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Invisible Disabilities...

This was intended as Health History, more to help others appreciate the reality of Hidden Disability.
Also to help highlight the problems facing people whose health conditions that don't fit into neat boxes. And are therefore ignored or segregated by health professionals for whatever reason.

As Ive recounted, and thought over this history. I've tried to be as brutally honest, as is my way. I feel cutting the bullshit is the best way in life. Ive intentionally left some history out as its not relevant nor crucial to the context of what I'm looking to achieve.

Throughout the years I’ve found myself questioning my own sanity, as have my companions over the incidents that occurred. How they were handled by professionals and in retrospect how I could have done things differently to perhaps change the outcome of my life.

Please excuse any timeline issues, as sometimes I find the medications that I've subjected to have had questionable effects on my reality. Hence one of many reasons I try to have a companion with me at all times. To both look after and care for me, and corroborate any events that I mentally question as potentially unreal!!



From a young age I've been living in some sort of Health Hell. From early on I've hidden and/or suppressed much of what I've experienced in life.

At a Primary 5/6/7 I was sexually abused at primary school/church, which I repressed mentally, physically and psychologically. This caused a form of amnesia, where I can't remember much of my life from that time till my mid/late teens. It caused me on reflection a total inability to form normal social/sexual relationships, this was compounded by medical problems that I chose to hide, nor seek help with.
The abuse was only discovered after I was treated for serious depression which had been building for many years. Mental health was never taken seriously, as it is now. And looking back I can see how from the start of my abuse, depression and mental issues were plainly obvious. But as these were not noticed, probably due to the fact that the political situation did not allow expenditure on things as frivolous as mental health treatment for children. Nor the treatment of sexual abuse victims.
During my treatment I was given drugs of various brands and strengths. That I never felt any different, my partner didn't see any change. But after a few months on a specific drug and high dosing I started to feel something. Never really affected me in a day to day mental thought process. But I awoke one morning with a thought stuck in my head. It wouldn't reveal itself. Days turned to weeks, my business was affected as I couldn't concentrate. Then one morning over tea, it popped. Sudden memories unlocked. I started seeing and feeling things that happened as a child. Things only I and those with me could explain or know. I knew the thoughts were real, They fitted with the time, the missing jigsaw pieces that though out my life till that point were missing. Over the following days, months more started to come back. More was revealed, finally after a few months I could recall most of what was missed and repressed.

I could remember detailed abuse, I could remember the staff involved, could remember the other pupils who were involved. All pouring back in floods, tears, screams, numbness pure vile hatred of all involved. Hatred for myself for being involved and allowing it to happen. It was all my fault wasn't it?? Then things started clicking. Like my obsession with learning self defence as a youngster, but whenever I got in tight situations I went to jelly, broke down and cried. This in a sick way makes sense now.

I wanted to be protected, wanted to be assured the abuse wasn't my fault. But was too weak, too scared to stop the perpetrators. I forgot, I repressed, It never happened if I couldn't remember it.

At the psychiatrist's office I spoke of all I remembered, cried, screamed.. Recounted all I could in the short time she allowed… NHS MENTAL HEALTH…. Joke…
She handed me a few numbers of groups that could possibly help.
THAT'S NOT WHAT I NEEDED…. NOT WHAT ABUSE VICTIMS NEEDED.

I tried calling a few groups, but at the time we just had our 1st child, my business had gone bust, I was very physically ill, and we were expecting our second child! My priorities changed to focus on family and to hell with self. I took on the house husband role while the wife returned to work early.

More Background!

I was born with spinal abnormalities, and Nuchal Cord (emergencies c-section) No obvious problems were observed at birth, but spent years being checked out and observed for problems. I spend years at treatments at the spinal unit at Musgrave.
My mother was informed that as I grew to watch out for problems with muscle weakness, coordination issues, continence problems, sexual problems. Looking back, I had intermittent continence issues from early years. At primary school it was incredibly common for my mum to be called in to change me. I always seemed to have a second or third change of clothes at school. As I got older things seemed to improve for a while, then took a turn back to the old ways. At home I ended up hiding bedding, pants, resorting to making my own nappies, even taking/stealing them from any where I could. Any way I could conceal not being able to feel when I needed to go, or when I leaked. Thankfully my bowel problems weren't as common, but did occur with alarming regularity.
As I got older, my bowel problems became more pronounced. Along with soiling, bleeding diarrhoea, massive pain, weight loss.

