Crohn’s Help Wanted

Does anyone have any experience of Stelara for Crohn’s? Infliximab and azathioprine have not worked for my son. He has had 30cm removed and a re-section 2 1/2 years ago but ulcerated again within 6 weeks. He wants a bag and his life back. It is not “optional” despite sepsis from treatment and exclusions from many jobs (fire brigade and police due to toilet needs (army a no no even with a bag for this one)) Or is MAP vaccine live yet? Or has anyone had experience of stem cell and neonatal cell transplants either here or abroad. I am willing to pay to go abroad if need be. Please please leave your feedback below so o can research more. He will always be my baby boy no matter how old (he’s 24 😉) Thank you #crohns #crohnstreatment #stemcelltreatment #mapvaccine #stelara

December 24th – Christmas Eve Wigilia

1999:  Slept right through until seven.  Mummy says it’s one day until Christmas and that Father Christmas will come tonight – but I like counting so I said it was 1,2,3 days.  Went to Deedons just for an hour this morning and then Nanny collected me to take me to the doctors about my cough.  He has increased my inhalers as thinks it’s part of this Cryptosporidium thing.  Why he thinks inhalers will help my bum I don’t know.  Back to Deedons until mum came for me at four thirty.  Mum is poorly too and has been in bed all day.  I looked after her and gave her lots of hugs and kisses especially when she got tearful (apparently Al has gone away again).  Mum let me open another present tonight from our neighbours – more sweeties and a wind up toy.  I didn’t want any tea, choosing to eat my sweets and I think mummy was very relieved, as she’s feeling very sick.  I managed to make her laugh though.  She reckons I haven’t quite got the hang of name-calling.  I don’t know why.  I kept saying things like “you a flower you are”, and a sweet and sugar!  We both had baths and put our pyjamas on and then mummy got my sack out ready for my pressies and I decided to leave it downstairs.  I went to bed at 8.30 and then decided to take my sack with me and put it in my bed. 

2019: Sleeping this morning after nights work. Went to B&M to get Christmas bits for mum and Mark. I tried to buy cherry screen wash to replace all Marks that Ive used throughout the year, but they wouldn’t sell it me as I did not have my ID (have lost my wallet yet again!) and it contains alcohol!  Anyway, I took their Christmas boxes to them and chilled with Mum whilst she got my clothes washed and dried ready for tonight and then I was off to work another door. Unfortunately I did not get to see Zof and her family for Wigilia today, as by the time I could have popped in they would have been feasting so went straight to work from mums.

#kids #mums #childminders #christmas #counting #illness #heartbreak #christmas shopping #ID #alcohol #Wigilia #food #security

December 22nd – Madness and Us

1999: Up bright and early but not unreasonable.  Mummy got me dressed early as it was cold but regretted it 15 minutes later when I wet myself – she wasn’t impressed.  Did some colouring in my new book that Josh had bought me, with my crayons from Father Christmas.  I told mummy that one of my crayons didn’t work and said, “look I show you”.  I came back with the offending crayon and drew on the book saying, “Look see”.  I throw it out”.  It seemed to make mummy smile and she said not to as it would work on coloured paper it was just because the crayon was white!  Deedons and Nanny’s today.  I took Bomper home with nanny and then Nanny took me home to bed.    Mummy has gone to that London place again – something to do with Madness.  Quite apt I think. 

2019: My first ever outdoor concert – Madness at Blickling Hall – loved it. Love Ska. Me and mum have been to see the Specials since also. Got to mums at 5.30 am after a hectic night and got a few hours sleep until lunch time when Geri and the girls came round for pizza and alphabites and Christmas pressies. Mum had bought us all Christmas Eve Pressies –  Pj’s with ‘Santa it’s a long story’ and ‘I’ll be good next year’ and, as I am now working Christmas  we opened and wore them today. Mum always likes to do something for Yule anyway as its more her pagan thing and today is winter solstice. Later Zof and I fancied a Chinese and, despite my tummy resisting at even the thought, that’s what we had. Went home late tonight as on an 8 – 4 tomorrow.      

