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As I sit here on a bidet crying…

Well THERE’S a title I never thought I would post!

Seriously though if you are reading this looking for some of my usual positivity, step away now. I am writing this in my bathroom sat on a bidet having spent the last 20 minutes crying. Right now I am feeling bloody sorry for myself.

My kids are away this weekend at scout camp and as they have a whale of a time, Timm and I are having a weekend to ourselves and so far it’s been fab. On Friday I had a new tattoo!!! By the fantastic Glen at Fat Stans in Dinnington, my newest tattoo is line drawings of flowers. My tattooist is great and I’d recommend him very highly, I know he reads this blog from time to time and he makes a point of asking me about my surgery and recovery. It is brilliant to talk about it and normalise the whole process!

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Last night we had friends over and had a brilliant evening with good food, booze and daft games. Today we have been to a double bill cinema day (Tammy and The hundred year old man who climbed out of a window and disappeared)

I was having stomach pains in the cinema and had to go to the bathroom a couple of times. I HATE going to public toilets now. The reason is embarrassing. When I go for a poo since having my pouch surgery it is VERY loud. The passing of stool comes with gas and it sounds pretty much like this.

The plan was to then come home, have a Chinese and just hang out together. Only I was desperate for the loo, we’ve got home and unfortunately my (hilarious) chalk board has been reset to 0…

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As much as my comedy board does make me chuckle sometimes today it’s made me so sad. It was on 7 and so this feels like a huge set back. I’m embarrassed. I’m angry. I’m heart broken.

I don’t want to write about this really as I don’t want everyone to know.

But I promised myself I would talk about all aspects of my disease, surgery and recovery.

I hate that my husband has to deal with this. I hate it. I don’t want him to see me like this. He is wonderful and just gives me a kiss and tells me it’s fine. But I feel like I’ve taken a punch to the gut when I think about how this aspect of my illness makes me feel so low.

I’m sat on a bidet because of the butt burn. I’ve yet to blog about this yet. Basically the large intestine neutralises the stomach acid in poo. Without it, my waste is really acidic and harsh on my skin. I wear creams and potions to help but sometimes it’s still unbearable. It feels like acid is burning into my butt. It’s itchy, painful and does really feel like a burn.

So I’m feeling particularly pathetic tonight. Please forgive my moaning but right now I just feel weepy, sad and disgusting.

All I can do is dry my eyes and remember tomorrow is a new day.

Thanks for reading, at the times when I doubt whether I should write about these things, when I cringe at the thought of people reading this and laughing or judging me I remember the reason I do this. The reason I run this blog and bare my soul is to share my experiences, #stoppoobeingtaboo and to hopefully make life a tiny but easier for others living with ulcerative colitis, crohns or with an ostomy or a pouch.

I know this helps because every day I get emails, messages and comments from people all over the world telling me it’s helping them. I am eternally grateful for every one of these messages, I can’t put into words how important it feels to be making a difference in the lives of others and it spurs me to continue.

If you are reading this as an IBD patient and I’m scaring you I am sorry, the only thing I can say is this.

You are not alone. You CAN get through this. It’s OK to have rubbish days as long as you pick your self up the next day and carry on being awesome and so bad ass.

And now I’m off to take my own advice!!

Sam xxxxx

The time has come…

For me to get blogging.  Apologies again for my absence, I really don’t know what to write about as I can barely understand how I am feeling right now, but I feel bad for not documenting this part of my journey and I know Ill probably regret it if I don’t.  I am also so grateful for all the loving messages of support and want to thank my readers from all over the world who have emailed me asking how I am as Im not posting!

I suppose Ill take it from the beginning.  I went into hospital on the 14th May at 7am and was taken through to the pre op ward where I had a few tests, got my surgical stockings and changed into my hospital gown.  Soon after I was taken through to the theatre and my epidural (for post op pain relief) was put in place, it was a great team and we had a laugh as I was in there.  I lay back on the table as they pumped the drugs through and my last memories are of the mask being over my face and breathing deeply.

pre op j pouch surgery sheffield

I awoke around 4 or 5 hours later from my pouch surgery feeling very nauseous but glad to be alive! I had been having nightmares that I just wouldn’t wake up from surgery.  I was really tired and the nurse came and said that Timm was on the phone, I believe I spoke to him but I can’t remember.  I told him to sort out the kids and to come and see me once I was back on the ward rather than coming to the post op ward where he would only be able to stay a few minutes.

