Carers. Actual superheroes…

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People sometimes tell me I must be very strong to deal with the illness, surgery and recovery that I’ve been through over the past ten years.  The truth is that the strongest person in my house is Timm, my husband.  You see, he has dealt with everything I have been through too, but he doesn’t get the support that I do.

Timm is my carer, he looks after me every day both physically, mentally and emotionally.  Part of me HATES this, I despise the fact that my husband has to look after me in this way, I want us to be equal partners and I feel bad that he has to care for me.  But the biggest part of me has just the hugest amount of gratitude and love for the man.

Carers are superheroes in my eyes and a grossly under appreciated resource in this country.  I can’t even imagine how I would have survived the past year without Timm in my life.  Not only did he take on all the responsibilities of the kids, housework and our business, he had to become a nurse, a therapist, an advocate and an all round hero.

 

sam cleasby timm cleasby so bad ass sheffield

 

 

Whilst I was recovering from surgery, Timm was brilliant.  As I lay in bed, resting and allowing my body time to heal, he did EVERYTHING.  But now four months down the line, I’m sad to say he is still being my carer and looking after me.  As I have blogged, things are not great at the minute with my jpouch, I am going to the toilet 15+ times a day, getting up through the night several times, I have massive fatigue and mentally I am not in a great place.  And this is where being a carer gets so much harder.  It is not about a brief period of nursing, when you are a carer of someone with a chronic illness, it is a life long relationship.  And that must suck.

I write this today whilst I am sat in bed.  This morning my husband got up with the kids and sorted them for school, he then got ready for work and came up, kissed me and told me to “rest, sleep and feel better”.  Every night I am waking 3-6 times and so I never get into really deep sleep so mornings are terrible.  I am so tired all the time!  I feel drained from pooing 15 times a day, I am fatigued and have this ache deep in my joints.  Yet the worst feeling is guilt.

I feel so guilty that I am not working, we run a photography company The Picture Foundry and currently Timm is doing everything.  I feel guilt and sadness that our ‘partnership’ is very one sided at the moment.  None of this is coming from him. He has never done anything to make me feel like he is fed up with this, he is never anything but supportive and wonderful.  It is all from me, I wrote recently about chronic illness and fatigue and there I talked about a feeling of waking with a desire to take over the world, that I feel I have a million ideas and want to do EVERYTHING, but then my body reminds me that it is broken and feels like a 90 year old!

 

being a carer is hard work

 

I just wanted today’s post to be a little recognition to the people in our lives who look after us.  Being a carer for someone you love is a role thrust upon you not usually one you would choose.  It’s a special thing to have the patience to care for another person, I know that Timm would brush this off, he would make a joke and say that he does what anyone would do.  This is one of his best qualities as a carer, he jokes about it, he takes the piss out of me, it isn’t all serious, he makes me laugh when the last thing I feel like doing is laughing and always makes me remember that my illness doesn’t define me.

If you are a carer then please go take a look at Carers UK, it is a great resource for anyone in a caring role and gives some pretty interesting statistics plus help and advice. There’s a statistic that says that 1 in 8 people in the UK are carers and that saves the state £119 billion.  Take a peek at the forum to speak to other carers.

There are also support services specifically for people with IBD and their friends and family, take a look at Crohns and Colitis UK.

carers in the uk saves the state billions

 

 

I just want to thank Timm once again for being so bloody awesome, he is just the best bloke in the world and makes every single day better for me.  I don’t know how he does it and keeps all the balls up in the air, he is juggling business, family, home and my health and does it all with an amazing sense of humour, a kindness that breaks my heart and constant love and support.

sam and timm cleasby sheffield

 

Love Sam xx

 

 

Pouch issues

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If you follow me on twitter or Facebook you may have seen that I’ve been having a few problems with my j pouch recently. After everything had settled a little, I was going to the toilet around 4-5 times a day which is pretty good for a pouchee. But for the last few weeks I have gone downhill and I’m currently going to the toilet 15-20 times a day and I’m having periods of bleeding.

I’m taking 4 loperamide a day and it’s just having no effect. I went into hospital last week for a flexible sigmoidoscopy/pouchoscopy and the results came back quite normal with a tiny bit of inflammation but not enough to be causing problems. So next step is to try and figure out what us causing the problems.

I have been tested for coeliac disease and I’m awaiting the results from that. I am going back into see Mr Brown on Thursday in clinic and we will see where we go next. Through email we have discussed a little plan of a low residue diet and using fybogel and then discussing an MRI to see if there’s any inflammation elsewhere in my system and use of medication.

