“Coming to Terms with a Stoma” – shared by Caz, Invisibly Me Blog

This is a very open and honest post that Caz from Invisibly Me blog has shared with Talk Health Partnership Blog – she really inspires me and I hope that you feel the same.  Even if you aren’t one of the chronic illness community, please read this amazing young lady’s story!

Image from Invisibly Me blog

“Some people get a day. Some may get a week, a month, a year. Others may get no warning, simply waking up with a new life.

From IBD and cancer, to colonic inertia, pelvic floor dysfunction and bowel trauma, stoma surgery is undertaken for various reasons. It may be temporary, with the hopes of being reversed at a later date, or it may be permanent.

One thing remains constant: having a stoma is a big deal, though the experience of life with a stoma is as different as every individual is unique.

Pre-Op : Ignorance Is Bliss?

Although I had forewarning and agreed to the surgery, even as I was being rolled in to the operating room my brain hadn’t quite absorbed what was happening. I talked to my parents about it as though it were a clinical rather than personal issue, as though it were happening to someone else. While my parents were upset, I was busy preparing for surgery and focusing on the practical things I could do. It was my third operation but it didn’t feel any easier to get my head around.

In some ways, there was an element of ‘ignorance is bliss’. I didn’t want to know too much; just enough to prepare myself, not too much to scare myself.”

Please continue reading the full article here

Chronic pain, opiates…& where does that leave me? (Part 2)

continuing from yesterday’s republished post, this is the follow up written at the time with a few additions and adjustments for today…..

So where does this leave me?  I am the person sitting in that seat desperately in need of help.  This “me” refers to all of us experiencing chronic pain whatever the reason – pain that has lasted for longer than 12 weeks – 6 months depending upon who you read!

From that first visit to our general practitioner to the physio to the surgeon, it can feel like everyone is giving conflicting advice.  I don’t blame the GPs for starting so many of us on opiates.  When the gabapentin or lyrica isn’t sufficient, and the amitryptilline doesn’t touch the sides, there isn’t much else left to turn to when this desperate individual is begging for help. images (20) In the same way, how many of us have surgery out of desperation?  I am sure that the neurosurgeon who performed my first fusion really didn’t know what else to do with this weeping woman on his consulting room floor, declaring she couldn’t take any more!  I don’t think that anyone takes these drugs lightly as the side effects can be so debilitating and vary from person to person.  The consultant from my last job prescribed my first cocktail and I never dreamt that I would be taking them for so long or quite how they would affect me.

We’re prescribed tramadol, sevredol, oromorph, MST, oxynorm/contin, and at first there is usually some relief.  For me the drugs never completely masked the pain and the dose of pregabalin was soon topping the scale and the oxynorm started creeping upwards soon to be replaced with the long acting variety.  I smile now when I think how at work the “control” drugs are kept in double locked cupboards and yet my bottle of oxynorm was stuck on the kitchen window sill to take a quick swig when the pain became too much.  My GP never tried to limit amounts and gradually increased the dose over the years.  I had also been prescribed mirtazepine to take at night – another antidepressant drug prescribed by my old consultant.  The side effects were horrendous.  I tossed and turned all night yet was unable to function the next morning to the extent that I knew the kids were in the room, but I couldn’t open my eyes.  Eventually I weaned myself off. But at my very first appointment at St Thomas’ Dr P took one look at my meds and informed me that the opiates would have to be reduced.  Yes, he did explain why with the reasons from part 1, but I think that everything that came after was a blank.  There is a feeling of panic – how on earth will I cope with less than I am taking?  This isn’t even working!  A fear deep in the pit of your stomach as the realisation that you may be forced to try to tolerate higher levels of pain hits home.images (21)

St Thomas’ hospital, London, policy for patients on the spinal cord stimulator programme is that you should not be taking any liquid or injectables; breakthrough doses should be weaned right down before the trial; and high doses of long acting opiates should be weaned down (MST & oxycontin).  I don’t know why different hospitals have different policies.  In my experience over the years consultant preference has always played a huge role in this type of policy.  I have no idea how other countries deal with this issue, but I do know that the USA carry out a huge number of  nerve transmitter inplants each year.  We all have different pain and maybe a one policy fits all is not the right way to go.  Within our group a lady barrister had a chronic bladder problem (interstitial cystitis – for further information have a look at this great blog: Bladder Help) which left her with constant raw areas on the bladder wall.  Her pain had very specific flares resulting in a trip to A&E approx monthly and pethidine injections until the flare subsides.  She was unable to imagine how she could possibly cope during these times of crises.  For further information on bladder related problems visit Layla’s http://bladder-help.com/