 

I slept and puked for a few hours and was really out of it before going up on to the ward.  Timm and my mum visited and I felt ok, still quite sick and just exhausted.  The surgery had been a success and as I pulled up at my gown and looked down, I saw that I no longer had my ileostomy bag and my stoma was gone!  I had tubes everywhere, a catheter in my bladder, the epidural in back back attached to a drug machine, I had drips in my arms, a drainage tube sewn into my stomach and a drainage tube up my bum…

Post Op j pouch ileostomy ibd surgery sheffield sam cleasby so bad ass

 

The first few days passed in a bit of a blur, I was on a lot of different drugs to deal with my pain as well as not being able to eat.  I slept a lot and allowed my poor battered body time to recover.

I had a reaction to an anti emetic drug called cyclozine, I felt paralysed and couldn’t speak or communicate.  The nurse saw this and sat with me, explaining that I was having a reaction but that I would be fine once it passed.  After an hour or so the physical feeling wore off but for several hours I was left feeling completely confused, I didn’t know where I was, I thought I was dying and I couldn’t explain to anyone what was wrong.  I lay there crying silently for hours, not knowing what was happening.  Luckily it wore off after about 6 hours and I slowly started feeling normal again.  Absolutely terrifying!!

ileostomy j pouch wounds scars ibd surgery

I was put on a different anti sickness drug to deal with my nausea and vomiting, I say vomiting but as I hadnt eaten for days at that point it was more dry heaving.  I also was given an acupuncture needle to help, it was a tiny needle placed into the inside of my wrist that had a small sticker and a plastic nub that I was to leave in and press when I felt sick.  I can’t explain how it worked but I can say that before I had it I was having anti sickness drugs every 6 hours.  After I had it I had two doses in the next 5 days!

acupuncture anti emetic sickness nausea nhs

After a few days they removed the catheter, the drain from my stomach and the epidural.  The drain in my bum had to stay in for 9 days… It was awful.  It was a tube inserted into my anus and into the newly formed pouch, its job was to allow any waste to drain from my internal pouch into a bag allowing the stitches on the pouch time to heal.  Three times a day I had to pump sterile water into the tube and then drain it out.  Honestly, it was the worst thing about the whole procedure.  The tube was extremely uncomfortable and meant I couldn’t sit upright nor lay flat on my back so I was bed ridden and had to turn from side to side every hour or so.  It was embarrassing too to have this quite large tube coming from in-between my legs and having to carry the bag around with me when I went to the toilet and back.

rectal drain post op j pouch surgery one step j pouch surgery mr brown sheffield nhs

Im glad to say that the nurses and staff were amazing this time, I had no problems at all like the last time I was in.  There was especially one nurse named Sam who just went above and beyond, she was so caring and easy to talk to.  She took the time to speak to you and was just an amazing nurse.  Im going to make sure I let the hospital know just how much I appreciated their care and support.

I wasn’t allowed any solid food for the whole 9 days that I was in hospital.  9 DAYS YO!!!! The first few days I had a drip, and after that I had to drink plenty of fluids and I had these fortisip drinks that I was supposed to drink three times a day.  I think I had 4 or 5 in my whole stay as I couldn’t stomach them.

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I was quite emotional while I was in hospital.  Between the pain, lack of sleep, lack of food, the drugs and the emotions of dealing with surgery I was a bit of a mess.  I cried quite a lot and felt ever so sorry for myself.  There was a bit of a heat wave while I was in and Id see people coming in, in summer clothes and smelling of the outdoors and would silently cry to myself.  Im aware this sounds a bit pathetic but it really got to me!

