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India with an ostomy bag

In November last year, I did something ridiculous, like really, really stupid.  I can’t believe I actually did it! Two weeks after having a MASSIVE double hernia operation that cut me from sternum to pelvis, fixing an incisional hernia that had come out and got twisted and stuck and a parastomal hernia that involved completely resiting my stoma, I went traveling to India.

Do not try this at home! I am a big fan of travel and your illness shouldn’t stop you doing the things you want to, but two weeks after major surgery is a bit flipping moronic to be honest!!

The surgery was an emergency, I knew I had the hernias and there was an op to be planned for later in the year, but one day I sat on my bed and all of a sudden my hernia in my middle just fell forward and stuck there and was AGONY.  I could barely breathe, I called my husband and told him to get home from work, I knew something bad had happened.  I got to hospital and was sent straight for scans where they told me that I needed an emergency surgery.

It was scary as hell, but what was playing on my mind was that we had a trip to India booked for two weeks time.  My grandfather passed away last year and as a family we had planned a huge trip to scatter his ashes in my grandmother’s hometown.  He was a goalkeeper as a young man and the local football team had planned a memorial service to him with members of my family playing a game against them!! It was a three week trip that I couldn’t comprehend as I couldn’t even walk, but I knew I had to make it.

And you know what? I am so glad I did.  It was one of the most beautiful and soul warming times of my life, twenty odd family coming together and remembering, singing, laughing, crying.  Being there with my grandmother and my kids was so special, it is something I will never forget.

Was it tough? Oh, hell yes.  My surgeon allowed me to go but I had to give myself blood thinning injections every day for the whole time we were away.  I could barely stand let alone walk and so we got a wheelchair. I was on painkillers and all manner of meds and was high as a kite some of the time.  I was exhausted and there were times when I slept where I fell.  But luckily I had my awesome Timm and the kids right by me, they pushed my chair, they held my hand when I had to inject myself, they let me rest and had fun with me when I was awake, they made it possible and I am so grateful.

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So the trip itself, we flew to Delhi where we met up with a cousin who looked after us whilst we were there and took us all over this breathtaking city.  We had a day trip to the Taj Mahal (in a wheelchair!) and we explored some amazing sites.  It was hot, dusty, sometimes smelly and quite overwhelming but it was an experience.  As a bolshy feminist woman, I have to say that Delhi isn’t my favourite spot, I found most men either dismissive of me, or aggressively suggestive and I found that really difficult.  It’s the only place I have ever been where I felt that I couldn’t walk down the road on my own, there was a point where I felt so uncomfortable by a group of men surrounding me that I latched on to my cousin’s male friend as though he was my partner.  That doesn’t sit well with me and I hated that I felt so powerless and vulnerable.

india with an ostomy taj mahal in a wheelchair sam cleasby travel blog

From Delhi, we flew to Goa for a week’s relaxation in the sun and it was heavenly! Goa (and India in general) is not wheelchair friendly, accessibility is not a key feature in anywhere we went and if nothing else, it made me appreciate living in a country where at least we are trying!  Goa also gave me chance to wear my awesome cat swimming costume from Vanilla Blush, who make ostomy underwear and swimwear.

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It was beautiful and I would love to go back.  In Goa I had an issue with my stoma that got a bit scary, it sank in completely and disappeared into my body meaning that every bag was leaking everywhere, that meant my skin was red raw and bleeding and I couldn’t move as bags were literally slipping straight off me.  In a 24 hour period, I used 12 ostomy bags!!!

I was in a panic, but I texted my stoma nurse who calmed my nerves a little and advised me to take lots of loperamide and ensure I wasn’t getting dehydrated by taking dialyrites.  I felt so shit, here we were in this amazing location and I couldn’t leave the bathroom!

