Ostomy Advice and Resources Blogs

Since getting my ostomy, I've been interested in the resources available online for ostomates (people with ostomies).


My operation scar and ostomy bag

My ostomy kit
 

An ostomy is simply a surgical diversion of the bowel, so that your poo comes out of a hole in your stomach rather than out of your bottom. I tell people that my bum is now there purely to bring aesthetic pleasure to the world, as while I have my ostomy, it has no other practical use.

 People with ostomies quickly build up a kit, a set of bags, wipes, sprays, pastes, scissors and other bits and pieces. I thought it would be useful to have an online kit of useful websites.

Particularly useful I think, are people's own blogs, where they share their experiences of living with an ostomy, and the condition that led to them needing one. Lots of bloggers have Crohns or Colitis, others have had bowel cancer, others have urostomies (some people have two bags). Every individual's experience is different, but what unites us all is our stomas and the ways we learn to cope with them.

One that impressed me today was by Jessica Weatherby called "Guts and Glory". I particularly liked this post on Bags Tips and Tricks where she shares expertise that only someone who lives with a bag everyday could gather. Jessica's story featured in the Daily Mail.

The Adventures of the Stoma Bag Lady is another good blog. I love this post "I Cant Fart" which lists 5 things people might not know about ostomies.

Colitis and ME is another great blog - this is by Victoria Marie, a key figure behind the 'Get Your Belly Out' campaign which encourages people to overcome some of the stigma associated with the stoma, by sharing pictures. Loads of people have done it - the GYBO facebook page is here, and people are using it to seek and give each other support and advice with all kinds of life issues. Another handy facebook resource is 'My Bags For Life', another ostomate fb community full of positivity and helping. I've had good support and advice from both pages. The Colostomy Association have a private facebook group which currently has 2739 members!

The Great Bowel Movement is a blog that aims to keep people talking about poop:

"We see our community fighting hard for this, doing their part in social media, through blogging, and through starting conversations, to make IBD and ostomies household names of topics of conversation. We seek opportunities to share our stories and bring all the aspects of these diseases into light, to tell everyone that we can about IBD.
But sometimes these awareness efforts have a sneaky side benefit, and that’s to help ourselves. Often when we present the question “What’s one thing you would tell to someone newly diagnosed?” one of the most common responses is, “You’re not alone.” You are not alone. You aren’t being singled out, you’re not the first one to go through this, and you’ve got a huge community of others that understand and want to lend support. And the value in putting our stories out there, not just for people unfamiliar, but for people intimately familiar, is priceless"

This story about Mark's Day on the Beach is worth a read:

"My family and I have always enjoyed the beach, and our goal this past summer was to spend time on one, soaking up the sun and swimming in the ocean. I had a little challenge, though: I’m a one-year colon cancer survivor with a permanent colostomy and a small hernia alongside my stomach. My stomach bulge is bigger than the average person’s, and that’s something that can’t be hidden on a beach"

Pretty Gutless posted this great guide on how she changes her ostomy bag. It's on tumblr, which made it easy to illustrate with loads of photos, stage by stage, which makes it really easy to follow.

I don't think any list of Ostomy blogs would be complete (not that this list is complete by any means!) without Stolen Colon, this collects together lots of different people's stories. There's some great advice here on what to do when your bag gets filled with gas.

A great Youtube Channel by an Ostomate is Laura's blog Ostomystory. Here's an excellent account of how she changes her stoma bag, it's had over 150,000 views!
 

There are plenty of myths and fears around ostomies and Blood Poop and Tears does her best to clear up 13 of them. Here's myth number 10:

"Myth #10 – I don’t know anyone with an ostomy
We are sneaky little MFers. Trust me if we don’t want you to know, you won’t. I once had a friend ask me ” Are you wearing your bag?”, (as if I had a choice). Ostomies are easily hid and concealed. Before I had an ostomy I was always shocked when I met someone who had an one because they didn’t have a sign on their head or a swarm of flys around their poop stench. We look just like you do."

One of the really best blogs is Vegan Ostomy. Being vegetarian or vegan with an ostomy has an extra set of challenges all of it's own, but this blog is rich in advice and resources that will be useful to everyone, including meat eaters. Nearly all the blogs I'm coming across are by women, so I was really pleased to see this post with a clothing guide for men.

I've given a bit of advice of my own. Here I talk about challenging stigma around stomas and cancer, and here I give some of my own tips for getting through chemotherapy.

If you want to do more than connect online, there are support groups out there. Eakin Cohesive has made a list of many groups around Europe and the Anglophone countries. They've also put up a pretty good list of some of the various online resources for ostomates.

I know that I've really only scratched the surface of some of the really great blogs and accounts that are out there, many of the blogs I've linked to link on to great lists of bloggers. If you know of a blog or website I've overlooked here (or write one yourself), I'd love you to share a link to it in the comments below, you'll be helping me by making my blog more comprehensive, and giving me and anyone who reads this post more of the information we need, as well as promoting your own blog!

I'm also hoping at some point to put up a list of great twitter accounts that cover ostomies (for example @uncoverostomy who also blogs here http://uncoverostomy.org/blog/  and @colitisninja , many of the people I've already mentioned are also on twitter - I'm always looking for new people to follow, so if you want to share your twitter handle, you can post that below too!