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One day I asked Timm to make sure I had no other visitors, I was so chuffed that my friends and family visited me but that one day I just felt totally overwhelmed and just wanted to see my husband.  He said he was coming at 2pm for visiting but he was running late.  I lay there watching the clock tick by, logically knowing that he must just be caught in traffic, that he would have called if he couldn’t make it.  But my mind started working overtime.

‘He’s not coming’ I kept thinking.  ‘He doesn’t want to see me, how can I blame him? I have this horrid tube and Im so weepy and useless.  He’s just not coming’  I worked myself into such a state that all I could do was lay there and cry.  And then he appeared. A measly 20 minutes late, not a big deal at all but I had wound myself up so much that I just wept.

But you know, my knight in shining armour came and held me tight.  “You thought I weren’t coming” he said and I just sadly nodded.  He walked off and came back grinning with a wheelchair.  “Come on Mrs C, we’re off on an adventure” he said.  He bought me one of those donut cushions so I could sit and then helped me into the chair.  He wheeled me through the hospital out to a little garden and we just sat quietly in the sunshine holding hands.  Him on a bench and me in the chair, blanket tucked over me hiding the bag.  For the first time in a week I smiled and it felt genuine, everything else, the pain and the fear, just disappeared for that hour.  It felt like it was just me and him and that everything was going to be ok.

sam and timm cleasby sheffield

On Friday 23rd May I was finally allowed the tube in my ass to be removed, it was such a relief.  I could have cried!!! And then I was allowed home! It was so good to get home to Timm and the kids and into my own bed.  I have been home for three weeks now and the recovery is slow and steady.  Physically I have recovered well from the actual incision wounds on my stomach, they have healed really well and I am pleased with them.

ileostomy j pouch scars post op pictures

 

The first week I was home I had to go to the toilet and empty my bowels every two hours, I had an alarm set to remind me and this went on through the night too.  The next week the time was extended to three hours so as you can imagine, I was just exhausted.  Getting up through the night was tough as once I was up I was finding it difficult to get back to sleep.  The reason for this is to make sure as little pressure as possible is put on the stitches in my pouch.  The next week and from then on I am to hold the urge to go to the toilet for as long as possible to start the long process of training my pouch to stretch and hold waste so I don’t have to go to the toilet constantly.  This can take up to two years…

Last Sunday I started feeling unwell, I had to go to the loo A LOT and by Monday morning I had been over 50 times in 24 hours.  I was exhausted and terrified something had gone terribly wrong.  I called my stoma nurse who recommended speaking to the specialised nurses at the hospital, they said I needed to see the GP as soon as possible.  I saw the GP who oddly enough used to work with my consultant and surgeon Mr Brown!  She was lovely and examined me and said she believed it was a virus that was going round.  I was so relieved and came home to plenty of fluids and rest.

So a month after surgery I am now going to the toilet around 15 – 20 times a day, this is mainly because it is quite difficult to actually open my bowels, it feels so different to before and it may take 3 or 4 trips to the toilet to feel like I am ’empty’.  It is very tiring going so much and I feel down about it.  I have to wear a pad in my knickers ‘just in case’ which makes me feel like absolute crap.  I feel really embarrassed talking about it, which is odd for me as I usually am happy to talk about anything but I think because my self esteem and confidence feel at an all time low, it is hard for me to open up and talk about it.

I know it is early days and I was warned that this recovery process is very long and drawn out, it takes a lot of time for the pouch to work properly and so I know I just have to be patient and accepting that this is how it is right now.  But honestly, I am feeling very low.  I feel sad, scared and weak.  Im worried that I have done the wrong thing, I feel like I am ill with Ulcerative Colitis again and that I am back to where I was before the first surgery.  I feel quite panicky and anxious a lot, like Im on the verge of tears.  And Im finding it very difficult to open up and talk about it to those around me.

I am so lucky to have such wonderful, caring people supporting me.  Timm, as ever, has been amazing, my awesome friend Caroline has been here looking after me and the kids, cooking, cleaning and just being there for me, my mum has been here cooking for us all and looking after the kids.  I have had visits, messages and calls from so many fabulous friends and family and I feel so grateful.

