Welcome to Zoi’s Diary
January 2, 2017
Well we all know that this is where again my body throws yet another curve ball and wipes me out yet again.
I managed two weeks at work on the return from my holiday but on the second week I started developing pains in my side and back and down to my groin.
I just thought it was a small relapse and did the bed rest while Thomas was at school and I wasn’t working. Over the weekend the pain developed so much it was leaving me in tears and unable to move. I was suffering a lot of sickness and nausea, distended stomach, lack of stoma output, fluctuating temperatures and unable to empty my bladder properly.
On the Monday the 7th November I went to see my GP who examined and said my right kidney was very tender and was a positive urine dip test for an infection. He said he would send it away in case the antibiotics wont treat it..
“Yay Kidney infection.”
But the antibiotics didn’t agree and yes.. Reaction!!. Couldn’t see and was very faint. The doctor changed the antibiotics immediately and I took the course but did not help and the pains were getting worse. I rang the doctors and explained that it was worse and the tablets hadn’t helped. I got a call back that my GP wanted to see me straight away. I was checked, he was still certain that it was a Kidney Infection but due to how much of a mess I was in, he thought it best I got checked further, He rang the hospital and I was admitted to the surgical assessment unit.
Once there the doctors assessed and agreed Kidney infection. I had the usual tests and x-ray but it had come back that there was nothing in my urine or bloods to show a Kidney Infection or urine related. I struggled with the pain and was in tears as the waves of pain grew. Due to my EDS, P.O.T’s and Autonomic Neuropathy opiates make my condition worse and also slow/stop my Ileostomy working. However due to others failing they wanted to try a big dose of morphine to get in control, 30ml Oramorph and two 20ml Sub- Cut injection. These failed.
The following day I was told there was nothing on the x-ray and thought it was a relapse of my conditions. So just pain management…. If only! During the day I got pins and needles and shooting pains down my right leg. This was a random symptom to the others. I was seen by neurology and confirmed everything was ok and was unexplainable as to the symptoms. I was moved that evening down to the surgical wards I know oh so well. Over the weekend my bladder kept going into retention and after a few drainages we agreed that a permanent catheter one was a better option since my bladder wasn’t working as well as the pain waves in my leg growing.
On the Monday I was seen by my own surgical doctors, they examined and they thought it was my Kidney and arranged an ultrasound. While having the ultrasound the head specialist radiographer was asked to confirm what it had shown. He told me that there seemed to be a roughly 6mm wide blockage at the start of the tube to the bladder. He said that he was sending me straight for a CT to confirm what the ultrasound showed.
I was told that it showed there was nothing with my kidney but my bowel was fully impacted
Confused how id managed to fully compact my small bowel. So the push of large doses of laxatives was pushed through… well that’s what they hoped but I wasn’t keeping anything down so they returned the way they went in. The following day my consultant came and went through all my admission and said sorry for being messed around as the scan failed to show exactly what was wrong and said that he would send me for a dye CT. He said that will tell him everything and that he needed to know. I had the test and the following day, had said it was indeed my large bowel and colon that was fully loaded. He felt the line of large bowel back to front of where the pain was and stated you didn’t need to press hard to feel the bowel. He then explained what it meant.
He explained it was too dangerous to go home due to my illnesses and for current condition as my large bowel could perforate as I was a higher risk and wouldn’t be long. He explained if I went home I may not be able to get back and into theatre in time. Especially as it had caused nerve compression to the right leg, bladder retention, the levels of pain that aren’t controllable, temperatures, bad bacteria in stomach causing sickness.
He said it was a lot to take in but if I wanted to go home it was my choice. Of course I stayed… being told if I left there was a risk of death it was crazy to leave!
My surgeon then explained that it requires surgery and that he would also sort the issue of my stoma prolapsing four times too. He wanted to take the entire large bowel and close the rectum. But due to the EDS it could cause the muscles etc to collapse and damage to my bladder and cause fertility issues if I had it. So a Sub Total Colectomy would be my best option. I agreed with him. So I was put on the Emergency theatre list.
That night and the following night I vomited to a new level my own faeces where coming back up and required the NG tube to keep my throat and stomach protected.
After five days being on the list and while my mum was visiting, I felt a pop in my back and was in agony. I felt my back and my mum checked as I couldn’t even lie on it, I had to lay on my stomach. When she confirmed what I felt of a swelling that was growing on the right side of my back and too the side.