#kids #mums #toilettraining #colouring #christmas #London #Madness #Concets #BlicklingHall #wintersolstice #pagan #yuletide #chiinese #crohns #specials

December 19th – Messages from the Other Side

1999: Another restless night as mum and I are now bunged up with cold. This morning we wrapped up very warm and walked to the shops for sweeties and then on to the park.  On the way we found a wheel trim, a shoelace, a big piece of wood and a baseball cap!  We had a lovely time at the park and walked back through the fields where we saw 4 dogs and a game of football.  We got home and warmed up with milk and Christmas Teletubbies.  Then I wrapped up again and played in the garden for an hour.  It’s very cold today.  In fact, another thing we saw on the way to the shops was puddles, but they didn’t have water in – they had ice!  This afternoon I have been all sorts – a baby, baby Jesus, Father Christmas, a dog and an elephant.  Tonight I told mummy I had a little boy sitting next to me.  She asked what his name was, I thought for a bit and then said “Rachel”.

2019: And I saw children for years. I don’t see things so much now but feel people looking and watching me – mostly Bomper who seems to have followed me from house to house. And it’s not just me – others will testify to hearing things where I lived. H used to freak out when we stayed in my downstairs den at Dussindale – we’d be laying there listening to the washing airers moving across the bathroom floor above. And often the kitchen cupboard and draws would be wide open. Another time, when I was living in a chalet in Sussex life guarding, me and my roommate actually filmed orbs around me when I opened the front door!

#kids #parents #christmas #play #weather #ghosts #lifeguard #sussex #norwich #friends

November 11th – Driving Cars

1999:  Mummy overslept and didn’t get up until 7.15.  I hadn’t overslept though – I was awake and drawing in my bedroom – my first time ever that I didn’t go in and wake mummy up and look what happens!  We made it to Edons just after 8 and mum collected me in the playground again.  No playschool today though – we went to the doctors this time.  No chest infection but have Sudafed medicine for all my congestion.  I’d been tired and poorly at Edons and had Calpol and asleep and by 7.00 following sausage and beans, my bath and Pat I was nowhere near tired.  We started reading stories in bed and then there was a knock on the door.  Next I knew mummy was downstairs and Pa was in my bedroom!  Then a few minutes later I heard Uncle Terry and Nanny and Mummy gave up!  I looked out of the window at Terry’s new car and then I did impressions of Terry from the TV.  We waved them off at 8.15 and I went to bed and sleep.

2019: Always loved cars  Spent today driving back from Coventry to Norwich with Zof as the rest of the clan went back yesterday. Was gonna go home via mums but so exhauseted by the time I got to Norwich that w stayed at Zof’s folks overnight.

#driving #cars #children #parents #congestion  #family


November 3rd Why its Good to Pick those Bogies

1999: Into mum’s bed in the early hours and slept until seven when we dragged ourselves out of bed.  Had bix for brekkie, which I ended up finishing off in the car.  Went to Nan’s at 11.30 and we had a working lunch round Asda. Had some passport photos taken today at Asda but the stool was a bit too low and I only had half a head.  Mummy arrived home at half five, Pa was already there and I’d eaten my tea.  I’d spoken to Pa on the phone earlier and said “I wish you were here” and suddenly he was in the lounge.  Tonight I proudly picked my own nose,  before only mum could do it.  Only difference was I proudly showed everyone – and then ate it. 

2019:  Not gonna lie. Still pick my nose but I flick it or wipe it now! There is actually a book called “Why Picking Your nose and eating bogies is good for you – and other great stories!” But I can’t bloody  find it now. All I can find is goody books like “Don’t pick your nose Ned” and “Picking your Nose: Change your bad habits now!” But scientifically (because I have to know how everything works and why) picking your nose clears it and eating our boogers can actually help build up your immunity and make you better equipped for fighting infections. Infliximab infusions and bogie picking here I come!


