Sweet Calamine

Here's a tip for anyone who has a stoma, and finds that they get red and itchy skin around the stoma area.                                           

Here's my ileostomy. It's double barrelled,
and reminds me of the 'yin yan' symbol.
 

I had this problem, that was partly solved by using 'stomahesive' paste around the edge of my stoma, so that the fluids in my bag stopped getting directly onto my skin.

I still found however that just the presence of a bag on top of my skin 24 hours a day was causing it to get irritated; both the area it was on top of, and also skin nearby.

I also found that my bag wasn't sticking that well. It would leave gaps that made me feel insecure about whether I'd end up getting a leak.

I found some advice on one of the facebook pages I link to in my post 'Ostomy Advice and Resources' which I thought I would give a go.

What I did was first to shower with my bag off. This is a great feeling. You can get your stoma and the area around it really clean using wipes provided by your ostomy supplier. It's great to get some fresh air to the area around the stoma too. I'm sure it does it good. Obviously the key to showering is to have everything ready to hand, time spent getting out all your potions and powders, wipes and bags beforehand and putting them in their places is time well spent.

When I'm washing in the shower, I don't use strong perfumed soaps or sprays near my stoma. I gain confidence from the thought that this is actually my intestine, that's been turned inside out and brought to the surface. When I think about some of the potent curries I've eaten and which all travelled down this tube, I realise it's made of pretty resilient stuff. Nifty work with wipes ensures that if my stoma starts working, I catch anything that it kicks out!

I dry the stoma and the area around it with more wipes. Then I use calamine lotion. This is the same stuff you use when you have sunburn or chickenpox to soothe and protect your skin. It's cheap, and available in any pharmacy.I use it much more thinly than I would with sunburn or chickenpox. I spread it around the area where my bag is going to stick to.

If I'm not showering and just changing my bag, some calamine on the end of a wipe is a great cleaning fluid too, getting rid of any leftover adhesive. It's slightly astringent and soothes any redness, it creates a barrier over the skin that protects it from further damage, and when it dries it's slightly powdery, creating a great surface for the bag to stick to. I find that the bag sticks much better on skin that's been treated with calamine lotion, and that it doesn't gap. Combined with stomahesive around the edge of my stoma, I find I have a good barrier and a great seal that lasts much longer than other methods I've tried, and really feels more secure and less itchy.

If I'm in a good mood, while I'm cleaning myself and applying my new bag, I'll sing "Sweet Calamine" to the tune by Neil Diamond.

If I'm feeling compassionate, I make sure that there's no one else in the house beforehand.


                    





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!

Poem To My Stoma

I wrote this little poem in my hospital bed, just a couple of days after the operation where my ileostomy was fitted, (maintaining the traditional connection between poetry and morphine).

To My Stoma:

Today I learned
That if I wish to survive
I have to expose
A little of my inside to the outside.

This is required
Even when all that comes out
Is shit.

Stoma Stigma and Cancer

I've had an eventful month.

On Friday 19th September I was at work. That evening on the way home, I nipped in to the GP for the third time about the vicious aches and pains I'd been getting in my gut. I'd been several times before and been given antibiotics for suspected diverticulitis. These hadn't worked.

This time I had a locum GP, and in the way of the newly qualified person, he gave me a really thorough examination. Thanks to his particular attentiveness, by the end of the session, I'd been booked into the surgical assessment unit. "Pick up some pyjamas and get yourself up there". Of course the first thing I picked up was my mobile phone. No way was I going to be stuck in hospital over the weekend without twitter and facebook!

By Monday I'd had my scans and tests and was underneath a huddle of sweaty anaesthetists pressing on my throat and watching my consciousness evaporate.

It turns out my aches, pains and brain fog I've been getting over the last 3 months or so had been caused by a cancerous tumour in my bowel, about 7 cm long by 8 in diameter. This was whipped out, before I really understood it was even there, along with 10 inches of bowel that it had blocked.

Because the ends of my bowel were too infected to tie back together, I had an ileostostomy fitted. An ileostomy basically brings the now loose ends of your your bowel to a hole made in the surface of your stomach, so that you defecate through this new hole rather than out of your bum. (I am talking shit here, and there's no polite way to put it!).