But part of me feels like I need to be bubbly and happy, I don’t want to be a Debbie Downer whinging on and on and I find myself just saying “yes, Im fine!!!” to the question of how am I because Im worried that if I open up and say that actually I feel horrible that I will be letting people and myself down.  I know that sounds mental, and if I think about it logically I know that it is absolutely fine to be feeling rubbish, I just had major surgery! I also know that people are there for me.

I think I find it difficult to voice my feelings because I honestly don’t really understand them myself.  I just feel that under my day to day smile, there lurks this gloom.  A heavy hearted sadness coupled with a chest thumping panic.  I feel worried at the thought of being in public or around too many people, I feel safe here at home with Timm and so Im worried about leaving the house.  We went to a shopping centre last week for an hour and it was quite scary but ok as I was with Timm, I was exhausted by it and went straight to bed afterwards.

I just need to keep plodding on, take each day at a time and accept that right now, things are shit.  But as I recover, things will get better each week.  This is a lonnnnnngggggg post so have a shiny star if you have managed to get this far!  Thanks for reading and I will make myself keep on blogging, because no matter how difficult it is for me to get these words down, I know that I feel better for it and hopefully I can help someone else too.

 

Much Love

 

Sam xxx

Are you ever embarrassed to talk about your illness?

This is the question my daughter just asked me. My answer was yes. Sometimes.

But I talk about it anyway to stop the embarrassment for other people. The more we talk about ulcerative colitis, crohns, stomas, pouches and just poo in general, the less it will be a taboo or something to be embarrassed about.

People don’t like discussing matters of the arse do they? And this is the reason that people will suffer needlessly in silence when they begin with symptoms of the bum variety.

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I understand those feelings but want to fight against them. Sometimes a mum at the school gate will say she’s read my blog. My mind works furiously thinking about what I’ve written about the past few days! And then I smile and thank them, for every person who reads may just have learnt something. Maybe I changed their thinking about something? Maybe I have taught them a way to have a discussion with someone else who has a chronic illness. Or maybe I just made them laugh.

Whatever their thoughts I am grateful that my website has delivered a message to so many people. It means so much to know I’ve had over 40,000 views in the last few months.  I get emails from all over the world from people telling me I helped them.

And so when the embarrassment begins to creep hotly onto my chest and face, I think about the people I have helped and that embarrassment becomes pride.

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This blog, my writing and public appearances, the photographs and the hours I put into developing programmes to help kids with body confidence and self esteem, all of that stuff gives my illness a purpose. And that makes things a little easier when I’m ill, exhausted, taking meds, having surgery or recovering.

I hope if nothing else I am teaching my kids to never be ashamed of their bodies. To embrace all parts of themselves and to be proud of themselves no matter what journey their bodies take them on.

Thanks for reading, please feel free to share this and join me in the fight to stop poo being taboo.

Love Sam

The origin of faeces

Thank you to the lovely Jen of Spacedog fame for giving me the heads up on this article.  Taken from the book ‘The Origin of Faeces What Excrement tells us about evolution, ecology and a sustainable society’ by David Waltner-Toews, this picture and article is both funny and interesting!

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When I began writing The Origin of Feces, after a quarter century of teaching and research on the epidemiology of zoonoses (diseases that can travel from animals to humans) and foodborne and waterborne diseases, I knew a great deal about the environmental and public health problems associated with excrement. The solutions to these problems seemed straightforward and technical. What struck me as I was doing research for the book was the profound way in which excrement is embedded in ecological (and, by extension, cultural) relationships. Here are five things I learned, which you should know, about poo.

1. No shit, no life

Before life, there was no excrement. The second that membranes enclosed biochemical reactions – that is, as soon as life was born – materials passed selectively into and out of those cells. What passed out was “waste”. Yet in that waste, nutrients and energy were recycled, and webs of life were made possible. Without faeces (in its broadest sense) life (and humanity) would not be possible.

