A day in my life

A day in my life

Day/Night medical routine

7.00-So firstly i wake up like every other normal person. I then empty my drainage bags, i then wash my hands and disconnect my TPN:

-First i was my hands

-Then i wipe down my table

-Get out all my equipment- cap for my line, pair of gloves, saline flush, 4 alcohol wipes, sterile field dressing kit, heparin flush.

-I then set it all up.

-Re-wash my hands

-Put on my gloves

-Then disconnect my TPN.

7.15- I then do my morning meds

Morphine (if I need it)- This medication is used to treat severe pain.

•Liquid paraffin- This is used to treat constipation

•Ranitidine- This is used to treat Gastroesophagul Reflux Disease

•Thamicarb- This is mixed with esomeprazole and helps dissolve it.

•Esomeprazole- This is used to treat Gastroesophagul reflux disease.

•Buscopan- This is used to treat pain and spasms

•Ondansatron- This is to treat severe nausea and to relieve sickness.

•Metoclopramide (reglan)- This is to help motility/ gastroparesis and is also an antisickness.

•Paracetmol- This is to treat pain/aches and fevers.

•Movicol- This is used for constipation

•Lactulose- This is also for constipation

•Ibuprofen gel- This is for muscle/joint pains and aches

•Halean cream- This is used for granulation tissue around my stomas.

•Phosphate enema- This is to treat severe constipation.

•Suppositories- This is also to treat severe constipation.

•Selenium- This is a supplement I don't get as I'm tube fed.

•Cholecalciferol - This is to treat a vitamin D deficiency.

•Dioralite- This is to treat dehydration and replace salts and sugars in your body and things such as potassium and glucose.

•Sodium picosulphate- This is a laxative that focuses on the motility of the bowel.

•Tramadol- This is PRN and used to treat severe-moderate pain

•Biasycodal- Used for dysmotility

•Sulcraphate-This helps stop Gastrointestinal bleeds

•Heprin IV-Blood thinner

•Micralax-For constipation

•Flutrocortisone-For my heart and blood pressure

•Ivabradine-For my heart, its like a beta blocker

•Omega 3-This is to help bad gut bacteria

•Magnesium- to help my conditions 

7:45- I then get dressed, wash my face, clean my teeth and do my makeup.

My parents mix my feed up, the feed I'm on is elemental but I'm not tolerating it at the moment but we mix a sachet of this with 1000mls of water I think. I then put 40ml in to a bottle and connect it up, at the moment I'm tolerating 5-10mls per hour for 12 hours.My feed has to be kept in the fridge and changed every 4 hours.

8:30-I then have bloods done and a nurse come to my house.

10:10- I then go to school for as long as i can manage.

Then at lunch time I have:

•Morphine (if needed)

•Buscopan

•Tramadol

•Ivabradine

Glucogel (if needed)

•I also change my feed as it's gone 4 hours so it's gone off.

(I take these at 12pm/1pm)

•Iburprofen gel

•Dioralite

Then mid afternoon I have:

•Metoclopramide 

•Ondansatron

•Paracetmol

(I take these at 3pm) 

At 4pm/5pm I change my feed again

Then evening I take:

•Morphine (if needed)

•Buscopan

•Iburprofen gel

•Ivabradine

•Tramadol

(I take these around 6pm)

5.00- I also watch TV like greys anatomy or some sort of TV.

6.30-I then set up my TPN ready to connect:

-First i wash my hands

-Then i get gloves, saline flush, 2 giving sets, a 2 piece connector extention, a bioconnector, 9 alcohol wipes, sterile dressing kit.

-I then set up and connect my TPN.

8.00- Then at night time I take:

•Liquid parrafin

•Colecalciferol

•Ranitidine 

•Haelan cream 

•Metoclopramide 

•Ondansatron

•Paracetmol

•Selenium

•Omega 3

•Magnesium

Biasycodal

•Sodium picosulphate

(I take these around 8pm/9pm)

9.00-i also turn my feed off.

10:30-At late night I take 

•Amitriptiline 

•Morphine (if needed) 

•Buscopan

•Iburprofen gel

•Dioralite

•Tramadol

•Flutrocortisone

•Ivabradine

11.00- I then try and sleep if i can.

All my meds go through my PEJ/Jejunostomy, this is a tube into my small intestine.

I also have a PEG/Gastrostomy, this is a tube into my stomach, I have my PEG on free drainage connected to a bile bag 24/7 because my stomach cannot digest bile or acid this is because of a condition called gastroparesis, my intestines also reflux bile and feed into my stomach (have backwards contractions) so draining also helps get that out. I change my drainage bag every 24 hours.

'But you don't look sick...'

