Why I am choosing to have my bowel removed

My name is Sam Cleasby, Im 32 years old and I want my bowel removed.  That sounds like a pretty drastic thing right? Well yep it is.  I am in the midst of a journey that I hope will end with my large bowel being removed from my body.

I have Ulcerative Colitis.  I was diagnosed with the disease ten years ago and in that time I have had numerous hospital admissions, many colonoscopies (camera up the bum to the layperson!), many different drugs and more than a few poocidents…

My drug of choice is currently Prednisolone Steroids.  They are pretty amazing at getting the disease under control but unfortunately come with a barrage of side effects from insomnia, weight gain, the very awesomely named ‘Moon Face’, hairiness and general mentalness (think anxiety, depression, psychosis, thoughts of suicide)  These drugs stop your body from creating corticoids and so have to be slowly tapered off over a matter of weeks or months.  I was nearing the end of a two month stint on Pred when I started with another flare up and so my dose that I have carefully tapered down for weeks has been jacked right back up there.

sam cleasby

My other drug options are immunosuppressant drugs such as Azathioprine – Immunosuppressants work by reducing or suppressing your body’s immune system. This will then stop the inflammation caused by ulcerative colitis.  The drawback is they affect your whole body, not just your colon. This may make you more prone to infections.  Like all drugs Azaithioprine has possible side effects, one of the scariest is an increase in the risk of cancer.

Another drug option is Inflizimab, given as an infusion, it works by targeting a protein called TNF-alpha, which the immune system uses to stimulate inflammation. This is the serious big boy drug – one in four patients have an allergic reaction to this drug.  Again it increases the risk of cancer, specifically lymphoma in patients.

Now I need to say here that I am in no way against drug treatment, I know they have their place and are the right option for many people.  If you are researching the different drugs for yourself, be sure to speak with your doctor or specialist nurse.  All drugs have side effects and if you googled every medication you take it would terrify the life out of you.  These drugs control the disease in so many people and if it is right for them, then I salute them.

They are not right for me.

I do not want to put medication into my body that may treat the colitis but could give me worse things than what I started with.  Cancer is a biggy.  I do not want to take anything that increases my chances of getting a disease that is more likely to kill me than the colitis is.

And so I come to the other option.  Surgery.

In a way I am lucky, I have Ulcerative Colitis.  That means that my large bowel is the only place where the disease is located.  People with Crohns can have the disease anywhere in their digestive system.  This means that surgically removing my large bowel ‘cures’ Ulcerative Colitis.

Surgery involves permanently removing the colon – a colectomy. As part of the operation, your small intestine will be re-routed from the colon so it can pass waste products out of your body.  Initially this will be into a bag attached to my stomach, then in a further operation, surgeons will create a pouch out of my small intestine that is attached to my anus so I can go to the loo in the same way as everyone else!

For some, surgery is the last option.  It is the time when they are so poorly that there are no more drug options.  Or it is an emergency operation – a life saving operation.  For me it is elective.  I am not at the point where my bowel is close to perforating, nor have I run out of drugs to take.  But my quality of life is taking a bashing here, Ulcerative Colitis affects every part of my life.  It affects the relationship with my husband, it affects my children when I am tired, sick and suffering.  It affects work, friendships, my mental health, my confidence.  If affects how I see myself as a woman.  It affects the choices I make in life.

I don’t want to live a life that is ruled by the toilet bowl.

And this is why, for me, the best option is surgery.  Take the bad boy away!! I am not making light of the decision, I know it is HUGE and life changing.  I have researched so much and cant find a single person who doesn’t say that it is the best thing they ever did.

I have seen my consultant today, he is a great bloke.  He listens and cares and gives me all the information for me to make an informed decision and then supports me in moving forward.   I have an appointment with a surgeon on the 3rd September to discuss my options and hopefully make a decision on whether he thinks I am a candidate for surgery.

So here’s hoping! Fingers crossed they will agree with me and whip this bad ass into shape!

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!

poo and religion

 

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.

House of Commons Prescription Charges Debate

As a result of Prescription Charges Coalition campaigning, Lib Dem MP Sir Bob Russell, has secured a Parliamentary debate on prescription charges on Wednesday evening. We need as many MPs as possible to speak, to show the Government how serious an issue this is. 