Luckily Timm came to my rescue.  He took the mattress from a single bed and dragged it onto the balcony, he layered it up with bed mats, towels and pillows and made me a day bed where I laid looking out over the most perfect beach and sky, bag off, catching poop in a tissue and getting air to my skin.  It was a moment where I could have felt really sorry for myself, but instead I thought about how my view could have been a hospital bay and if recovery at this point meant laying in front of this vista then life couldn’t be too bad!

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From Goa we headed to our family home in Mizoram, Aizawl to a fabulous family welcome.  Family had flown in from all over to congregate in this very special place to celebrate a very special man.  From start to finish, it was almost overwhelming in it’s wonder, the football match was emotional beyond belief but watching his ashes hit the pitch where he had played 70 years earlier was astounding.

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The family parties, food, singing, laughing, crying, the sites and sounds, the connection and the wonder was all pretty much the best experience of my life.  Sitting with my cousins in a land so far from our own homes but seeing where our grandmother was born was awe inspiring.  Seeing so many family members coming together to fulfil my grandfather’s dying wish was spectacular.

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Ostomy wise, there was a rather horrific hiccup.  You know the warnings of Delhi Belly? Well, we got Aizawl Arse… I have no idea if it was the food, water, a bug or all of the above but I got the worst belly of my life.  I sat on a toilet with the bottom of my bag open into the loo and watched poo run out of it like it was coming from a tap for about 25 minutes…

It was at this point where I was glad I was a seasoned stoma owner as I think I would have panicked if not.  I knew that if this passed in 24 hours then it was travellers tummy and I would be fine, but I knew that at the rate I was losing output that it would be dehydration that would be the ruin of me, and so I made up 2 litre bottles filled with dialarytes and sipped on the constantly, I was sat on the toilet drinking them, gagging, puking and shitting but I kept going.

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Dehydration is so underrated, especially if you have a stoma, it isn’t about being a bit thirsty, it is about your body shutting down because it doesn’t have enough hydration.  Remember that water is not the best thing in these situations, a rehydration solution is needed, if all else fails, it is sugar and salt in water or even Coca Cola! Just drink, little, often, the whole way through.  It was the worst 24 hours ever, that bathroom was a hellish place but luckily it soon passed and my litres of rehydration did the trick and I was straight back up on my feet!

Timm got it the following day and he said he has never in his life been so ill, he wouldn’t listen to me about drinking and ended up being vaguely ill for weeks.  I honestly think it is because he puked and shat out ever electrolyte in his body!

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Travelling with an ostomy so soon after surgery means being hyper aware of your body and your needs.  I knew I needed to listen when I had to rest, I ate well and drank plenty, I made sure I avoided local water and ice and rinsed fruit in bottled water.  I enjoyed myself but also allowed myself time to recover.

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My other advice is to be prepared.  This. is. vital.

Ostomy bags – take at least twice as many as you think you will need.  I usually change my bag every 2 or 3 days at home, but planned for once a day for the trip and then doubled it.  If I hadn’t, then the Goa experience of 12 bags in one day would have screwed me completely!!!

Plenty of supplies – dry wipes, any creams, pastes, rings etc that you use. Pack anything you COULD need, so if you occasionally use paste but not often, definitely pack it.

Medication – All your usual medication, in it’s original packaging with either a letter from your doctor or your repeat prescription.

Ostomy Card – I got one of these travel cards from my stoma nurse, it has an explanation of your stoma in several different languages.  We realised that it was in Hindi and so used google translate to print it out in the native language of the country we were visiting.

Lots of waste bags – obviously needed for bag changes, but also good for sticking soiled clothes in till you can get them washed.

Dialaryte (or any other type of rehydration powders) – LOTS of them! They are small and easy to pack in and can be a literal life saver!!!

A readiness to listen to your body and a sense of humour!

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I look back now and I can’t believe we actually managed this, but though it was crazy, I have to say, I am so pleased we did and I am proud of myself.