' You don't look sick'

Many people often say 'Well you don't look sick' which is a compliment but when you feel so poorly it can be so frustrating. So I just thought I'd make a short blog post on the day to day life of someone with a chronic illness or someone in chronic pain.

So I may not look sick but I'm currently in hospital trying to get all the nutrition I can as I need this nutrition to stay alive. I'm currently needing IV (into the vein) steroid anti sickness to help my nausea, morphine and more for my pain and needing several drips just to keep my hydrated, I also am getting 3/4 hours sleep at the most due to the pain I am suffering from the nutrition I need.

'I may not look sick but a few steps send my legs to feel like jelly'- this quote is so true, earlier I went for the walk and I reached the lifts just next to the ward and i was already exhausted. Just because I may not look sick,doesn't always mean I aren't sick.

'I may not look sick but something as simple as a dose of paracetamol can cause agonising pain'-

 this is another true quote, something as little as 20ml of paracetamol straight down my tube into my small intestine can cause me awful pain,  this isn't how a once regular teenager should spend her life'.

'I may not look sick but I suffer from an extremely sensitive heat intolerance' , 

this can cause me to faint from something as little as a bath or even standing near heat'. Due to this condition I could even pass out/faint in a room that feels like a normal temperature to you. 

'I may not look sick but every hour or everyday I'm fighting chronic pain' every minute of every day I'll have some sort of pain whether it is mild, moderate or severe. I get a wide range of aches and pains in my body, ranging from the top of my head down to the tip of my toes. 

'I may not look sick but the smallest sip of water could make me awfully sick' due to a condition I have called Gastroparesis (paralysis of the stomach), the smallest bit of oral intake can make me really quite poorly.  This is why I am tube fed as I can't sustain my weight and can become severely malnourished without my tubes.

These are just some of the examples I get on a day to day bases and although I may not look sick, looks can be deceiving! You may walk past many people daily who may be sick but you cant always tell by a single look. So think about what others may be going through before you judge them. 

'Behind the scenes'

I thought I would do a post on 'the reality' of been sick.

I have a huge list of conditions including Severe Gastroparesis,  Severe Gastrointestinal Dysmotility, Dysautonmia, Postural Orthostatic Tachycardia Syndrome, Chronic Lung Disease, A Kidney Disease, Ehlers Danlos Syndrome, Mast Cell Activation Syndrome, Small intestinal Bacterial Overgrowth, Leaky Gut Syndrome and the list goes on. 

I'm sure many of you have seen my Instagram pictures, baking in the hospital, riding on IV poles, meeting best friends, wearing cute pjs, nurses plaiting hair, lush baths, pamper days, Starbucks, daisy chains in the park, meeting famous people, crafts, and more. These are just the highlights but the reality is very much the opposite.

The reality and negative parts of my hospital stays are:

• Being too weak to get out of bed.
• Bed baths.
• Not being able to move with pain.
• Infections.
• Sepsis (life threatening infection).
• Vomiting.
  
  
  
  
• Bed sores
• Being bed bound for weeks
• Medication side effects
• Allergic reactions leaving me paralyzed
• Theatre trips
• Surgeries
• Weeks on Ketamine and morphine
• Blood pressure, heart rate, oxygen levels and temperature every 4 hours even in the night.
• Many cannulas
• Needing cannulas done at 4am
• Having to see doctors in the middle of the night.
• Oxygen
• Feeding tubes
• TPN
• central lines
• SATS dropping
• screaming with agonising pain
• Infusions
• Catheters
• Blown veins
• Doctors nearly having to shave your hair for IV access
• needles
• daily bloods
• countless medications
• Tests
• procedures
• dehydration
• malnourishment
• underweight
• Loneliness
• Isolation
• Home sick
• and so much more.
  
  At one point I was so home sick I couldn't even go on my phone to message my family because I would just cry as I wanted to be at home so bad! 

Not many people realise the reality of hospital stays, many people just see the positives, I don't tend to post the negatives for many reasons but what you think hospital stays are like is not the reality and unless you have been in hospital whether its a long stay or a short stay you will understand.

I have had many horrible experiences in the hospital like many people! I have been very poorly and also had not very nice things said, like before I was diagnosed I was getting told it was all in my head or it's mind over matter which is so frustrating when you know it's not. As many of you know I have also battled sepsis which was a very hard time which I don't really remember because I was on such strong drugs. I have memories from hospitals and met some amazing people but the negatives deffinatley out weight the positives.

my oxygen level and heart rate

The only people that truly see the struggles in hospital are your family, friends, nurses and other patients. There are many struggles you have to face in the hospital, no one see's the isolated and lonely times, the days where you are fed up, no one see's you crying and begging to go home when in reality you know you aren't well enough. There are many more 'behind the scenes' to been in the hospital, some I may not wish to share, but this post may give you a little more understanding.

