Category: crohn’s, chronic illness

July 3rd – Crohn’s can Feel like Tackling a Mountain Every Day

1999:  It was very hot and sunny yesterday but today there is no sun, but it is still warm so we had some garden play. I have felt a bit miserable and told mummy I was poorly. I had some medicine and at 11.15 I laid on the settee with juice and my blanket and fell asleep. Today I received my first appointment reminder for the dentist. Oooh, I hope I’m braver than mummy! I woke up at two and mum and I got our togs on and walked to the park. After a while we went to the shop for ice-cream which ended up on the slide and most other areas around the park. We had fish cakes and chips, with loads of sauce and made a picnic of it in the garden.

2019: Today I am fundraising at work for Crohns and Colitis with my mountain trek less than a month away now. This time last year I was having 28 cm of my ileum removed and re-sectioned. I was very excited about this due to the amount of pain, grief, anxiety and depression it had caused. Unfortunately I didn’t get the outcome I had been anticipating BUT, I am on the road to recovery and hopefully will soon have colonoscopy and Barium to clear the way for 8 weekly infusions. Meanwhile, I have a mountain to run up and down. To read more of my story or to support or cheer me on, you can contact me on Instagram chronically_livingcd or http://www.justgiving.com/Mountaintimetrial

#toddlers #childhood #adulthood #fundraising #crohns #IBD #colitis #chronicillness #notalldisabilitiesarevisible  #mentalhealth #anxiety #depression #surgery

 

July 2nd – Bedtime Stories

1999:  Tonight Mummy told me a story about a lovely little boy called Jack, who lives with his mummy and has his very own bedroom but he spends most nights in his mummy’s bed, so he’s really got two!  Jacks mummy goes to work and so Jack spends most of his days with a lady he calls Edon.  Jacks mummy misses him and she can’t wait to get home at the end of the day to give him a big hug hello.  One day his mummy came to collect him and he sat on the toilet and did a wee.  His mummy put his pants on him and then they set off to the park.  Mummy had brought ham, cheese, chicken and cracker Luncheables and two cans of fizz.  Jack munched on these while he played and later they went for a walk.  They crossed a field and walked up a big hill and when they got to the top they found a big lake and sat and watched the ducks swimming.  They went back to the car and Jack drove it around the car park.  When they got home mummy decided to start cutting down the conifer trees in the garden and Jack helped.  They were both very grubby and had to have a big soapy bath to get clean.  Then they went to bed.  I thought it was a lovely story.  Can we do that one day mum?!

2019:  Mum used to make up all sorts of stories about our days and fantasy too.  She even made up a story to my Moonbeams projector when I was a baby, which she wold tell me every night, as the pictures went across the ceiling. She still has paper stories which have been in the draws for 20 years and will one day try to get these published. At least I acted today and went to the gym before work. My fundraising days at Aviva have changed and start tomorrow, which is slightly spooky as a year ago tomorrow I was having 28cm of my bowel removed.

#toddlers #childhood #adulthood #crohns #stories #bedtimestories #nighttime #fundraising #Aviva #mums #parents  #countryside #gardening

 

June 25th – A Little Trick Every Child Shoud Learn

1999:  We had to wait for the washing machine man again this morning before leaving for Edons.  When we got there I presented mummy with my first handmade card that I had made at toddlers yesterday.  I think she liked it, but I’m not that sure because her eyes looked a bit wet.  When mummy picked me up she had the card in her car and said that she had also had it on her desk with her at work today.  Edon reported that I have been a tyrant today (whatever that means!) and that at toddlers I hadn’t let anyone else play with the toys.  Well, why should I?  They’re all “mine” and it’s not my fault if the other children have a problem accepting this fact.  Things didn’t get any better with mummy  She thought it would be a nice relaxing change tonight to take a walk to the pub and have some chips and a “dink”.  She eventually gave up on the walking, putting me in the buggy and stating that it was a change but the relaxation thing just wasn’t working out.  In the pub garden, I made a discovery and I wanted to share my tip with other children.  If you sit on the toy train ride and shout “mum” at the top of your voice at least 50 times, your mum may ignore you but the nice young lads give you 20p to put into the slot just to get some peace. The way I see it everyone’s a winner – they get a quiet peaceful drink, I get a ride and it hasn’t cost mum a penny! 

