Getting By With A Little Help From My Friends: The Ostomy Community Online

Your stoma support needs: an evolving process

In the early stages of getting a stoma, your medical healthcare professional’s support is definitely needed. In fact, from personal experience I would encourage you to keep in regular contact with them. They are able to offer invaluable advice on dealing with your new ostomy. Even many years down the line, if you ever have any concerns regarding your stoma you should always contact your GP or stoma nurse. However, as you become more confident and familiar with your own stoma, the relationship with your health professional support network often changes and becomes more patient-driven.

I compare this to something someone once said to me about learning to drive:

During the early days behind a wheel while you are being taught, this is when you are being shown how to operate a car. Where the indicators are, how to change gear, what the many road signs mean and how you are meant to react. Although this does take place out on the road it is still a 'staged' environment. It is only when you actually pass your test and venture onto the roads for the first time alone that you actually learn how to drive i.e. how to operate a car without the safety net of someone being sat next to you. Learning the unwritten rules of the road that aren't in the DVLA handbook.

In my experience, dealing with my stoma was very similar. I was a 29 year old man with a relatively well behaved stoma, who had more-or-less successfully returned to his normal life. But sometimes, of course, I still wanted that bit of support, especially as I encountered new situations and with phasing back into everyday life, with the occasional stoma-related surprises and challenges that occurred. I’m not sure that this next phase is really the area of expertise for most stoma care nurses – and that’s not a criticism in any way: they are health care professionals, not psychics; how could they possibly know every eventuality that might arise in the rest of your highly individual life with a stoma?

Discovering the world of online ostomy communities

It took me almost 3 years before I met up with another ostomist...actually, before I even spoke to someone directly online! I guess you could say I was unconsciously ignorant, always assuming that I was the only one in my situation. In my research as a new ostomist I could find pages and pages on life immediately after surgery but, in my opinion, nothing relevant about ongoing life. I wanted to learn about socialising, travelling, working, relationships with a stoma... everyday life experiences. The material I found was all a bit too clinical, or aimed at slightly older individuals.

Finding online ostomy support groups had such a profound impact on me that it is one of the major reasons I started blogging. Despite coming from diverse generations and backgrounds, the obvious common ground was our stomas. It’s like we are part of an exclusive club. We can share stories and experiences and ask questions about products from real people with real life experiences. What soon became apparent is that, although we had stomas for very different reasons, we all had similar day-to-day experiences with our stomas since our respective operations. Even 8 years into having my stoma, I am still often able to learn something new in these online groups (and the meet ups that I now sometimes attend) and that really helps me with concerns I am having with my stoma. Whilst our stoma nurses and medical specialists such as the SecuriCare team are fantastic and can recommend products and be sympathetic to our challenges, it’s not until you speak to someone else with an ostomy that you realise the type of support that you’ve been craving. Sometimes you don't even need to finish a sentence; they just understand exactly what you mean.

Find the right group for you - we are not alone

I now find myself offering advice about my own experiences to new ostomists, in online groups, meet ups and through my blogs. But I am no expert; I continue to learn from the growing online ostomy community. There are a number of groups you can join so experiment and find the one that is right for you. Whether you reach out to an online group or go along to an ostomy meet up (often arranged by stoma nurses or product manufacturers) the one thing we as ostomists must always remember is....we are not alone!