Women's health with an ostomy | By Amy Robson

We have another amazing blog post to share with you for International Women’s Day, written by Amy (@ibdwarriorprincess) discussing important topics and concerns women with a stoma face, including diet, mental health, intimacy, fashion and fertility. We hope Amy’s insight and her experience helps you.

We hope you enjoy, and as always if you would like any further advice please do not hesitate to contact us or your stoma care nurse.

March 8th is International Women’s Day

I wanted to take the opportunity to talk to you about some topics particularly relevant to us as women (& men too) post stoma surgery.

To find out more about me, you can explore my Instagram (@ibdwarriorprincess) and also read a recent post for Respond here.

This post will definitely explore sensitive matters, so this is a trigger warning as there will be weight and diet discussed, mental health, sex, body image, relationship concerns and more. For me, a lot of my worries and concerns came from potential psychological barriers instead of physical. If you are waiting for surgery or have had stoma surgery, please know that you do not need to tackle any of these things alone. There is always someone willing to help and as always, if you have concerns, please speak to your stoma nurse or medical team. I’m always willing to talk to people & support them where I can too via my Instagram (ibdwarriorprincess).

My stoma nurse

Before I had my surgery at 19, it is safe to say that I felt very overwhelmed at all the information coming my way. I had 2-3 months to get my head around such major surgery and little did I know at the time that it would save my life.

My stoma nurse was a huge part in my recovery right from when I found out and she was so fantastic. She left her job a few years after I had my stoma formed but the stoma nurses I see now are also so lovely & supportive. I’ve discussed many things with them from post-surgery fears to clothing worries, from diet worries to dating with a stoma. They have been such a big part in both my physical & psychological recovery.

Waking up with a stoma

It was definitely a feeling like no other waking up with a stoma. Apart from feeling like I’d been hit by a bus, I felt like my Crohn’s had suddenly got up and walked out because the pain I was in was a different type of pain. It was a pain I was hopeful with because I knew there was an end in sight and that things would start to look up.

Even before I knew it had saved my life, I had told myself that I was going to embrace stoma life with everything I had because for as long as I could remember I had felt such a prisoner to my illness and my body. There had been many days where I didn’t want to make it to the next and I frequently asked myself what the point in it all was.

The week after my surgery in hospital was the hardest week of my life but I’d do it all again to feel how I do now.

Fashion worries

Me & my brother, not long before my surgery

Before my surgery, I most often had a very negative relationship with my body. I wasn’t a massive fan of looking in the mirror, often because of skin and bone looking back at me and a swollen face from steroids. I wanted to look in the mirror as a teenage girl and see my body developing boobs and curves and never saw this which was super hard to get through and it often reduced me to tears. My clothes would hang off me because of my weight loss and I felt like everything I wore just made things worse because I felt I couldn’t really have or develop a style.

My stoma nurse and I actually had many a happy chat talking about fashion ideas and the things I was going to look forward to wear post surgery and I can say now, over 10 years on, that my stoma enables me to wear what I love. I get to wake up every day and choose what I’d like to wear and I am so thankful for that feeling. I own my stoma bag, it doesn’t own me, so I will always look for ways in which I can wear what I love but with added confidence by having stoma support wear underneath.

Intimacy concerns

At the time of my surgery, I was in an established relationship. My partner at the time had Bowel Disease and had had a temporary stoma years before, so in this sense, I didn’t worry about him not accepting it as I knew he was well rehearsed in everything. He was so supportive of me from when I got told I needed the surgery and right into my recovery also.

Sex did worry me & being intimate. I had never had the best appetite for sex when I was flaring with my Crohn’s anyway, which I know is super common, and I worried that having a stoma would take away my appetite even more. The first few months after surgery I felt was a complete no-go because I felt that fragile & sore, especially from having my bum sewn up (aka barbie butt surgery) that this was the last thing on my mind. When it happened, it was several months post surgery and it just evolved naturally, which I think is the best way. You know your body best and know when you’re ready. When it happened, I actually felt a lot more carefree than I thought I would about it and my stoma bag. I think this was because physically, I felt so much better and had put on weight and got into a much better place with myself, so in turn, felt so much happier within myself.