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Love Sam xx

Getting back to what you love – reconnecting with nature

One of my fondest memories as a child is of my nannan’s garden. She grew flowers and plants that were beautiful, but also fruit and veg, I remember eating strawberries with her straight from the ground, our fingers and lips sticky and red with the juice.  My nannan’s garden and home was a place of love and joy, a time spent with all my cousins playing and having fun.  Even now, at almost 91, nan lives in the same house, and her garden is still filled with blooms.  I visit her every week and last week, she was saying how much she wishes she still had the energy to grow her own vegetables, but she is happy just being able to potter and look out on her plot.


When my kids were very small, we moved house to a new area that was much more rural and in our little garden, I started planting fruit and vegetables for us to eat. I had little idea what I was doing but grew easy plants such as tomatoes, peas and herbs. I loved being in the garden and really enjoyed seeing the kids eat straight from the veg patch as I had so many years before.

I love seeing them out in nature, getting dirty and having fun, the veg and plants are my joy, but for them it is just about playing and being outdoors, from mud pies to dens.  It was much easier when they were small to get them outside, now at 15, 13 and 11, it takes a little more persuasion, but once they are out, they get right back into it.

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Since those early days, I have slowly learnt more and more and grown more each year. I’m no expert and still rely heavily on gardening books and the Internet, but I feel so happy in the garden and so I just go with a trial and error tactic. The past 3 years have been tough with me not being physically strong enough to grow anything. I felt that planting things would end up as more work for Timm if I fell ill.

In January this year, I had another big surgery. I had my failing Jpouch removed, a permanent stoma formed and my butt removed.  The recovery was so hard and I couldn’t even bathe myself, I was bed bound and felt so weak.

We were in the middle of buying a house at the time that has an allotment in the garden. A dream come true but during my recovery, it became a source of immense anxiety.  I couldn’t imagine being strong enough to do the basics, let alone to plant and maintain a full allotment!

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It just seemed so unobtainable. I was so physically weak, just walking to the bathroom left me out of breath.  I was in so much pain and I felt helpless, useless and hopeless.

People told me to take one day at a time, to remember that my body was healing but that I would be stronger very soon.  I couldn’t imagine it. I could barely turn over in bed, how would I turn over an allotment’s worth of soil in the vegetable beds?

But I’m so pleased to say that here I am! My allotment is well on the way, with a lot of help from Timm with the heavier work and lots of time of seated planting and gentle, slow work, the garden is looking amazing!

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Yesterday was the hottest day of the year so far and we had a day in the lotty, it was so hot that I was in shorts and a bikini top. It’s quite private so I wasn’t worried about being overlooked, but as I worked away, I looked down at my bag and it made me realise just how far I have come.

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I am certainly not at full strength, my recovery is still continuing and I am still having some pains and niggles. I am being careful, I don’t push myself too hard and I listen to my body. But I am here doing it! It feels amazing and it makes me celebrate how far I have come.

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Four months ago, I was bed bound and could do nothing for myself, today I am up and about, getting stronger each day and making sure that I am doing the things that make me happy.

I’m being careful but I’m dog walking, I’m gardening, I’m spending more time outside in the fresh air and this is helping not only my physical health, but my mental and emotional health too.

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If you are struggling right now with poor health, just remember that things won’t always be so tough.  We have bad days, bad weeks, bad months even, but on the good days, we need to think about what will make us really happy and aim for that.

I’m a big believer that the outdoors is good for us, we need to try and get out every day.  Be it for 5 minutes sitting with the sun on your face or a walk or run.  It helps a lot when the weather is good, but being in the outdoors, especially woodland and countryside can really lift the mood.

I was reminded of the importance of this, this week, when I felt as though I had lost my kids to their computers and so we switched everything off and spent a day in the allotment.  At first they were grumpy, but very quickly, they started helping out, playing, building dens and more importantly, talking and laughing.  We are all so reliant on computers and phones, sometimes you just need to disconnect and reconnect with nature and family.

I know that can be easier said than done but today, if possible, turn off your computer, go outside and get back to something you love.