At 16 I was diagnosed with Coeliac Disease... Which runs in our family.
I live in N.Ireland and 20 years back, full time war was daily living. And unless you were missing limbs, or deathly sick, the NHS didn't take great interest!. So a lot of my family history was over looked and was till very recently.

In 2000, i'd been battling what I'd call a major flare up now. Id lost 3-4 stone in a few months, couldn't eat, could hardly go an hour without being buckled in two crying with each bowel spasm, ejecting bloody mucus stool involuntarily. My mother finally realising that I couldn't control my body. I was working full time doing 60+ hours a week driving. The muscle weakness issue, coordination problems went into overdrive, combined with the double incontinence meant I was spending a fair portion of my meager wages on some way to contain my waste.
Sept 2000, Another flare up started, which in retrospect coincided with, or caused my appendix to abscess and perforate. A few days passed before my mother dragged me to A&E after an exorcist moment of projectile vomiting blood, black mucus, with the same exiting down below. Burning temp of 40 was enough to land me in City Hospital… Due to my odd anatomy, on top of many things my organs arn't formed correctly (congenital abnormality) and my appendix was in my upper right abdomen. This caused the junior doctors/consultants to constantly mis-diagnose me.

Sepsis took hold, and allowed peritonitis to grow. A week after entering hospital, I'd taken many seizures,was constantly on a bed of ICE to keep temps down, had dozens of scans, MRI’s, CAT scans etc. Was hooked to lines everywhere, breathing was getting difficult. Finally my mother was told without emergency surgery to open me up and see what was going on id be dead within the evening. I remember the conversation, trying to scrawl my signature. My mother gave consent and I was away.

When I woke, I was expecting one incision, I had 3 massive horizontal incisions, was on a respirator, catheterised, had drains in each wound was on pressure mattress. When I awoke directly after surgery they were screaming at me to try and force me to pee…. I had no control. I couldn't feel anything below my chest to pee!! Eventually They forced a catheter into me and I blacked out. Ironically my urinary incontinence has never been the same since. Urological consultants later categorized it as a Neurogenic Bladder (Congenital/Birth defect!?)
Upon coming back to the world after surgery (a few days) I was told that due to severity of septic shock I wasn't expected to make it through surgery, which nearly came true, as my lungs and heart decided to stop many times during surgery. This explained the massive pain in my chest and the respirator!! After a week, I had the lovely rehab ladies teach me how to walk again, took a while longer than expected and my wound had a lovely habit of busting open upon any effort!

Took nigh on 6 months for my wounds to heal, and I became familiar with adhesions, scar tissue and wound management!
Any hope of normal continence after that point was gone, nerve damage to my bowel/bladder was inevitable. They guessed that a meter of bowel was liquidised by the infection and another meter or so was removed before it was rejoined. Due to the congenital defects my short bowel became shorter, and with no iliac valve, transit times became a massive problem, combined with flare ups ,inflammation and limited/no control over where or when it emptied I consigned myself to being covered up so to speak! This allowed me to dispose of the catheter and rely on a single continence device. I was introduced to larger and adult continence management at hospital. It was a revelation!!



Over the next few years I struggled on with changing rotating consultants/doctors. My diagnosis was from surgery to manage what had occurred and what I was left with, no more real investigation into my problems happened. Even though they were pushed and asked to help none was forthcoming.

I moved with my Parents & family to a nice quiet seaside town. Id been having a very rough time and my mother was my main carer. They had retired and decided to move and start fresh in the countryside. This left me at the mercy of the local medical setup… Which to say the least is in a world of its own!

After moving to a Rural Seaside Town, I was assigned to Causeway Hospital for treatment. (Useless Place at the time!) I spend nigh on a decade being treated by dozens of different consultants/docs/students.... All who liked going in Circles. Mostly to do with the fact that the staff turnover was immense. This left patients like myself who didn't fit neatly into normally pre-defined conditions to effectively run in circles.