She informed the staff and they contacted my surgeon, within minuets the nurses came and said I was going straight to theater as I had perforated.
I woke in recovery 5 hours later apparently i should have come around from my surgery with my mum at my side. She explained they couldn’t wake me and when they stated they gave me a drug I am allergic to and it puts me into unconscious episodes. They gave me the needed injection to allow me to come around.
After an hour awake and constant monitoring I was allowed down to the ward. I had to keep oxygen on for a good few days due to having P.O.T’s as my levels were low. I had a good day with my friend Emma on the first day after my operation. I managed to have a caramel coffee and had three biscuits and it stayed down!!!! We thought it was the start of a fabulous year to come. I had another night and following day well until..
That night I had a lot of pain and was sick and struggled badly. They checked my Epidural and there was a full leak that required it to be stopped.
It was replaced with a Fentanyl pump. With the background and me able to press every five minuets it started to give me some relief to sleep for the rest of the night. The following day I was completely away with the fairies I wasn’t even aware of my mum at my bedside.
The following day due to the level of headache and sickness it was causing and that my stoma hadn’t worked I requested it was taken away. I was advised against but I felt so ill with it. For a week I was completely bed ridden and being turned and washed by the staff due to the pain and my conditions. We also struggled to get on top of the pain and I couldn’t get past the pain the drain in my side was causing. On the 8th day they needed a urine sample due to the amount of pain and that the catheter had to come out due to blockage. I was helped out of bed onto a commode to get the sample. This was my start to get my bum moving.. I spent a day using the commode but then when I caught the drain they swapped it to a smaller tube and in a bag.
So much discomfort was taken away just from that. It left me with being more mobile to use the toilet the following day and even have a shower. With progress and showing I was having small amounts of food and keeping it down, wound healing well, managing the stoma well and that it regained function and that the antibiotics had started helping the urine infection.
A month after being in hospital, many different options, being told I was in a life/death situation, surgery of large bowel and colon removed, bad section of prolapsed Ileostomy cut off and meshing put into help the stomach wall for strength and to help prevent a prolapse. Having my surgeon ask if I wanted to go home brought such a huge smile to my face as it meant I got to go home and surprise my little man. Whom I hadn’t seen in over two weeks due to how bad I was and that the tubes and wires scared him.
His face was so happy that his mummy was home.
So home… bed rest and what has happened within two weeks but Piter the notorious stoma for not doing as he is told has prolapsed and having a lot of issues with pain, sickness and bad contracting bowel. Five weeks post op and not as far into the recovery process that I should have been.
I await seeing my surgeon and specialist to find out the next step. But here is to fingers crossed once recovered from major surgery I have a better and healthier year ahead.
I had a lovely Christmas with my family, seeing close friends and being with my amazing son who again has been through another emotional ride. But this amazing little man of mine has been my strength and power to keep going and keep to the recovery instructions so we can get back to living!
Love you loads and thank you for being so amazing!
January 1, 2017
So on the 16th of October away we flew to our Water park Holiday..
I sure wasn’t going to let any bad leg or illness stop me and my little man making the most of the park!
Apart from the Spanish cooking with so much grease and my stomach struggling like mad due to it, sickness, my fourth stoma prolaps, heat stroke and looking like a Lobster
I had an amazing time with my mum, brother and my son Thomas. MEMORIES <3
On September 3rd whilst visiting my partner in London for the day, things decided they would flare.
London of all places to take ill!
What a lovely day it was too a lovely sunny day, but I supposedly started to smell vomit (only I could smell), then became dizzy and disorientated. My partner took me and my little man and brother back to his apartment close by, but I could barely walk. Within minuets I took an unconscious episode.
Due to having these before at the beginning of the year, I was put to bed and watched until I came out of the episode. Which could last anything between 10 minuets to 3 hours… Normally! My partner said it lasted just over four and a half hours. As we where waiting for my body to recover from numbness which was from the neck down (normal when taking the episodes).
Thankfully my partner did the feeding time at the zoo and got tea in. Within short time I went into another episode. These carried on throughtout the night and into the morning. The only difference was that this time I never regained the use of my left leg. Later that day while recovering from another episode my face felt funny, numb and weird. I also had pain at the back of my left eye and blurred vision. Plus a banging headache! After contact with my specialist, he advised my partner I could be taking strokes or convulsions and I needed to be at hospital.
