I’ve been a bit shy about sharing a photograph of my stoma. It’s a bit like showing someone your bum hole!! But I know how much it helped me to see other people’s stomas before I had my surgery, so here it is!
It may not be pretty but it has changed my life. Because of my stoma I no longer have pain, diarrhoea or bleeding. I am off all medication for the first time in ten years and I’m learning to live a new life!
Thank you stoma!!
Sam xx
15 years ago today I met my amazing husband Timm in the Leadmill when my friend told him ‘my mate fancies you’
15 years and 3 kids later and the rest is history. Timm you are my best friend, I love you more than ever. You make me so happy and I couldn’t imagine life without you. You are awesome!
I’m so glad to be Mrs Cleasby xxx
Love Sam xx
Last night I got a Facebook message from the lovely Luke Baker from Dead Sons. It was out of the blue and I was a little surprised, but when I read it I cried, then snorted, then laughed, then blushed. A lot. I know Luke, as Timm is involved with Dead Sons but I applaud any man brave enough to email me to tell me Im wrong…
Photo by Timm Cleasby – The Picture Foundry
As I have blogged already, I feel that my confidence and self esteem have taken a knock since I had my surgery, I was saying to another friend recently that I worry my bag defines me at the minute and this message made me remember that it doesn’t. It feels all encompassing right now, but it isn’t me. Its just an attachment.
If I ever needed a bit of a confidence boost, it is now. And the following message made me feel so much better and reminded me of my old self…
“Hey Sam!
I always read your blogs and one thing i noticed is that your more recent ones have been way more positive! Thats ace! I hope you’re well and i hope Timm is looking after you! Im glad that it seems your making a rubbishy situation into something really interesting and a focal point for thought!
There was one I read a few weeks back and I meant to message you off the back of it! I just read your one about poo and it reminded me that I had something to say!!! It must have been one when you were feeling pretty rubbish and down and its how you didnt feel yourself and maybe not as attractive.
It struck a bit of a response in me and dragged me away from writing turkish pop songs but it basically got me thinking, I go in to town and see girls my age strutting there stuff, dolled up to the nines, when in absolute honesty, i think… if only they knew. I just want you to know, you knock blocks out of most women Sam! Stoma, no stoma, you’re an absolute babe!
Timm knows that (obviously), and even a group of young’uns who think they can play instruments think that! It just got me thinking is all, how can a woman so full of confidence, attractive and so fun be down about this! When the situation, as crappy as it may seems, that she’s writing about, doesn’t one bit, change who she is!
Anyway, ive said my piece now! Also, I just want you to know, this wasnt written with empathy or feeling sorry… more just like, shes wrong and id like to tell her that shes wrong, cos i think shes fucking ace! xxx”
Our confidence and self esteem come from within, not from the acceptance or compliments of others, but man, when you are feeling shit they sure do help!!
You can buy the single Gasoline by Dead Sons from iTunes here.
Love Sam xx
Just found out its World Ostomy Day!!!
Happy World Ostomy Day!!!
Love Sam xxx
If you read my blog or know me at all, you will know I talk a lot about poo… Some may say I talk shit, but we’ll overlook that! I started the blog as I wanted to stop poo being a taboo, to talk about Ulcerative Colitis and IBD. Over 180,000 people in the UK have either Crohns or Colitis yet it is not something discussed very often. Now I have my stoma, I talk a lot about Ostomies and what its like to have a bag. Over 100,000 people in the UK have some type of ostomy, yet again as a nation we just don’t discuss it.
Since starting the blog I have been shocked at the amount of readers I have, in September alone I had over 13,000 views of the site. I receive so many emails, messages and comments about the site and all have been very positive. I am delighted, if not a little shocked, at how popular the blog has become. When I share my blog on Facebook and twitter, many friends share it with their friends. This is lovely and very much appreciated, it really means a lot.
So I thought it would be good to get the blog out to a wider audience. I tweeted, messaged and emailed a lot of people in the public eye including several magazines and though the feedback I have is good, no one seems to want to publicise the blog or the subject of poo. It leaves me wondering why this is? My viewing figures show that people want to read about the subject so why are people in the public eye so shy of promoting health awareness when it comes to poo? Is it embarrassment? Or do they think that the general public don’t want to read about poo?
