting and worth a read!

Can people smell/tell you’ve got a stoma?

I’ve found most people aren’t aware that I have a stoma unless I’ve told them and made them aware! I’ve had the luxury of being able to control who I tell! When I first had the surgery 4 years ago, I wasn’t confident and the last thing I wanted was people knowing I had a stoma. I was 18 and I just wanted to fit in. Years have passed and I’ve become passionate around raising awareness and advocating for people with stomas and disabilities. I’ve known people through my journey who’ve chosen to be discreet about their stoma only disclosing to close family and friends. The latest research suggests 1 in 500 people here in the UK have a stoma, you’ve probably walked past or been in the company of someone with a stoma and not even known! I frequently hear ‘you can’t even tell you’ve got a stoma’ or ‘you don’t look the type to have one’ although I’m sure these comments come from a good place they aren’t always appreciated because what does the ‘type’ look like? I’ve found being organised really helps me conceal my bag on days I don’t want to show it to the world, being on top of what food/drink you’ve consumed, aware of the bag filling up and being cautious of any leaks are key in helping the bag go unnoticed.

If you caught your stoma would it hurt?

No, the stoma its self would not hurt it has no sensation! Although, it is common for the stoma to bleed a little during cleaning or if the skin surrounding the stoma breaks down due to irritation. After having a stoma, we are advised to take extra care and precaution around preventing hernias as unfortunately a large percentage go on to develop hernias as a complication. We are advised to buy or get hernia support wear on prescription!

Can people with a stoma have sex?

Yes! Although it’s important to take your time and listen to your body. Following my first stoma surgery back in 2013 I was advised to refrain from sex for 4-6 weeks and up to 12 weeks following my latest surgery which was the removal of my rectum and anus. This it to give your body time to heal and regain your stamina. Having major bowel surgery can affect your sex life; many people have reported decline in self-esteem, vaginal dryness, vaginal pain, vagina feeling too tight, problems getting erect and maintaining an erection (due to nerve damage) and the role of removing the anus in its role during anal sex as barriers to sex since having stoma surgery. To achieve maximum pleasure many with a stoma experiment with products and sex positions, many found propping a pillow beneath a woman’s pelvis helped along with lubricants, stoma caps (a small cap used to put over the stoma in place of a bag during sexual activity) and crotch less knickers and intimacy wraps. However, not everyone wants to cover up their stoma bag during sex as they feel it gets in the way, so make sure it’s empty and go free! Yes, accidents can happen during sex, its happened to me on many occasions but it’s not stopped me having a healthy sex life! With a stoma, you can still have a healthy sex life may that be with a long-term partner or a one-night stand. Gay, straight, bisexual or trans! We want to feel sexy and enjoy sex like everyone else.

Does having a stoma affect pregnancy and fertility?

The stoma its self should not affect fertility but there may be underlying health problems which may make conceiving difficult. Following any pelvic surgery there is a risk off adhesions (problematic scar tissues) which can wrap around the reproductive system and make things difficult. If you have a history of chronic medical problems it is probably wise to discuss fertility and pregnancy with your medical team prior to conceiving this way they can assess your individual risks and make sure any medication is safe during this process. According to research if you have a colostomy you may be classed low risk whereas if you have an ileostomy the risk may be higher due to the risk of pressure build up; it’s not uncommon to plan for a C-section. During pregnancy, the stoma may change size, shape and swell.

What happens to your anus and rectum if you have an ileostomy?

In the stoma world if you have your anus and rectum removed your known to have a ‘Barbie butt’ this comes from Barbie dolls having no anus’s. When you have your anus and rectum removed, the surgeons use the skin from the bum cheeks and in some cases skin grafts of the abdomen to fill the gap or where the bum hole used to be, eventually this skin grows over and voids the gap. I had this surgery not too long ago and honestly, it’s as painful as it sounds. Imagine the pain, you use your bottom for everything from sitting, standing and core strength. The wound takes a long time to heal, ensuring you keep it clean and dry. It’s not as easy as it sounds because your bum is naturally sweaty and us ladies dribble bits of urine in that area when we pee. For a long time, it felt tight like anytime I’d move I felt as though it was going to split and the pressure like a vacuum. I experienced constant kidney infections and gynecological issues; the rectum supports the vaginal wall once its removed it can affect the vaginal structure. Phantom rectum is something I’m left to deal with, this is where I feel like I’m about to explode with poo but I know nothing can come out because its sewn up. However, plenty of people opt to keep their stomas permanent but choose not to have their rectum and anus removed; again, it totally depends on the underlying health conditions. Leaving the rectum in but not in use can lead to discomfort and may develop disuse colitis and inflammation and bleeding. Although the rectum may not be in use for poo with a stoma it is common to pass old stools and mucous this is one of the many reasons many chose to have the rectum removed.

Do you have to take more precautions in your day to day life?

Those who know me well will know I’m known for carrying round a handbag which resembles a suitcase! Why you might ask? Because I find the key to ‘normal’ life with a stoma is being organised. In my bag I carry ostomy supplies, hygiene items (Soap, wipes and sanitizer), change of clothes and a set of my medication. My other health conditions are the ones that cause me the problems and effect my quality of life. I find if I watch what I eat whilst I’m out and cautious so I don’t cause a blockage, have my pain and fatigue under control and know where the toilets are I’m ready to fight the day!

Can you live your life with a stoma? Everyone’s experience with a stoma is so unique not 2 peoples experience is the same. Many find it liberating and others really struggle to accept it. There is no ideal way to living your life with a stoma. However, with my stoma I’ve seen the world, studied a nursing degree, met the most amazing friends and met the love of my life; the reason I get out of bed every morning and fight the demons of the day, someone who make me love, live and laugh! If it wasn’t for my stoma and my other health conditions and disabilities I wouldn’t have this passion to fight the stigma and campaign for awareness. I wouldn’t be here without my stoma, she’s saved my life so many times! I love her and love the person she’s crafted me in to. I know not everyone has a good relationship with their stoma but that’s okay too, after a major change we go through the cycle of grief and it just depends where were up to with that, we must grieve for the person we once were and accept the person we now are.

Can you keep up with the latest fashion trends?

Yes! I find it easier to wear dresses and skirts as the loose fitting is easier on my bag and doesn’t tend to squash and pull on it, I can and do wear jeans and pants you just need to be more observant. There are some brilliant companies who take pride in creating underwear suitable for people with stomas and to compliment their body, smoothing out outlines from the bag and helping conceal the bag filling up. There is now a market opening for designing swimwear for people with stoma’s as currently there are 2 options; 1) High waisted bottoms 2) Let it all hang out unhidden I look forward to seeing the advances in fashioned aimed towards those who have disabilities.

Can you go on a plane with a stoma?

Yes! I’ve been on a plane with my stoma plenty of times, there’s a myth out there that the air pressure will make the bag explode this is NOT the case.

Can you go swimming with a stoma?

Yes! I’ve been in pools, Jacuzzis and hot tubs without any problems! I took extra caution to ensure the pool water didn’t break down the adhesive. There are some excellent products you can use to make sure it doesn’t break down and you get maximum use out of the bag. People do stare at me with my bag out on holiday, I try not to get to angry or upset they either are intrigued by me or they are uneducated about stomas and stoma care.

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