Mark called for an ambulance, as I was still going in and out of the episodes even whilst in the ambulance and in A&E.
I was monitored closely; they ran tests CT scan, ECG and others. They couldn’t find a reason as to why this was happening, so was admitted to St Thomas Hospital in London, miles away from my family and my little boy who had to be collected by my mum.
Unfortunately with being there and not knowing how to treat the Unconscious Episodes continued. I still hadn’t regained the use of my left leg and physiotherapy was started. They weren’t sure as to why I had lost use of my leg either. I then was seen by a Neurology Consultant and had more tests that came back clear.
“Just weakness to my left side and being confused”.
As the days went on, I was still taking episodes and becoming more confused. I couldn’t even remember my partner being at my side or events that had happened.
My leg still not working and the episodes continuing, my heart to which I have issues with anyway was taking some strain, with a few fast acting ways my breathing was sustained and watched closely due to how fast my sats dropped while in an episode and me not taking enough oxygen in.
My specialist came to see what was happening and to make sure my treatment plan was to accommodate my illness. He had also spoken with his colleague who also deals with rare illnesses and worked out it could be my medication again causing the Unconscious episodes. Medication then stopped and within 24 hours the episodes had stopped. What a huge relief!!
My only issue was I still couldn’t use my left leg. I was discharged with intense physiotherapy on my leg and to be followed up with Neurology, GP and Specialists at the hospital.
I wasn’t right but Wahooooo HOME!!
Within 24 hours I was back in A&E on the advice of 111 as my left leg from the knee down was blue, ice cold and swollen.
“I was seen quickly”
Prepared for the fact that it could end up that the issue with my collapsed foot and leg may have left me with no flow of blood to my foot, and that it would mean being taken down for emergency surgery. Heart pounding and worried like mad however thankfully due to not giving up, the surgeon managed to find a very faint pulse and was happy for me to go home. Just to be monitored and was given Aspirin to help keep my blood thin and flowing.
Again HOME… Bed and try and stay out of the places!
So with bed rest ordered and to check in with GP in the week. Due to my foot becoming more blue and cold frequently, very distended stomach with sickness and no motion through my stoma even with Picolax (strong laxative)… I called my specialist who was concerned that the circulation issues could be affecting the bowel and asked to see me the following morning.
He did a few tests and there was flow. Due to symptoms and things getting worse he admitted me there and then to his palliative care centre.
I spent the next two and a half weeks having more tests being prodded and poked, MRI (head and spine), Ct scan for stomach… there was no reason as to why my left leg was acting how it was he couldn’t explain the failure of motion through the stoma either.
The center staff of all grades where amazing and couldn’t do enough to help. There where a lot of therapies offered to help people and I admit the two that I had of a massage type on my body was better than any pain killer until it wore off, They also helped people’s mood as they allowed two lovely huskies and their owners in to cheer people up. They were gorgeous and it again worked! For some reason though the pain got worse and the sickness increased.
This was due to abdominal pressure I suffered three prolapses with my stoma. On the first one due to how big and it wasn’t prepared to go return naturally. The doctor managed to push some back in but couldn’t get it fully back.
“The pain was unreal!”
With medication and a plan in place as things were more settled I was allowed home with frequent checks with GP and DR Noble.
Dr Noble a week after my discharge had an idea to inject local anaesthetic into the main trigger points of my pain as a trial while he worked on getting hold of new medication. Within a minute of having the injections, the pains I had suffered for years had turned to discomfort.
I cant express how weird but good it felt not to be in the pain I was and how fast it worked. With this being a positive and big success to all the medications previously and the Ondansatron Sub- Cut injections I do at home controlling the sickness and nausea. I had hope again of managing my Illnesses. “Fireworks going off felt like the right emotions of joy!”
(The picture is with a 12 year old female Husky who was so soft and adorable! She curled up on the bed and took a rest. I was so happy to share and the male was having a good old set of cuddles from my partner)
We agreed that in two weeks he would redo the Trigger point injections to keep up with pain management and then monitor how long they last before needing them again. The two weeks later and again they worked like magic and he gave me consent to go on the family holiday that was planned since the previous year. He assured me that I needed the time away to relax and come back fresh and that he had colleagues out there if I needed medical help.
