Valentine's Day is tomorrow & we wanted to re-share a blog post that Comfizz' Amy wrote for us before she worked for us.
Amy had a permanent ileostomy formed in 2011 due to severe Crohn's Disease and a large, benign tumour which nearly cost her her life. She is now married and a proud dog Mum!
Dating has been something that has always been a worry for me, even before I had my stoma surgery in 2011.Having Crohn’s Disease, frequent accidents where I couldn't get to the toilet, wind & a lot of pain meant that I never felt super confident with dating or intimacy, but it was something I always pushed past where I could because Crohn’s wasn’t going to take everything from me or leave me powerless, no matter how hard it tried.
Counting the comments on one handIt’s safe to say with having Bowel Disease then my stoma in 2011 that negative and nasty comments were something I worried about. I’m at the point now where nasty comments are thankfully rare and they rarely bother me although this is after making a conscious effort to not let it get to me as I’m only human. I am more than my illness and I am more than my stoma bag, but there are parts of me which I won’t be ashamed of anymore as I’ve spent enough time previously in my life feeling like they are both things I should hide all the time.
I have only experienced a handful of nasty or inappropriate comments related to my illness or stoma specifically and ironically, some of those came from someone with bowel disease. Sadly, you come across people in your life who are very insecure and will project their insecurities onto you to feel better about themselves. You have to remember that as much as it hurts at the time, it's more a reflection on them and not you. This goes for any element of life, not just in the stoma world.
We all sadly experience being hurt as human beings and negative treatment, but it’s how we overcome that & look after ourselves that matters. I’m a big believer in not tearing others down to build yourself up. Life has its trials as it is without being nasty and you never know what someone else is going through. It costs nothing to be kind & go easy on others. It costs nothing to lend a helping hand and your support either and could be the difference between what gets someone through a very hard time in their life.
Taking a leap into the unknownAfter surgery in 2011, I feared dating people who were not from the Inflammatory Bowel Disease (IBD) or stoma world. I worried I would not be accepted as a human being because I had a bag of poo on my stomach. News alert - everybody poos! How we poo is just different... & I say it's more hygienic anyway! When we pass wind, it's also contained until we choose to empty it or change it & it helps that there are things that you can use to help with the smell if it bothers us or affects our confidence when we do have to empty or change. Nobody's poo smells of roses, sadly! That's normal, no matter who you date.
I worried that nobody would want to be intimate with me or find me attractive or sexy because of how my body had changed. I worried that nobody would want to be seen on holiday with me on a beach. I also feared that I would find a connection with someone then when I told them I have a stoma bag that it would be the thing that scared them away. I was petrified that I would no longer have a right to feel comfortable in my own skin and empowered as a woman because especially early days post-surgery, when I looked in the mirror my focal point was always my bag and the things that surrounded it such as my weight loss, bruises, scars and the fact that my ribs were so obvious, and I had no curves or shape to my body.
When I finally took that leap, it was scary yet so liberating and surprisingly positive for me. I’d built my walls up so high in preparation of talking to someone, telling them about my bag and them running off. The more people I spoke to, that didn’t happen and the more I sat there apprehensive that it was just a matter of time until someone ripped me to pieces because of something I didn’t ask for that thankfully saved my life. I wasted so much time and energy on worry that never became a reality. The people it didn't work out with was for other reasons from not really having a connection, to having different views on life that you couldn't form a relationship from or some people were more than happy to casually date or ask for casual sex, which I didn't want. There are many reasons dating doesn't work out. Some people just aren't right for you, full stop.
Curiosity, not ignoranceIt was within the first month of using dating apps that I decided I would mention my bag within the first few days of speaking to someone, when the opportunity presented itself. “How do you just casually drop that into the conversation?” you may ask, but for me it was important to be upfront and honest. It either naturally came up in the conversation or I’d direct the conversation in a way that enabled me to say about it, such as asking “tell me a random fact about yourself” then when they asked in return, I would take my opportunity.
The first few times I did this, I felt sick with worry. I was allowing myself to be vulnerable with a complete stranger. However, I’d got myself to a place in my head & heart where I was embracing myself for everything that I was, stoma bag and all, that I’d told myself that anyone who was negative or nasty towards me was not worth my time because that wouldn’t be someone I would want to date. We all deserve someone who loves us for who we are.
Men I spoke to often had loved ones who had bowel disease or knew of someone who had had stoma surgery so were not phased by it and often it wasn’t the big conversation starter that provoked countless questions that I had worried it would be.Then there were people who had never heard of it, so asked plenty of questions out of curiosity, which I actually felt really thankful for as it made me feel like people generally wanted to understand. When I started getting to know people more, their worries were things such as could they hurt my stoma if they hugged me? Would it affect my confidence and what could they do to help? Would it be something that they could help with?
