Stoma nurses can be a fantastic source of information and support before and after stoma surgery. In the early days, it can feel like they’re the only ones you can really talk to about it. After all, they’re the professionals, and they’ve seen and heard it all.

New ostomates lack lifestyle guidance

However, it seems that many of us don’t feel like we’re getting enough lifestyle advice from our nurses. During my early stoma journey, I didn’t even know what questions I really even needed answering!

I’ve talked in previous posts about my incorrect assumptions which made life more difficult during my first two-year stint with a stoma. Things such as not realising that a low residue diet was only supposed to be for the first six weeks following surgery, and thinking that I wasn’t allowed to squish my bag at all, resulting in me buying a whole new wardrobe to accommodate it. There was no discussion about sex, mental health, or exercise. It was simply about the health of my ileostomy and the peristomal skin surrounding it.

I wanted to hear about others’ experiences, so I asked what kind of conversations ostomates think stoma nurses should be prompting in the early days on Facebook and Twitter. Here are a few examples of what was said:

Tracy
“Mental health, diet & exercise plus sex & relationships. And for women some info about how things may change after proctectomy etc.”

Desiree
“Convo about exercise + diet would be beneficial.
Mine told me to join Facebook groups and I’m forever thankful for that.”

Andy
“Mental health impact would’ve been good. Took me ages to rebuild my confidence even with my extremely supportive wife.”

Ian
“My stoma nurses were great, but they only cared about the stoma itself, not about everything that went with it. I was very fortunate in that I had a very good friend who was amazing for me, my unofficial stoma nurse, who gave me the confidence to go ahead with a permanent stoma from the start, warned me about most of the cons that go with surgery, pain etc. I dread to think how I would have managed without her tbh!
But I will say, whenever I needed to talk to one of the stoma nurses, they were available and helpful.”

John
“It’s been very much a case of learning from my own personal experience of the various problems that arise. I don’t think there is a realisation of the traumatic life changes sufferers experience and the consequent anxiety and depression that follows.”

In the rest of the comments, mental health was mentioned the most, but lifestyle advice such as diet, sex, relationships, and exercise were mentioned several times. Some ostomates would like to have been warned about the complications and common struggles following surgery, such as hernia risk and still passing mucous if your rectum is left intact. A couple of comments also mentioned that knowing a bit more about how different foods impact stoma output would have been useful.

The ostomy community continues to be an invaluable source of information AND inspiration for people with a stoma. I personally can’t recommend it enough! Lived experience is priceless, and sharing tips and lifestyle stories can be really powerful. However, we’re all different so it’s not like what worked for me will work for someone else, especially when it comes to things like diet and exercise, and some questions really do require medically trained advice.

Who’s responsibility is it to ensure that we get the best from our stoma nurses?

I imagine it must be difficult for stoma nurses. They have such a wide range of patients to visit, all with different priorities and lifestyles. Different life stages, relationship statuses, careers, and family situations. The topics that each person would find beneficial will obviously differ.

Immediately after stoma surgery, there’s often a whole process of upset and denial going on too. We all reach acceptance at different speeds, and some of us feel like we’ll never get there. So, finding the right time to approach more personal subjects is probably tough.

As a health advocate, of course, I think we have a responsibility to ensure that we ask our stoma nurses the right questions, but let’s not forget how overwhelming it can all be. Some topics might feel too embarrassing to bring up, and, as mentioned above, we don’t always know what guidance we even need. It’s also not always easy to know the right person to ask which question. For me, there’s a GP, IBD nurse, gastroenterologist, stoma nurse, and colorectal surgeon. It’s been my experience that whoever I ask, they tell me I should be asking someone else, which can be so frustrating it can put you off asking again!

I think the very least we should expect from our stoma nurses is an open invitation to discuss anything we want with them. A simple, “Is there ANYTHING at all you think I might be able to help with?” during each meeting doesn’t seem that much of an ask to me.

I live in the hope that articles such as this ultimately land in front of the eyes of stoma nurses. Real feedback from real people enduring the struggle.

In the meantime, if you have any questions, I might be able to point you in the direction of some useful resources or share my personal experiences. No question is stupid, and nothing is off-limits here. You can always find me on Twitter.