So Costa Del Sol here we come!
Towards the end of June, My body thought apart from the usual chronic pains and symptoms of my Illness. It would react to the new medications that I had been prescribed by my specialist.
I became very itchy and came out in blisters and a rash. This covered every part of my body, even my scalp. The irritation and pain of blisters wasn’t pleasant. I tried the usual antihistamines from the shop but they didn’t work.
After 24 hours I went to see my GP for help. He gave me a stronger course of antihistamines to try and help with the allergic reaction. The following night the symptoms became worse and my face and lips started to swell, together with a tightening of my chest.
I was taken to hospital and administered Steroids among other medication to help whilst being monitored. Later that day I was allowed home…
Thankfully a flying visit this time.
The new medication was stopped and later that week I saw the specialist and was given another medication to try. After a few days on that medication and thinking these may help. I took to the same with the itching, the rash and swelling etc. again Steroids and strong antihistamines were given. Thankfully after a few days it started to ease and fade.
June 26, 2016
Yes it’s changed my life! My Son still has a mum! I have a fresh outlook! and will build upon it.
On the 7th of February 2016 with my body not wanting to do as it’s told. I went to the out of hours doctors knowing something wasn’t right.
All the usual symptoms together with, a lot of pulling, and pressure behind my ostomy. I was sent directly to hospital following examination by the doctor.
With the symptoms and scans showing my bowel was swollen and fully loaded, was told i would need emergency surgery so they could get in and find out what was happening. my fourth surgery in as many years at which time they also repaired my prolapse too.
After the surgery the pain was getting increasing and my body not coping at all the opposite of what was supposed to be resolved, a week after the operation i had to be helped to move into the chair and to the toilet was a marathon as i was too weak.
Again I suffered yet more weight loss becoming under weight, sickness and extremely malnourished as i couldn’t eat and struggled to stomach fluid’s, The doctors agreed that I would need an NJ feeding tube to feed directly to the top of the small bowel bypassing my stomach which we knew was not coping as it should.
After four weeks in hospital and no progress i was allowed home to see my son who i missed so much. On the third day of being home i collapsed, and a friend had to administer CPR under instructions of the Ambulance service as my respiratory efforts where failing, i woke in hospital again to be told what had happened.
Another feeding tube was inserted as my blood sugar had fallen below 3.5, drips, monitoring, and tests to find out what was going on, with my body too weak and my heart struggling to beat its normal tachycardiac rhythm I fell unconscious again. This was the start of a long week and a half of taking one – two unconscious episodes a day.
The more episodes i was having the more the Doctors were becoming worried something more major was happening. When coming out of the episodes i was unable to speak and my body numb. several hours after i would slowly be able to move my eyes and look at my surroundings, and say basic words that later would moved onto basic sentences, to be able too wiggle my fingers, from hand to arm then down through my body towards my toes and legs. The more this happened the more severe the effects got, my memory was also affected.
Due to this i was not allowed out of my room, had supervised toilet trips, monitored 24 hours and timed washes.
We also had to stop Thomas (my son) visiting as it was something that would impact on him seeing how ill his mummy was with pipes, tubes and monitors around me.
Again i had numerous tests including an MRI, EEG and CT Scans. Epilepsy was ruled out as to being the trigger, still on a feeding tube due to weight loss and undernourishment. I remained in hospital for a further four weeks. Finally being allowed home in April, I am still being closely monitored and working to put my life back together after another traumatic time.
Three years on, four surgeries later, Countless hospital admissions, Tests, Medications, And to me missed experiences and memories in life with my son!. I am now strong enough physically and emotionally to tell my story and help raise awareness to support other Ostomates who are struggling with the unseen battle that is life for some of us.
I am back working up to 25.5 hours a week, being able to look after my son full time, adventure days and trips out, socializing and volunteering for “Stomawise” a charity and support network for Ostomates.
My biggest goal is to raise awareness of this Invisible debilitating Illness that so many of us suffer (Yes we can look good on the outside but on the inside is a whole different story) and to eliminate the negative stigma given to Ostomys which save lives, mine being one!.