So there’s the medical side… From a personal perspective I am struggling. I’m feeling quite down about this setback, it’s difficult to feel like I am back to square one. I’m going to the bathroom as much as I did during a flare up before my bowel was removed! It’s tough to feel like this after a years worth of surgeries and recovery.

I have been away this weekend with the marvellous Responsible Fishing, an arts group that I work with. We put on an event called Tidal Gatherings in Sandsend with stone balancing, sand and land art. It was fantastic but dealing with running to the toilet 20 times a day was very hard work. I had an accident once and waking several times a night was exhausting both physically and emotionally.

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It makes me feel a little removed from the situation when I’m like this. Like I can’t be fully engaged with the people around me as I’m constantly thinking about my guts and where the nearest toilet is. I feel like I need to just keep going and can’t let the team down but at the same time that I’m doing a half a job. All in all I’m just feeling quite sad.

I woke early one morning from our caravan and walked with Timm and our dog out to see the sunrise. I tried to find the silver lining by thinking about how I would have missed this gorgeous sight had I not been sleeping so poorly. That early morning silence was a really lovely time with just me and the husband and it was perfect.

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I’m worrying lately that having pouch surgery was a mistake. It is so hard at the minute and I kind of miss my ileostomy bag. Though it had it’s problems it did make running for the toilet fairly defunct! I was informed that recovery from pouch surgery can take up to two years and so I suppose that I need to have some patience.

I’m still really happy under Mr Brown and the team in Sheffield. These problems are unfortunate but I do feel like I’m being heard and that I’m being cared for really well. And so I will just have to see how I go, I will update after Thursday to see what happens next.

Thanks for reading

Love Sam xx

Nearly doesn't mean anything at all!

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Reason 3,459 that my husband is awesome.

Timm – “how was your evening?”

Me – “not great. I nearly crapped myself at the supermarket”

Timm – “Nearly?”

Me – “yeah, I was ok and got to the loo but I’m feeling pretty gutted and upset about it”

Timm – “Nearly doesn’t mean anything at all!! Nearly means you didn’t crap yourself. Hooray! You know you don’t get sent to prison for nearly robbing a bank! Nearly means nothing.”

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I do love that boy an awful lot.

Sam x

Butt Burn

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Butt Burn… can you say those words without a little snigger?  I’m not talking about having a bit of a dodgy tum after a curry, I’m talking about the pain and discomfort that people with a j pouch suffer from.  Let me explain a bit more.

When you have had your large intestine removed, a pouch is formed from your small intestine and this is attached to your rectum. This means your digestive path is an awful lot shorter than usual and the acid from your stomach may not be fully neutralised by the time it reaches your bum. Your large intestine is also responsible for removing the water from the food we eat, without it, your poo becomes liquid rather than a solid poo. That combined with the smaller ‘storage’ space inside means that most people with a pouch go to the toilet multiple times a day.

The combination of these things can result in butt burn. A severe irritation of the skin around your bum that results in a painful burning sensation.

So what can you do about butt burn?

Well firstly many people recommend flushable, sensitive toddler wipes instead of toilet paper. The skin is very delicate and if you are going at least 5-6 times a day with a liquid poo, the amount of rubbing and wiping can further irritate the skin.

Some people use a bidet to wash themselves after a poo. For me this seems like too much of a faff. But when it’s been severe, I have gone and sat on the bidet for relief! I have also heard that some dry their bums off with a hair dryer. That’s not one I have tried but if it works for you, then go for it!

Barrier Creams are my weapon of choice. I was given the comfeel barrier cream by Coloplast when I left hospital but also use Metanium and Bepanthen which are two nappy rash creams that help. Metanium is very good, but it’s very yellow and I find it stains my skin and clothes a bit. Bepanthen is fab too, but I do find it a little too greasy. Which is why I end up using a combination!

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Controlling butt burn through diet is not as simple as you’d imagine. It is not a case of if you eat spicy food, you will get the burn. I can eat Indian food absolutely fine, but eating oranges is agony (I still eat them now and again though as I love them!) Certain foods can cause problems one time but be fine the next and so it’s important to not remove one food from your diet forever as it can be changeable.

Some people recommend eating a lot of carbs (bread, pasta etc) to bulk up the stool. The thinking behind this is that the thicker the stool, the less wiping and the less irritation.

“A sitz bath or hip bath is a bath in which a person sits in water up to the hips. It is used to relieve discomfort and pain in the lower part of the body. It works by keeping the affected area clean and increasing the flow of blood to it.