My Story

My story

So ill try and make it as short and interesting as I can and ill probably skip bits. firstly ill start with birth. I was born 11 weeks earlier than I was supposed to so my body was not ready for life I guess you could say. My lungs where basically not working and I was dependant on oxygen. I couldn't eat or drink either so I had a gastrostomy feeding tube in my belly button.
Then at 3 days old I got a severe case of sepsis which nearly killed me, but I managed to recover from that and after 4 months I got to go home but was still dependant on oxygen and a feeding tube, which a few weeks/months later I eventually came off. Then from birth till the age of 13 I was kind of well I have suffered from asthma/chronic lung since birth so I've been to hospital for asthma attacks and various broken bones and damaged ligaments but that was about it.

So just after I turned 14 I started to go dizzy and kept fainting and suffering from fatigue I would have dizzy fits and many other strange symptoms. I ended up in a&e various times due to the dizzy fits which could last up to an hour where the room would just not stop spinning. After various  hospital trips and stays I was finally diagnosed with postural hypertension which is a blood pressure problem it was also concluded I had an overactive autonomic nervous system (dysautonomia) and it answered all our questions. Then a few months later I started vomiting after big meals and getting agonising stabbing pains in my stomach which then landed me in hospital with questioned appendicitis. I had many scans an blood tests where they managed to rule out appendicitis. Again after various hospital stays and tests they still did not know what was going on. I was a medical mystery...The stomach pains started to settle down and flare up from time to time but I controlled them with pain relief for a while. Then one day they came back and could not be controlled I then started vomiting blood which was life threatening so I was rushed to a&e when again they had no clue. At this point it was too serious for them to send me home but I was too complex for my local hospital so I was transferred from Hull Royal Infirmary to Sheffield Children's Hospital by ambulance and put straight onto the surgical ward and was seen straight away and put on a drip.

At Sheffield the vomiting blood settled and after 5 days I was sent home with colonoscopy, endoscopy and pH study test booked. So 3 weeks later I was again admitted to Sheffield Children's Hospital to be put under General anesthetic to have the tests done as there was a suspected inflammatory bowel disease and they wanted to find where the bleed was coming from. So we where then waiting 6 weeks for the results where I was told I had Gastroesophagul Reflux Diease (GERD) and an allery to wheat. So I was put on medication for my (GERD) and came off food with wheat in and everything was quite stable for 3 months.

Then Christmas Eve I was out with my family and had really bad stomach pains. So bad I had to leave and go home, I then started vomiting the blood again and was again rushed to hospital and placed in majors, I was admitted Christmas Eve and put on various drips and planned to have an operation the next day to see where the bleed was coming from. So Christmas Day I was put to sleep and had the operation but all they found was oesophagitis which was just from my gatroesophagul reflux disease and didn't really explain the bleed.  So I stayed in a bit longer and then I was sent home and left to Sheffield Childrens Hospital. Then from December to January I had occasional vomiting if I ate a big meal.

Then exactly a month later it happened again but was a bigger bleed and I was rushed to childrens RESUS and then admitted to the High Dependency Unit (HDU) for very close observations and was put on a drip and connected to many machines and kept NBM (nothing by mouth) then a few days later when I was aloud to eat I just kept vomiting and was told I wasn't aloud home if I kept vomiting anyway I was still vomiting but because I could keep fluids down which where most important they sent me home.

So it was now February and I hadn't kept anything down but sips of water for 2 weeks so as you can imagine I lost A LOT of weight and my local hospital now wouldn't treat me as I was 'too complex' so we got an urgent appointment at Sheffield and I was admitted to hospital. In this admission I had many tests and got an NG tube ( a nasogastric tube) this tube goes through my nose, down my oesophagus and into my stomach, and this was how I would be fed from now on. So after 2 weeks of constant tests nothing was found so I was sent home with an NG tube and on NG tube feeds and I had one last test which was at the adult hospital.

So 2 weeks later I then started vomiting my NG feeds and couldn't keep anything down again so we where sent to Sheffield Childrens A&E where I was admitted and got an NJ tube (nasojejunal tube) this tube goes in through your nose and down past your stomach into your small intestine. I was tolerating these feeds so after a weeks stay was sent home and was tolerating feeds. Then a week later I went to Northern General Hospital in Sheffield for my very last test. A few weeks later we got the results that I had a motility disorder. I also had an appointment to see a cardiologist to be tested to PoTS (postural orthostatic tachycardia syndrome), which my cardiologist said I had but could be down to poor nutrition. 

