Chronic Illness, The Welfare State and the NHS

I have made it very apparent that i am a political person. i cannot 'divorce' myself from the external world of what is happening to the many individuals, families and friends who are sick, chronically ill, disabled and very vulnerable. I have had personal experience of the NHS, the hospitals, experts and equipment, as a crohns sufferer from the age of 14 . I have witnessed the 'abuse' and political ideological tussles of governments of all persuasions, when it comes to the experiences, values and results of the great institution the UK has known as The National Health Service.
I am confident that without the qualities and skills of so many medical heroes over my 36 years with crohns, I would not be around to have the ability to write this today. It is by no means perfect, it is impossible to attain perfection, we have human beings in a pressure scenario. Nevertheless, the vision of the NHS as one which is available to all from cradle to grave, via state national insurance and taxation, with the sheer will of the government for it to be a thriving evolving but invaluable life-source, remains to this day as relevant as those early days in 1948 when it was born in an age of post-war austerity.
I recall the creeping expansion of private out-sourcing of cleaning services, then additional services being tendered for contract, often to the lowest bidders, not always the bids which saw the greatest reward to patient. I have also witnessed a failure of government to promote and invest in the training of nursing staff, which has often left a dependence on overseas expertise and care. Even more outrageously,i have seen how the use of agency staff to allow wards to thrive and care for the suffering and  vulnerable patients, suck vital resources from the health service, with agency staff warranting ridiculous levels of financial recompense.
Even more disgustingly, the managers, with direct authority from political masters, have been encouraged and allowed to close kitchens , make cooks and kitchen staff redundant. This, simultaneous with the use of ready meal transportation of meals, often barely edible, not designed specifically for the nutritional requirements for patients with special requirements. IBD patients have often experienced the inadequate provision of poor quality, weak nutritional meals. This, in my view, a 'criminal' ideology, leaving patients undernourished or even malnourished, at times when they need major dietary expertise and quality.
Why have these many things been undertaken? With the needs of the patients, staff and hospitals as paramount? No way, sadly the decisions have on many occasions been taken from short-sighted, financial and politically motivated objectives.
We have seen this situation become increasingly critical, hospitals being 'used' by government to sink or swim. Sadly, in my view, i feel that at this current time, NHS hospitals are being deliberately left to struggle, squeezed by their political visitors. The political visitors, who visit wards to emphasise how they 'love' the NHS, care so profoundly for its future, whilst actually undermining the entire foundation on which we all depend. A foundation showing increasing weakness and vulnerability as they are being drained of resources and prepared to be sold off to private groups, many of which have no expertise in the field of healthcare. Hedge-funds, building companies, entrepreneurs with interests in anything and everything and expertise in little!
We in the UK as IBD patients are dependent on the NHS for our lives, yes our lives. We know it suffers failings and managerial weaknesses. We know it occasionally fails people and the vulnerable suffer.
Irrespective of this, the knowledge that we have access to consultants, nurses and support, as a fundamental icon of our society, is something we can cherish and help secure and thrive as this century progresses.
The Prime Minister told us prior to the election is priority was N-H-S , well sorry Mr Cameron, but you misled us all. You continue to, the NHS is at its most vulnerable weakest point it has been at since its formation. This coalition government, with no mandate, are leading and facilitating the provision of NHS healthcare, into the arms of a private medical system. a system like all private companies which will have its shareholders central to its decsion making. Its aims will be for profits, either through such radical reductions in staff and treatments, the selection of 'sexy' more favourably positioned conditions to secure financial rewards, or the introduction of charging for nominal treatments intially, then extending to more complex and extended care and treatments.
Companies like UNUM, an American private medicare company is one of those hovering waiting for the day when they can move into a market to sell private health insurance to patients,with the silent, but obvious approval of this government.
Yes, we know how it feels to be vulnerable, sick, at our lowest point and staring into a spell of weakness, pain and suffering. This is how the NHS is at this precise time, it is being left hung out to fail in order that individuals and companies, with no concern for you or me, more interest in profit and loss and quarterly results, can be presented to the people as the saviours of a 'failed system', the NHS.
We of all people know the value of so many who have cared for us and treated us when we have been at our weakest state. We should know that the NHS is being underfunded, squeezed and exploited for political and financial gain. We will be among the first to experience the effects, but it is our children who will be the long term victims of this dishonest 'robbery'.
I apologise that this blog is so political, but as a chronic sufferer of IBD and other secondary conditions, i believe i have a duty not to ignore and delude myself that nothing is really happening. I have a responsibility to the nurses and doctors who have helped get me through so much, and continue to do so, to stand up for what is right and just. That is to stop the drip , drip drip, discrediting and undermining of the NHS, deliberately, and the desire to allow hospitals to fail and be stolen by private business.
This may sound like scaremongering and politically one-sided. Well, i admit my politics are socialist, i see the value of working and running an economy for the good of society and its people. The essence of the NHS is the accessibility of it to all in their moment of need and vulnerability. It is and had always been funded by the population paying contributions, which will mean they, their families and loved ones, can be treated with care and expertise. The benefit for all, a social service, yes, service, a phrase that is becoming increasingly undermined by political ideology at this time.
If you think my characterization of a creeping 'handing over' of NHS hospitals to private business is extreme and will not really happen, i have news for you, it is already happening. It will become increasingly prevalent if we don't object and oppose the 'theft' of our NHS.
The sad fact is the government has no authority to do anything as radical as this, in fact its mandate should be so weak and diluted by the effect of a coalition. It is a pity that the Liberal democrats have the chance to prevent this and the many attacks on the the state provision of services and welfare to the sick, unemployed and disabled. It does appear their role is to occupy the positions in government, enjoy the luxury and feeling of power, but fail to do little to restrict the extreme changes in the services and elements that have helped this country offer a secure welfare state for its people!
You may use the words 'deficit' and 'austerity' , i will respond with tax loopholes, tax havens, complex tax evasion 'won' by well paid accountants , under the current legal HMRC rules. Add to this, a reduction in the numbers of staff who work in HMRC, which makes the task of recovering 'lost' tax located in complex accounts or havens by 'cheating' individuals and companies, increasingly hard to fulfil and achieve!
John Ingamells
01/11/12

Crohns, my Liver and this....

It struck me after blogging about my crohns and my surgery, that i have often referred to having a colostomy and problems with bleeding from it. Additionally, i have referred to my self image issues as a result of surgery.

I have read a number of fellow bloggers work, some are quite proud to show images of their scars and if it applies, their stomas.

I have toyed with the idea for some time as to whether to include an image in my blog, whether it was suitable or offensive. If people might object or whatever 

I do want to add now this is not included for anything other than the time is right, it seems open and honest as part of a blog, and lastly, but by no means least, it is not designed in anyway for pity or to induce sympathy. I do not want any of you to feel that, i hope you don't. This blog is about me, my life with my illness, my fears and my thoughts. 

I dont need anyone who hasn't lived this life to sympathise or have an opinion about my need to blog or indeed post the following images.

I post this because they are illustrations of my illness and as such warrant inclusion in this blog. They are included now, because it is a suitable time. A time on my terms and to usher in me blogging more, apologies, at least weekly, and because my health has now acquired added secondary complications.

i have discovered that rather than having a blocked bile duct, which i understood could be resolved endoscopically possible, i have cirrhosis of my liver. My consultant, as with most things Crohn's, cannot say whether this is due to the illness, the medication or a combination of both. When all's said and done, it isn't really that important either way, the liver, spleen and low platelets are all as a result of having crohn's from such a young age, for so long.

So i take pain relief to deal with the the liver, which at times can be 'difficult and very uncomfortable'. I am waiting for a dietician to advise on assisting with helping the liver as well as my crohn's, hoping a diet can be used that will not conflict with each others individual problems.

I have an endoscopy in a fortnight to check if anymore oesophagal vareces have formed. apparently this can be an element of the liver problem.

They  also do not really know whether my blood clotting is the low platelets, poor vitamin k absorption, spleen, or the liver which is now an obvious 'candidate'.

My consultant is aiming to try and limit any more major scarring to the liver. Hence, the diet and the need not to be prescribed any medications which can cause 'strain' on the liver.

The good thing is i am not showing obvious yellowing as a consquence of the liver, which has to be a good thing.

It is a time when i will endeavour to focus on the best means, medically, surgically or through diet to deal with my new problems. I hope to enlarge on my progress or otherwise, via this blog.