A sitz bath may be created simply by filling a bathtub with some water and sitting in it for a few minutes. Alternatively, a large basin can be used. There are also special devices that fit into toilet bowls. Sitz baths may either be warm or cool. Some people find alternating between hot and cold water soothing. Sitz baths may be filled with just water, or substances such as salt, baking soda or vinegar can be added.”

The above comes from Wikipedia I haven’t used a sitz bath or bowl, but a proper bath is always quite soothing and worth a try.

I suppose the biggest thing is to speak to your GP or consultant about your butt burn. It’s not something you should be embarrassed of, and they may be able to give you a solution. I hope my post has been a little helpful in your plight for a less burny bum hole.

I know things like this can sound like a joke, but the reality is that dealing with these things every day can becomes a source of anxiety and really affect both your spirit and day to day life. I write about these things to bring the subjects that us pouchees have to deal with to the table. I hope my post can make it a little easier to deal with.

Love Sam x

Fatigue and Chronic Illness

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I was talking to another j pouch-ee yesterday and she said something that struck me as so true.

You wake up and think you could take over the world. Then you try to get up and your body says “no way, you are 90”

You see, one of the hardest things about chronic illness is the fatigue. Fatigue isn’t being tired. It’s an exhaustion that is bone deep, a feeling that your body is giving up on you. It’s feeling that every fibre of your being is suddenly being affected by gravity more than anything else.

It was the idea of your brain and body being disconnected in some way that really made me think. I wake up most mornings with my head filled with ideas, plans and lists of things to do that day. In my head I am powerful and could rule the world!!! But no one told my body that. The head is willing but the body is failing.

The psychological implications of this are feelings of failure, guilt and disappointment. I worry that people think I’m lazy, that I look ok physically so why am I in bed? I worry that others will see me smiling in a photo on Facebook and then wonder why I’m saying that I’m physically exhausted and struggling. I feel guilty that the lives of myself and my husband revolve around my illness. I feel guilt that my input to our business is so minimal. I think about how much I feel like a failure, that the physical work I do is dramatically lower than the amount I’d like to be doing.

I am disappointed that my recovery is so slow. I was told it takes around two years to fully recover from j pouch surgery and I know that my body has been through so much this year and I need to give myself a break. But I just wish I was back to ‘normal’, I would love to be full of energy and ready to kick some arse.

I would just like my body to listen to my mind. My mind is filled to bursting with ideas… It’s constantly whirring and I just wish I had the physical energy to fulfil just some of those ideas day to day.

There is a huge problem of a lack of understanding, people don’t understand and comment on chronic illness with a condescending and patronising tone that they somehow think is helpful. I was sent this chronic illness bingo sheet today by a friend and I think I could mark of every single one!!!

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Chronic illness isn’t just a disease you have to deal with physically, it is mental, emotional and social. It can be an invisible illness that makes the sufferer feel isolated and can spark depression and anxiety.

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I suppose today’s post is about speaking out, educating and sharing my experience in the hope that next time you, dear reader, are in contact with someone else with a chronic illness that you will be a little more open minded, a little more sensitive and a little more caring.

Crohns and Colitis Uk have produced an information sheet on IBD and fatigue, take a look for some official advice.

They also have a site about the studies going on right now, take a look here.

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Love Sam x

Periods and IBD

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I’m going to warn anyone who cringes and faints at the mention of “wimmins problems” to step away right now as this post probably isn’t for you…

Still here? Good. Let’s talk menstruation!

Now since my surgery to create a j pouch, things are, well, different down below.  I suppose it is to be expected, the new pouch is right up alongside my uterus and vagina and I was warned before the surgery that there could be changes in my vagina especially during the old sexy time.  But what I wasn’t expecting was the change in menstruation.  My periods are now particularly heavy and really painful, they are lessening in severity as the months pass but at first it was crippling, bent over, gripping the stomach, water bottle pain.  I am also finding that during my period, my pouch plays up.  I get a lot more diarrhoea and find myself going to the toilet a LOT.

periods and j pouches poo ibd menstruation

Annoyingly there is little information I can find about j pouches and menstruation, google brings up lots of personal accounts on blogs but little from the NHS or any other official websites.  It’s an odd thing really, you expect in this day and age that you can find out anything and everything online.  It got me thinking about how taboo menstruation is even in this day and age!

I have a friend called Chella Quint who is a menstruation education researcher and blogs, talks and writes about menstruation in her project #periodpositive  Her work shows just how little we like to talk about periods in general, about the historical use of shame and fear in advertising for sanitary products and how taboo a subject it is.