I emailed a LOT of magazines including a journalist who sent a PR request out for ‘women in their 30s who started an inspiring blog this year about a life changing event’. It seemed perfect! But though the journalist thought my story was interesting and inspiring, it wasn’t right for the magazine.
Now I don’t want to seem big headed, and I really don’t expect every journalist in the land to raise their hands in awe and think my story is the best thing ever!! But it does surprise me that no one seems to want to cover the subject. I have asked a number of people who I know, who are in the public eye if they would share the blog on Facebook or twitter and Im not getting anywhere with that either.
I *know* that poo is a taboo subject with some people, but when hundreds of thousands of people in the UK are suffering from the same diseases or living with a stoma, I just want to speak openly and honestly about it. When you have these things it can feel very lonely and its easy to feel isolated so it was so important to me to get out in the open and start talking. What I have gone through and what Im still going through is rubbish, but it shouldn’t be embarrassing to discuss it. Yes, I had a disease that involved my arse and spent ten years with diarrhoea. Yes, I now have a stoma, I wear an ileostomy bag. At times I struggle with these things, but talking about it just makes things easier. I do not need the media to promote the idea that this is embarrassing or not to be spoken about.
Or even worse, promoting ostomies as something disgusting and horrific. The Cincinnatti Police department recently started an initiative to lower the gun crime rate by showing teenagers photographs of people with colostomy bags to show the possible affects of being shot. “You’re not killed, but you’re walking around with a colostomy bag and that’s just not the way to get a girl’s attention by limping down Warsaw Avenue with a colostomy bag,” said Lt. Joe Richardson.
Well fuck you Lt. Richardson, I guarantee you that my stoma doesn’t stop me getting attention from the opposite sex. My stoma doesn’t take away my sexuality. I’d rather date someone with a stoma than someone who is ignorant.
Their message was that having a bag is the most unattractive thing that could happen to you. A news report actually said the police showed teens “gruesome photos of people with colostomy bags” It promotes the thoughts that if you have a stoma, you are unattractive, smelly and you should be ashamed of the fact. Myths like these arise because of campaigns like the Cincinnati Police Departments. By portraying an ostomy as a tragic and gruesome way to live out the rest of your life, it continues the stigma surrounding stomas and discourages people with ostomies from speaking about their condition without shame publicly.
Where are the stories of inspiration? Where are the stories of people feeling beautiful, empowered and proud? Having a stoma means you were in a situation that meant this drastic, life altering surgery was your best chance of having a life without pain. For many it is emergency surgery done to save lives. I think people who have been through this deserve to be celebrated not shamed or ignored.
Obviously it would be lovely for people to share my story and my blog, but if you don’t want to do that – share someone else’s, or just don’t be afraid to discuss poo and illness. One thing that many people have told me is that after reading and discussing or sharing my blog, they learnt that someone they know has IBD or a stoma. It surprises me that once you start talking then others feel comfortable enough to share their experiences too.
After I started this blog I got an email from my cousin who told me that he too has ulcerative colitis. He lives quite far away from me and I don’t see him often but I couldn’t believe a family member had the same disease as me and we didn’t know about it! That no one in our families had spoken about it and connected that we had the same thing!
I had a person come up to me in the street and say ‘Sam!!! I have a bad ass too!!!!’ The power of blogging, eh?!!
I write this blog as I want to share my experiences to help others and to get people talking. Please help me do that by sharing this post and letting me know if it helps you or someone you know.
Many thanks
Sam xx
I am still recovering well, physically my strength is returning though I still feel very tired. Im able to do more now, cooking and cleaning and have developed a terrible nesting instinct! Honestly its like I am 9 months pregnant, I have an urge to rearrange all the rooms, organise and declutter the world! This means my house is now worse than it was before as there are piles and stacks of ‘stuff’ everywhere!
I think now that I am recovering physically that my mind is working overtime and mentally I am struggling. Im over thinking things and at times just feeling really sad. Im sad that my life revolves around this bag. I spend so many hours a day in cleaning, emptying, changing, washing, worrying… I have never been the sort of person who spends hours getting ready so it feels odd to spend so much time on myself.