This is my blog, all about me, my problems, and is in no way designed to influence or scare other sufferers into believing they might have similar things in store.

Crohn's is never that straightforward or simple. We have many variances in how IBD affects us all, the important thing is to be aware and vigilante for everything and share knowledge. That's my view anyway.

We are all different and very individual.

These images are mirror images, so my stoma is left side abdomen

 

Thanks

 

29/08/2012

 



 

 

 

 

 

From Out-Patients through A+E to surgical...

I haven't blogged for sometime, i've not felt i had anything new to say or offer a great deal of positivity. I haven't been experiencing major problems, though have been in limbo waiting for an mri scan and then a follow up consultant appointment.
So, I have remained invisible and quiet, not wishing to add to or complicate the minds of other sufferers or their families.
I finally saw my consultant on thursday, i am on pretty open and honest terms with her, shes cared for me for so long. Shes admitted that she does withhold some information or potential complications from me. The reasons being obvious.
The mri contradicted the earlier ultrasound. Rather than a dilated bile duct, the original problem i was advised about, i have  cirrhosis of my liver. This cirrhosis is as a result of long term crohns, its complications and a lifetime of medications.
So having gone in assuming it was one thing, i am now told a further chronic complaint has developed as a result of my crohns. The consultation went on, my consultant telling me she feels she can manage the liver, will attempt to hold it in check, though all future drugs and diet will need to take the liver into account. She explained to me my blood clotting problems are obviously as a result of the low platelets, large spleen and low vitamin k levels, though the liver is now a factor.
My consultant tells me i need an endoscopy to check for any oesophagal vareces, which can develop as a result of the liver cirrhosis.
I am also referred back to the dietitian, both for the liver damage and my crohns disease.
On returning home, literally within an hour i have a big bleed from the stoma into my bag, not great!  Because of the quantity i have to get paramedics to take me in, who do an excellent job in maintaining my vitals are good, getting a line in, and doing all the other things that are relevant.
I got straight into resus, where i was placed on heart monitoring, they are naturally thinking i may have internal bleeding, and spend sometime trying to ensure they will not overlook something that could cause an immediate crash! I'm afraid i'm getting pretty accustomed to these dashes to A+E and urgent intervention. The liver is now an additional aspect.
After close monitoring,  regular probing of my abdomen by A+E doctors and then surgeons, they admit me to surgical, to closely monitor my state and be prepared for anything.
Fortunately, i am also given additional clotting aids to help , this seems to stem the stoma bleed.
Through the night my condition begins to improve, i begin to feel assured that this time i have avoided any internal bleeding.
In the morning the surgeons suggest 'burning' or cauterising around the stoma, or even another collection of sutures. As the day progresses, nil by mouth is removed i can eat and drink and no more bleeding occurs. As evening arrives, the surgeons do their rounds, having done all their daily list in theatre. The surgeon, a different one, looks closely at the site and feels assued the bleed is over for now. This being the case, and the realities of life regarding hospital beds, i am told i can go home. Only with the proviso that i will return if anything deteriorates, as if i would somehow not!
I cant say im totally happy with this. All of us know the protective mental and physical cotton wool the hospital and the medics offer us at times.
So into the evening i depart, off guard having prepared for a further night of close monitoring.
Its after getting home that the acceptance of another added chronic problem to the crohns begins to dawn on me. I was given a fair bit of information of possible elements that might happen from the liver damage, its a  lot to take in and i like to think i am someone who has experienced many of the secondary problems crohns can bring.
I've got to admit, it is a little frightening, especially with my blood clotting, platelet and spleen problems. i suppose its inevitable that you go into a shell, thinking about the future and drifting into doubt and negativity. I have tried so hard to focus more on the positives as opposed to some of the unfortunate aspects of crohns. I take this as a personal blow really, though i do know there are many suffering much more than me, its easy to slip into that frame of mind!
When i started blogging i hoped to be able to accentuate how much can be achieved with crohns and a stoma, i do still think that is the case. I still think theres value in blogging and trying to be honest and open without making it sound like every person with crohns will develop major complications.
I'm certain that many sufferers will manage to avoid so much of the secondary conditions, i hope that's the case anyway.
When my crohns started the treatment was 'heavy handed' and the consequences weren't always considered. I'm sure many people starting out with the illness will be monitored closely and scanned and tested should complications develop. Its important for all of us with IBD to be aware that we need to be in control of our treatment and always ask the relevant questions and consider the long term secondary problems.
Ive had a weekend of moping and feeling sorry for myself., been able to have a mental consideration of what it all means for me and look on the gloomy side. It been oddly therapeutic, exploring the demons of doubt and despair. In the end I must accept that its another thing to deal with, like many others that seemed like the 'end of the world ' at the time. I know its not always going to be easy to deal with but i'll worry about that when it happens.
I blogged this  after such a while not to get sympathy or attention, nor do i want others to think they have this in store. If there's one thing about this illness its the fact that everyones so different. I want anyone reading this to simply be informed and aware. I want them to be upbeat when they are feeling well, we have to make the most of better days and tolerate the bad ones.
I really do want people who are new to IBD to get as much information as they can and 'hound' the medics if necessary, with as many questions and concerns.
Treat the professionals with respect, but it's our body, we must call the shots!
I start my 52nd year on the planet next week, don't rush with the cards and gifts that wasn't a hint... I want that 52nd year to be a good one and intend to make the most of the better days and try not be a total pain on the bad ones! I will do my utmost to deal with blows and knock-backs as best as I am able, I' sure I won't always succeed.
At least i've got my excuses in first!

It ain't all about guts!

I have not blogged for several days, due to several reasons, lack of inspiration and pain being two.Crohns can be a cruel,unending torment to the body and mind. It can be a tussle with external and internal issues,not directly the crohns or the pain connected to it.
It has been a source of frustration and bemusement for years that the treatment of crohns fails to include the whole body and mind.
I have tried in the past  to impress on local health service providers the genuine need to treat chronic ill health, specifically IBD,  with a view to the mind, spiritual requirements and relaxation.
I have taken advantage of massage, relaxation, hypnotherapy methods myself, and know how useful they are for allowing tension and pain to be dissipated and managed.
Additionally, i can see advantage in music and other artistic therapies to aid those in flare ups, preparation for surgery or in remission.
It is plainly obvious to myself, that crohns can be as much to do with focus of the mind, positivity and dealing with pain and anxiety.
I recognise the times we are living in and see there are only limited resources made accessible. I understand the real world means we must direct valuable assets to obvious positive treaments.
Nevertheless, it is an area overlooked by so many health providers and genuine valuable improvement can be attained to help deal with the effects of these conditions.
Life with chronic ill health is an up and down journey, the physical damage alone is debilitating and  drains the body.
There appears to be little measurement of the extent of the damage to patients through the psychological effects which then add to ones meted out by IBD itself. I see real value in specific focusing of IBD in treating the mind, the pain management and stress.
It fascinates me to to discover whether any fellow patients in the UK or anywhere around the World have any experience of any additional treatments designed to improve the lives of IBD patients, and indeed their family members and loved ones.
I have always felt that any physical illness, acute or chronic, would gain through treating the person as a whole, not just the illness. I remain convinced that we and health providers would gain in the long term.
I hope this blog inspires those who read to offer feedback, even if they disagree with it.

Crohns- Predictably Unpredictable

I see many of us who have crohns, or ibd generally as individuals all sharing a common condition. Yet this common condition lacks a commonality in its damage, effects and reactions to medical or surgical treatments. You may say 'this is stating the obvious' and in many ways its true.
However, i know through having crohns for the time i have, that we do appear to have so many varied experiences and obstacles as a consequence, that it is significant to me.Indeed some sufferers have numerous surgeries, others hardly any, even none! Some experience very successful responses to treatments giving respite from flare up and remission.  Others struggle,desperately to locate a successful medical resolution, suffering the pain and turmoil before a breakthrough is discovered.
Many of others will pick up additional complications as a result of the treament or illness. Some will  manage fewer or little.
Having established IBD and specificially crohns are inconsistent in many ways, it is equally as obvious to say the personal responses to and handling of these inconsistencies can vary so much. It is obvious to say the degrees in fragility of our bodies and minds, has a major role in our life with our illness.
This would also mean environment and surroundings play a role in the way we deal effectively with illness.
Essentially what i am saying is, I am imagine, one of the reasons why it has taken such a long time and counting, to find an adequate substantive reason for why we develop the conditions. The natural partner to that puzzle is the discovery in how to prevent and cure the conditions.
I think we see progress in research and investment, don't we all wish for it to be speedier and more successful?
I. like many others are optimist that a genetic breakthrough will be discovered soon. I don't imagine to see the benefits greatly to my own situation, but am hopeful that future generations, family members children, etc will be the real winners.
It is easy to be negative with this condition, i am one of the worst i imagine! I often allow mood and emotion to cloud judgement, but i know it and that's something i suppose.
I look at IBD and still see children being diagnosed, youngsters having so much pain and suffering at present and in the future, and it is them and the future generations that I am more hopeful about.
I see hope in the dedication of the Medical experts across the globe, the many Support Groups and the Researchers, and i see an optimistic outcome for IBD in the future.

