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IBD, Sex and Me

Every 30 minutes someone in the UK is diagnosed with Crohn’s Disease or Ulcerative Colitis – the two main forms of Inflammatory Bowel Disease (IBD). 

 

At least 300,000 people in the UK are diagnosed with IBD which are chronic conditions that can cause ulceration and inflammation in the colon (Ulcerative Colitis) or any part of the digestive system (Crohn’s Disease). Symptoms can include digestive issues, severe pain, extreme fatigue, and dramatic weight loss. At present there is no cure for Crohn’s and Colitis, but drugs—and sometimes surgery—can give long periods of relief from symptoms.

 

This means 1 in 210 people are living with these unpredictable, life-long and potentially life-threatening conditions on a day to day basis. Many of them are fit and active in other ways, so it comes as no surprise that wanting a healthy and happy sex life is still way up high on their priority list. But how do you manage both the physical and mental impact of IBD on your sex life, without embarrassment or fear?

 

We spoke to writer and radio presenter Sam Cleasby, whose own experiences with IBD led her to found So Bad Ass, a blog about poop and positivity.

 

 

You’re known for being both practical and positive when it comes to IBD-related issues surrounding intimacy. Did you find any similar support when you first became ill, or did you have to work things out for yourself?

 

Oh no, there was nothing. And when you only get to see your doctor for a limited time, it can feel frivolous to ask about sex when you have a list of questions about your health. I am an open person but when you are in a hospital setting, it’s like you are out of your comfort zone. You become institutionalised very quickly and follow their lead.

 

I was diagnosed with ulcerative colitis in 2003 and had surgery to form a stoma in 2013. In those ten years, not one medical professional asked me about sex or intimacy. I hope things have changed since then.

 

I started my blog because there was no personal information and support out there. There was lots of medical talk but no one talking about the real day to day stuff. But though I am really open about my illness, I am quite a private person about my sex life. And so I found it hard to talk about, it really pushed my boundaries but I knew if I had these questions, then so would many others.

 

The one time I started to ask about sex, the doctor I was seeing four weeks after surgery jumped in and replied “Oh, definitely wait 6-8 weeks”. I was too embarrassed to say we had already had sex and that my question was actually about whether it was normal that I needed extra lube!

 

How have you had to adapt your sex life in order to manage the practicalities of living with IBD?

 

I have a permanent ostomy bag now. I have had my large intestine, rectum and anus removed and my small intestine comes out of my tummy. I wear a bag on it all the time and my poo comes out that way.

 

I don’t have a butt hole any more, they call it a Barbie Butt. So obviously that put an end to any butt play. As a het woman it wasn’t the end of the world for me, but for gay/bi men, it can be a huge hurdle that really isn’t discussed.

 

I would say the main thing I had to adapt was my attitude. I have had nine major surgeries and now I’m covered in scars and my body looks completely different to how it did before. I had to work on my self esteem and self confidence, and learn about my new body.

 

I have an ostomy bag - this has to be worn 24 hours a day and I have no control of when it fills with poo, so it can be tough to learn to accept it. At first I felt quite shy of it during sex - I’d wear long vests to cover it up, or special underwear that covers the bag but has a slit underneath to turn them into crotchless knickers. But to be honest these things kept the bag in the forefront of my mind when all I really wanted to do was get down and enjoy sex.

 

My husband hated me covering up, he said if I was thinking about my bag, then I wasn’t enjoying myself and being in the moment, and he was right. Nowadays, I’ll wear something if it makes me feel good, but not just to cover my ostomy bag.

 

I’d already been with my husband for years before my surgeries so he had to learn about my new body too. There were difficulties here - we needed to talk and be super honest about how we felt. But I wasn’t negotiating dating and new relationships, so for me, it felt easier.

 

My bag is now just part of me. You learn what positions work for you and which don’t. For me, I hate to hear the rustle of it, because it takes me out of the moment. This can be tough if your bag is on the same side as the hand you use to masturbate!

 

One thing that took a bit of time was the thought of him going down on me and being nose to bag. I couldn’t get over this hurdle of thinking how off putting it must be to be so close to it. Then I remembered that usually your butt hole is much closer than my bag and I let go of that fear.

 

I think a really important part of sex is being relaxed and having fun. Real life sex is so different to porn sex! We laugh, we squelch, we sweat, we change positions because we get cramp. And for me, sometimes we have to pause when my bag fills all of a sudden, or we go for a different position because that day I have pain or fatigue. And that’s all ok.

 

Great sex is about letting go and enjoying it. My bag is part of me, but only a little part. Why focus on a little bag when you could be focussed on all the other parts of my fabulous body?

 

I would say that my sex life is better than ever. Accepting my illness and my ostomy bag meant I could accept all of my body, lumps, bumps, fat bits, scars and all. And confidence is the sexiest thing you can bring into the bedroom.

 

 

Are there any specific products that can help?

 

If you have an ostomy bag, then check if it has a Velcro strip halfway up the bag under the flap that covers the window. This is there to fold the bag in half upwards and keeps it smaller and close against your body. I didn’t find this out for 5 years!!!

 

A company called Vanilla Blush do great ostomy underwear if you want to cover up more - they’re pretty undies that have a pocket for your ostomy bag. I don’t wear these for sex, but just in general.

 

Look into sex toys. Honestly, I hadn’t had a sex toy since the rampant rabbit that was the must-have item of the early 2000s. I didn’t really think they were my bag. But then I was introduced to ranges that were all about mutual pleasure and play and it was an absolute game changer!

 

 

What practical advice would you give to someone struggling to balance IBD issues with physical intimacy?

I would say to talk to your partner about how you are feeling. It is easy to make assumptions about what others think about you and your body, but generally you are wrong.

 

It can be hard when you have fatigue or pain and sex can be the last thing on your mind. But it is important to not lose that closeness with your partner. Honesty is key. Talk about how you feel, what you want and what they want.

 

A great sex life is so much more than penetrative sex. And when you have IBD or an ostomy bag, there are times when that is out of the question. But that doesn’t mean you can’t enjoy each other in different ways.

 

If you have questions, reach out to your IBD nurse or stoma nurse. It is their job and they have heard it all before!

 

 

You can get further information and advice about IBD via Crohns and Colitis UK.

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