2. Poop has a purpose

Multi-cellular animals are faced with complex issues related to their need to defecate and their own ability to reproduce. Some deer may eat the dung of their young, birds carry faecal sacs of their young from the nest and drop them into streams, and caterpillars shoot their frass far away from themselves. Still other animals, such as bushbuck and genets, use dung middens as places for inter-sexual communication. Predators often mark territory with faeces. Other species have taken advantage of some of these behaviours. Sloths create dung middens that serve to redirect predators away from their homes in the trees, and also to indicate mating sites not just for themselves; these dung piles also provide means for the moths that live in their coats to reproduce. When the sloth descends to defecate, moths living (and feeding on debris) in their coats oviposit in the dung. The larvae hatch, pupate and feed in and on the excrement. Several weeks later, moths emerge, looking for another sloth to call home.

3. Dung is delicious

Within a multi-species landscape, human and other animal behaviours that have evolved to optimise reproductive success also serve to disperse seeds and replenish landscapes. Dung beetles, for instance, which live on every continent except Antarctica, use faeces as a source of nourishment for their young; at the same time, by burying faeces in the ground, they are integrating nitrogen, phosphorus and other elements into the soils which support the plant species that feed the animals that provide food for the dung beetles. Taking an ecological view, the dung beetle is not just an organism. It is also a bundle of nutrients, information and energy: each organism, through its eating of the excrement, is an embodiment of excrement. We are, all of us, what we eat. Parasite cycles give us a rich picture of how the nutrient essence of excrement, if not its form, can move through the ecosystem from intestines of birds and mammals to the soil, to plants and insects, and back again to mammals. The parasites and their hosts and predators are, in fact, the re-embodiment of the deconstructed excrement and the life cycles of parasites of concern to public health are life cycles of excrement. The global distribution of faecal-related bacteria and parasites in food, water and wildlife (e.g. E. coli, Salmonella spp, Giardia spp, Toxoplasma spp) tells us not just about the ubiquity of hazards, but also about the webs and pathways through which the nutrients and energy in excrement are distributed globally. One implication of this is that killing off any species, however small or obnoxious, closes off certain pathways of nutrient recycling and hence will affect all of us sooner or later.

4. We are caca-conflicted

Conflicted human attitudes toward faeces have deep biological roots and reflect relationships to excrement seen throughout the animal kingdom. In evolutionary terms, positive associations with the scent of excrement may be rooted in biological urges to define territory and communicate with others, as well as the observation that food plants grow better in areas that had been manured. When human populations were mostly nomadic and when settlements were small and sparse, the positive associations with excrement outweighed whatever risks were perceived. This positive view of manure, historically reflected in a thriving commercial trade in excrement, has persisted when connections between city and countryside have been explicit and open, and in rural agricultural areas today. As we have increased our understanding of transmission of killer diseases such as cholera and childhood diarrhoea in the last few centuries, however, and as the beneficial association of flush toilets and clean bathrooms with survival has become clear, city dwellers have learned to take an unambiguously negative attitude towards shit. The shift from a positive view to a negative view is thus rooted in shifts from people living in the country to people living in cities, to a loss of connection between food producers and consumers, and to our increased scientific understanding of causes of disease.

5. Crap relationships matter

Excrement is part of what has been referred to as a “wicked” problem. The “problem” of faeces is deeply embedded in a restructured global (eco) system of livestock-rearing and trade, as well as water-based disposal systems (flush toilets and sewage treatment plants); these were developed to improve food supplies, promote health and stimulate economic prosperity. Nevertheless, the solutions to problems, while effective if viewed narrowly, also result in a depletion of potable water, and a major redistribution of water and nutrients from some ecosystems, which are thus impoverished (e.g. soy beans in Brazil), through animal and human faeces into other ecosystems, which are thus over-fertilised (particularly those where industrialised animal rearing has been selected as the solution to the “food problem”). Solutions to excrement-related public health and environmental problems call for a new understanding of the science of relationships among things (as differentiated from a science of things-in-themselves), and will only be sustainable if they account, simultaneously, for the manifold ecological and cultural webs in which they are embedded.