I spoke to a friend yesterday about the blog and how so many people had told me that it was helping them, and I was worried about posting about the bad days as I wanted it to be about positivity. She told me that she didn’t think my blog was about positivity, it was about honesty. And being honest is talking about the downs as well as the ups. She also reminded me that a blog that was always hyper happy comes across as smug!! So I thought Id write a bit today about how Im feeling.
My sleeping patterns are still all over the place, some nights I sleep well, others the insomnia kicks in and I just can’t sleep at all. Im also getting up once or twice in the night to empty my bag. A friend told me that our minds get into habits and it will take time to break those habits. From June till the end of September I was on Prednisolone and the meds made me be unable to sleep and so for all that time I was taking sleeping tablets. So I know that its going to take time for my mind and body to readjust to sleeping without any drugs in my system.
But in the middle of the night, when everyone else is sleeping and the house is silent, I sit and overthink… These thoughts tend not to be positive ones. I feel sorry for myself, a big pity party in my honour. I sat the other night at 4am weeping at the loss of my ‘normal’ life. Mourning the loss of a life that didn’t involve wearing an ileostomy bag and having to (literally) deal with shit every day. I sat there wishing I could rewind time and go back to before my operation. I cried about how my body looks and feels, that Im weak and tired and that I have the scar and this stoma, this weird looking thing on my stomach that spews waste and I have no control over it. I feel sad that feeling unattractive affects how I feel around my husband. I feel devastated that my kids still avoid cuddling me as they don’t like the stoma and are worried about hurting me. I feel scared that the course of my life has changed so drastically and that it won’t ever be the same again.
When the sun comes up it also lightens my worries, its a lot easier to be upbeat during the day. I talk to Timm a lot and to my friend Caroline, I know I can talk to them openly and honestly and I know that talking helps. The old saying of a problem shared is a problem halved is so true. Im not asking for an answer or a solution to the problems, but saying them out loud makes me feel that I can overcome them and that I have support.
At times when Im not feeling down I can look at things logically, I know that when I want to rewind my life or want my ‘normal’ life back, that actually before the op I was ill. I was so sick, my bowel was ruling my life. I was going to the toilet 10-15 times a day and bleeding constantly. I was one the highest doses of meds and wasn’t responding at all. If I hadn’t had the surgery I believe I would still be in hospital, I would have had to go onto drugs like Infliximab that carry such awful side effects.
I know that this surgery and my annoying little stoma has saved my life, though it is difficult, it has set me on a road to recovery, a road to a new life without pain, without bleeding and without medication. Though I still feel that I spend a lot of time emptying and changing my bags, I have to remind myself that before the surgery I sometimes lost control of my bowels. That was the most humiliating and devastating part of my Ulcerative Colitis. Now I don’t have that worry! Before the surgery I was in pain pretty much all the time, now I have no pain. Before, I was bleeding so much from my bum that at times I had to wear a pad, now I have no bleeding at all.
I have a few friends who are going through really tough times at the minute, all in totally different ways but equally tough. It makes me think about life and the challenges we face during our lives. When I was younger and Id read about someone facing illness or the death of a loved one, I’d think ‘how do they cope?!!’ – I now realise that there isn’t an alternative to ‘coping’ – Coping is just putting one foot in front of the other, taking each day at a time and accepting that sometimes life is shit, things happen that are not fair, that situations feel so huge and overwhelming that all you can do is sit and weep.
Sitting and weeping is a necessary process, we need to express our pain and let out our frustrations. Then we get up, brush ourselves off and keep going. I think it is so important to have people to talk to, this blog is cathartic for me, I feel that writing all my feelings here allows me to release them. Talking is key, whether it is a partner, family, friends or a councillor. I think if we can talk things through and be open about our feelings it really helps. Giving a voice to your worries takes the power away from them. We all know that we can take a concern and make it bigger and badder in our heads than it really is, speaking about them with someone you trust deflates the worry and I swear it will make you feel better!