Crohns- Glass Half Full

I see Crohns as as much a struggle with the mind as the physical aspects resulting from the illness . I think it is apparent to anyone who has read this blog over the period i have written it.
I find that much like the illness can be unpredictable, so can my mood and outlook. I have never grasped how or what  can cause my mood to change to a darker less positive one, but am aware of it , i can see the darkness.
It is and has been a struggle with a fluctuation of mood and even depression over the time. I cannot even definitely say it is wholly connected to my illness. I suppose it is inevitable that anyone with a long term condition will wrestle with depression.
What  I want to say in this blog is that, despite a battle with illness and mood swings, I have come to the conclusion that the illness is not going to defeat me by allowing my outlook, even if it is low, to hold me in a limbo of self pity and inertia.
I have experienced many clear bright days when the sun can appear and overpower the full force of any storm or downpouring of rain. I have often understated the full effects of the glimpses of this light, lessening its ability to brighten my day and positivity.
Illness wears you down and diminshes your will and fire. Some days there are many bright rays offering me optimism and positivity, and i fail to grasp it or take advantage of these rays of light.
I do tend to allow things get on top of me , sometimes quickly and with a force. I have a tendency to keep in those problems and they worsen and become more significant then they warrant.
I am blogging today to try to encourage people to embrace the dark thoughts and downs, become open and more free in sharing feelings. I have realised over time , yes i am slow on the uptake, that living with crohns can provide so many good times, experiences and relationships. I think i have been unwilling or unable to take advantage of those happier times, which can help give crohns a greater control and power than i want it to.
I am personally determined to let these bright rays dominate my outlook and future. I have no intention in the present and future of letting crohns or depression make decisions for me.
Add to this i am also determined to view the realities of my illness not to swallow me up and become the major element in my character.
I realise that everyone struggles with all the effects of this illness, and some days are always going to be better than others. I have lived so long with the illness, than 'normal' John no longer exists.
Nevertheless, it doesn't mean that i am defeated or will compromise. i have done this, it doesn't help, i want to run the illness when possible, not the other way round.
The bottom line to everything about this illness is to have someone to share this load and to be able to 'hold your hand' through it. you have to also be strong enough to admit you need your 'hand to be held'.

"I Dont Want to Feel a Burden"

A few days since my last addition, for several reasons.
I think its about time I had something to offer, so here we go. This bearing in mind, the weather here in the UK is rather untypically hot and sticky, so I apologise in advance for any distracted focus.
The  thing about enduring any illness, Chronic, especially, is that you have to come terms with having poor days when you feel something akin to wanting to curl up and hide.
At times, it is difficult to get the stamina to do anything. These periods can be intermittent or relentlessly consecutive, depending on whether Crohns is actually in a flare or if additional secondary Chronic conditions are present.
So, whether you are content or in the position to be able to receive it, you do need help and care at times. You are dependent on others for so many things from the mundane to the more involved.
This is not to say its a situation of being helpless and at the will of others. Nor is it an excuse to opt-out.
I'd like to see it as being a partnership rather than total dependence, more of a sharing of the good and bad and a relationship in caring.
It is sometimes a fact that through our own suffering and pain, we neglect to consider the stress and struggles carers go through. It is an easy thing to do, and yes, at times, i have done this.  I don't think, speaking personally, it is driven by selfishness, its simply being in pain and suffering and lacking thought.
The reverse of this is the tendency to feel you are capable of dealing with things, shunning any offer of help or assistance, often leading to people suffering in silence. Not wanting to be a burden or through a sort of pride. I have also done this in the past.
I would say the one thing about this or any illness is to be honest with your loved ones or carers. Let them know if you feel capable or incapable of certain things. The " i dont want to be a burden" will always be there, but communication will mean it is watered down.

Crohns Mental Health and Stress

All who know me are well aware that I have had crohns for years, love music and art, and I am a political animal. I would hope those who know me believe I am someone who believes in justice, support for the sick and vulnerable, and despise profit and share values above people and their lives.
I want to discuss an issue that I firmly believe is a factor in many of the lives touched by #IBD, the issue of mental health and stress factors.
Speaking personally, on top of my ill health, I have experienced peaks and troughs of moods, emotions and mind-set. I don't think I am alone.
It is easy for us all to say 'we are low' or 'down in the dumps', I have done it myself, and continue to use this terminology. In reality I know that deep down it is not simple 'feeling low', I believe my physical state has led to many crises which have involved degrees of Depression. I have 'looked at myself in the mirror', wondered how life will develop; held and still hold fears of a loneliness and a future alone with Crohns. I don't imagine I am unique.
Crohns and its symptoms, the diagnostic techniques, the manner of life and fear of living with the condition, all form the 'building blocks' constructing this wall of depression.
I had and still have low self esteem, struggle with it and probably always will.
I regularly get depressed at dealing with crohns on my own, with no one to allow  to take the load, offer reassurance and love. It is a constant 'companion', I know this is wholly the wrong term, but think it apt!
In recent times, to add to the mental problems crohns has brought me, the fear of the future in a 'shrinking welfare state', with the threat of being without state benefit, income or security in anyway, has reared its head.
I don't mind admitting that i do fear the postal delivery.
I have much stress at the stigmatizing of all of us who are sick or disabled and getting state support, as scroungers, not genuine or 'swinging the lead'! This appears to be a campaign run by the government, aided and abetted by the media, and sadly, many people have indulged in the 'mob rule'.
I know that personally this is stressful and causing me depression.
So, having established my life as one with the illness and hidden mental illness, added to stress of many issues, I merely blog this on a personal level that I see this as being relevant in IBD.
As I usually state, this blog is a personal blog based on personal experience and fears.
The blog is not aimed at suggesting all sufferers will be the same, feel the same or have the same views. Indeed, if people who totally disagree with me reading this, are prepared to comment, i welcome that input.
I do also want to add that today's blog is not aimed at encouraging sympathy for me or making my situation typical. As I have said before, its my life and experience. I happen to think other  IBD sufferers have problems with depression too.
As always, I welcome any feedback favourable or otherwise.

Osteoporosis

Having crohns disease for most of my life has brought to me the knowledge that there is considerable need for medication to treat chronic conditions. Equally though, it has enlightened me to the fact that, despite medical supervision and experience, some additional conditions can come our way as crohns patients.
We are all aware of the effects and benefits of steroids, we also know of the complications and issues that emerge if things can go wrong. As with many of the medications we take.
I want to deal with one aspect of a secondary condition crohns or medications can help create.
I was unfortunate in the fact that i was young when diagnosed, this has led to a long time with malabsorption and intermittent steroids.
After all the problems with my gut, poor absorption and repeated anemia and mineral deficiencies, in 1993 i suddenly found out i had osteoporosis. I imagine it is an obvious consequence that Vitamin D and Calcium might become a deficiency, it seems logical now, unfortunately the prevention wasn't addressed, as a consequence i fractured a vertebrae .
I had been experiencing very odd symptoms, hands and face tingling, repeatedly feeling spasm type symptoms in my hands. I had no idea what was happening. Neither did my my GP who did bloods but thought it was symptoms of hyper ventilating.
Sadly, by the time the blood results were analysed I was on a ward in hospital lying flat on my back.
I can only say that the experience of turning over in my own bed and cracking a vertebrae is an 'interesting and very painful 'experience!
As soon as i was admitted a spinal x-ray showed the crack, and i was told to lie flat.
In addition to the spinal problem, i was advised i was having severe tetany which feels like lockjaw i am told. Not fun!
The medics decided they needed to get calcium into my veins pretty quickly, as it appeared to be almost non existent in my bloods!
It was an interesting and frightening time, one i wouldn't wish on any one.
Eventually, after a lengthy stay and treatment, the medics tested me for permanent spinal nerve damage. Fortunately the results showed no nerve damage, but i continue to require treatment to improve the bone density.
I suffer from the pain in my back from the fracture, and i imagine this will always be so.
Today's blog is intended to show some of the negative effects treatment and/or poor absorption can have for crohns patients. It is a suitable example of how we should all be aware of the need for regular blood tests and the effects of how our crohns creates problems as a result of malabsorption.
It is my experience, mine alone, is not typical, nor does it follow that all sufferers might develop osteoporosis.
This has been one of the secondary issues that having crohns has affected me. I have others, i am sure i am with many other crohnies in that.