2019: Haha. Can just imagine me continually shouting out. My stubbornness hasn’t abated. But to be fair, I wold also be one of the lads giving the child money for a ride! No pub tonight but another little truck I’ve learnt – dinner was ready and waiting for her royalty when she got home – Blue Cheese Brioche Burgers, complete with flowers and rose wine.  Hmm. Not sure how the cheese is going to get on in my bowel. Think it might be in for a tough fight! They tasted good though

#toddlers #tantrums #washingmachines #repairs #childminders #toddlersclub #sharing #cooking #bluecheese #crohns #IBD #childhood #adulthood #pubgardens #screamingkids #childhood #adulthood #humour

June 24th – Football and Results

1999;  Weather not so hot today so I was back in trousers. After Edons I played in the garden and watered the plants.  I had crisps, strawberries and melon for tea (hardly cordon bleu but I enjoyed it).  I watched mum peel off the melon skin with her knife and then copied her with my own plastic one but it looked much easier than it was.  Mum and I played football.  I’m getting quite good at scoring goals but mummy has to play goal scoring too, to my “ready, steady, go”.   I had such fun that I refused to come in for a bath and after many hysterics and tantrums; I ended up in bed at 6.30.  What ever happened to free expression?  We did have a cuddle and a story though.  We had ‘Peepo’ for the first time in a couple of weeks and I knew most of the words.  I wasn’t to be defeated though and stayed awake until 8.45, following a bottom shower at eight due to the poo factor.

2019: Continuing on the bum theme – mum rang hospital today and they cannot see an appointment with IBD nurse and they are not sure what’s happening with my colonoscopy re-schedule or the barium I was supposed to have after my early year check up. On the flip side, she has managed to get me an appointment with the IBD nurse on Thursday – Result!

#crohns #toddlers #toilettraining #childhood #adulthood #football #goal #tantrums #hospitals #chronicillness #food #fruit

 

June 19th – Insomnia and Snores to move Mountains

1999: Got put back in my own bed 3 times tonight, but I won in the end.  She’s just far too drowsy for a showdown in the middle of the night.  It’s lovely and hot today.  I played in the garden while mum made sandwiches and off we went to Marsh Farm.  We arrived so early that I got to drive round the car park twice sat on mums lap.  We spent 3 hours at the farm and had our photo taken on a cool postcard Machine. Once home, I played in the garden – shouting at Emma through our peep holes in the fence. We went to see Nanny and Pa and  Pa has bought a cricket set for our holiday and a new bedtime story book for me (if I can get it off mum that is).  We played in the garden and I shouted really loudly at a barking dog – “shut up dog”.  Nanny says now she really knows how I get spoken to at home (although I must say mum has never called me ‘dog’). Mum assured her that it is only during times of severe trauma, but I would like to point out that this is her trauma and not mine – I’m absolutely fine

2019: Never was a good sleeper. Still struggle now. Mind whizzing at 100 mile an hour, or stomach cramps from wind and crohns! But once I’m asleep – it can be like waking a rock and apparently my snores are loud enough to shake a mountain. Talking of which, meeting at work today to discuss my fundraising event in support of my mount Snowdon run in July for @crohnsandcolitis.uk.  Aviva are being very supportive and we are going to fund raise for 3 days at beginning of July including a cake sale. Mum offered to make some gluten and lactose free muffins but Mark pointed out I needed to sell these not give them away!