Telling us that we must cut back is the easy part. Doing it is somewhat trickier.  There will be several people on SCS facebook support groups at any one time who are currently struggling as the pain spirals up as the drugs go down.  It is tough on nearest and dearest too.  Every time that I have lost the plot in recent weeks, my daughter looks knowingly at the rest of the family and mouths “drugs” – even when she deserves to be yelled at!  So is there a simple answer?  I guess the obvious would be not to prescribe opiates in the first place, but until a suitable alternative becomes available, I don’t believe this will happen any time soon.  So meanwhile, we dependents will have to ask you friends, carers and medics to bare with us as we attempt to wean down our dosage, to offer love, support and most importantly, please don’t judge when the going gets tough, as it certainly will.

Update 2017:  I was still taking oxycontin when I had my scs trial and the permanent implant, although I had managed to reduce the dose.  Over the following months, with huge support from my GP, I continued the process of weaning down my dosage – afterall one of the reasons for having the implant was to be free of drugs.  Bloody mindedness stepped in and I came down the doses considerably quicker than my GP wanted me to, but be under no illusion, it was not easy.  Upset stomach and cramps (for someone with EDS gut issues normally), sweating (additional to POTS symptoms), concentrations issues, insomnia (worse than previously) and more.  I met up with several friends I mad on the pain course last summer, and whilst we had all had different experiences with the scs, we were all agreed that we felt better since ceasing opiates.  We still have chronic pain.  But we have found that we have better nights (remember I can’t have my scs switched on at night so have no relief for my nerve pain) – not necessarily sleeping more, but better quality sleep – and the feeling of being oneself again.

For me a noticeable difference has been an increase in the pain associated with my Ehlers Danlos syndrome in my joints and soft tissues since stopping the oxycontin.  I believe that the opiate was masking my deteriorating condition and I am now having to learn to manage this without resorting to strong opiates again.  On bad days it would be very easy to open those bottles of oxynorm again!  download (1)Funnily enough I actually find that weak opiate based drugs, such as codeine phosphate/paracetamol mixes, give me more side effects causing me to reach for alternatives first (heat, gentle movements, gels etc etc). On the bad days……! The spinal cord stimulator has definitely given me control over the chronic pain in my back and leg caused by nerve root damage – I can go as far as to say that I would be unable to manage life without it.  But I am not drug free – I remain on the highest dose of pregablin/lyrica – and it currently is unable to provide any relief for my other chronic pain.

I plan to cover some of the more recent innovations in neuromodulation and also pregabalin?Lyrica – please send me your thoughts or suggestions!


The Elastic Girl – article from Emily Jane O’Dell

I found this article on Aljazeera.com by Emily Jane O’Dell on living with Ehlers Danlos syndrome – so good to see fellow zebras thriving out there!


Emily Jane O’Dell teaches at Sultan Qaboos University in the Sultanate of Oman.

Muscat, Oman – I am elastic girl. I’m as stretchy as they come, but I’m coming undone. My joints keep dislocating. Tendons tearing, ligaments loosening. Even my voice box is leaping out of place. What’s a girl with messed up glue to do?

“You should join the circus!” adults used to say when I showed them contortionist tricks as a child. Back then, I thought my freakish flexibility was a superpower. But my superhero dreams were dashed when I got hit by a bus while riding my bike in Harlem, learning while in recovery that I have Ehlers-Danlos Syndrome – a rare and incurable connective tissue disorder that can cause dislocating joints, rupturing organs, blindness, and even death from cardiac defects.

I live now in awe of what the body can do, and amazed by how a soul can soldier on despite the body being so broken’ [Photo courtesy of Eddie Chu]
My limber limbs once primed me for master ballet classes with Gelsey Kirkland and All-State varsity sports titles. Reaching the highest levels of Ashtanga yoga was a breeze. But what was once a blessing has become more like a curse.


Dozens of times in a day, my bones would slip from their sockets – my elbows when I swim, my fingers when I type, my shoulders when I open a door. I almost choked to death on my own voice box last summer when I was swimming backstroke and my larynx ripped out of place. Left in its wake – a paralysed vocal cord.