After that I was doing okay I had a few hospitals admissions to control pain and was rushed in by ambulance as I was vomiting blood again but apart from the odd flare ups I was okay. I then had an appointment on the 5th May (a day before my birthday) and as i'd been vomiting feeds so vomiting from my intestines and one night id vomited 7000ml of fluid so he wanted me admitted but as it was my birthday the next day I asked to be admitted after my birthday so he agreed. So I was admitted a few days later and while I was in hospital I started vomiting blood again so as a safety precaution I was moved to the surgical ward so I could be monitored as loosing blood can be serious! I still could not have any feeds as they made me vomit and I was vomiting blood and lots of fluid. I then got an NG tube put into the other nostril to drain the blood and vomit out of my stomach, so I now had 2 tubes in either nostril but it was helping so it was okay.My gastro team then decided I needed TPN (total parental nutrition), this is basically nutrition into the heart. So for this I needed to go to theatre and have a PICC line (a central line into my heart) placed. So I went to theatre and got my PICC line placed and started TPN. A week later I was still vomiting blood so it was decided I would have an operation to find the bleed and they would stop it. So they found that I had big ulcers sat on blood vessels which where bleeding so they removed them and that stopped the bleeding but where they had removed them in my stomach left me in severe pain so I was in the recovery from for 2 hours trying to control the pain and after 7 doses of morphine, 2 doses of ketamine (horse sedation) and many other pain killers, I was put on a morphine and ketamine PCA which is a constant drip of morphine and ketamine, then I had a button I could press when I needed a dose of morphine and that got the pain under control but they still couldn't understand what caused so much pain.

Then the next day I was so so poorly so the doctors came and took bloods and saw that my arm where the PICC line was, was really swallon and red so they took a swab of that and sent it off and then sent the bloods off. They then found out I had SEPSIS (a life threatening blood infection) which is a serious infection in your blood also known as blood poisoning but I didn't just have 1 case of SEPSIS I had 4 cases all at once plus cellulitis (a skin infection in the cells) infection. This infection then took nearly 2 weeks to clear and caused awful symptoms, it caused my intestines to shut down and stop working and then caused my oxygen levels to drop so I had to have oxygen and it also caused me to get a blood clot in my arm.  So a week later they decided my weight was too low and I was too malnourished, so they risked me getting sepsis again to put another PICC line in.

So then when I was more stable they decided they wanted to take my tubes out of my nose and surgically place them in my stomach and intestines. So I went to theatre again and had a tube surgically placed into my stomach called a PEG and then a tube put into my intestines this is called a PEJ and then I had laparoscopic surgery to remove quite a large part of my small intestine to send it off for a biopsy.   

Then after just over a 6 week stay in the hospital I finally started tolerating full jejunal feeds and was allowed to come off TPN and go home! I know have a diagnosis of Gastroparesis and I am waiting to see a surgeon for a gastric pacemaker. I was also told I have Postural Orthostatic Tachycardia Syndrome (poTs) also part of Dysautonomia , and I also scored 7/9 on the Ehlers Danlos Syndrome 'test' and they are pretty certain I have EDS I am just on a long waiting list to see the diagnostic team. I also have many other complex conditions and problems with my kidneys and autoimmune etc.

I wont write loads here but just a bit of an update! I am now on TPN (Total Parental Nutrition) long term and have been on it for nearly a year, I really want to get off it as it worries me a lot with the risks as I'm at really high risk of sepsis and other life threatening things! I have recently come out of hospital as ive been really struggling with pain and internally bleeding for my stomach so I had around 4 a&e trips in a week and was admitted several times as well where I was put on very strong pain relief including diamorphine (heroin) as the pain was so severe! I then managed to get home on a opiate medication called oxycodone which is stronger than morphine but I didn't find it helped as much as the morphine so they put me back on the morphine and tramadol! I'm now back at school but I am really stuggling with pain at the moment I'm having to have so much pain relief pretty much all the time which is horrible as I feel so spaced out all the time its horrible! my pain also gets so so bad at night so I'm barley sleeping! For the past 3 nights I haven't been getting to sleep until 5/6am (as the pain finally starts to ease at this time) and then I'm having to get up for school at 7am which is hard but I'm seeing a new pain team soon so hopefully they can help!

My diagnosis now (2017)

• Ehlers Danlos Syndrome (genetic condition)
• Gastroparesis (paralyzed stomach)
• Intestinal Failure (when intestines can't absorb/digest foods)
• Postural tachycardia syndrome (an autonomic nervous system disorder)
• Pan-gastrointestinal dysmotility 
• Small intestinal hypomotility
• Glomerulonephritis (A kidney disease)
• Mast cell activation syndrome
• Small intestinal bacterial overgrowth
• Leaky gut syndrome
• Asthma/ chronic lung 
• and more