Sam xx

And then I blow dried my arse… 

There are many things I never thought I’d say, and living with IBD has given me the opportunity to say many of them. I surprise myself at times.

Since having my latest op, I am dealing with a most peculiar wound. I now have, what is commonly known amongst people who’ve had this done, as a Barbie Butt.  During surgery, the doctors removed EVERYTHING from ‘down there’, I have no colon, no rectum and no anus.  My ass is like Barbie’s… as in no holes, it is not quite so pretty though!

A few years ago, I would have never in a million years told the world this, I would have been mortified.  I would have felt embarrassed and sad and humiliated at the thought of other people knowing this.  What if that laughed at me? What if they talked behind my back? What if they thought I was gross?

These days, thanks to this blog, I share everything.  I know that I am not alone and that there are so many people going through the same things as me.  I know there a millions of people living with all manner of illnesses and disabilities that society would deem embarrassing and so I think fuck it! If me talking about taboo subjects and things that are giggle-worthy helps just one person, then I will happily blab about my life.

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So anyway, this Barbie Butt…

Well, I literally no longer have a bum hole, it is sewn up completely, but bum holes don’t really like being sewn up completely, it confuses the hell out of the brain and body and so it can often be difficult to heal.  It is really quite sore, it’s not very nice to sit flat on my bum, it is painful, itchy and like any wound, takes time to settle down.

I think I am quite lucky at the minute, because apart from the soreness, I have had no issues.  I know some people have an awful time and need drains, have abcesses, stitches opening and all manner of nasty problems.  My stitches are all dissolvable and the worst part has been having the district nurse look at my bum twice a week.  Some people have stitches that need to be removed, some have staples or even have the wound left open to heal from the inside out.  I can obviously only talk about my experience.

It is quite intriguing though, it is one of the first things that family or friends have asked about since the op, with one (very weird) friend asking to have a look.  It is a bit of an oddity isn’t it! I did have to get a mirror and have a peek once I got home!

I have been scouring the internet for ways to relieve the pain and discomfort of the barbie butt and then got an email from a reader in Australia called Amanda who has had the same surgery as me.  She recommended salt baths and then using a hairdryer to dry the area…

I had to try it and I have to say, it seemed to work quite well, which is how I have ended up here writing about giving my arse a blow-dry!

sam cleasby author so bad ass sheffield

I thought I would share some tips on relieving symptoms in the recovery of Barbie Butt:

Using a donut cushion or an inflatable cushion.  Some people say not to use a donut as it puts more pressure on the area, but I found it really helped.

Sleeping on your side, if possible

Keep it clean.  Shower, bathe, bidet, whatever works best for you.  Avoid soaps and scented products.

Salt baths

Using a hairdryer (on cool and low!) to dry the whole area.  You’re not going to want to be drying it with a towel and it needs to dry.

Getting some air to it! Going without pants/pyjamas at night (if possible) so the wound isn’t constantly covered and sweaty!

Speak to your nurse or doctor if you are worried about anything.

Take painkillers, keep on top of your pain levels

Give yourself a break.  You have had major surgery and need to give your body plenty of time to recover.

 

As always, I have no medical training, these ideas are what I have tried or what others have suggested.  Do speak to a professional if you are at all worried about anything to do with your wound.

 

 

Sam xx

Hello therapist, may I lay on your couch?

Ohh my little blog, my place of cathartic writing, my diary, my journal of my illness and recovery. Sometimes I forget that when I hit post, it flies out through the ether and into the laptops, tablets and phones of so many. (Currently about 15000 of you a month! WTAF?!!!)

I write for many reasons, one is to raise awareness of crohns and colitis and all the issues that surround them. On that note, today is the start of Crohns and Colitis Awareness Week!

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I want to help others down their IBD path. Being diagnosed with Crohns or Colitis is terrifying, then you have to learn so much, so quickly, you have to make decisions on taking drugs with side effects lists longer than your small intestine, perhaps face surgery and deal with life changing recovery… I’ve trodden this path and if my experience can help just one person, then I am happy.