During one emergency admission due massive weight loss, vomiting and extreme pain, constant bloody mucus diarrhea, I was introduced to a young surgeon.
Eventually it was discussed that an temporary loop Ileostomy would be beneficial. As both an aid to solve the bowel incontinence, and to help as a diagnosis tool as no Gastro was involved due to staffing shortages.
He was my only real help in regards treatment. The surgery was scheduled for the next week but was badly placed, too close to previous scar tissue (which no bag or flange would adhere too!!) and the spout wasn't made long enough to allow any weight gain without becoming retracted!

After the surgery I recovered very well and managed to gain good weight over a few months. After surgery, I was offered a solution/treatment for my neurogenic bladder.
A surgical implant, a spinal neurotransmitter (like a pacemaker for the spine) was implanted into my back and fitted to my lower spinal cord. This was a trial and couldn't be assured of success. But the thought of being totally continent again was worth the risk!! I worked partially but some dryness is better than none!

After 6 months I took a Flare up, couldn't eat, sick as hell and worst of worst for a Loop Ileostomist.... the loop started to collapse in on itself.
I started to get poo passing through (rather than into the bag) to the Large bowel. It had only lasted 8 months. As the flareup got worse, mostly due to the large bowel becoming active again.
I was dragged to A&E by the wife... Didn't take long to admit me, and very soon was scheduled for surgery, before the bowel caused peritonitis. Only option for the on call surgeon was to reconnect the large bowel (Nightmare!).
Which lead back to my large bowel becoming active, starting to flare up again worse than before, and worst of all… being stuck back in nappies again.

So started another 2 years of bowel incontinence, intermittent bladder incontinence, excruciating pain, drugs, narcotics even some chemo for good measure!

Eventually after attending an Gastro appointment with my wife and having a breakdown, the temporary consultant admitted they had no idea how to treat me, nor had the knowledge. I was passed onto Antrim Area Hospital for treatment by more senior team. I was thrilled to be seeing a new team.I was admitted to be trial fed by NG Tube.
Not the most pleasant, but not the worst! They tried many times but as the feed entered my system ,I became nauseated and began projectile vomiting. Which is vile with an NG tube in situ… the tube is fed down your nose into your tummy… but when you puke, the tube exits your mouth. So the tube is trapped up your nose but exiting your mouth! STUCK!!
It scared the young nurses but after a few times became very normal!! They suggested an NJ tube next but after the 3 failed NG tubes it was dismissed as a bad idea!

Still in hospital, same shit started, same tests, same inconclusive results as i'd had year upon year, after dozens of doctors/consultants... Until one test provided an odd result, so was repeated. And another disease was added but explained a lot. Type 2 Refractory Coeliac Disease was introduced to me and my wife. It changed a lot, and explained a lot.

After some research, and talking to some people with experience it started explaining a lot about what I was experiencing. Also at the extreme end of the scale it explained a lot of how my mother suffered. And how she was misdiagnosed for most of her life, and how the disease progressed and eventually killed her.
Also echoed how it's progressing within me and how it will potentially affect me. At the time of diagnosis, I was made aware that a good start treatment would be a version of a Chemotherapy drug to basically mute or kill my immune system. Refractory Coeliac disease differs from Generic version in several ways. Most notable, is that while a normal person with Coeliac adheres to a Gluten Free diet, normally sees an improvement in symptoms. Those with Refractory CD don't respond to a controlled GF diet. Their bodies continue to be attacked by an immune system, gone berserk!! I was given a heavy duty therapy for a month while in hospital, then for a while at home. It was decided that the treatment was effective, but my immune system was over stimulated due to the at the time undiagnosed Crohn's!
It was seen as pointless at the time to give stronger treatment, and potentially make me sicker in another way!

I asked for my Ileostomy to be remade, large bowel to be removed and a permanent j-tube to be placed in late 2014. So when I flare-up I can be fed by external pump, or even just keep myself hydrated (very difficult when you puke constantly!)
As my weight had dropped from massively from 80kg to 65kg in a matter of weeks, my nutritional status was very compromised. Normal Gluten Free diet was being adhered to.