Sex itself didn’t feel super different. If anything, it was less painful than before surgery and some positions had to be changed up a little or avoided to account for my reproductive organs dropping down and round a little because they no longer had my rectum, colon or the same structure in place to hold them there. I felt much more relaxed in general, which made the experience a lot more enjoyable and we just took everything slowly & ensured we communicated consistently throughout.

Dating fears

When my partner and I split up, I was thrown into a completely unknown world. I now panicked about finding someone who would accept me with my stoma and was worried that I’d receive negativity when I brought my stoma up. I worried that it might scare people off so I actually only let myself date people who had bowel disease and/or a stoma for a good few years to avoid having to confront my fears.

Sadly, having bowel disease and/or a stoma didn’t stop me experiencing horrible treatment for reasons other than my stoma, none of which should ever actually give reason to be hurt by the person you love. If people want to treat you badly, this experience, along with others, showed me that nothing will stop them & that experiencing bad treatment is usually a reflection on them being deeply sad within themselves and projecting it onto you.

Telling someone about my stoma

After those years of confining myself to that dating criteria and pulling myself through a horrible break up, I decided that enough was enough and that it was time to face my fears and step out into the dating world as a whole. I signed up to dating apps & got talking to people from all walks of life.

From the offset, I adopted the attitude that if someone was going to act negatively towards me because of my illness or stoma, then they weren’t the sort of person I wanted or needed in my life anyway. I brought up having a stoma quite early into talking to people, usually by asking them a few days into talking to tell me some random facts about themselves then using this as an opportunity to bring up my health.

Thankfully, I can count on two or three fingers the negative comments I got, and although they upset me in the very short term, I soon brought myself round from it because there was no way I was going to spend any more of my life being treated badly or confined to pain, whether physical or mental, as much as I could help it.

I went on dates with different people over a few years and had some short relationships and because of reasons outside of my health, they never led anywhere. Those people, however, never singled me out or made me feel inferior because of my health and my surgery. They embraced me, stoma bag, scars and all and it never came between us, as it quite rightly shouldn’t with anyone who’s a decent person.

Bride-to-be

Not a dress spoiler!

My fiancé and I have been together 5 years and he’s been nothing short of supportive and encouraging with my stoma and my health. He always has my back in the many things I do, such as helping others, raising stoma awareness and empowering others with their body confidence and he also wears a stoma bag for a day a year (usually World IBD Day) to get an insight into what it’s like for me. He’s very “hands on” with my health and does what he can to make every day easier and more manageable for me. We get married this year, after having to postpone because of Covid, and I’m so excited!

Talking about children & fertility

Fertility is something that is such a big deal to myself, and many others. Fertility itself and possible consequences of my surgery didn’t properly get mentioned to me until probably 4-5 years post surgery and sadly, even then, it was almost brought up as a subject that could so easily be passed off.

I got told, in simple terms, that surgery may have reduced my fertility significantly but that I wouldn’t be any the wiser until I tried for children so to get on with it and try, which I found very insensitive and shocking. I have only just come round to thinking about having children in the last few years and haven’t felt in a position in my life to try for them yet and neither has my partner and we will both know when the time is right. It’s not as straightforward in my eyes to just decide that we are having children and there are many questions I’d like some answers to or input on before we go ahead and try.

There are a lot of “what ifs” and questions surrounding this and the unknown is quite scary but I know whatever happens, we will face it when we come to it. I will hopefully be having a chat with Obstetrics when my Gastroenterologist arranges it and I will also be arranging a chat with my stoma nurse to discuss my concerns.

As a woman with a stoma, I have had and do have my bad days, but mainly, I have felt proud and empowered. My stoma has enabled me to live and to find myself. It’s enabled me to help others, to make friends and to push myself outside my comfort zone. I feel comfortable in my own skin even though it has taken a lot of work sometimes to get here. To me, having my stoma wasn’t the end, it was just the beginning.

Thank you once again to Amy for sharing with us valuable insight on her experience with important women’s health issues with an ostomy. 💚 Make sure to check out Amy’s Instagram page @ibdwarriorprincess to keep up to date with Amy and her ostomy journey. For more information and to get involved this International Women’s Day, head to their website by clicking here, and help #BreakTheBias for a gender equal world.

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