After a few days of morphine, catheters and cannulas, I'm back out of hospital now and on the road to recovery. There's no sign of any further cancers, and soon I'll be embarking on a 6 month course of precautionary chemotherapy to improve the odds of making sure that no cancers return.

The signs that anything has happened are the scar that runs down my stomach and across my belly button, that is healing nicely, and the skin-coloured bag that sits on the right hand side of my belly and occasionally farts or gurgles.

I empty this stoma bag by kneeling in front of my toilet and unfastening a flap at the bottom, the faeces comes out as a rich brown semi-liquid. As well as emptying these bags, I change them every couple of days. There are occasional inconveniences - such as leaks, and this morning when I jumped out of bed and rushed downstairs to answer the phone, the bag actually burst (DISASTER!). As far as I can see this is effectively 'the worst that can happen', and a bucket, cloth and some disinfectant soon sorted out the problem. Worse things happen at sea.

Answering the phone at my own pace when I feel fully ready is my new strategy.

The advantages of the stoma massively outweigh ALL the inconveniences. The first meal I had when I got back from hospital was a STEAK SANDWICH. I haven't been able to eat steak for at least 5 or 6 years. I'm now eating all kinds of food I could never have dreamed of eating before, and I don't know if it's my imagination, but food actually seems to taste better.

Frankly I'm really pleased with it. I'm calling it my 'bag for life', because it does just that; keep me alive. It has got rid of the pain, it is enriching my eating experience.

About 3 days after mine was fitted, I was lieing in my hospital bed. A tall, strong man in his 70s had been admitted into the bed next to me, and I heard the doctor discussing his case with him and his wife: he had a very similar issue to me, a blockage that needed to be removed in his bowel. "We'll need to give him a stoma bag". "That will NEVER happen" said his wife, her voice trembling in that moment, that the man she loved, a man of strength and dignity might need to use such a device, even though it was clear the only alternative would be death. This moment of acute personal love and fear really brought home to me the level of stigma that still exists around colostomies, ileostomies and stomata.

Social stigma and fear like this about devices that actually help us live definitely don't help people who have quite enough to face up to dealing with pain and surgery. When the doctors had gone, I talked to both of them about my own stoma, and tried to show how simple and practical it was for me; that it was not so awful.

I heard Lynda Bellingham discussing her own bowel cancer on Radio 4, right around the time I was in hospital myself pointing out that the British "Don't do cancer and don't do poo". We need to change this. As the mystics say: "No mud, no lotus".

Looking at the websites and brochures brings home that 90% of the technologies around ostomies are based on concealment - there are all kinds of elaborate methods of making these devices invisible and inoffensive, as if the ostomy is something to hide away, a dark secret, something to feel ashamed and embarrassed by.

This however is changing: Having got my own stoma, I  started searching twitter for anyone else in the same situation. Turns out there's a small but lively underground movement of 'ostomates' (like the 'Ileo Atlas') who share tips and problems, and who even photograph and share their stoma pouches (I've taken one of Maggie Baldwin from the 'Stomawise' website) and one of Jason McIntosh from Awstomy. On twitter there's a whole hashtagful, under #getyourbellyout.

I'm massively in awe of these people. They straight away made me feel better about my own stoma, and by being so open they are helping lots of other people too. I'm planning at some point to take my own stoma photo to share too. I think it will be a good step for me to take, so watch this space! When people build communities together to resist and challenge stigma, something powerful is happening.

I've also found a few collections of quite colourful and funky stoma pouches. These seem a lot more fun than the bland flesh-tone ones. I don't know yet if I'd be able to get these more groovy pouches on prescription!

The history of the stoma is really fascinating. One really key fact is that the surgeons imagination tended to stop at the surgery. It was the people with stomas themselves who advanced the technologies of the pouch to what they are today, making them into something that people can live with practically in everyday life.

And I suppose this is what human beings keep doing. We adapt ourselves to circumstances, find new ways to live, and by doing so, find new ways to create our own resistance to some of those prevailing social fears about shit and cancer.

I've had my stoma for about 3 weeks, so I am still learning more about it, and about all the people I never really thought about before, who have great lives because they have stomas. I'll keep blogging to share what I'm learning. I'd love to hear your stories too!