It was obvious to me, and everyone that wasn't my consultant, that the previous Ileostomy had improved my health and quality of life considerably, in a short period of time. Also the ability to be fed and hydrated when seriously ill would be invaluable, esp as the flare ups were becoming more serious and more regular. I couldn't get the consultant to agree. To the point where my persistence got me discharged back to Causeway as they couldn't accept an informed patient knowing what he wanted.
I find this a constant issue, finding a decent doctor/surgeon/nurse who can accept an informed and knowledgeable patient for what they are and work with them. Rather than butt heads and always try to enforce what they see as the right course, even at the expense of the patients quality of life.

Fast forward a few months, more CT, CAT and MRI’s few more tests (history loves repeating itself!) same results. One fun thing.. To be allowed to enter the MRI machine in the City Hospital, I needed surgery to remove the Spinal Implant… one lovely side effect.. Any hope of controlling my bladder went out the window! So a surgery later, and another scar to add to the collection! The MRI takes place...

Causeway have taken merry time arranging an urgent appointment. Only for me to enquire with them what's taking so long, so much for 18 week rule. Seems that I've been blackballed by pushing to get seen. Well shit damn that I can't eat much, can keep much down, haven't been seen by a gastro in 6 months, can't get to see anyone else until I get to see the new Gastro. Catch 22… Nothing can be done. Stuck. Screwed.

Only option I had was to contact my surgeon. After one call, I was invited to a meeting where after a short exam I was told to expect a call to be admitted for urgent surgery… That was thursday morning.. I arrived home to a letter from the Gastro telling me I was to expect an appointment in the near future!! Near broke down in tears as this was 6+ months waiting for an appointment that my surgeon seen needed to be treated as urgent. By 4.30pm same day I get a call from the surgeon's secretary. Be in the following monday for surgery planned for tuesday.
That was relayed to the Gastro dept expecting to be seen while inhouse. NO, NEIN, NEVER!
Once in surgical unit, Gastro won't come across a ward to see a prospective patient, that was in for major surgery that one hospital denied they needed, and another department refused to see.

Surgery for permanent End Ileostomy and formation of J-Tube was planned, I wanted the Total proctocolectomy, which would remove my large bowel and rectum. But due to my severely malnourished body I was refused due to expected blood and fluid loss, I was at risk of crashing.

So I rolled into surgery, as with previous surgeries and crashing with General Anesthetics I was treated with kid gloves!
Upon being woke after surgery, I was in the most extreme pain and distress i've ever experienced. I was literally bouncing off the bed. They had to re-sedate me several times before my lungs started crashing. I was stabilised but automatically knew by the pain and odd feeling that there was something amiss.
I WAS RIGHT!
As usual a day after surgery I finally saw my new permanent end Ileostomy, and the J-tube. The pain rarely subsided but I was determined as I had booked a holiday for the family near a year in advance, thinking this would all be sorted. WRONG.
2nd day they tried feeding me as I desperately needed nutrition. Even at a modestly slow initial rate I felt it was wrong. I didn't have long to wait. Boak, Sick, Vomiting constantly. Whenever anything entered me It was refused entry!
My ileostomy nor small bowel hadn't woke up after 3 days… No sounds. They continued to try and feed me. At this stage problems started… I was being very heavily sick, black old blood, like granules. Nurses and Doctors denied it was blood, but as I wasn't ingesting anything but they’re feed into my small bowel what could it be??!!
Then my J Tube came adrift. BOLLICKS…. The nurses tried calming me and tried continuing feeds, in retrospect that was madness and caused major issues a few short hours later. Rather than think and run a scan to see if the tube coming loose had serious implications they tried covering it with an Eakin pouch (disaster!) in the end I spend most of that day with inco pads strapped to my abdomen to absorb the bile, blood and mucus that escaped round the tube and wound. My wife visited during one of the episodes of major leakage. Not fun for a loved one to see. Eventually I was asked to drink 2l of gastro-graphic fluid orally (further insanity). I was being sick after not much more than a few gulps of fluid. They pressured me to drink and hold being sick, yes really. Didnt happen! I was sent to the CT Suite where the consultant and I are well known, She took one look at the scan and quietly informed me to prepare for urgent surgery. She was correct.