World IBD Day 19 May 2012

Today is World IBD Day, to all touched in some way by any of the illnesses incorporated in Inflammatory Bowel Disease, an important day to highlight them.
It is a lifetime since I was diagnosed, I am not stupid enough to say progress has not been made in many aspects of these conditions. Of course it has. Drugs, treatments, aftercare and knowledge has advanced.
The elusive breakthrough of cure still remains. As long as this is needed for all of the illnesses, awareness must be the aim.
IBD is often a 'poor relation' and it needs all it can to highlight the devastating effects on bodies, minds and spirits of so many people, their families and friends.
If people read this blog and are not aware of some of the effects IBD has , many young people as sufferers, i would ask them to take time to investigate, google or simply ask via the many groups on Social Media and the web.
These conditions are chronic, painful and everlasting.
Families suffer with their loved ones, despairing of the illness, treament and surgery when needed.
I hope in my lifetime to see an eventual cure and ability to stop IBD in its tracks!
I live in hope not merely for myself, but for all sufferers, current and in the future.
I know what the condition can do to us all.

Crohns: Stoma

I just want to add that as with every blog up to now it is totally from my own experience, outlook, fear and life. I wouldn't want anyone to feel that their lives will be anything like mine, either in relation to the crohns or anything else. So, if they don't agree with anything I say, its just my view and experience.
I mentioned in the last blog 2 days ago of life and experiencing it to the full with medical assistance, through the period when all of us are young, positive, fearless and carefree. i never blogged yesterday, you can get too much of a good thing!!
So, as i stated in that blog, life was sweet until, it went sour again. It went sour in the sense that the 'drugs didn't work', severe symptoms and pain returned and investigations led to the surgeon walking up to me in my hospital bed with another consent form.
I looked at the consent form which as usual gave the surgeon the capacity to determine on how to proceed immediately he saw the damage of the gut. I signed, the nursing staff then got me prepared for surgery.
Surgery occurred, i recall waking up in the haze of recovery, back to the ward and then pain control administered. Recovering from surgery and the medication is again a personal thing. Many have problems with pain relief, some will arrive at a stage of reasonable alertness more rapidly.
All i can recall is that in what seemed a hazy drug assisted alertness I was told the surgeon had done his work. The surgeon's work was seeing my bowel was like tissue paper, diseased and in a very poor state. As a result I had a little friend stitched to my abdomen with a bag attached to it. This little friend was the outcome i had been concerned about, and here it was. I had a stoma, which is basically intestine which allows the gut to detour, take a short cut and deposit products into the bag.
So, after the initial aftermath, stoma nurse, booklets and a 'chat' with someone else with a stoma, recovery begin, a process of recuperation meant i also had to deal with the stoma.
I think i coped  and cope well with the day to day requirements having a stoma requires. i had problems, leaks, mishaps and all the other things that come from the existence of a stoma and bag.
It was hard for me to get used to having a receptacle for body waste attached to me. Its odd when you have little or no control of its activities.
So, having dealt with the problems of practicalities and problems of them, the next thing is how are you seen in respect of relationships and generally by other people.
There's no rule to these things, no stock line about 'this is what you do to help, adapt and involve people in your relationships'.Well, there wasn't at the time anyway!
I can't really express the difficulties and mental somersaults i had with the stoma and relationships. I stressed about how i felt unfit, no pun intended, to be part of one, because mentally it felt  hard to deal with who i was then. I was 25, but my attitude to myself had changed. It shouldn't have changed, but i am a flawed human with a flawed human brain. I stressed about everything to do with a relationship, the physical and practical problem of having a bag of stuff that shouldn't be there, and being intimate and close with someone. How they reacted, if they said the 'right things' to make me feel better, more 'alone' with myself. Whether I was good enough, in all definitions of that phrase.
Having the stoma then, at that time of my life, created mental and physical problems with relationships, that, in all honesty, to this day remain to some extent.
I have 'allowed' myself to reveal my physical disadvantage, in my mind or in reality, from the stoma. i don't really need to go into the raw details of life, and many other people have successfully lived life to the full, but for one reason or another it got in the way. It got in the way in respect of actual physical closeness, but importantly in my head.
Esteem is a shifting thing. we can present as in total control, full of life, ready to tackle everything. In reality, we could be on the edge, struggling, self doubt and despair a constant companion. I could be laughing on the outside and cracking up internally. The shield i have referred to would be used to present a content, happy demeanour while protecting me from the reality of how i was feeling.
Over time i suppose with experiences ensuring little change, for one reason or another, outwardly I portrayed a sense of acceptance and contentment.
I know that there are no physical obstacles to living a happy loving life with an understanding and sharing partner. I know this, so i don't need to have advice or suggestions of a course of living.
I also realise that the reason i have reached this point in my life on my own might not only be as a result of the stoma or indeed the Crohns, it could simply be me. I think my experiences tell me otherwise, because i was there though.
So, having Crohns at 24 led to me to having Crohns at 25 with a stoma. As i have explained, its my experience, and from my experience, this event made my position different and difficult. I know the stoma the bag and its 'contents' have been factors, because I was there.
Yet, as i have said many times, this is my experience, my life. Its how things have panned out for me, with so many variables, me , partners, events etc. I don't want anyone with a stoma to read this negatively as if this is a template for their future. Far from it, it is merely me trying to be as honest and open about how having a stoma affected me, it might even provide advice and comfort.
The comfort and advice being that i think as much goes on in the head trying to deal with new relationships or old ones for that matter, as the physicalities. It did for me, and as I say my life is the only one i can base my blog on.
As always, thankyou for taking the time to read this. It is a window of sorts, into my body and mind 

Young, Free and Where's the Nearest Toilet?

Being young is a joy, I can just about recall it! That feeling that you can do anything, experience everything, burn the candle at both ends and not suffer in anyway! Young and optimistic, carefree and blase about what the future holds. Aware of the effects of having Crohns and the consquences in the event of a problem didn't matter. When you're young, you're fearless and think you can deal with anything. It won't happen anyway, when you're young!
It was a relief to me in my late teens, to think i'd avoided another surgery, another bullet heading my way had miraculously been deflected by steroids.
Why not enjoy and make the most of it?
So as you do, you live life to the full, i was going to participate in all the things and experiences my work friends and friends generally did.
Travel around the country in the forlorn hope that my football team might cheer us up on a trip back from Torquay or Brighton, or wherever we travelled to for our 90 minutes of footballing brilliance, which usually was far from brilliant and was miserable and dour. It wasn't always about the football, which is a good job really! It was the craic of  a group of people, male and female , daft enough to commit ourselves to the Tigers rain or shine, usually rain.  It was a pre match community enjoying a drink and being committed to a cause. Commited in those days could have several definitions!
A pre match pint and meal, a standard football pie in the ground.
Football was a small amount of 'enjoyment' but was very important as a focal point.
Much of the rest was exactly what young people got up to at that time in the late 70' through to the 80's.
This was all so far from being stuck in a hospital ward with a bedpan, drips and catheters. Being dependent on nursing staff for what seemed like every possible thing, dignity in tatters, handing yourself over to them!
Why not enjoy it? Why not make the most of travelling, living and sharing 'everything' with friends, thriving on freedom? Except it was never quite 'everything'
'Everything' didn't include never eating anything before travelling for fear of the crohns rearing its head and desperately needing to use the toilet, the embarrassment , abdominal cramp and anxiety!
'Everything didn't include consciously taking note of the location and quality of toilet facilities, before and during the football. This was only a diluted, censored version of 'everything'
'Everything' didn't include a number of things that sure as hell are not going to hell you or anyone else about!.
I could keep the rest to myself, unless somehow my embarrassment or discomfort became obvious.
So living life to the full meant exactly what it said on the tin. Not just in this area but generally, socialising , meeting people , all the other things that were and will remain private.
Yet, despite my desire to be carefree and blase, no matter what i was getting up to, Crohns was always with me, getting to me, reminding me I can't enjoy this totally, i must worry, get anxious about many things, a lot of things Crohns sufferers know only too well about.
Nevertheless, i was young, the candle still burnt away, and i often had to deal with some of the 'rough' bits with those warm, enjoyable 'smooth' bits that we all need, young and old.
I continued with certain medications, still managing to put the thought of a scalpel or surgeon to the back of my mind.
It was a great time despite all the negatives Crohns did to me, and there were quite a few. Life was sweet and full, i even allowed myself to treat Crohns as an irritating imposter.
I can always look back and say they were great enjoyable carefree times, with quite a few less enjoyable experiences mingled in. 
Crohns won't take that time away from me, whetever it does now or in the future, it's mine. It's mine, will always be mine, no matter whether it was a period of carefree 'calm' before a 'storm'