But I also write for a much more selfish reason. I write to make myself feel better, I would write this blog if not one person read it as it is my release. The way I let out all the swirling feelings inside. My therapy.

So I thought I should thank you all, my therapist readers in countries all over the world!

As I lay on your therapy couch today I need to talk anxiety. My head is spinning at the minute, it is just constantly going, worrying, fretting, overthinking. I’m not sure how to deal with this. As I’ve said before, I tend to cover up when I’m not feeling great with loudness and guffawing. It’s easier to grin and bear it than to open up.

Perhaps I worry that I’m letting people down by not being my normal cheery self, perhaps I worry that it will put people off me, perhaps I worry that people close to me already have so much to deal with, with my poor health that adding a dose of anxiety and sadness onto it will be the straw that breaks the camels back?

And so I turn to my pages here, then embarrassment hits when I know people will read my words. On any post like this, I write never knowing if I will actually hit that post button. That button that screams ‘SHE’S NOT COPING’.

It scares me to put it out there, but it’s important for me to share because I know I’m not alone. And it actually makes me feel better to think that other people are going through tough times and I’m not some loser who can’t tough it out. It IS hard. It’s ok for me to struggle.

I don’t come from a family where weakness is the norm, we are tough, strong, gobby Northern women. It doesn’t come easily to me to have weak moments.  I am naturally quite an upbeat, cheery person and so when I am feeling sad and anxious it is such a shock, it is not something I really know how to deal with.

Though I strive to be a kind person, and I really do, I think kindness is the best quality any person can have, sometimes I slip into an easy, defensive mode.  The mode that means my friends think I am so tough.  But really inside, sometimes I just feel anything but tough.

I’m sorry this is such a down post.  I am trying really hard to work through my feelings and anxiety.  The problem is, when you don’t talk, don’t ask for help, people don’t know how to respond to you.  I don’t know if I CAN talk about it, the words stick in my throat.  I find it easier to type…

So there we go, thank you for today’s therapy session!

If you are struggling too, please don’t be a buffoon like me, talk, talk, talk… Speak to people around you, try and be open.  If you can’t do it in person, or have no one to talk to, you can always contact me.  We can have a virtual cuddle and as much as I’m not good at voicing my own anxieties, I am a very good listener and give some decent advice! If only I could take it myself!!

 

Much Love

 

Sam xxx

Pouchitis. Suspected.

No confirmation as yet through my blood tests if my inflammation markers are up and obviously I’ve not had the camera test yet but man, I’m feeling pretty dreadful. I’m on the loo 10-20 times a day and I’m so drained and exhausted.

Just so it’s clear, I haven’t been admitted to hospital, I had a few messages worrying that I was inside again. I’m being treated as an outpatient but my doctor is pushing it through as an urgent case and so fingers crossed it will be sorted soon.

I think the tiredness is the worst part. I’m up several times a night and so I’m so exhausted. I also feel like this is a big step backwards in my recovery, mentally I’m feeling a little battered. I’m trying to push through physically and emotionally but to be honest I feel pretty damn rough.

The thing that floods back as soon as I start to feel ill is guilt. I know I shouldn’t feel bad, but my illness is such a burden on those around me and I fear the day that everyone has had enough. I worry my friends and family will get sick of me being sick.

I know the feeling as I have had enough of it. Because that’s the other feeling. Self pity. Such an ugly feeling and one I generally despise but right now I feel sorry for myself. Poor me, poor my arse…

Sorry this post is such a bummer. I actually do know that I’m a lucky cow and have loads of lovely things in my life. I’m still on a high from our amazing wedding renewal and we have a honeymoon booked! An actual honeymoon with just me and Timm, no kids, no work! So I need to concentrate on getting better because in three weeks come hell or high water, I WILL be off to Lanzarote with my boy!