I knew from previous experience that my body had an infection, major one. Fever, sweats and for the last 24 hours HICCUPS and I mean constant painful back breaking hiccups, while my 14” laparotomy scar hadnt even started healing. They took bloods every few hours, then took an infection control sample. It came back very very bad. My breathing starting getting laboured at 7pm on Sunday evening. By 9 I had the crash cart stationed beside me, by 9.20 I had signed an emergency form for exploratory surgery. Didnt even get time to call wife….. Woke in middle of night in recovery and instantly knew something was better!!. No more pressure no more insidious pain.
They had re opened the original surgical wound… Inside they found the jtube had come loose somehow and filled my abdomen with bile, acids, feed, blood and it had become septic…
They removed the fabric hernia patch that stopped my bowel herniating thru my old loop ileostomy site. After inspection my small bowel was found to have a few perforations of unknown origin and a loop of small bowel had knotted around the new stoma site on my left hand side, that had obstructed the stoma outflow and caused the bowel to collapse. A catheter was placed insitu in the stoma, to allow the bowel to stay open and the j-tube was removed and closed.

On waking the next day the surgeon who did the emergency surgery visited me and told me all the gory details, after which he told me they had finally visually confirmed Crohn's. This was an emotional day. It confirmed what many had suspected but testing wasn't conclusive enough to confirm.
Crohn’s a simple silly name that defined my problems, my pain, my agony, anguish. Something to shout at, scream its name.

Finally a name, a hidden disease like the Refractory Coeliac disease that consumed me at times, caused unknown misery, pain.
Something to shout at, the idiots who questioned the need for my using disabled facilities.
I was told the Gastro team would be informed and they would see me before leaving. NOTHING, ever happened.

A week later I was recovering well and on a Thursday was told I was going home, they took bloods a few hours before release. As my family were in warmer climes I got a lift home from a friend. I landed home at 6pm tried eating some soup, tried settling back into a life pattern. Not happening, something felt very wrong at 7pm by 11 was dosing myself with Oramorph. By 2 am was calling the ward Id escaped from… By 2.30 I was in an ambulance with blues flashing, being cannulated and more morphine. Was taken thru a&e to the ward and welcomed back. It appeared my bloods were infected from the earlier sample and according to one senior nurse, they were waiting on me being re-admitted rather than call me and tell me to come back in!. Was given a nice side room and told i was infection risk!! Lovely, was later told due to double surgery and sepsis+peritonitis that I really shouldn't have been allowed to depart so soon, or to be released on my own! Whoops.

I spent a week attached to my bed, mid summer, high fever, mid 30’s outside, mid 40’s inside!! Id Central lines, multiple cannulas in each arm. Only saviour was a small fan blowing warm air directly at me 24/7!!
Eventually I was released early due to a family death, I spend 3 months recovering. Being that no feeding solution was forthcoming, I lived on any fluids I could ingest and not bring back up. Occasional clear soups, 7-up, ice pops, ice lollies and dioralyte.
My weight never recovered.

Come Christmas 2015, another Flare up hit. I concentrated on the family and sedated myself, so I could enjoy family time.

From the start of 2016 I've spent nearly 6 months in hospital, all related to failure to thrive.
Intestinal failure, all hell broke loose. Flare up, on top of flare up… Mucus, blood, incontinent leakage from my useless large bowel and rectum. Pain beyond normal. Constantly upping the Narcotic break thru pain relief, on top of Upping the Fentanyl patches to higher and higher levels.

Still id had no Gastro appointment come in and calls to the department seemed to go to nowhere.

During the first 4 months of the year i'd been admitted a few times for rehydration and fluid balance, both times my kidneys were compromised but recovered.
I was admitted for a few days on NG feeding, they insisted on getting me to eat orally. SICK, BOAK, VOMIT even though they were warned not too. But there goes that NG tube, and the following 3 they tried afterwards!.