Crohns- The Right Decisions at the Right times

In the first years of crohns, as with all conditions, it is often the role of the patient to take on the pain and suffering, deal with the tests, and endure any treatment whether medical or physical.
I was no different in 1976 through the first period. It wasn't an advantage to be young and naive, inexpectant of what was to occur. It was a naivety, for me, leaving me afraid and unaware of what was and is happening.
As this was so long back, I hope such experiences are few and far between. It would be wonderful to imagine that most young people who develop the symptoms and have to undergo tests, etc. are 'coached' through this difficult time by medical professions and trained staff in this field. Perhaps some feedback to this could confirm one way or another?
When you consider that at such a young age we are not even able to consent to surgery, which is actually consent to letting surgeons do what they need when they get in there!
I never really considered it, but that must have been such an enormous source of stress and anxiety for my parents.
After my surgery, the first one, bowel resection with added septicaemia and deep vein thrombosis thrown in for good measure, I then attempted to re-construct a life as a schoolboy preparing for O level exams, remember them?
All of the educational advisers suggested holding me back a year, in order to fulfil my potential and achieve the resuts i should warrant.  Alas, i knew better and went ahead with exams, achieving grades of acceptability, rather than of note. My intention was to 'catch up' in the 6th form.
So, when out of the blue, a friend suggested a job working full time was available, i stupidly and short-sightedly went ahead, got interviewed, and all the plans changed.
If i would offer one piece of advice to anyone in a similar situation now, it's a lifetime is a long time, don't jump in not thinking long term, consider all options, consider the stress of work versus study and recuperation. If after consideration, the same conclusion is reached, that's cool.
Needless to say, taking on work, the daily slog and hidden pressure of the effects of crohns, meant a big flare up occurred. A flare up which didn't require surgery but what would now probably be seen as intensive high doses of intravenous steroid. This is a treatment i personally hold responsible for a number of secondary problems, osteoporosis etc.,
It is amazing how you see the world at such a young age and stuck in hospital. I recall feeling fortunate and elated the treatment was strong, made me feel better, and importantly meant no surgery just now. I knew i didn't want more at that time.
That's where stupidity, naivety and false optimism gets you!
In your teens you want to go out to 'play' do the things your friends are up to and enjoy the things they 'enjoy'. I am assuming the terms 'play' and 'enjoy' are delivering different images to things like playing on roundabouts and more innocent pastimes. At 17 going on 18 you know you have and can suffer, but what the hell! life is living!
So my early years with my acquaintance Crohns had me as low as i could get, up to a level which was significantly better than that but not the same as before, and out on the town enjoying what 18 year olds plus like to do!
Like most things in life, decisions can be taken which seem easy and correct at the time. Decisions that are taken in isolation, because we humans are not able to see into the future!
My future was that i needed significant surgery which resulted in a colostomy by the time i was 25. i intend to focus the effects of having a stoma in a later blog.

We Care We Share

today's blog is so late its almost tomorow's !
It has become very apparent to me through time and experience, that despite the many cruel, violent, indiscriminate and pointless acts that occur in this world, as well as sadistic illnesses, there exist so many good compassionate and fair people.
We are living in age when it is becoming conveniently fashionable to use the sick and disabled as targets to discriminate and victimise.
Sadly, some fall for this and show they are lacking in the basic qualities that make us caring humans.
Yet in recent times i have come to the conclusion that there is a massive quantity of people who care so much for strangers, friends or acquaintances.This applies to Crohns sufferers as carers and recipients of care and compassion, as it does in all other areas.
With Crohns i see an abundance of people willing to share from and share with others to help life a little more tolerable. I have been offered fantastic help and compassion from fellow crohnies as well as from people who do not have the illness. I am sure many other sufferers have experienced the same.
As life progresses, and it seems more likely that the State is hoping to place more on the comfort and care of sufferers of illnesses, to family, friends and charity, the humanity i have witnessed gives me some hope.
Nevertheless, i continue to fight to maintain the care of the vulnerable, sick and disabled is fundamental as part of a civilised, caring society.
I believe in the spirit of people to show their caring qualities inspite of their own suffering. I witness it daily in what might be small, insignificant acts that might help much more significantly than they realise.
Crohns, as of today, remains incurable and chronic. It seems unlikely this will change drastically in the foreseeable future. It means the dependence on others will remain a big part in living with the illness.
I for one see some hope that compassion exists in abundance.
Sadly, in my humble opinion, the compassion, care and empathy i talk about, does not exist in our political rulers. They hide behind fake excuses to attack us and drive us into the dirt!
Hopefully, the many who care, the masses who share, will win. We will then have a land fit to call civilised and a 'society'.

Crohns and the NHS

A slight tangent today, this blog has been attempt to look at the implications of getting crohns, living a life with the illness, and the realities of living that life.
Today, it struck me that, though i have mentioned the dedication of the doctors, nurses and staff who have and are caring for me and my welfare, i have been remiss in identifying the role they play and the NHS in their care for people like me.
This is against a backdrop where the NHS as we know it is seriously being compromised. This will have significant implications for patients with chronic illness and their wellbeing.
Firstly, the NHS is not perfect, mistakes are made and on occasions some people do not get the care the NHS is noted for.
All that said, from the day i walked onto an NHS ward to date, I have been indebted for the institution  for allowing me the chance to be treated by, cared for and given support by such dedication and expertise.
Doctors and Nurses have played such a significant part in my life both in and out of hospital. I have had occasions where the fear and desperation i have known has been shouldered by NHS staff and they have been responsible for setting me on the road to remission and some comfort in my mind and body. I couldn't do adequate justice to the many occasions when a nurse has helped bring me back from the brink, or doctor offered knowledge to keep medications balanced and appropriate to my crohns and secondary problems.
Surgeons have had to remove disease from me when medicine has failed after all has been attempted and not succeeded.
It has been the structure that has allowed me to get to this place, which, whilst chronic and complex and neverending, provides me with the confidence of my treatment and if necessary surgery.
It hasn't always got things right,but i am here, i am alive and i am still battling what i get thrown at me.
I am fearful for the future of my care with the destabilising of everything about it as a National Health Service. It seems increasingly less likely that people like me with crohns will be viewed solely as a patient. Its alarming  for the large numbers of patients who endure chronic illness, whether crohns or some other condition, that we are rapidly becoming customers.
With that comes the spectre of cost, viability of treatments and general concern for how we will be seen in a future health system not secure in the original philosophy of the NHS.