I think the emotional and mental side of living with a chronic illness is often overlooked. On the outside I may have painted my face with makeup and a smile, but inside it is a struggle. Logically I know I need to just buckle down and get through this dip in my recovery. I need to count my blessings and try and find the positives in life. And I do that. But sometimes you just need to lay in a dark room under a duvet and cry like a baby. Perhaps today is one of those days.

I’ll leave you with a laugh with this photo that my mother put on Facebook past night of my hen night… I thought Id escaped without any reaaaallllly embarrassing photos but it seems she was saving them up for now!!! Here’s me looking more than slightly squiffy…

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Love Sam x

Good news!

I’ve been to see my lovely consultant Mr Brown today and all is good! I have a huge grin on my face because currently my pouch is working brilliantly, my next check up will be in May 2015 and there is talk of discharging me… I have been under a consultant since 2004!!!

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I am 12 weeks post j pouch surgery and I’m going to the loo about 4-5 times a day (which is awesome in case you were wondering!), I know that may sound a lot for a normal person but for a pouchee it is pretty damn good. I have little urgency and can hold it in when I need to go to the toilet. And I’m having no accidents at all! I’m eating pretty much what I want with a few exceptions.

I still have times of massive fatigue, especially if I allow myself to get dehydrated which is really easy to do these days as I have no colon. But as long as I keep my fluid and salt intake up, I’m doing really well. It feels amazing as since the operation I have had many many times where I questioned why I had done it.

Life seemed so much tougher than with my ileostomy and I thought I’d made a massive mistake. But since my last admission to hospital and the big dose of antibiotics, everything has improved hugely! I know life will never be ‘normal’ again, but currently all is good in the world and I couldn’t be more relieved.

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So today I am feeling blessed and happy. Thank you Mr Brown for making my life so much better.

Love Sam x

Thank you to the very awesome RoofTopsNYC for my brilliantly Love is Love tshirt xxx

Tramlines – what a difference a year makes

Tramlines is a city centre festival in the great city of Sheffield, it’s an amazing thing and my lovely husband Timm is one of the festival directors and the production director so each year I’m lucky enough to get a little pass that allows me to hang out backstage and have a generally fantastic time.

But it also serves for me as a fixed point in time that makes me realise how far I have come in a year. You see, at last years festival I was ill. I was 5 months into the worst flare up of my life but I was trying my hardest to hide it.

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This photo was last year, I felt like death warmed up…

I was on a lot of meds and in my heart, I knew this time felt different. I was bleeding constantly, I had to wear pads in my pants as there was just so much blood. My stomach was agony and I was running to the toilet every few minutes. I didn’t feel up to going to be honest, but felt it was important to try and be normal and to show Timm my support.

I remember standing near the loos after yet another mad dash, doing as fast a walk as I could get away with, without looking insane to the toilets. I was with Timm’s sister Nancy and friend Michelle and I was telling the that things weren’t good. I’m close to Nancy and she knows everything about my illness and is a massive supporter of me and this blog.

I was telling her about the possibilities of future surgery, I remember quite naively saying that after the second op they just join everything back up and I’d live a normal life pooing just a little every time I had a wee! It all sounded so simple on paper and easy to describe, I don’t think I’d put my emotions into it and thought about the emotional and mental changes that would occur.

The whole conversation was very much hypothetical, I knew about the surgeries but had no idea that within 5 weeks of the day I would be on the operating table having my large intestine out.

So Bad Ass didn’t exist at this point, I was still quite embarrassed a lot of the time about my disease. Family and close friends knew but I kept it quite under wraps. I spent the weekend throat tightingly close to tears as I just felt so poorly and under so much pressure (from myself) to keep it together.

So roll it forward one year and I just can’t believe all that has happened in the last 12 months! This years Tramlines has been amazing. I stood in pretty much the same spot with Nancy and Michelle thinking how good it felt to be on only one medication (loperamide) that has NO side effects that cause me to get a big swollen mood face, manic episodes or total insomnia!!