Then they tried an N-J anchored in my small bowel. Which worked for a short time, but again due to their insistence on oral nutrition it came loose. It coiled and worked against peristalsis and ended in my stomach. The feed reacted when it entered my stomach. Sick again. Tube ejected. They suggested another one. I refused as 4 in 6 weeks in hospital had failed and I was just repeating history, with no one learning from this, except me!

Come March my weight had dropped to 55kgs. I was constantly dehydrated, malnourished and nothing could stabilize it. I was admitted, my kidneys were at risk, breathing laboured vitals all to hell.
With such constant weight loss, and malnourishment my joints started achking and have never recovered. The muscle wasting due to the malnourishment had got very bad. I could hardly walk, keep balance. Standing took more effort that it was worth. I was admitted and told to remain on the pressure mattress permanently.
I had a PICC line placed and spend a week on TPN which lifted me dramatically. Shortly after the dietitians got involved I was told if it keeps up i'd need artificial nutrition permanently.
Again they tried via N-G/J Tube. After the NG/J tubes were ejected I was sent to the Royal in an ambulance to get a RIG inserted in my stomach and a G-J Tube placed…
The tube enters the stomach and is visually/radiologically maneuvered to the Jejunum, where its left. The feeding started on return to Causeway.

Wasn't tested at the Royal! It felt like the time spent there was wasted as they would have seen the tube had coiled up and rested in my stomach. Which resulted in me vomiting when the feeds started… This stumped the docs and consultants. Once the xray was done to confirm why i was coughing and aspirating while feeding. It was stopped. The consultants tried using a OGD to grasp the tube and replace it in the jejunum. This seemed to work, for a few weeks. But one night I started asperating again. Choking and coughing. I informed the Hospital and consultants…

I spent a few weeks at home getting weaker, lighter and sicker. Down to 50kg at next entry to a&e … once vitals were established and fluids electrolytes made no improvements to my vitals, the kidneys were at 10% and producing minimal urine. I was placed into ICU bed and hooked to a thousand wires and iv’s… Come morning not much had changed, the consultant decided a TPN central line would help dramatically. Within the hour id a jugular central line placed and a 24hr feed regime started. Which was incredibly awkward but within a few days the benefits were obvious. And I felt alert for the 1st time in months. Few weeks spent with with TPN and other IV’s brought great bowel relief and minimised pain. I wanted this permanently!!

Was told it wasnt possible to take out of hospital. Although I now have researched and It is possible, just not regularly done!
I gained no weight, actually lost another few kg’s and was admitted to Causeway again, back in surgical weighed in at just over 40kgs. Muscles wasting to the max!! Joints stiff and immobile too. Pain in every place. And time to realise more urgent surgery was needed. This time the only option left before Permanent central line & TPN was to place another J Tube.

My original surgeon had see me after admission, he suggested another permanent J Tube. Using the same entry point the GJ Tube used to minimize external scarring…
I was opened at the same 14” scar that had been opened twice the previous September… Recovery was pretty normal, but slow due to my condition. The feed rate is maxing out at 100ml/h. The surgeon reported that upon opening me adhesions were everywhere and very profound and scar tissue is pretty extreme. I was released after another week.

Ive now been out near 2 months and bloods have remained constant. Ive found that the feed sometimes rises up from the small bowel into the stomach and caused sickness. But mainly its been stable, but cannot exceed 100ml without sickness and nausea. My weight hasnt stabilized, I cant eat much without sickness. The dietitian has told me to start feeding during the day now to try and get to 1500Kcal per day. That mean near 14 hours a day hooked to my trusty feed pump. That is reassuring as It means im fed, hydrated and NOT going be admitted any time soon!!


As previously stated this is a work in progress to help people who are have stomas, have inflammatory diseases, have continence issues, who are suffering multiple conditions and need help support and some one to talk to.

The text will be amended and reworded and made chronologically sensible in due course!!

Im open all input, anyone wanting to chat, discuss and just talk. Im here.
 
Thanks for sharing your story. I am sorry for all you have been through. I hope you get better. You have come to a great place for support.
 
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