Its not about ‘getting over’ a tough time, its about learning to live with it and that is what I will do, I will accept the bad days and sometimes Ill sit and weep, but I will keep going and learn to live with my stoma.
Love Sam xx
Wow! What a difference a month makes! Four weeks ago today I had my surgery, I had my large bowel removed in a subtotal colectomy and an end ileostomy formed.
Four weeks ago about now I was being taken to the HDU, I was covered in wires, drips and tubes. It was a scary day and a month on I think I’m still a bit in shock that it actually happened.
In the past four weeks there’s been ups and downs, good days and bad. On the good days I’m thankful that I no longer have ulcerative colitis, that Im not on any medication and that my life can begin again. On bad days I feel sorry for myself. I feel angry that this had to happen to me and sad that I have this bloody bag on me all the time.
The weekend was fantastic. Definitely good days. On Saturday my best friends Caroline and Jamie were round and we had a work day planning all the exciting things we are doing in the next year with our arts group Responsible Fishing – it felt great to be getting back to some work and then we ended the evening with food, wine, a fire and a film.
Sunday we went to my mums for dinner, my friends, Aunty and cousins joined us. Mum made her amazing curries and we had a lovely day eating, drinking and laughing. It’s my first curry since the op, so I was terrified it was going to react badly with my stoma. My mum is from Aizawl, near India and so family curry days are a big part of our lives. I can report that my stoma likes beef curry, chicken biryani and dahl!!!
My friend Corinne (aka Motherscuffer) had her baby this weekend which was huge cause for celebration! I haven’t met her newest son Arthur yet but I can’t wait to see him for a squeeze!!!
Yesterday I had trouble with my bag leaking. And then when I was trying to change it, it kept ‘going off’. There’s no muscle in my stoma and so I have no control over when output (poo to you and me) comes out. Yesterday it was bad timing on when I changed it and EVERY time I cleaned up, put on the powder and barrier and then tried to put a bag on it ‘went off’. It was really frustrating and took me 45 minutes ending in me crying and feeling very down.
I didn’t sleep well last night. I’m off the steroids and no longer taking the sleeping tablets. But it was the fear off leaking in bed that kept me up. Timm told me it was fine, to sleep and if anything happened he’d deal with it all. He is fab and not at all squeamish with the whole thing which really helps but every time I was about to drop off, I’d imagine I was leaking and wake up. Very frustrating as I was telling myself to sleep, that it probably wouldn’t lean but if it did, it would be all ok,but my mind just wouldn’t accept that!
I’ve seen my stoma nurse today who is helping me try different bags to get my confidence back up and to get a bag that works for me. The problem is that my stoma is very close to both my belly button and my scar, I also have changes to my skin where the scars are pulling it inwards so I have dips in my stomach.
These things mean that it’s quite awkward to fit the base plate to my skin and that I have to fill the dips with paste. This means that changing my bag is stressful and time consuming. It’s really frustrating and makes me worry about how Ill get on with it in the coming months. I’m worried about working, I run a photography company with Timm and I worry that all the pressure is on him. I just hope things will get easier.
I’m recovering really well though. My wound which is around 6 inches long that 4 weeks ago was opened up and allowed surgeons to have a good rummage around is closed and just looks like a red line with dots around it (the staples marks!) My stoma is healing really well. I’m off ALL meds which just feels amazing!! And I’m starting to get my strength and stamina back.
I still have to take it really easy, one task can mean an hours nap but its great to be back on my feet and to gain back a little independence. I still rely on Timm a lot but its nice to be able to make tea for the kids now and again or to do little things around the house and garden.
We have a few large apple trees in the garden and tonight I was out with Timm collecting all the wind falls. I did have to sit on the ground but it was fab to be getting out and doing. We have soooooo many apples so were planning a lot if apple based dishes and more excitingly cider!!!
My body has healed so well over the past four weeks and I know it’s going to get better each day now. Though I sometimes feel emotional, angry and upset I keep trying to stay positive, be mindful of all the good things in my life and look to the future.
Because four weeks ago I was cured of ulcerative colitis, the disease that rules my life for ten years. And so for that I am truly grateful.
Love Sam xx