There are a lot of nice people out there who are genuine and would approach it just the way that I would if I was getting to know someone and found out they have an illness or had had life changing surgery. It doesn’t define someone, it is a part of them.Remember that when and if you tell someone about your stoma is a very personal choice and there are no right or wrongs. You do what feels right for you and you only. This is just from my experience.
A stoma bag whittles out the “crap” people…pun intendedYes, exactly what I just said, pun intended. I’ve come to see my stoma bag over the years as actually cutting out a lot of the small talk and awkward conversation where nothing really goes anywhere when it comes to the dating world. It’s been a time saver for me and not a time waster.
Because I’ve always mentioned having a stoma in the first few days of speaking to someone, I and them have known where we’ve stood early doors. If someone can’t accept that you have a stoma bag or be willing to learn about it, then your time and energy is best spent elsewhere.
Bride to be to wife
Photo credit: Fawn Wood Photography
In 2017, I met my other half who proposed to me in 2019. We were due to get married in August 2020 but due to Covid, we've had to postpone. We finally tied the knot in August 2022 and it was just the most perfect day. He had heard of Crohn’s Disease and a colostomy before he met me, but has learnt so much from being with me such as there being different ostomy types (I have an ileostomy) and what having IBD could mean for the person who has it and those involved. He also understands that every case of IBD is different in how it affects someone's life and to what extent. He has been involved from very early doors with a lot of my part time voluntary ostomy/IBD awareness and work that I do and has even worn a bag which we poured cold coffee into for a day to get a feel of ostomy life and bag emptying!At no point in our journey has the fact that I have a stoma or a chronic illness pushed him away. If anything, it’s brought us closer and he is always finding ways to help me in my daily life and make things easier. He pushes me to be who I am today, encouraged me to follow my passion and take up singing lessons last year & is always there to hold my hand come rain or shine.
It has taken me years to accept that I don’t have to feel guilty for days where I struggle with my energy and can’t do as much. He is often my 80/20 and never once complains. It has taken me a long time to get over the fear of never being good enough and I do still have my bad days with this. Mainly, he has shown me that I deserve to be loved for the person that I am and to the right person, it really won’t matter that you have a stoma bag, because they will always want what’s best for you, help you to embrace it & be by your side when you are ill or struggling doing anything to make you smile.
Intimacy & having childrenI was so worried that I would never have a sex life with Crohn's Disease by itself, let alone after stoma surgery. Intimacy hasn't been without it's problems for me & it's always been an area that has required a lot of patience & understanding from my partner. Again, the right person will always understand. The wrong person, as I have unfortunately experienced (not because of my stoma), won't give you the understanding you so wholeheartedly deserve.
Your sex life should always be about both of you and not just one person. It can take a lot of trying different things to be at a point where you feel confident and comfy in the bedroom but this doesn't mean you can't have a healthy sex life. Everyone who has had stoma surgery is different. For me, I waited until several months post surgery until I felt ready & listened to advice from my stoma nurse. I felt ready & I didn't have any problems.
Companies such as Vanilla Blush, Ann Summers & Love Honey have some gorgeous underwear that can help to boost your confidence in the bedroom. The same goes with the Comfizz waistbands if you want something that will hold your stoma bag in place but still want to be naked. The Ambassadors product photoshoot day that this photo below was taken on with Comfizz boosted my confidence so, so much! I would relive it all again if I could. Having a stoma does NOT take away your right to be sexy. If anything, you have even more reason to feel sexy & strong!
** Intimacy tip: Use hair grips after emptying your stoma bag to fold the bottom of your bag up in half and hold it in place, so it isn't hanging down if this distracts you with intimacy. **
Having children is something that I feel apprehensive about because of my health complexities. I have a lot of scar tissue in my pelvis from surgery, have a tilted uterus and my reproductive organs have moved about a bit from having my rectum removed. One of my ovaries is matted with scar tissue and my periods are very painful sometimes but thankfully regular.
I won’t know much about how my scar tissue etc affects my fertility until we try for children, if we try. It’s a daunting prospect for me but I know it’s one that we will both tackle together when we are ready. Because everything else health wise has never been straight forward for me, I’m understandably anxious about pregnancy and the things it may cause if we decide to go down that route.
How I feel about myself
I am now in a place with my stoma bag where I feel empowered, comfy and sexy in the skin I’m in. It has taken up until about a year ago since 2011 for me to get to that place and I still have my bad days but I am proud of my body. My bag and my scars are my warrior stripes that show what I have got through. They remind me of my strength & what I’ve had to go through to get here. It’s taken me ages to even feel pretty in a pretty underwear set or look in a mirror and not immediately be focusing on my stoma bag.
You own your stoma bag, it doesn’t own you.
Disclaimer: As always, this post is from our Social Media & Marketing Specialist, Amy's, experience of living with a permanent ileostomy, Crohn's Disease and from what she has researched. Nothing in our blog posts should be taken as medical advice. It's always best to consult a medical professional if you have queries or concerns.
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