People don’t see my illness unless I’m in a bad way as you learn to wear a mask to enable you to continue, most people seem to think you’re not ill and make up what is happening as they don’t want to see it, they don’t want to understand the severity of it, and what suffering a life changing and debilitating illness can cause.
In my case not only to my life, but my son and the closest people around me.
My son has lived the past three years of his childhood without his only parent due to his mummy being either in hospital or in a bed and seeing that something horrible was happening to me.
For the good days when am able I ensure that we have as many good memories as possible. So he knows i have not left him and try to correct the upset and insecurities that my illness has inflected upon his childhood.
I am 26 and have and incurable illness and a ostomy for life… I did not choose this.. However i have it.
Yes my life has changed! And yes it’s a daily battle! But I am not prepared to let it destroy any more than necessary.
Uninformed people tend to bully and make you feel inadequate with an unseen illness, my ambition now is to raise awareness of these conditions and to inform the uninformed of how they can actually help those suffering this torture all over the UK with the same and worse conditions than me, every year across the UK 30,000 people are given a ostomy or diagnosed with an invisible illness and nobody knows who will be next.
It causes extra stress and highlighted emotions on top of the already daily battles in life. I hope that people reading this will take away the importance of it all of not to judge an unseen illness but to support it.
No matter how big you’re battle is!
Do not to give in!
Today is for living so live it with no regrets!
Please feel free to follow my story on here i will now be updating it on a regular basis
You can also to contact me by email.
In March 2015 I was recovered enough to leave my mums and return home with my little man and start to rebuild my life.
But my body didn’t want too see it that way and my health battles continued. The same symptoms being a daily uphill battle, rattling full of medication and needing to be hospitalized every few weeks to months. I was referred to a Specialist in London and a Palliative care consultant to try and resolve the problems once and for all. But my health issues continued.. It became more about managing my symptoms rather than solving them, whatever it was did not wanting to stop playing games with my body.
In April 2015, after my doctors liaising with each other it was agreed that a reversal now not an option. I was still suffering and my bowel still had problems. Not the news I wanted although now where more good days than bad, it did take a long time to acknowledge the fact i would have a bag for life and even now still have mental lapses and struggle with it, through talking and support realized now i am quite normal in that, i still need to remind myself that it saved my life! and gave my son and i more good days together. To me that outweighs all the negativity i had about the stoma initially.
On October 3rd 2015 my stoma prolapsed while at a work event due to over doing the “old lady moves” on the dance floor. I collapsed with pain and later woke in Manchester University hospital, where after monitoring and the bowel returning to normal size, i was allowed home.
I had a follow up with my surgeon due to the prolapse. Thankfully we agreed that as I didn’t want more surgery and that we would monitor and see if it happened again. If it did then it would mean further surgery.
Of course it did!!
This time it only partial retracted and remained 6cm long for a few months until i could have the surgery to correct this.
In December 2015 i was put on the theater waiting list. Thankfully in November after two hospital re admissions my Palliative care doctor finally was able to diagnose what i had been suffering for over two years. To hear that i actually had a diagnosis was a huge weight off my shoulders and meant we knew what it actually was and how the suffering could be controlled.
He stated that i have Autonomic Neuropathy Disease.
Autonomic Neuropathy Disease is a group of symptoms that occur when there is damage to the nerves that manage every day body functions such as blood pressure, heart rate, sweating, bowel and bladder emptying, and digestion. As a result, treatment and self-care is focused on managing the symptoms and preventing further problems.
Having an incurable illness for life added to the ostomy emotionally still coming to terms with, knowing the daily battles aren’t going anywhere brings you to a whole new low point hopefully on the correct medication we would be able to manage it more and have no more than two big relapses leaving me in hospital a year.
But still, sad news or not i had a diagnosis. He also stated that Colitis had been found in my large bowel following another Colonoscopy.
Read: Yes it’s changed my life – 2016
March 2014 whilst in hospital for assistance in emptying my bowel
A new symptom made its appearance. Urinary Retention, which lead to me being catheterized. With more tests they found that my bladder was being compromised due to the swelling from my loaded Bowel.
A few days after being discharged, i was re-admitted due to bowel failing to continue to empty and my bladder in “retention again”. Twice they tried to see if my bladder could cope without a catheter in but was unsuccessful.
The Doctors then decided it was best for me to have a temporary catheter in to protect my bladder so that it didn’t become any more damaged and compromised than it already was.
