I was just having a look at what health issues are promoted this month….and it turns out that October is a busy old time. It’s Stoptober, National Cholesterol Month, Breast cancer awareness month, and additionally Back care, National Clean Air, World Mental Health, Infection Prevention, Menopause, Spina Bifida, Disability, Invisible Disability and Ostomy all had their week or day for raising awareness in this month. I’m sorry that I haven’t been able to talk about something sexual related to each of these campaigns throughout October – so much passion and effort is expended, and I hope that everyone involved has reflected on the outcomes and been able to congratulate themselves on a job well done.
But today I am going to be combining 2 of the above to talk about IBD and Ostomy, both of which are invisible and sometimes disabling, and come with the potential for significant sexual suffering. Now people do have ostomy formation for other reasons – cancer, traumatic injury, constipation….and the sexual suffering can be very similar…but my focus is IBD here.
IBD is short for Inflammatory Bowel Disease, an umbrella term for Crohn’s Disease and Ulcerative Colitis; both causing inflammation in the gut, are life long and incurable diseases, have a ‘troublesome range’ from mild to severe and can come with life threatening complications. Symptoms most commonly include bloody, explosive and sometimes incontinent diarrhoea with abdominal cramps, fatigue and feeling generally washed out and unwell, weight loss – because your bowel can’t absorb what you eat efficiently, anaemia and mouth sores…symptoms that you would imagine when you think of an inflamed gastro-tract. Additionally, sufferers can experience joint pains, eye inflammation, chronic fatigue, pain and depression. None of these symptoms are sex-life enhancing!
A paper published last year by Leenhardt and colleagues in the World Journal of Gastroenterology showed that ‘In IBD patients, more than 50% of women suffer from sexual dysfunction and 45% of men from erectile dysfunction’. These stats are shockingly high and the impact is not only physical, but also psychological and social and can be influenced (both for the better and the worse) by surgery to remove the affected bowel and the creation of a stoma (an opening on the tummy which empties bowel contents into a bag).
Like I said, IBD is not curable…but there is a range of treatment depending on severity of symptoms these might include steroids, immunosuppressants, biological drugs ( and might be administered by tablet, injection or drip) and a range of surgical options. All of the treatments also come with likely sexual side effects – from sore skin and psoriasis to loss of sexual interest or desire, from altered body image to loss of confidence, erectile dysfunction, painful penetration and infertility.
The thing is that there is so much that can be done to help. If you are suffering sexually, finding that help that starts with having a conversation with your chosen healthcare professional. This might be your IBD nurse specialist or your consultant, your GP, practice nurse or if you are really stuck – me! Choose the person that you have the easiest relationship with and DO NOT be afraid of embarrassing them….you have my permission to embarrass the hell out of them if that’s what it takes to tell your story and get the help you need. You may not be interested in having intercourse when you are sick, but there is an awful lot of fun and intimate connection that can be enjoyed if you can have the right conversations!
Another thing that I want to say here is specifically about Stoma formation for IBD. I came into stoma care as part of my role as a Macmillan Nurse for people with urological malignancies. This included people with bladder cancer, some of whom needed to have their bladders removed and their ureters re-plumbed to the outside so that their urine emptied into a bag. Sexual side effects are very common with urostomy and it is why I became a sex therapist…so little was being done about sexual recovery! I also worked closely with a colleague – a Stoma Care Nurse Specialist and we shared an office for 12 years. I learned so much from her and from the patients that we shared and also from the IBD and bowel cancer patients that she supported.
It seems to me that Stoma formation for IBD is always seen to be a very last resort, something to be avoided, kind of negative and somehow associated with failure, something that most people really dread…but for those with severe and unmanaged disease, the formation of a stoma commonly very quickly represents wellness….the diseased section of bowel is gone and people frequently report waking up post-op feeling well for the first time in years. People name their stoma’s, make friends with them and live a better and healthier life for the most part. Now of course there are people who hate their stoma, who wish they had not ended up ‘with a bag’, and struggle with body image and confidence and sexuality for a long time – I hope they can find whatever support that they need, if that is me, I will be honoured to help.
Some people have lasting complications from disease or treatment that need additional support and guidance of a psycho-sexual therapist. These problems are often related to communication with partners and negotiation of an altered sex life, loss of desire, challenged body image and low confidence, altered anatomy after low bowel surgery and difficulty with penetration or pain (dyspareunia) and sometimes grief associated with secondary infertility. What I do know is that any referral that I receive from a Stoma Care Nurse is always a good referral – because SCN’s generally have a great relationship with their patients, are able to be open with those conversations and are very curious about finding solutions. They know this can be a problem, they are willing to hear and to help.
There are loads of sources of support for people with IBD and Ostomy – Crohn’s and Colitis UK have lots and lots to offer and have a good information sheet about sex and IBD that you can see here –
There’s also Colostomy UK https://www.colostomyuk.org and the Urostomy Association https://urostomyassociation.org.uk and the Ileostomy Association https://iasupport.org/ each offering something slightly different.
Stoma appliance companies often have support literature on the internet – have a look around – but you can start with https://www.holliser.co.uk/en-gb/ostomycare/ostomylearningcenter and https://www.salts.co.uk/en-gb/your-stoma and https://www.dansac.com/en-gb/livingwithstoma/articles (they have an excellent booklet about sex things called ‘Your Sexual Self after ostomy’, I believe you can download it as a whole thing, or in chapters).
There are several sites promoting recovery of body and self-image and confidence – here are two – https://getyourbellyout.org.uk/ and the Purple Wings Charity…you can connect to their excellent peer support through their facebook page – https://www.facebook.com/PWCharity
There are a number of bloggers who very openly share their experiences of life with a stoma – take a look at https://www.stomachameleon.com/blog/categories/diary-of-my-birth-trauma-and-stoma or https://www.facebook.com/stomainateacup or https://www.facebook.com/BlakeBeckford
And this is a great chat I had with Lauren Henderson of Purple Wings Charity for World IBD Day. We have 99 views…maybe you can make it 100? https://www.youtube.com/watch?v=UHLpFA1-uFs&t=264s
I hope I have at least educated those who know nothing about IBD and Ostomy, and given the message to those who are suffering that sexual side effects as a result of IBD, treatments or Ostomy are common and very often overcome, either through a close and open partner relationship, talking and experimenting or with help from a specialist team or sex therapist. It all begins with a conversation – have it – and have a great week!