Chella also created the marvellously brilliant STAINS™, a spoof brand that explores blood stigma in menstruation product advertising. You can see the STAINS™ exhibition in the Bloodworks exhibition at Science Gallery, Trinity College, Dublin launching on 23 October. The STAINS™ section opens with a fashion show and mockumentary film, and the entire exhibition runs until the 25 January 2015.

“STAINS™ is a removable stain you can wear on your clothing as you see fit; it’s a fashion statement that really says something. We like to call it Leak chic. Be part of this fashion moment by downloading or purchasing your own STAINS™ stain from www.stainstm.com and wearing it with pride. Display your photos using the #periodpositive hashtag and following @periodpositive”

stains chella quint

 

 

But it seems when it comes to periods AND poo, it’s just a step too far…

After scouring the web, here is some information on IBD and periods.  As with everything on this site, it is my opinion and information gleaned from the Internet so please do see your own doctors if you are having issues.

“Many women with active IBD have irregular periods. When the disease goes into remission, regular periods sometimes return. No one knows for sure why. But inflammation does affect the hormones that cause periods. Nutritional problems may also interfere with the monthly cycle of women with IBD.

Some women with IBD tend to feel worse right before and during their menstrual periods than at other times. Diarrhea, abdominal pain, exhaustion and other symptoms are often more severe during these times.”

periods ibd jpouch ulcerative colitis menstruation

“The interaction between GI function and menstrual function is complex, and not completely understood. Prostaglandins are an important part of the inflammatory process in active IBD, and are associated with diarrhea and abdominal pain. Prostaglandins are also released by the body during menstruation, causing contraction of uterine muscle and resulting in the cramping pain of periods. By this mechanism, symptoms attributed to menstruation and IBD may overlap.”

And I’m afraid that’s your lot.  Not much is it; this was the best information I could find regarding menstruation and Inflammatory Bowel Disease.  Anything specifically to do with a j pouch was even more rare!  I am really surprised at the lack of information on periods and jpouches, especially as it seems it is a big problem for a lot of women.  On many of the IBD blogs out there, women are discussing menstrual and sexual problems.  Some of the symptoms talked about are:

Increased diarrhoea

Pelvic pain

Bum pain

Heavy Bleeding

A heaviness in the vagina and pouch

Cramping

Exhaustion

Sickness/Nausea

Some coping methods found around the web are:

Painkillers (a struggle really as ibuprofen is a no no for IBD-ers and codeine can make you constipated)

Heat pads

Bed rest

Mirena coil

Contraceptive pill

Exercise

I am shocked at the lack of easily available information on menstruation and also sexual problems associated with IBD surgeries.  I have found pages and pages of advice and care for men facing impotency issues following surgeries but anything to do with the vagina is shied away from and labeled as ‘intimacy issues’.  For we are but delicate flowers who can’t deal with talking about our own sexuality, no?

I’m not one to talk about my personal sex life on this blog, and the reason for this is that I have three kids who I know peek in from time to time.  I have an open and honest relationship with my children and we talk about sex and all the issues surrounding sex regularly.  But no one needs to read about their mother’s vagina do they!  What I will say is that I am dealing with problems post surgery and I want advice, information and resources to deal with it, yet turning to Dr Google is pretty useless! Where is all the gynae information?!

What we need is to have a more open dialogue regarding any bodily function that goes on within the underpant area.  I find it hilarious (read appalling) that we still have Page Three girls in a daily newspaper yet we can’t discuss the uterus without men gagging.  For the record, this idea that all men find periods gross is silly, yes, there are men whose ears are offended by the M word but to them I scream MENNNNSSSSTRRRRUUUUUAALLLLLL BLLLLLOOOOOOOOODDDDDDDDD…  Most men in long term relationships have overcome the pubescent thoughts that it’s gross ‘girl stuff’ and recognise that it is a healthy part of the woman in their lives body.

So apologies if you found this page hoping for some answers, I’m afraid I can’t give those.  But I hope I have given you hope that you aren’t alone in dealing with this and I hope you will go speak to your doctor and get some answers of your own.  Finally I hope I have inspired you to start talking about traditionally personal and intimate issues that most women have at some point in their lives.  Please do take a good look through Chella’s work and share, it is damn fine stuff and helpful to us all.

If you have any experience, advice or links to information, it would be great if you could share them in the comments below.

Muchos Gracias!

Love Sam x

Adventures in Menstruating image courtesy of Chella Quint

Pouchitis. Suspected.