I had lost count the amount of times when out with family and friends that i would have an accident where my pouch leaked and wet myself in public, Of course the expressions of those around me seeing an adult have an accident was priceless, which hurts emotionally but i had to get used to it.
I then obtained clearance to work as the bag wasn’t going to stop me! As it was to become my best friend for over two months, this became my new norm every time my bowel and health flared up.
With another admission in July 2014 I left with issues in my left hip and trapped nerve in my spine. Physiotherapy had found that my Hip had dropped due to muscles and tissue being eaten by the type of steroids that had been injected there to help with my sickness. I needed crutches for a good few weeks to help get me around otherwise i would of been a couch potato again!.
Struggling from room to room, getting dressed, bathing, lying or sitting. I couldn’t escape the pain, intense physiotherapy helped and I returned to work.
Unfortunately I still suffer flare ups. To which my friends give me a firemen’s lift or a piggy back in aim to keep me socializing and getting out of the house.
In August 2014 my consultant at Rotherham General gave me his long term diagnosis as the past year and short term diagnosis didn’t get us anywhere.
I really wasn’t ready to hear him say that i would require more surgery! or to hear he planed to remove over 25cm of my large bowel that had died.
Scared – Yes
Confused – Yes
Freaking out – Yes I spoke with my GP and we both agreed to seek a second opinion.
At the beginning of September 2014 i saw a new Gastro Consultant and Surgeon at Sheffield Northern General Hospital. Where we started Colonic Irrigation to see if it helped and to cross another treatment off the list. But along with all the previous attempts, this failed. The community nurse stopped it after four days due to leaving me bed bound and crying and doubling up in pain.
A day after stopping this, i was admitted again for my bowel and pain management.
Then it happened… the big life changer.
In the few days of being discharged, I had became really ill; Pain in neck and joints, Long lasting headache, No appetite, Swollen red eyes, Urinary retention, Constant throwing up, nausea, Dehydration, Severe abdominal pain, Swelling, Dizziness and the feelings of collapsing when trying to move or use the bathroom, Shivering and feeling of being so cold – with numerous layers and bedding on me but I still felt so cold Tachycardia/ Palpitations.
My GP had me admitted to hospital where I was Catheterized, drips to re hydrate ,blood tests, scans, a lot of medication to try and ease and take the symptoms away.
For a week the doctors battled to try and control and find what was happening in my body. 19 laxatives in many forms a day to try and get my bowel to give up months and months of backlog as this being the key to the other symptoms.
The nurses kept joking that they will have to resort to using dynamite as nothing else worked. With them failing and my body weaker and now unable to tolerate the medication, I had deteriorated and became seriously ill.
I started to vomit my own faeces, In the space of only half an hour had vomited over two liters of my bowel contents and my stats plummeted which was a worrying sign for the nursing staff. I had a NG tube placed to protect my stomach and put on Oxygen. I was closely monitored, due to all my condition, We also had to stop my son visiting as the sight of me would of scared him.
The next day my surgeon came for a serious conversation with me. He said he wanted to perform emergency surgery and to give me a Loop Ileostomy with hope of a reversal a year later, as I couldn’t continue due to my rapidly deteriorating health and was at risk of my bowel perforating.
He gave me time to try and get my head around what was my only option (if that was an option) to get better and to get my life back. I spoke with the Stoma nurse, she discussed what it was, how too look after it and the key six months after surgery where at risk of something happening or the formation of a hernia.
Of course I said yes! to it as the alternative was not an option, So on the 21st of October 2014 I was taken down for major surgery and “Piter” my Loop Ileostomy was born (They say to give them a name as it helps mentally with dealing and adjusting to life with a stoma – we aren’t just fruit loops for naming our stomas) The next five weeks in hospital was still a battle. Weak and frail from my condition before surgery and then major surgery, but still problems existed!.
The NG tube was put back as I was Still vomiting my own faeces, oxygen, drips, tests, laxatives and catheters in my stoma to try and get it working. Step by step we built up to moving, walking, learning to eat, how to change my bag and maintain my stoma. Mentally trying to get my head around what had happened and seeing the bag on my abdomen was very hard and challenging. This had become the hardest time of my life.
Panic attacks where a daily occurrence at the sight of my bag and the medical products needed to look after it. I was left feeling disgraced and disgusted at the sight of my own body!