Call me Humpty Dumpty for I am beyond repair. Though I am in need of a number of surgeries, surgeons do not dare to suture my widespread tears. The risk of cutting into my cursed cartilage and stitching up my slow-healing skin is too great. I bear many wounds that will never heal.

I landed in a hospital in Turkmenistan a few years ago after my hips tore out of place while I was researching Sufism and shamanism on the border with Iran. “Eta elastichniya deyavooshka,” the Soviet-trained doctors said in Russian – “This is an elastic girl”.

For full article go to : The Elastic Girl: Living with Ehlers Danlos Syndrome

Spinal Fusion surgery – post on Pain, Love, Hope blog


This is a great description from Lisa of what a spinal fusion is, and she should know as this is her fifth!

“Four Months since Major Back Surgery – How am I doing?”

April 23rd was four months since I had my fifth spinal fusion. I have to have fusions due to having Degenerative Disc Disease that is constantly crawling up my spine and causing it to give me great amounts of pain. How am I doing and is there any changes since the surgery? Was this fifth…


via Four Months Since Major Back Surgery……..How Am I Doing Now? — Pain, Love, Hope

Photo from Buzzfeed


You shoot me down, I won’t fall, I am titanium

images (3)At the moment my downfall seems to be my titanium.  Along with storms Abigail and Barney – who names these storms??  Isn’t Barney a big, purple dinosaur?  Every time that we have a storm, particularly wi
th high winds, a couple of things happen in our house.  The  first is that our crazy mutt stalks the house panting and it is the only time that he won’t  stay in the kitchen at night.  Thunder and lightening or fireworks – he’ll just go into the garden and have a really good bark and then settle down; but when the weather is windy he becomes so upset and agitated, that I have wondered if he experiences some sort of pain.  Do the changes in air pressure cause him a problem with his inner ears in the same way that an aircraft can for us?

The other thing that happens when the weather changes is that the pain in my lower back increases.  It is more than just a drop in the temperature increasing nerve pain.  I feel a growing pressure and coldness in the spine along the whole length of the fusion and nothing will ease it.  Officially I don’t believe that there is any research or medical evidence to explain or corroborate this, but just reading other experiences online makes me think that it can’t be coincidence that so many with metal implants experience these sensations.  I do have one friend who had a titanium plate put into her thigh at The National Orthopaedic Hospital at Stanmore and she was told by her surgeon that changes in air pressure can cause changes in the titanium.  Please don’t get me wrong, titanium has led  to some fantastic breakthroughs in surgery as it is a substance that causes very little reaction when implanted in the human body.  My own experience as a nurse was mainly in the use of osseo integrated implants for facial reconstruction – that is titanium studs anchored into the bones onto which false ears or noses, for example, were attached.  These were a true game changer in the treatment and enhancement of life quality for those undergoing major surgery for head & neck cancers.  The beauty of the titanium is that the bone actually grows into the metal – hence “osseo integrated” – and gives a solid base for prostheses.

When I had my first fusion I was told that the aim was for the pedicle screws to integrate with the spine, the rods to hold it all in place and eventually the bones would fuse with the help of a bone graft.  Unfortunately the bone graft did not take and the metalwork was not in the correct position- hence the need for a revision.  For me I believe that the fusion has increased my mobility problems, aggravated my hypermobile spine and left me more disabled – yes, I do regret having the second op and would urge anyone to think very carefully before undergoing surgery.  But sometimes it really isn’t that easy being in the patient’s seat – particularly when you feel desperate & it can seem like there aren’t many routes open to you.  I felt that my surgeon was only going to refer me for scs assessment after all surgical routes had been explored – so leaving me with no option but to undergo another fusion as a means to an end.  Whilst there should be an honest and open dialogue between patient and medic, it is still a case of our lives in their hands.

Back to David Guetta’s lyrics – but this time I can use them to describe me and my pain.  I am titanium as I battle constant pain:

Pain, “You shout it out,
But I can’t hear a word you say
I’m talking loud, not saying much
I’m criticized but all your bullets ricochet
You shoot me down, but I get up
I’m bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium

images (4)
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
I am titanium”

24 years, 7 ops – but I won’t fall!