Crohns, Life and Other 'Hobbies'

I am a crohnie whether i like it or not! My status was bestowed upon me in 1976, with no sign of tape cutting, cameras nor any paparazzi rushing to rummage through my toiletries. I have 'enjoyed' some difficult stressful times because of the 'award', equally i have also had so many enjoyable times on wards with other patients and nurses. I can't say whether i am a better person for being a crohnie, you only get one life! I know i am different to the one i expected to be, but that goes for anyone in life.
So many people talk about crohns not being them, thats true and a  reality. It forces our hand down roads we would not necessarily have gone but it also helps us say ' i hate you with a passion, but you are not going to win'! We do experience things , endure pain and see sides to life that we would never have expected. Yet, despite our inner darkness and fears, we still go on, we enjoy, we share and love, we continue with life!
I am a crohnie, but i am a football supporter, using the term loosely, because my team struggles along doing silly things. Once a tiger always a tiger, come on you 'ull!
I am a political animal, i don't stand aside quietly letting others enjoy or endure without having a view, a strong view. Some won't agree with my politics, they are entitled to. I am a socialist. i believe in justice and equality in everything, healthcare and education,university and  community care for the old. Socialism, to me, is about caring for the weakest, we could all be there at one stage in the future. So if you look away now, in the future no one will be there to look out for you.
I love literature and art, it inspires and opens up worlds i'll never go. It tells me about people and relationships, it enlightens me. it entertains me.
I adore music in most forms, without it i'm dead! Music is central to my being, often my saviour, my hope and optimism. Music floods through my ears and dominates me.
I am a crohnie but i don't believe in a superior being. When i die i am gone, i live on in the memory of others until i am only a distant memory.
I am a crohnie but i see the beauty in this world as well as the horror.I feel all of that in my heart and head.
I am a crohnie but i have many family members and friends who help me and me them. Without them i would be dragging along the bottom, aimlessly lost.
I am a crohnie but i can see the good in people and the bad, they could be crohnies or not. I am a crohnie but i am weak, vulnerable and imperfect in my character. I can give up and not risk things for fear of failure and rejection. I can attempt things and fail miserably, leaving good intentions or things undone.
I am a crohnie and i make mistakes, sometimes they hurt me, sometimes others get hurt. Nevertheless i am a crohnie, a crohnie is what i'll be all my life, but it will not be the legacy of my life. i have limits from crohns but all the things i have outlined are me,
John Peter Ingamells, born Kingston upon Hull 21 August 1961, music, care , books ,literature,  art , family, friends, politics, Hull City AFC, and so on, this is who i am , i also happen to be a crohnie.

If I Knew then what I Know Now

Crohns is as much a part of who I am as anything else. When diagnosed I was told all the obvious things about incurable condition, flare-up and remission. All things anyone with chronic ill health needs.
As life as progressed, I have become accustomed to getting additional problems, problems which in their own right are debilitating and need attention, cause pain and suffering, and to be truthful, i could do without!
I have a great relationship with my consultant and she treats me as an equal, no talking down or inquisition! Most occasions i have deveoped additional problems, had tests and then gone to see her, she looks at me and always the friendly smile, then says its often the case that crohns sufferers develop this  or the same the next time! It's getting very regular now , blood clotting, gall stones, varices, obviously arthritis, osteoporosis..now liver issues , enlarged spleen, i'd better stop , don't want to scare the kids!
Now, i don't include this to suggest you have Crohns you will get xyz, because everyone of us as individuals get different problems and have different issues. I merely suggest that when you start the trip you imagine a bumpy ride, but one that goes in a formulated direction. In reality that can be so wrong.
Putting myself in my consultant or any other Crohnies consultants position, i think i wouldn't suggest to a patient that this or that could happen. common sense i suppose. My submission is that we, as crohnies can educate ourselves about potential secondary issues and complications, but its best for us to use that information as that and not assume anything!
I know that crohns alone is such a tortuous experience at times,  that on its own we all battle against a strong opponent, get both help and hindrance from medications, and should enjoy the victories we have over it!
One of the side issues that does seem more and more prevalent in relation to Crohns is insomnia, mild or chronic. I am interested to know just how prevalent it is, having made an attempt for response on twitter I got a largely deafening silence or my question/myself was just ignored!
Crohns is a companion however much we like it, i think ignorance isn't necessarily bliss and knowledge is power, cliche overload!! We as patients can choose to think we have a chronic condition and only focus when a flare up occurs or make some attempt to 'arm' ourselves against it for the future.
There is no definitive answer, this is my observation.

crohns disease and community

crohns disease has always meant many things to me over these years, mostly private un mentioned things, locked away for a rainy day of 'dishing out' dark thoughts. I know that i was slow on the uptake at 14, 15 .. I knew this illness had put me in places, with people, that i never imagined. The 'shame' of indignity and fear, things you hope to only have to reveal to the closest, trusted loved ones. Yet, i can recall re-running saying things, even then to try understate my embarrassment and fear, to help me, or make a young nurse feel more comfortable!
To be honest, Crohns has given me so many visible obvious things to 'display' to attempt to distract away from the deeper pain that is not so visible. I can pass off a self deprecating comment about an embarrassment or scar, to help me or a doctor , and over the years this has become my shield. I realised that humour or sarcasm can tell the medics how 'big and 'strong' i am, how i can cope and move on.
Yet, over time hidden scars and damage gets worse and infects your being, they can influence your mood and how you see people. They can make you use a shield of protection to show how you cope with pain and more problems with a smile and philosophical retort.
I think i am philosophical and by nature not bitter or angry.
Yet, the shield allows you to accept yourself as a person in the eyes of others, when in reality it hides regrets and wishes, lost loves and dead ends. It gives you an apparent strength when you are really as vulnerable as every one whether fully fit or carrying the burden of illness. It allows you to be content with travelling a journey alone, excepting family and friends that is, when in reality, deep down, the care and love of someone would help carry the burden at times when it gets too heavy for one to do. The shield helps you to maintain a lie a protective force field if you like.
You would think that 36 years should mean you have the wisdom and openness to be in a place where 'what you see is genuine'. In reality its merely time, lost time at that. Time spent being brave when you were scared to hell; time being alone and okay, when you needed someone to hold your hand; time accepting 'this is it' when underneath  thinking is this it?
I know in my heart that this shield is now also a burden. It is a mistake to use it as a protective method. Its harder at the time to be honest but weak and vulnerable, then in the long run let the honesty come out and prevent that very vulnerability to multiply and gain strength.
I know that anyone with any illness but specifically Crohns should just open up at the start, express their 'shame' and fears. they should say they can't do it alone and are afraid what the future holds.
The hardest part is opening up at the start, it should mean you are the one to benefit in the long run.

So How Are You feeling Today?

Over the years i have lived with crohns, i have had the standard question and answer 'game' which many of us must endure. 'how are you feeling today'? If i could quantify the occasions this has been asked in relation to my condition i would be a mathematical genius! The reason i pose the question in a headed blog, is the fact that many things are actually going on surrounding this question.
I am sure most non sufferers, who might be loved ones  or friends feel this is a simple straightforward question with no edge to it. In many ways it is. Sadly, in my experience, the question is usually posed with no real expectation of a response detailing how you actually feel, more as a matter of courtesy, this is not intended to slur those who pose the question by the way.
This question is often loaded with the expectation that it is easy to not go into actual details of how you genuinely feel, the pain, anxiety and self doubts, lack of self esteem etc. It actually becomes a ritual which in itself ends up being irrelevant.
All to often, speaking personally, i have offered a simple 'okay' or ' a little better' rather than occupy the time and space going into the feelings of lethargy you might have as a result of acute diarrhea, the pain  and nausea, the insomnia...I am sure I am not alone in not responding honestly because i believe the question is an expression of concern for you, not really a genuine need for a 'blow by blow' account of your state of health.
I would imagine very few crohns patients open up and tell all about how and where they are at at this time. Yet again it becomes another building block to the wall of self deception and putting on a mask of resilience. We become the 'fighter' getting on when we know we might be at our lowest ebb, feeling physically terrible and having so low a self esteem it doesn't register!
To add to this 'mask' we can often show how much control and contentment we have by trying to assist others in  their struggle. As we are offering our support, we might be struggling with our own feelings of low self esteem and panicking about the status of the crohns.
Crohns plays tricks with you making you believe you need to be resilient and determined, don't let it win by admitting weakness or how deep in the depths you are! You play along, thinking it is the best most fruitful character to take on.
I would like to guess that most crohns patients have or have had massive self esteem issues and never told anyone. I would also expect most of us have yearned to be able to scream out 'i can't cope, i need help', but have actually entered into the 'game'.
As i have stated before i believe firmly that crohns is an attack on you mentally as well as physically. The participation in 'adopting a persona' can often deepen the feeling of low self esteem, adding to the physical damage.
To say we need to be honest and open up our hearts and souls sounds easy on paper, but is very hard in practice. Nevertheless, we all know the difference between how we feel and how we portray how we feel. We need to assess the advantages of being open and honest and trying to cope with the entire body, against putting down the blinds and deluded the questioner and more importantly ourselves.