Not wanting to communicate and join in with my family and friends. The feeling of being alone, unhygienic and dirty 24/7 due to having the bag, being forced and learning to eat again, so much more was going through my head could not see life and/or how i could live it again.
This wasn’t the end as my body wasn’t prepared to let me recover and live my life yet!
Again i was suffering the same symptoms as the past year and a half and my small bowel wasn’t functioning for itself. Still on many medications, laxatives where added back to the list – shouldn’t need them with an Ileostomy! but my bowel refused to do anything it should. So why start now?
From being discharged in November. Every week i was re-admitted to hospital with the same symptoms and problems as before. Again tests and procedures performed to find out why my small bowel wasn’t functioning.
It became apparent i was also suffering slow transit and had a mechanical fault in my bowel. My surgeon listed me as needing an urgent operation to sort the problems out.
On the 31st of December 2014 I went under for my third time. What should have been a routine operation became major surgery as my bowel was worse than they first thought.
“Piter” in this operation became an End Ileostomy rather than a loop. They kept my large bowel in even though not attached as there where still had hopes of a reversal.
Mentally struggling to cope two weeks after surgery i asked work if i was able to go back even if it was to do nothing. I needed it to pull me through. I got clearance from work and Occupational health and went back to work against the wishes of my Doctors and Stoma nurse in the middle of January 15.
Read: Yet more Confusion – 2015
On my 23rd birthday i woke to pain that i described as equalling the pain of childbirth.
I thought it was indigestion, but turned out to be my appendix.
I was taken straight to Rotherham General under my GP’s orders and that day went down for emergency surgery due to my appendix being very infected and inflamed.
I spent a week in hospital from this due to having a reaction to the GA and an infection from the operation.
Little did i know this was the trauma by body needed for my illness to make its mark and for my life to change!
My bowel never regained function and suffered Chronic Constipation for five weeks including the week in hospital. I became the couch potato at my mum’s house where i was recovering from my surgery and getting back on my feet while she cared for Thomas (my son).
I was constantly at the GP where we tried many laxatives, strong opiates and anti sickness medication to try and relive my symptoms, however the constant battling of; Swelling, Distended stomach, Nausea, Sickness and dramatic weight loss from being unable to eat and keep food down Doubled up in constant pain, Lack of sleep and No energy became too much! Finally after four weeks of being at home was readmitted to Rotherham General to find out what was going on with my body and to assist my Bowel.
All the scans and tests showed that the bowel was fully loaded and couldn’t pass through a section of the large bowel. They put it down to my bowel needing to wake up from surgery…. But was not to be the case!!
I would find myself being readmitted to hospital after periods of a week and sometimes even up to 5 weeks depending on how bad my suffering and symptoms got, The hospitalizations lasting anywhere from four days to three weeks.
For over a year this continued as I battled with; Dehydration No energy, Insomnia, Swelling/Bloating of the stomach, No appetite, Malnutrition/Weight loss, Constant pain, Sickness, Hot flushes, Spouts of Tachycardia, Palpitations and the Mental challenge of – Do I eat??? But this will hurt me so may be not….
At my whit’s end and fed up of suffering and thinking this can’t go on as I am destroying my sons life not being able to do what a mum does and being laid up or in a hospital bed which i felt was unfair to him and left me feeling guilty.
There where the good days every so often but mainly the bad had a hold on my life.
I had many tests to find out what was going on. Is it Crohns? Colitis? Diverticulitis? Celiac Disease? What was it? Still no diagnosis after multiple Ct Scans, X-rays, Ultrasounds, Blood Tests, Transit Studies, Lumbar Punctures, Colonoscopies and tests you would not even think where possible.
With constant Hospital and GP appointments the changing list of daily medication just became longer and longer to try and relive the pain I had become accustomed to.
From Morphine, Tramadol, Fentanyl Patches, Ondansetron, Cyclzine, Lansoprazole, Pro Bantine, Domperidone, Kwels, Acupan, Buccal anti sickness, Sumatriptan Injections and many different laxatives. Although some gave partial relief the symptoms never fully went.
My friends and family joked that if they picked me up and shook me.. I would rattle like a child’s toy due to the twelve or more different medications up to four times a day.
Read: A Year of Confusion – 2014