Use this UK Parliament tool  to identify your MP and their e-mail address, facebook or twitter handle, and ask them to go along and represent you in the debate! Use the hashtag #prescriptioncharges. 

The Prescription Charges coalition have put together some information that you can find here – take a look and get involved.

The main points are outlined below…

 

A Parliamentary Briefing from the Prescription Charges Coalition
Prescription Charges and People with Long-Term Conditions
About The Prescription Charges Coalition
The Prescription Charges Coalition is an alliance of 28 organisations concerned with the detrimental impactthat prescription charges are having on people with long-term conditions in England. Following a survey of nearly 4,000 people with long-term conditions, the evidence-based report
Paying the Price was published in March 2013. Over 3,000 people have since contacted their MPs on this issue.
The Issue
Many people of working age with long-term conditions in England today are struggling to afford theirprescribed medicines and are severely compromising their health as a result.Extending exemption from prescription charges to all those with long-term conditions, as supported by theprevious Government,
on the basis outlined in Professor Sir Ian Gilmore’s
Prescription Charges Review would remove a major barrier to accessing medicines.Removing the cost barrier to effective medicine-taking for people with long-term conditions is likely to:
Improve individual quality of life and health outcomes
Reduce health service costs, including unplanned hospital admissions, arising from people nottaking their medicines as prescribed due to the cost
Reduce health inequalities
Better enable people with long-term conditions to maximise educational and employmentopportunities, support themselves and their families and contribute as fully as possible to society
What we are calling for
A clear commitment to extending medical exemption criteria to include all those with long-term conditions
as part of patient-centred care
and completing the work begun by the previousGovernment. This could be implemented through a phased reduction in the cost of the PrescriptionPrepayment Certificate, using a broad definition of exemption criteria, based on the duration andmanagement of the condition, with the exemption reviewed after three years.
Flexible prescribing
– frequency and duration of prescriptions for people with long-term conditionswho are on long-term maintenance medication should be based on individual needs and circumstancesand agreed between prescriber and patient, not bound by rigid 28-day prescribing policies.
Information should be given routinely to people with long-term conditions aboutprescription charge exemptions, the prepayment certificate and the low incomes scheme, at diagnosis, as part of care planning and where medicines are dispensed, for as long as prescription charges remain in place.
Entitlement to prescription charge exemption should be retained for all those who arecurrently eligible following the introduction of universal credit
The Background
Prescription charges have risen every year between 1979 and 2010 (and since), and currently stand at£7.85 per prescription item.
Prescription Prepayment Certificates can be purchased to cover all prescription items for a three or 12-month period at a cost of £29.10 or £104.00 respectively.
Prescription charges were scrapped for all in Wales in 2007, in Northern Ireland in 2010 and in Scotlandin 2011. Audit Scotland and Welsh Assembly research shows that this has not led to an unusualincrease in prescriptions.
The NHS spends £8.8bn on pharmaceuticals in primary care. £500 million is thought to be wasted dueto the ineffective use of medicines. Five to eight per cent of hospital admissions are related toineffective or inappropriate use of medicine
Prescription charge exemption criteria were set in 1968 and have hardly changed since, despitesignificant medical and technological changes
There is a wealth of research, including international studies, which shows that cost has a key impacton medicines-taking behaviour and therefore needs to be addressed within medicines optimisation
The Health Select Committee considered the system of charges to be “a mess” and medical exemption criteria to be “confusing” and “outdated” in its report on NHS Charges published in July 2006.
Professor Sir Ian Gilmore was commissioned by the previous Government to carry out a PrescriptionCharges Review into implementation of exemption charges for all those with long-term conditions. Heproposed a phased approach, using a broad definition of long-term condition based on duration andmanagement of the condition, with the exemption reviewed every three years.
The Evidence
Recent research from the Prescription Charges Coalition shows that one third of those with long-termconditions, who are paying for each prescription item, have not filled a prescription due to the cost.
Many respondents reported missing doses, cutting tablets in half and substituting cheaper but lesseffective over-the-
counter alternatives to “eke” medicine out until pay day.
Of the 36% who reported not taking their medicine as prescribed, three quarters felt their health hadgot worse as a result and 10% said they had ended up in hospital as a direct consequence of not takingtheir medication.
Where people are taking their medicines correctly, they often report having to cut back on essentialhousehold costs, such as food, rent, utility bills or petrol to get to work in order to do so. This is also likely to impact on an individual’s condition and health outcomes.
The anxiety created by the fear of being unable to afford essential medication could also have a negative effect on the condition and the
individual’s ability to manage this.
This is affecting people with all kinds of long-term conditions of working age
I have to go without to get prescriptions but when my children need things then I have to go without my medication. I often cannot do both and so have to make that decision as to which should take priority.
(45-54 year old with fibromyalgia, high blood pressure and a mental health condition).
 I could not afford the prescribed medication for anxiety, so thought I would try and go without, ended uphaving panic attacks all over the place and losing my job
(16-25 year old, with asthma/respiratoryproblems, a heart condition and a mental health condition).
It’s a struggle when I have 4 children to provide for and need to pay for 4 different items on a prescription,also if I have a flare up of my colitis I don’t get any sick pay so therefore even harder to pay for my  prescriptions. And if I don’t take the tablets there is a risk of being hospitalised therefore surely costing theNHS more money?
(26-34 year old with inflammatory bowel disease and pernicious anaemia).
This month I cannot pay for a prepayment certificate – and I will not be able to get my medicines at all. Itake 15 different tablets and inhalers. I cannot choose which are the most important – so starting thismonth, I will have to go without my medicine.
(55-64 year old with arthritis, asthma/respiratory problems,high blood pressure and a mental health condition).
I ended up being hospitalised for 2 weeks because I missed 5 days of medication
. (16-25 year old withinflammatory bowel disease).
I always have to go without things to pay for my meds. Some less serious conditions get free prescriptionsbut CF doesn’t qualify even though we will die younger than others. This is cruel.
.(35-44 year old with cysticfibrosis).
I cut down on food in order to get medicines. I’ve also not paid some bills e.g. utilities so got into arrears
.(55-64 year old with HIV/AIDS)
It is possible to have all of the 28 conditions represented in the Prescription Charges Coalition and still pay for one’s prescription charges
Actions for MPs during adjournment debate on ‘Exemption of prescription charges for people with long-term conditions’ on Wed 10TH
July
The Prescription Charges Coalition would like to suggest the following points are raised during the debate
The Government has committed to “continuing to look at options for creating a fairer system of prescription charges”
but there has been no progress on this, as the list of exemptions has onlybeen amended once in 2009, to add cancer, since it was created in 1968.
There is a lack of relevant data into the costs and consequences of the current prescriptioncharging system and the potential gains of reform research is needed to inform policy-making
The Government reports that 90% of prescription items are dispensed without charge, but up tothree quarters of those with long-term conditions of working age are believed to be paying for theirprescriptions
For further information, please contact:
Phil Reynolds, Policy and Public Affairs Officer, Crohn’s and Colitis UK (lead organisation for the Prescription