Portland Gathering 2013. Tuesday: Decision Making, Risk and Conflict

I'm currently attending the Portland Gathering in Oregon. The gathering began on Monday, but I spent this day travelling, arriving pretty late Monday evening so I can tell you what happened on Tuesday.

The theme of Tuesday was focussed around supporting people to make decisions. Leigh Ann Kingsbury began the day, talking with Mary Beth Lepkowsky about the issues involved in helping people to make their own decisions, and about involving people in big decisions about their services, teams and organisations.

Leigh Ann pointed out that while we imagine that our decision making is logical, rational and sequential, in reality we often make impulsive and emotional decisions. Mary Beth continued the theme, saying that "Decision making is not always a clean process, but it can be a thoughtful process", the key question, where people lack capacity to make a particular decision and therefore need someone to make it on their behalf being "Does this decision align with what we know about that person's core values for their life?".

Bob Sattler asked the question "We often tell people 'It's your choice', but is it really?" He shared a tool that looks at the things that are important to us, ranks them using a score of exactly how important they are, and then also rank how present they are in our lives.

Julie Malette presented a brilliant summary of the person centred approach to risk, pointing out that everyone has the right to make risky and bad decisions, and using practical examples to help people explore some of the tools in the person centred risk process.

Mary Beth and Leigh Ann explored issues and pitfalls of co-productive decision making, sharing tools that help identify who should be involved in particular decisions, and what role they could play in those decisions, concluding "We've learned that the more inclusive we are in any process, the better the outcome".

In the afternoon I presented on person centred approaches to conflict, asking questions about what it is that means the difference between a positive conflict that leads to progress and change, and negative conflict that leads to harm to one or both parties in that conflict.

People particularly liked Helen Smith's volcano' tool that asks people to think about issues and situations that put them into particular 'zones'; the comfort zone, the stretch zone and the danger zone, and if there are particular methods or techniques that help them get back from their danger zone into one of the safer zones.

Wednesday's session starts in an hour or so, so I'll do my best to let you know the key items we discussed tomorrow.

Watch this space!


(Photo of me thanks to Douglas Tennant)

Disability in Prehistory

In recent years archeologists have been unearthing remains that demonstrate that at least in certain prehistoric communities it was routine to care for severely disabled people. (Dettwyler 1991)(Tilley and Oxenham 2011).

Our picture of Neolithic peoples as 'savages' needs to change

 

Kristina Chew has summarised some of the fossil finds in this article:5 Prehistoric People 

45,000 years ago, a Neanderthal, Shanidar 1, lived to the age of 50 in what is now modern-day Iraq though one of his arms had been amputated, one of his eyes lacked vision and he had sustained other injuries.

10,000 years ago, Romito 2 lived until he was a teenager; his skeleton shows that he had a form of severe dwarfism that meant his arms were very short. He was therefore unable to live by hunting and gathering among his people, who “would have had to accept” what he could not do.

7,500 years ago, Windover boy in Florida lived to the age of 15 though he was born with spina bifida, a severe congenital spinal malformation.

4,000 years ago, a young woman from a site on the Arabian peninsula lived to 18. She had a neuromuscular disease, possibly polio, with very thin arms and leg muscles that would have made walking and movement extremely difficult. Debra L. Martin, associate professor of biological anthropology at the University of Nevada, Las Vegas, says that she would have needed “round the clock care.”

Read more: http://www.care2.com/causes/ancient-bones-acts-of-kindness-eons-ago.html#ixzz2IQEnafqY

The latest find is of the 4000 year old remains from Man Bac in Vietman: http://www.statesman.com/news/news/prehistoric-bones-can-tell-stories-of-human-compas/nTgsh/
This boy had fused vertebrae, weak bones and would have been unable to walk or use his arms from adolescence. The evidence shows that he had Klippel Fell Syndrome, yet he lived for another 10 years.

Tilley says she knows of at least 30 skeletons “in which the disease or pathology was so severe, they must have had care in order to survive".

Today many assert that the fact that poor sick and disabled people receive welfare support is a sign of Western ‘progress’ and ‘enlightenment’ as a society, or even a luxury we can now afford thanks to economic development (for example Zhang & Song 2012), that the right to support with health may even be a ‘Western imperialist’ idea (Matheson D. 2009).

This fossil evidence of ancient welfare practices undermines such self-congratulatory assumptions.

We can assume that life was tough for these communities, they faced predation from wolves and tigers, some did not yet have agriculture, and lived by gathering and hunting, the idea of a 'state' had not yet been thought of, though neither did they have bankers and multinationals demanding that society's resources should be directed at them.

The resources they had were very precious to them, and they used them to make sure that every member of their community was supported to live as well as they could.
 

When politicians start to use rhetoric about 'scroungers', 'skivers' and 'burdens' (and politicians of all the main parties are guilty of this) they show in many ways that our society values humanity less than we once did. When we segregate people, when we create disempowering places like Winterbourne View, when we invalidate people's voices, treat them as 'other' and fail to listen to what they're saying with their eyes, bodies and behaviours as well as their words, we show that we're not listening, not valuing, not being human,  

It was the fact we valued all human beings that enabled our species to survive those tough prehistoric times and begin to build civilisation. But as I was asked on twitter recently: "Are we civilised now?"