A year into writing So Bad Ass, pretty much everyone knows what I have been through and so I felt no pressure to hide anything. I got so many amazing people coming up to me to tell me they read my blog and love it. It was quite emotional to know that I have made a teeny tiny difference to peoples lives.

Friends, Timm’s work colleagues, total flipping strangers(!!!) were coming up to me all weekend to tell me what So Bad Ass means to them and I just can’t tell you how much that means to me. To know that my little blog is being read, shared and is helping others makes me feel humbled and just blown away. Thank you.

One year on, I have learnt about my own strength, I’ve found a confidence I didn’t believe I possessed and though my health isn’t perfect and I’m still on a road to recovery from my j pouch surgery, I feel good!!

I watched lots of amazing bands, hung out with too many awesome people to name, laughed with fantastic friends till my stomach hurt, spent the weekend with my three kids hanging out with me, watched Everly Pregnant Brothers, the best northern, ukulele, pun based band you will ever hear, on Kelham island whilst the sun set.

I jumped about and went mental whilst watching Public Enemy then met Chuck D and Flavor Flav (yeahhhhhh boiiiiiiii)

I watched a woman hang by her feet and juggle swords upside down.

I drank my body weight in gin and peach iced tea.

I saw so many friends and got to hang out with them (even if it were only briefly with some)

I felt confident and well.

I felt no shame.

I felt happy.

Thank you Tramlines for the best year so far, I had a blast!!! Who knows where my life will be in another years time?!

Here are some of my favourite photos of the weekend…

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Quick update – j pouch problems

A super quick update as I’m not up to blogging.

I’m having some problems with my pouch and so I’m going back to see my consultant tomorrow morning.

I can’t pass anything without a lot of pain, straining and basically feeling like I’m about to pass out.

Lots of pain in my belly and bottom and also passing what looks like coffee grounds which can be a sign of bleeding higher up.

I’m really exhausted and fed up but hoping that I’ll get some help tomorrow.

I’m feeling really sorry for myself right now. I’m regretting the operation and feel like my illness and recovery is just a massive burden to everyone. It all feels pretty sucky at the minute but I’m hoping that things will seem brighter soon.

Sam xx

On the mend and my first day out

It’s been six weeks post pouch surgery and since I started on the loperamide last Monday, things have improved massively.  Last week I was going to the toilet around 20 times a day and having 2-4 accidents a day which was heart breakingly depressing.  Dr Brown said I needed to figure out how much or how little of the meds to take to slow down how often I need to empty my pouch, I started high at 4 tablets which was too much, I ended up with a lot of bloating and terrible stomach pains.

I have brought it down to 1-2 tablets and this seems to be working well for me, I am now going about 5 times a day and accidents are a lot rarer! I have found that most days I am ok in the mornings as my stomach is empty but it gets worse in the evenings and so I’m taking the loperamide at tea time.

It is embarrassing to talk about this, I cringe at the thought of people knowing how it has been but this blog is about honesty and I am going to document the bad times so I can appreciate it when the good times come.  There is also a lot of bad press about j pouches, I have seen in many forums people saying they wouldn’t ever have pouch surgery as it’s too much like going back to illness with the recovery.

I still have some discomfort but I am down to just occasional pain relief rather than every 4-6 hours as I have been.

On Sunday I had my first day out. It was tough mentally, I had a little cry as I tried on forty outfits to find something I was comfortable. I’ve lost quite a bit if weight and everything just looked ODD. I’d developed a good wardrobe that worked well with my ileostomy bag but now I’ve lost my way a little. Wearing pyjamas for six weeks does that to a person!

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We had a family day out at Cliffhanger, a family activity festival in Sheffield and then on to L’eroica in Bakewell, an Italian bicycle event with music, food, drinks and general loveliness.