 

Where's the loo?!

There is nothing worse than being out in public and all of a sudden you feel that sudden tug deep in your guts.  For most people it is a fleeting thought of ‘oh I need the toilet’ for IBD sufferer, the fear strikes…

Oh fuck, where’s the loo?!!

Your eyes dart around looking for the heavenly stick man sign, you start the knees together dash towards the nearest shop, they tell you their facilities are for staff only.  You want to punch them in the face but know that would only waste time.  The long term IBDers will probably have a packet of wipes and a spare pair of pants in their bag or car but that’s for emergency use only, you are hoping it won’t come to that.

public toilet sign

Here are a few things that could help in this shitty situation…

Join the NACC it is £12 a year and you get a ‘Cant Wait’ card.  The card carries the message “Please help – our member has a medical condition which is not infectious and means they need to use toilet facilities urgently. Your kindness and cooperation would be much appreciated“.

It avoids the need for an awkward conversation but remember it doesn’t give you the right to use their toilet, it just may help people be more understanding.  I’d rather have a card that says “Please let me use your toilet or I will shit on your floor and neither of us want that”.

NACC can't wait card

The Radar National Key Scheme is £13.99 and gets you a guide to over 9000 loos in the UK as well as a disabled toilet key.  It offers you access to locked public toilets giving you freedom and confidence to go out in public.

disabled toilet key uk

Radar have also produced a Toilet Finder app that is available on iTunes.

mzl.pqaqccwv.320x480-75                                          toilet finder app

 

 

Love Sam xx