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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

Pouchitis

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So for the past two weeks I have been bleeding, Ive kept it to myself as we had our wedding renewal on Saturday and I just wanted the day to be about Timm and I, not about my illness.  Our whole lives had been about my illness for the past year and so I kept my mouth shut and just dealt with the symptoms.

After the wedding I got in touch with Mr Brown, my consultant and today I saw him in clinic, because of the quite heavy bleeding and increased pooling along with a hefty load of fatigue he suspects I have pouchitis.  I had bloods taken today and Ive been booked in for an urgent flexible sigmoidoscopy.  Im pretty gutted and feel like my recovery is being hindered once again, but Im glad my doctor takes it seriously and is getting me sorted asap.  The treatment is a course of antibiotics but we are waiting for confirmation that my markers are up from the blood tests before starting that.

Pouchitis is when an internal pouch becomes inflamed. It is a common complication in people with an ileo-anal pouch or continent ileostomy.

Symptoms of pouchitis include:

  • diarrhoea, which is often bloody
  • abdominal pains
  • stomach cramps
  • a high temperature

Im trying to keep my chin up but to be honest I do feel a bit down about it all.  After the massive highs of the wedding renewal it feels like a real bump back down to earth.  I spent the whole wedding day rejoicing on just how far I have come, thinking about how there were points when I was really ill and in hospital that I couldn’t imagine making it to that day.  But all the while I was thinking about this bleeding and worrying about the causes and feeling set back.

wedding renewal sheffield rock n roll

Pouchitis is a common problem for people with a pouch and so Im relieved that its probably just that but in this recovery it seems to be two steps forward and one step back.  I need to remember that though this is a step back, I am always moving forward and things are getting better.

I have been given picolax to prepare for the flexible sigmoidoscopy which seems pretty scary.  I have of course had so many camera tests and so had all the laxatives before but now I have no large bowel, I can’t imagine what the results will be!! I had a flexi sig last time I was admitted to hospital and though I was terrified before I went in, it was actually less painful than I imagined.  Im not happy about having to have more tests but I am glad it is getting under control and I feel heard and cared for.

Ill keep you all updated!

 

Sam x

 

PS My AMAZING ‘prickly tits’ dress is from Syd and Mallory in Sheffield.

#cleasbysinlove

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The wedding renewal was last Saturday and was just perfect…

I will do a full blog post when I get my photos and video back but till then all I can say is that it was the best day of my life…

rock n roll wedding

 

You can see a sneak preview of just a few of our photographs by our very talented photographer Mark Tierney from Tierney Photography here.

 

Sam xxx

It's my ONE YEAR no coloniversary!!!

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What a year it has been! On 3rd September 2013 after over a week in hospital being pumped full of so many drugs, the decision was made that I needed to have my colon (my large bowel) removed. And so I was wheeled into surgery and this whole roller coaster began.

I was cut open and my colon was removed and the end of my small intestine was formed into an ostomy that was pulled through a little hole in my stomach and sewn into place. This was the start of my eight months with an ileostomy, wearing a bag on the outside of my stomach. In May 2014 I had the second part of my surgery to remove my ileostomy and form a j pouch that reconnects my bowel to my bum.

It’s been the hardest year of my life. There were times when I thought I couldn’t cope any more, that I was in so much pain and distress that I’d have done anything for it to stop. There were times when I felt so angry with the world, that it wasn’t fair that I had to deal with all of it. There were times when I shut out the people around me as I couldn’t deal with the guilt of seeing their sad faces when they looked at me.

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Just over a year ago I started this blog as a diary, a way to talk about what was happening with my health and a cathartic exercise to help clear the stress and jumble of worries in my mind. I had absolutely no idea that it would be read all over the world thousands of times a day! That idea still blows my mind and I can’t tell you how grateful I am to each and every person who reads this blog.

What started as a personal therapy session has become a place to raise awareness of IBD, ulcerative colitis and crohns and also ostomies and pouch surgery. It’s become a place to talk about self esteem, body confidence and women’s issues. It’s become something that I’m so bloody proud of.

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One year ago today as I lost my colon I thought about how it would improve my health and my quality of life. I had no idea that it would lead me on this fantastic journey that I’ve had the privilege of sharing with you. My illness and surgery always felt like a negative in my life, something that was unfair and made me angry, sad and fed up. This blog has allowed me to change my experience into something that could help others, it’s given me a new lease on life and shown me that I am stronger than I ever thought and that I have an opportunity to share that with other people.

So happy no coloniversary to me today!!!

Thank you for reading and sharing my journey, here’s to the next year!!!

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Love Sam xxx