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

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!

by Scott Smith

Scott Smith

About the author

I was diagnosed with Ulcerative Colitis and bowel cancer. I had to have a major operation leaving me with an ileostomy. In a few short months I was discharged from hospital - back into my 'normal' life - changed forever.

Recent Comments

  • Elizabeth De Luca

    I'm a young ileostomy female. I was 46 at diagnosis, 2004,son, 20 at his diagnosis 2005, daughter age 17 diagnosis 2006. We all had our surgeries and the reversals. Each one of us had a vastly different experience over the last 12.5 yr'.s. We have F.A.P., GARDNERS DISEASE. I endured a great deal of pain as my reversal never really worked well. I continued to work but my bowel just stopped, I was going 140 times per day while holding down a sometime 50 hour work week. It was stressful. My daughter now married two years took me to the BEST HOSPITAL IN THE COUNTRY. I found out things about my anatomy and many tests confirmed my pelvis wasn't working on it's own. I had a neuro transmitter(like a pace maker ) place in my left buttocks and a probe into my sacral nerve. Turns out my inoperable desmoid/soft tissue sarcoma wasn't the cause for all the blockages. A marvelous physcian discovered by using a pediatric probe and loop he got through an angulation above my tumor. He place temporarily a twin pig tail stent, which after flying half way across the country I returned to find they just wanted to put few stitches to now hold them in place so this time they wouldn't drop out. Painful to lose the pigtails. I've had chemo to help shrink the tumor it does nothing and there was no promises. THIS hospital said leave the poisons on the shelf for now. They stitched and accidentally perforated my bowel leaving me with very little small intestine left. I nearly died came home, spent months in and out of hospitals and back to my safety hospital in N.Y.C.. Now, 58 fighting for my life once again and more surgery, turns out my gallbladder attached itself to my small piece of intestine. My husband a lovely man who I cared for all his needs as he was home with us from 1994 until 2009 with M.S. is living in a nice nursing home. I don't like it but he is actually doing better now than at home. He has dementia, legally blind and sometimes thinks he is 28 and my daughter he thinks at times is me or I'm her. My son is living in another state and ignores the disease and us, So I finally joined a support group, went to one meeting, everyone all 12 of the members 50 miles from my home don't have or understand FAP/GARDNERS disease, the biggest situation is I want to relate to not people who are 50 plus years into their illeostomy and became inspired to be nurses, I want to find people who know what burning butt syndrome felt like, are young enough to relate to a woman of a young 58, a daughter who is 28 and I don't want to be rejected. I don't want questions of how do I poop or can I see it, or wrinkle up their nose after you answer the question. I'm friendless now, lonely, I feel ugly, especially after being rejected, though "its not the bag." I would love to know I have at least 4 good friends who can understand, treat me normally. I have my daughter AND son in law but they're too busy. I was forced to retire early due to the stress and the amount of time I have spent in hospitals left no choice. I sound pathetic I realize, however, it's hard enough to keep friends when your husband has Multiple Sclerosis and they treated us as we couldn't travel in their lane anymore. Then I became ill and everyone has grandchildren, nobody wants me the single woman. I just want to laugh, go on a trip now and then small nothing outrageous, and have women that can relate to me. It's fair to say at this point I've been told I look so young. I know my age and found I can relate to people of all ages.My work girlfriends were "mean girls." I wasn't included because of well you know, the bathroom situation. I feel like a left over with this bag. I and I'm dehydrate to the point I end up in the hospital. TOO much output not my fault they say. So here it is I need friends. I love to laugh, I'M funny we survive that way. I'm a bit shy,so I'm not blazing a trail or angry or loud. I can laugh at myself and enjoy painting though I don't like to show it. I'm not overly confident but I know I deserve better than the friends who reject you based on health status. Seriously, isn't this multi generational thing. I know I'm not alone I believe over the decades we can share and learn from the other. My children are doing well and my daughter is concerned about the lack of socializing for her mother. I have great conversations when in the hospital, but who wants to be in the hospital to have someone relate to you. Plus I'm always paired in a room where the husbands are so in love with their wives, mine doesn't understand what or if he can remember he can't care. In the middle of a conversation he'll say, "time for bingo, got to go." I don't care for BINGO and I want a normal life. I don't want anyone's husband, I'm not feeling very interested in anything romantic I had a man I was rejected and that has caused me to evaluate what I deserve. Friendship would be a great addition to my life. Thanks for listening and I'm tired of being paired to senior groups.

  • Mel wilson

    Would love to find others who know and understand ostomys.

  • SecuriCare_Team

    @Mel we have a list of support groups who may be able to help you. Please feel free to view their details at www.securicaremedical.co.uk/advice-and-support/resources/support-groups.

    Best wishes,

    SecuriCare Team

  • Bernadette Macdonald-Wilson

    I went to my local ostomy support group at Arrowe Park Hospital, Upton. Wirral. I found just 4/5 women and a rep each month who just pushed their expensive wears. I have all what I need re, undies and support wear on prescription, my G.P. is fantastic. I am classed as unable to work due to 3 major abdominal surgeries, had part bowel removed and was in hospital in 5 months for over 9 weeks very poorly. This was over a year ago and I am involved with charity Colostomy UK who are great. However I would like to either meet up or join an online group who are more active. I don't want to be involved with a stoma group who just look at swimwear and frilly knickers. I want to be an activist and fight for our rights and make the world more educated about the pooh taboo. I am not ashamed of my permenant stoma and talk openly about it. Plus I found fighting to get your rightful benefits something we should as a community should pull together to empower ourselves and make a noise. I like to share common sense things like recycling clothes, getting help for mental health probs with an ostomy, and bringing people help and support. What do I do? My thanks. Bernie. MacDonald-wilson. A young 58, with attituide!!!

  • SecuriCare_Team

    Hi @Bernadette what an excellent attitude you have towards life with a stoma! You would be most welcome to work with us in spreading awareness. We are always interested to hear people's stories. Perhaps you'd like to write a blog for us or be featured in our Hand in Hand magazine? Please email web.enquiries@clinimed.co.uk for a chat.

    Best wishes,

    SecuriCare Team.

  • Linda Rainbow

    please could you let me know how I can join an online group of other people who have or are having a colostomy bag so that I can chat to them online and find support and friendship Thank you

  • Catherine Cooney

    I am so lonely

  • sudesh sethi

    would love to meet up with people aged 70 plus who have stoma

  • Sally west

    I would love to meet and speak to people who are struggling with an ileostomy.

  • Marlene

    I feel lonely at times also ,I only have had illostomy for 2 months and still off work and family busy with responsibilities I would love to be able to contact people in same situation .

  • SecuriCare_Team

    Hello all, please check out our support group section: https://www.securicaremedical.co.uk/advice-and-support/resources/support-groups

    ...or select 'advice and support' >> 'resources' >> 'support groups' from the menu.

    SecuriCare hold regular events around the country which give you the chance to meet with fellow ostomates and hear about products that could help you better care for your stoma. Our sister company also hold regular events:

    https://www.securicaremedical.co.uk/events
    https://www.clinimed.co.uk/events

    Facebook is home to many online support groups and your Stoma Care Nurse should be able to advise you of local community support.

  • Kittu

    I m married but I feel so lonely...nobody can't understand me

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