Apples & Pears

Last night I dreamt of Manderley……..oops, getting carried away and a tad confused, no Daphne du Maurier am I.  But I really did sleep last night and dream! Slightly odd dreams, but I only woke once which meant I managed a 6 hour stretch again.  No mean feat as the implant site is really painful.  But to wake in the morning, after so many years failing to sleep, and to know I have had hours of unbroken sleep is just wonderful.

I had another slight bleed last night from a different area, so Duncan has added another dressing to the patchwork.  One problem of course is, that as the blood dries, it becomes very stiff and this makes the whole area even more uncomfortable and itchy.  I hope that I will be given some instructions tomorrow about outpatient appointments, dressing change, suture removal – anyone else out there who can tell me if I’ll go back to St T’s or have it all done at my GP’s? Of course, I do have access to my own supply of nurses who did all my dressings after my last surgery…..

Something I need to clear up is that yesterday’s comments regarding the household chores was directed completely at those living under the same roof as me!!  I will quickly point out that yesterday help was on hand in the form of my fab mum, otherwise known as Mrs Mop in Dad’s post, who not only tackled the dog hairs and bathroom, but also braved her granddaughter’sbedroom.  And that is even worse than her grandsons’!!

Duncan spent the morning in the garden, enjoying the last of the summer sun and mowing the grass, for what he sincerely hopes will be the last time.  He gathered cooking apples and pears – I don’t exaggerate when I say that the tree is groaning under the weight of pears.  With my Medtronic Stim switched on, Scotland v USA on the TV, I perched and I started peeling!  3 crumbles and a pie later, I was pretty pleased with myself. It was the surgical pain rather than my pain that finally got to me, so I’m feeling very positive.  The only fly in the ointment today is that I am unable to turn “on & off” with just my programmer “MyStim”, having to use the additional antenna attachment instead.  This may be to be expected whilst the wound site settles…..or I might be doing something wrong. Anyone out there with any experience or answers?

So to the other “apples and pears” as I wend my way to bed and hope for more sweet dreams tonight!

Hit by a bus…..again

Good morning! It was a long evening, as I didn’t arrive back on the ward until 5.40 and we got home in time to watch Strictly with fish and chips.

The procedure was done by a different set of doctors, but the ward nurses and ODAs were familiar faces from a fortnight ago.  Initially no one seemed to know what type of device would be implanted, but then the Medtronic rep, a young man who is very personable & rather easy on the eye (politically incorrect to say, I know) popped in to have a chat.  The upshot of this is that, after a further chat in theatre with Dr Pang, they decided that I could have the rather pricey rechargeable neurostimulator – the implant is slimmer and if cared for correctly it should last longer (9 – 10 years dependant on usage).  Dr P switched me on in recovery and the good news is that the coverage on 4 – 5 volts continues to cover my entire pain area, and I am allowed to use it immediately.  I believe that with a rechargeable device the normal practice at St T’s is that the recipient cannot use it until they have been seen by the CNS in outpatients.  Hope no one gets in trouble – particularly me!IMG_0769

The down side is that I feel pretty rough this time.  On return to the ward my blood pressure was in my boots and I continue to feel nauseous and light headed.  My back is ok if I remain perfectly still…..ha, ha, ha! Not really surprising, I hear you say, as this is the second time in as many weeks to be cut, pulled and pushed – thank goodness for the nursing pillow that fits round me and prevents anything from touching me!  I now have enough drugs to start my own pharmacy, but the anti inflammatories were very welcome last night – the prophylactic antibiotics not so, but I have prepared for their unwelcome side effects this time with natural yogurt and Canesten.  Enough said…..

I actually slept quite well, although I did have some oozing from one of the wound sites – step forward nurse Duncan.  So begins the recovery process, including the agonies of waiting for the family to clean up, cook and take over household duties that they can’t see need doing!!  Then there is a very thick user manual to read before the electronics student gets his hands on it…….

Hmmm, too late!  He has found the pile of early Xmas pressies I was sent home with, including a very swanky camera style bag for the charger, pads and leads.  Now I have to contact my insurers – household to cover the devices for £2000!! & motor to inform them I am wired – literally.  I wonder how many of you saw the TV series Humans?  I can feel the stimulator beneath the skin – is this how it feels to be a Synth?!!image


Bad Hair Day

I don’t know if the long day  just took its toll, or if the nurse used some caustic cleaning agent, or if the mushy peas on my fish and chips supper were to blame, but I didn’t sleep last night.  The itching from the new dressing was awful, the surgical pain was worse and the damp was aggravating my nerve pain.  At 5am I could be found, much to Samson’s disgust, drinking tea, reading the paper and listening to Vanessa Feltz – I know!!  Sam’s expression said it all.  So today I have felt very like I remember after I returned home from a night shift.