The Drugs do Work , but they can also Work on Other Things

The nature of Crohns to anyone not familiar, is that sufferers can live periods of 'remission' from the actual illness, often with the assistance of drugs, and not requiring surgery. Obviously the reverse is that the only means to get out of a 'flare up' can often  only be a surgical one, which i will blog about at another time.
Although the number of medications and their positive effects have improved over the years, the basic equation of flare-up from a period of remission vs medication or surgery remain the case. Like many long term sufferers i have entered into this arrangement many times, hoping the medical benefits will get me into remission and there might be no need to call on the surgeons again!
If it was a simple judgement call of medication = good surgical =bad, then sufferers lives would at least be made a touch simpler. Sadly, as with much about Crohns and IBD, it is never that clear cut.
At first, from a personal perspective, i was seduced into the belief that steroids would be a godsend , no need to endure surgery, either IV  or oral drugs. Back in the day, medics were experts in keeping patients content and on-board with this notion. Of course additional medication can and is introduced, but I was always encouraged to think, less surgery the better. Steroid treatment being the goto drug at the time being the preferred choice by medics.
Don't be mistaken that i am going to go all negative and anti this course, i must admit that they have halted the threat of steroids, put me in remission, and 'saved my life'. The problem for most long term patients is the side effects and disadvantages steroids and other drugs give us sufferers.
I don't want to scare the hell out of new patients nor make them fear certain treatments, everyone is an individual, responds to drugs very differently and can live in remission happily with minimal medication or effects.
The alternative is that sufferers can entire a spiral of needing surgery, going into a period of remission, another flare up and first course can be steroids or/and other drugs. There are many negative effects of the steroids, in fact that applies to all drugs. I've never come across one medication that has no side effects, thats not how life is!
My opinion is that each and every sufferer needs to arm themself with information, pro and con, be prepared for consultations by writing down questions and input. To do nothing and taking everything on face value is not an option.
We have to accept that it is not feasible to surgically remove diseased bowel every time it 'misbehaves', that is fact, however much we dislike medication and side effects. We can play as active a role as is possible in taking control of treatment and getting the facts of the benefits and disadvantages of drugs.
I can personally vouch for the fact that drugs can and do cause additional problems. I don't want to deal with them now. I can say how effective some medications can be as well as the reverse. It is a juggling process over time to keep Crohns 'sweet' and in remission. It is also a process you must try to fully participate in as well and voice opposition when needed, and offer alternative avenues.
When all is said and done, it is you with the illness, you who benefits from drugs or surgery. You are also the one who suffers from the negative effects of treatments the side effects, and any damage done.
Anyone despite the fact they are feeling in pain and suffering, despite their mental state or feeling of despair, must try grasp control of the care they are offered. This isn't easy, it can be a batte of wills or a fight you don't want to take on because you just want to crawl up in a ball and hope it goes away!
Its so easy to want to give in and simply accept what you are told, take the drugs and hope the surgeons don't come calling!! I've been there so i'm not suggesting i am this resilient person who always thinks clearly and gets what i want! No way, It has taken some years for me to get to being more than an equal partner in my care with the consultant.
To conclude, Crohns , as we all know is cruel, indiscriminate and attacks your body and spirit. Despite this, we must take control of our care with the expert advice of consultant, etc. We must try to gain knowledge of pros and cons of drugs from other sufferers, as well as other references.
The bottom line, however, is that each and everyone of us is different, individual and react to all treatments or surgeries differently.  That must be the first piece of information we start with.

Social Media and Crohns

In earlier posts, my emphasis has been more on my feelings and experiences at being diagnosed with the illness, what it felt like at the time, in retrospect and the isolation and feeling of being on a journey.
I posted yesterday how i have come across the sentiment,often cruelly and ignorantly, that the illness and how to deal with it was in the mind.
Indeed i stressed that it is in the mind, in that Crohns plants demons there, nagging away at you, who you are, your hopes and fears, questioning your self worth and future.
Today, i want to try to evaluate how i see crohns and indeed any illness, be it acute or chronic, in its relationship with facebook, twitter and similar.
I have become increasingly convinced that social media is the future mechanism for connecting sufferers of crohns together, offering information, support and care, It is a proper community, legitimately a community of different individuals, with a common bond of the illness.
We are all vulnerable to the mental and physical frailties and damage crohns does. We know the signs, we feel the pain, we share the anxiety and fears. I have seen many people post about their illness, especially on twitter, clearly at a loss, in a dark place and searching for help and someone who really understands. The value of twitter especially, is that there are individuals willing to help others unburden their problems onto them. Many i have seen are so low, so desperate, they merely need to know that there is someone out there who cares and understands them.
I know many who invest time to coax people 'away from that dark place' towards somewhere brighter, more positive, more optimistic. All in some way can help, sharing a joke, a story, posting some music or just listening to a tweet, comfort to a person in despair. This is where i feel twitter and social media provide that simple thing that is not always available at a GP, Consultant appointment or mere physical self help meeting.
Don't get me wrong, i have been involved in face to face Crohns meetings with speakers and participants, they do help and offer a valuable resource. In my experience many of these meetings leave sufferers benefitting, but unable to really voice their problems direct to people fearing judgement and repercussions in some way.
On twitter, i see people willing to totally open up to others because of this 'anonymity'. They are prepared to reveal innermost feelings and open their hearts to seek help. I think the very fact that this is the arena and you must consider your every word and emotion in tweeting, tells us much about the nature of how crohns affects our morale and confidence. Equally it offers genuine hope for the future for sufferers and friends and families, giving crohnies belief in others and consequently in themselves.
Don't be mistaken into thinking that errors are not made on twitter, and people get hurt through words meant or unintended, its not always easy to express the actual emotion in written form. It is also very easy to cause harm, when people receiving and giving advice are often in pain, low and afraid.
Nevertheless, i see good things ahead for Crohns sufferers on twitter and other social media. The spreading of medical experience and knowledge can only be a help. The access to medical professionals, often at the cutting edge of progress must be an advantage.
The future , in my view, is good for the Global Crohns Community on social media. It has to be progress that a development in treatment in North America can be known almost immediately in Europe.
Crohns is a complex and personal condition. Personally, i have found it difficult to adequately express my feelings to family members for many years.
I have willingly shared some miserable 'secret tears and pain' to other crohnies in such a relatively short time of knowing them.
I am optimistic for the future for sufferers of crohns and IBD, that gives me comfort.

It's all in the mind!

Over the years with crohn's disease, i have encountered numerous examples of the most tactless in the world who cannot grasp the concept that they surgically remove disease for a reason, not simply because you are stressed or your brain is 'telling'you you are in pain. I am sure we all know them and have come across them. Some in our families, some are in the medical world. Others exist in other areas.
I realised from my early time with this illness that a large part of dealing with it would be how I could cope mentally with everything about Crohns. Not only my own dark, negative thoughts about how i felt, my fears and private limitations. Crohns is hard to deal with because it is not really that well understood, even by family members, who should know better. This does little for the stress levels.
I am certain all sufferers look into the mirror, trying to deal with side effects of drugs or looking pale, emaciated and exhausted. I imagine most have wondered who it was staring back at them, especially when 'moonface' from steroids or malnutrition makes your image skeletal? It is a difficult message to your brain telling you your treatment will transform the way you appear, or your body has become a sick test arena to see how ashen and thin you can look, while still actually pumping blood around the body!
I remember  having an early flare up back in the days when personal videos were not a popular possession, never mind personal computers. I glimpsed a face in the mirror of a hospital day room, bloated, shiny with eyes staring!  Realising it was me it became obvious that steroids, despite their obvious benefits, have considerable disadvantages!
All i have said in this piece revolves around, my mind, my reflections on how people dealt with and deal with me, as well as my mind and how i have viewed my self, reflected on my body and the effects the condition and treatments have had on it.
The heading of it 'all being in the mind', is both a sarcastic dig at all of those 'well-informed' people who offer similar inflammatory and ignorant advice to chronic illness generally + an admission that it is not only a daily battle with crohns over the possession and working of your body but a fight inside your own head to deal with the demons crohns inspires!
After all these years, it doesn't really go away. This struggle within yourself, the self doubting, the lack of self esteem, the defeatism, the despair and gloom, all remain stuck away in the brain and being, waiting to emerge on a bad day. They do emerge as well, sometimes with less severity, other times all guns blazing!
I hope to be honest enough to relate much of what my mind has spilled out, mainly against myself and self worth , but also, sadly against others. I hope this blog will be honest and as close to the truth of it all as is possible. This is my intention.
It will be difficult, emotions are not temporary, they are with you for life! The same as self esteem and worth, i wish i could say that on a given day i packed it all away and danced off into the sunset singing 'what a wonderful world' but its not like that.
To end todays contribution, which is amazingly lacking in mentions of bowels, body fluids and diarrhea, i'd say that everyone with crohns experiences highs and lows, doubts and rushes of positivity. We all must know the feeling of overcoming a flare up or getting through surgery and feeling as if we are moving forward. We all know the sense of foreboding of a flare up on the horizon, will medication deal with it or surgery?
All sufferers have these physical rides of emotion! Our bodies take one hell of a hammering, sometimes we feel we are so low it will be hard to get anywhere close to the strength and energy needed to cope. 
The mind is on this ride on a daily basis, struggling with ourselves and the world, the illness and mundane realities of living. It is all in the mind, it always will be, but not in the way that those who have not one clue mean!