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It felt weird being out in public and I felt quite self conscious and a bit fearful. I was very glad to have Timm’s hand to hold, which is an odd feeling for someone like me who is usually confident and independent. But it was really lovely. A tiny bit of normality in a family day out and it lifted my spirits hugely.

Even having to use outdoor portaloos was ok. I felt the urge to go and panic washed over me a bit, but is told Timm and he just took my bags and said “go! We’ll find you!” So I set off on walking, fast enough that I wouldn’t shit myself yet nonchalant enough that I didn’t look like I was about to! It was all fine though and it felt like a little victory for me.

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It was a big step for me to be out for the day. I felt quite emotional, it just felt so good to feel like a real family after weeks of me being a patient whilst Timm cared for me and the kids. It reminded me why I have gone through the last year, that I wanted to get to a point in my life where it wasn’t all just about illness.

I still have a long way to go,but this first day out felt like a really great first step on that ladder.

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Love Sam xx

Hospital check up

I had my four week check at the hospital yesterday with my awesome surgeon Mr Brown. Everything is looking good!

At some point I need to learn when it’s not ok to make inappropriate comments though. He needed to *ahem* examine me and so a nurse was present. She was asking me to assume the usual lay on you left side, knees up position when I said “yep I’ve been here before!”
“Oh” she replied sympathetically “have you had problems and had to come in after surgery?”
“Nah I’ve just had years of this so I’m used to literally being in this position”

Anyway, Mr Brown was happy that everything seemed ok with my pouch. But when we discussed my bowel habits (actually is it still correct to say bowel habits? You know what with me missing my large bowel…) he wasn’t happy with the amount of times I’m going.

It’s currently around 15 times a day, it’s very sudden and urgent and I’m having continence issues. I’m having to wear pads to deal with that and it makes me feel like absolute shit (excuse the pun) My confidence is very low and I feel embarrassed and really fucking sad about it.

Anyhoooo Mr Brown asked how much loperamide I was taking, the answer is I’m not because no one told me I should be or prescribed anything. He wasn’t happy about that and said I should have been taking it. So he prescribed that and was hopeful that it would solve a lot of the issues I’m having, which would be AMAZING!

He then asked if I knew someone who runs a certain shop in Sheffield, I said I didn’t think so but that I did run this blog so perhaps they had read something here. He said they had told him that and so he’d better do a good job incase I wrote anything mean about him. I assured him I had only put lovely things about him!

It was a bit weird to know people are talking about this place and that it’s got back to my surgeon!! But it’s all good and I can hand on heart say, without any persuasion from him, that Mr Brown has been fantastic from the beginning. He always comes across really caring and like you are important, I’ve never felt like just a name on a sheet and his care has been amazing.

Going from 8 years at Rotherham hospital to asking to be moved to Sheffield my care had improved so much. Both the Hallamshire and Northern General (with the exception of bitch nurse from last year!) have been awesome and I can’t thank them enough.

You know you have a good doctor when both nurses and other patients have nothing but good words to say about them. When I speak to other IBD patients in Sheffield, everyone gushes about him and one nurse in hospital said “Ohhh he’s like a fine wine, he’s just getting better with age!”

So Mr Brown, if you happen across my little blog (because let’s face it, most people would DEFINITELY google themselves if they heard they’d been blogged about!!) you are doing an awesome job and I thank you from the bottom (fnarrr!) of my heart for your care over the last year.

I have to say loperamide isn’t the instant cure I was (stupidly) hoping for, it made me feel quite queasy last night and there was no impact on the amount of times I’m going to the loo. But obviously it’s something that’s going to take time to get in my system.

I had a pint of Orange juice yesterday as I was craving for it but it was not good. At least I’m assuming it was the juice! It passed thru my system in about an hour and left me on the loo about 10 times in an hour. OJ is now on my pouch kill list…

But I have to keep reminding myself that it’s early days. I’ll keep plodding on and I’m sure things will get better soon.

Love Sam x