The surgical pain is starting to settle – shame it has to start again next week.  Another definite downside to a longer trial is that the time being unable to bath or shower increases and today my head was starting to itch.  What is a girl to do on a bad hair day?  I couldn’t bend over a bath tub, so my lovely friend and hairdresser Bev came to the rescue with a wash and blow dry at her house.  It wasn’t easy positioning myself at the hairdresser’s basin, but I tried really hard to use some of the coping techniques learnt on the course and as usual Bev made me look, or my hair at least, a million dollars.

I think that I’m getting to grips with the Stim controller and have found which levels suit me.  We are instructed with this particular stimulator to alternate between 2 hours on and 2 hours switched off, and then to switch it off at night.  I will write a “page” detailing how the stimulator works and some more technical info.  However when we left the house yesterday, the boys were in the kitchen discussing what would happen if they were to connect their poor old mum to the transformers for the kitchen lights.  This really would give me a bad hair day! download (4) The last words I heard as we were leaving were “how quickly would that fry the brain?”.

NOTE TO SELF: do not leave controllers anyway near UCL electronic engineering student son!  We won’t have heard the last of this!

Day 1 R&R

The procedure was one of the strangest experiences – and lets face it, I’ve had a few ops over the years.  The first difficulty came when the operating department assistant (ODA) asked me to jump up onto the operating table – and then lie on my stomach.  A near Olympic feat for someone with back pain, a dodgy leg and foot drop!!  The consultant allowed me to choose which type of trial I opted for – explanations later! – and so began the placing of tunneled electrode leads into my back with arrows drawn in marker pen.  I was asleep for the actual placing of the leads and then woken up to assess if the electrodes were in the correct area of the spinal cord nerves –

“can you feel that, Claire?”

“No…” still feeling very groggy

“How about now?” to an immediate pulse of the strongest pins and needles you have ever felt.

“Yes, but it is in my stomach and around my ribs” Fully awake now!

“Think we need to change something here, team!”

And so the currents to the various electrodes were played with until the feeling was covering my leg, my foot and my back.  I even have some coverage in my good leg and this is with just one lead.  For those of us who have been patients on the St Thomas’ pain unit, we know that this is something special having been warned that it may not be possible to cover pain in more than one location.  In recovery I was reminded how to use the temporary battery and charger, before returning to the ward – I was in theatre for about two and half hours and another half hour in recovery.  Of course thoperation_1533715e medics never commit to a timings but I believe that a trial can take anything from an hour to several hours on the operating table.

Back on the ward I needed to complete every surgical nurses’ post operative list – the obligatory cup of tea and sandwiches – Ben, you were dead right – check, trip to the toilet – check, be up and moving – albeit slowly, check!  Then TTOs (medication to non medics – antibiotics and pain killers) arrived and I was free to go.

The trip home to Surrey on Friday evening through rush hour London traffic was not easy.  My back was starting to really hurt from the surgery as the operative drugs were wearing off, but I used the stimulator for my chronic pain – it is important to be able to distinguish between the two, not to use too much medication for the surgical pain and thus to be able to understand if the stimulator is working for the chronic pain.  Clear as mud to some of you.

My wound was bleeding after the journey, but I talked nurse Duncan through applying a new dressing over the original – it was drummed into us that it is very important not to remove the original due to the risk of infection – enjoyed some dinner and settled later for the night.  I used the stimulator before settling, as they should not be left on whilst asleep, and had a pretty good night for me!

Today has been quiet, a bit sore and I have been experimenting with the stimulator.  So far, so good – the feeling is the strangest thing, and until the lead beds in a little it is quite positional, so I am experiencing sudden surges of current. At the moment I’m wary to say whether it is definitely going to help me, but I think that for me the electrical sensations are masking the nerve pain and are preferable.  So fingers crossed, everyone, I’m cautiously optimistic.

Thanks for the words of support – I will post some more info about the actual spinal cord stimulator for anyone interested, and some musings about living with chronic pain, along with updates on my recovery and the future plan of action.cropped-girls.jpg

Stephen Fratello

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