From the Shock of the Hospital to the Questions and Struggles

Having gone into the hospital in pain and fear, in an adult ward surrounded by people i now had to spend almost every minute of the day with, my reality would soon be Doctor's questions and then judgement and then many tests.
It was obvious to me that i was not well, in great pain, suffering massive weight loss and sickness and diarrhea. However, the medics thought that i was somehow stressed and anxious as a result of impending examinations, despite me telling them i thought i had what my dad had, Crohns, diagnosed in 1968.
So, they looked inside my head to try figure why i was sick losing weight and looking like crap. they mentioned bulimia and anorexia. I knew it wasn't, i was in agony, my pain was real! the weight was coming off from a physical condition.
Eventually, they accepted it was physical. this was when the 'fun' began!
From being a naive 13 year old boy, i then experienced as many tests incorporating scopes, cameras, biopsies, which explored the dark recesses of my body, no orifice was free from exploration. Talk about Fantastic Journey!
From never wanting a needle i almost had permanent drips in with bags and bags of electrolytes, treatments etc.
For a child with no real experience of hospitals , it was a total shock to have tubes, catheters and biopsies everywhere. not forgetting a naso-gastric tube.
This is not a period i look back to with any fondness, only the shock and the indignity, It didn't make it any easier if it was a male or female nurse, technician or radiographer. I can remember thinking how long does this go on for, how many more places can they come up with to probe?
Then, they finally tell me, yes i was very right its Crohns you will be having surgery on saturday, in 3 days.
Surgery is not a pleasant experience, but i can remember it vividly. It was chucking it down outside my window, around 6am a nurse came to catheterize me, another experience a 13 year old boy doesn't expect. Then, off to surgery, pain, medication, more pain more medication.
I got through that period then had further complications, thrombosis ( dvt ) electrolytes here, there and everywhere...
So, 1976, the hottest summer on record at the time, i don't recall it for that reason. I remeber this as the start of my new life. How things in retrospect would be for me and many other crohns sufferers.
I do recall through all this time, surrounded by men on the wards as patients, nurses and no young people, what are my school mates doing, what about my brother and sister, what were they up to and thinking, how were my family dealing with this? I really had no idea, visiting was a chance for them and me to put a face on, not always achieved.
That summer i saw my first person die, right next to me in a shower cubicle. I can see his face as his life was leaving him, the nurse quickly shuffling me out of the washrooms. I'd never thought about death and dying before that, looking into someone's eyes as they go, focuses the mind.
It always felt different after that on the ward, do i get close to someone, will they die or are they thinking the same about me?
I now look back to this time as the time when my life started afresh, that's not to say prior to that i wasn't happy and had a lovely childhood. Nevertheless i see this time, when crohns became my partner and enemy, as the time my life started in reality. Over time crohns has brought along other problems for me to deal with, its had some wins and i have managed to defeat it at times.
It has been my partner and enemy in equal measures for nearly 36 years, my 1st surgery was almost exactly 36 years ago.
I will try deal with things in future blogs in the present, but using the past to illustrate who i am and why i am this person.                            

Crohns Disease 1975/6

Being a teenager and getting crohns disease.

It was christmas 1975, i recall the smell of the season, the christmas films and the joy of expectation of presents. I do remember having a very severe abdominal pain, nothing like i had felt up to then, at age 13. then came a strong nausea and severe diarrhea. My family, oblivious to my problems, it was the festive period after all, doing what was right for me, my brother and sister.
Flip ahead to early spring, mock examinations, not feeling any better, experiencing sever pain, sickness and running to the toilet rolls. I didn’t know where i was, was i stressed because of school and exams, or, as i think i knew, was something wrong?
Eventually, unable to eat, being sick and curled up into a foetal position, and desperate for relief and answers, it was clear the weight was coming off me fast. My GP stupidly suggested it was puberty, a phase, the stresses of change. anything but what it really was. Reluctantly he referred me to Gastro at my local hospital. It appeared to be what I wanted, but why was i not sure?
Its late April, no energy, weight gone, can’t eat, severe diarrhea and sickness. Its hospital appointment day. I remember naively saying to my mother ” don’t let them inject me, i hate needles, please mam ” The Dr looks me up and down, examines me thoroughly, prodding my bones and rapidly diminishing body fat. He then gets out a glove..all crohns sufferers know what that means. It meant much more as a pretty naive, not very mature teen. After that experience, and being told i was being admitted, to an adult ward as well, I realised my life had changed, the future was unclear.
That first night on the adult ward, the nurses mothered me, other patients, all adult protected me.As the night staff switched the main lights off, my world had become bedpans, drips and the prospect of future ‘tests’. I ask the nurses what these tests would be, but get very non specific responses. Naively, i assumed they were 100% honest and knew little, they knew a lot but decided to protect me. I can’t recall how much sleep i got that first night, won’t have been much. I knew the pain and sickness, the dashes to the toilets, meant i was where i should be.
I was scared to hell and didn’t know what was happening. In many ways its a good thing I didn’t know what was to happen in the next 4 months, months which have had a bearing on the rest of my life and who i am today.
I cannot dwell adequately on this period giving it justice, but think this stage of the illness and my first investigations, treatment and surgery will be part of the blog on reflection. It forms so much of my relationship with crohns as a teenager with all the issues that brings.

being a teenager and getting crohns disease.

It was christmas 1975, i recall the smell of the season, the christmas films and the joy of expectation of presents. I do remember having a very severe abdominal pain, nothing like i had felt up to then, at age 13. then came a strong nausea and severe diarrhea. My family, oblivious to my problems, it was the festive period after all, doing what was right for me, my brother and sister.
Flip ahead to early spring, mock examinations, not feeling any better, experiencing sever pain, sickness and running to the toilet rolls. I didn’t know where i was, was i stressed because of school and exams, or, as i think i knew, was something wrong?
Eventually, unable to eat, being sick and curled up into a foetal position, and desperate for relief and answers, it was clear the weight was coming off me fast. My GP stupidly suggested it was puberty, a phase, the stresses of change. anything but what it really was. Reluctantly he referred me to Gastro at my local hospital. It appeared to be what I wanted, but why was i not sure?
Its late April, no energy, weight gone, can’t eat, severe diarrhea and sickness. Its hospital appointment day. I remember naively saying to my mother ” don’t let them inject me, i hate needles, please mam ” The Dr looks me up and down, examines me thoroughly, prodding my bones and rapidly diminishing body fat. He then gets out a glove..all crohns sufferers know what that means. It meant much more as a pretty naive, not very mature teen. After that experience, and being told i was being admitted, to an adult ward as well, I realised my life had changed, the future was unclear.
That first night on the adult ward, the nurses mothered me, other patients, all adult protected me.As the night staff switched the main lights off, my world had become bedpans, drips and the prospect of future ‘tests’. I ask the nurses what these tests would be, but get very non specific responses. Naively, i assumed they were 100% honest and knew little, they knew a lot but decided to protect me. I can’t recall how much sleep i got that first night, won’t have been much. I knew the pain and sickness, the dashes to the toilets, meant i was where i should be.
I was scared to hell and didn’t know what was happening. In many ways its a good thing I didn’t know what was to happen in the next 4 months, months which have had a bearing on the rest of my life and who i am today.
I cannot dwell adequately on this period giving it justice, but think this stage of the illness and my first investigations, treatment and surgery will be part of the blog on reflection. It forms so much of my relationship with crohns as a teenager with all the issues that brings.