#toddlers #mums #parents #childhood #adulthood #crohns #colitis #IBD #Snowdon #fundraising #muffins #cakes #insomnia #MarshFarm #driving #mentalhealth #fundraising #Aviva #lactosefree #glutenfree #humour

 

June 12th – The Big MAP Shave

1999: I woke mum at three shouting “mummy, mummy, mummy”.  She came to, to find me falling out of her bed (she didn’t even know I’d got in).  She managed to catch hold of my legs and pull me back just in time.  Mum made cooked breakfast this morning, but I only ate the bacon.  It’s rainy but warm this morning.  I didn’t want to go swimming – I wanted to go to the park.  Mummy took me to Whacky warehouse which was good fun.  I put 20p in a machine to get some Jooster sweets but I opened the door too early and they fell all over the floor so we had to try again.  40p for 11 Joosters and mummy ended up eating the lot because I didn’t even like them!  Mum bought me a new pair of trainers and a big boy’s booster seat (which she now feels was a mistake because I discovered a new game – undoing the seat belt whilst in transit!) and an Action Man bag to take my many changes of clothes to Edons.   I had a bacon roll from the burger van (well two bites) and a can of lemonade which I was apparently meant to share with mum! Oh well, she got double bacon roll – even if she didn’t actually want it. 

2019: Mum text me today as just realised, the date I’m running up and down Snowden for @crohnsandcolitisuk, is the same day she had her head shaved to raise money for the MAP Vaccine. This is a potential cure for Crohns and is in its second phase of human trials. Corina and Lukes Big Map Shave raised £1112.03.  MAP (Mycobacterium avium subspecies paratuberculosis) is proven to cause Johne’s Disease, an inflammatory bowel disease affecting livestock and is very similar to Crohn’s disease. It is thought that thid is passed to humans in pasteurised milk and the only thing that kills it is sterilisation, but I just done like it!  MAP has been found in 92% of Crohns sufferers with a test developed by Prof. Hermon-Taylor , Kings College London. His team have developed a vaccine to try and eradicate this.  A potential cure for over 4 million sufferers worldwide, including  1.2 million in the USA and 250,000 in the UK. For more information on Crohns and this fascinating research and the vaccine go to http://www.crohnsmapvaccine.com/

#toddlers #mums #parents #burgervans #playareas #crohns #mapvaccine #crohnscure #IBD #Colitis #childhood #adulthood #kingscollege #chronicillness #cattle #milk #Johnesdisease

May 29th _ Potty Training and Bowel Prep

1999: Mum eventually got up after I’d done a poo in my pot.  The things us kids have to do to get our parents out of bed.   We had to go to the gallery and view my photos at Chelmsford  and when we were parked I wanted to do a wee so I had to go in the gutter of the car park.  That was fine until mums sunglasses fell off her head straight into the line of fire!  We saw the photos and it was so difficult to choose one as they were all lovely (not that I’m bias but I do take a good photo), so mum ended up paying an extra thirty quid to buy all the samples as well as one larger one.  She took me to the toilet 3 times when we were out.  But ‘I don’t want to go!’  Well I didn’t.  Not until we got on the electronic foot measurer in Clarks that is.  Oops!  I’m now a size 71/2G but they don’t have any sandals in my size, so I’ll just have to wait.  (What’s wrong with my wellies anyway?  I love em and they look great with my shorts!)  Aunty Eesa looked after me tonight as mum was going to work with Uncle Teddy.  We waved them off with a few tears, but Aunty Eesa told mum I’d be fine once she’d gone.  How does she know my tricks?

2019:  The day I resent the most is here – bowel prep day. Planned to take the gunk and try to sleep most of today to stave off hunger. Then I realised I didn’t have the medicine  but I did have a ticket for the post office as they had not been able o fit something in the post box a few weeks ago. Off I trotted – they’d thrown it out as had apparently gone past their 18 day. Rand the hospital who advised me to drive over and collect more medication. Off I set again only to be told I needed o start it at 7am and they will now have to re-schedule my colonoscopy.  Bums!

#toddlers #mums #photos #bowelprep #crohns #IBD #parents #childhood #adulthood #toilettraining