November 2nd – Blood Test Stress

1999: Initially up at four, but once I had my juice I happily returned to bed with Po and declined mums offer of “join us”.  Slept again until seven.  Not much to report today apart from a poo nappy and two sets of wet clothes.  I was very tired when mum collected me and was asleep by 5.15

2019: Back to work today (I’m glad I didn’t do a shift swap to watch the disastrous England rugby playing ) but need to get my bloods done ready for Mondays in infusion but its Saturday and phlebotomy at the hospitals are closed (yesterday was too early). Mum is away to Lincolnshire for a week before I finish work and cannot do them. She suggested I contact ambulatory at JPH and see if they would do, which they did.  

#children #parents #crohns #mentalhealth #bloodtest #infliximab #toilettraining #work

November 1st – Gate Crashing

1999: Into mum’s bed at seven.  Mum got up and left Al and I snoring.  I eventually stirred at half seven.  Off to Edon’s and Playschool.  Took my yoghurt pot and sponsor money – £27.00!  Built a construction of 4 boxes which mum cruelly threw away (she did it when she thought I wasn’t looking, but I know these things).  Picked up Playschool photos but I don’t think mums going to have them as I look a bit stern and have my ‘playschool (scruffs) clothes’ on.  She’s such a snob at times.  When mum collected me I was very happy, despite no sleep today and I have been completely dry.  I went to the toilet all on my own before we left but made my pants damp – not wet, as my willy slipped!  Had egg and bacon pie, which mummy had actually made (and it was actually edible), followed by banana yoghurt and chocolate flakes.  Mummy let me have some sweets, as I have been such a good boy.  Then I pooed my pants.  Following a quick shower I had a lie down on the settee and was off in the land of nod.

2019: Back to work today. Got a text from cousin Beau saying he was at Nanny and Pa’s so Zof and I descended on them at 9.45 pm after work. Think everyone was ready for bed but we kept them up for some games and frolics and had a great time.


children #parents #pottytraining #toilettraining #cooking #food #grandparemts #Playschool


October 30th – Chocolate Money

1999: Up at half five but persuaded back to bed with mum for an hour and then we got up and went downstairs.  Mummy fell asleep on the settee until eight which was great as I got to trash the lounge.  Mum awoke to find I had also helped myself to whole cup of neat orange squash.  We went swimming and ate in the pool cafe afterwards, but I decided to eat most of mine in the car.  Unfortunately my food hit the floor before we reached the car.  We went to Asda to look for Nanny who does in store demonstrating and I spied her easily and I tasted her chocolates.  What a great day to come to Asda! Mum didn’t think so though – was it the chocolate or my tiredness that caused me to knock everything off the shelves and rails?  Who knows, but either way I had fun. 

2019: Off today and booked my CITB for next Tuesday so I can earn extra money on site as ours just seems to disappear. Mum is worried about me over doing it and advising that we will always spend more than we earn. I told her that’s rich coming from her. I’ve seen her do a day shift into a night shift and back into a day many times before!

#childrne #parents #grandparents #tantrums #swimming #food #building #money


October 29th – Cool Motors

1999:  Awoke at 6.30 with the alarm but mum and I both stayed in our own beds until she finished snoozing it.  I went in to see her and said “can I have dippy eggs, with soldiers” (whilst shrugging my shoulders)  Mum was surprised as I have hated eggs until now and especially when I said I didn’t want any milk.  Mum went to the kitchen to make egg and when she returned I was sat on the settee, cushion on lap, ready and waiting – and I ate the lot.  Went with Edon to see her sister today who has a really cool car – the roof disappears!  When mum came to collect me I ran off shouting “don’t like mummy” for all to hear (she’s such an ogre after all) but eventually I climbed into the car. I had a bowl of pear, apple and sweets for tea as I didn’t want any dinner. 

2019: Talking of cool cars, my VW is finally in for repair and I have a courteousy car – a bloomin Nissan Micra. Its that old it has a tape player and my head touches the roof, my knees hit the steering wheel and the gear stick. I feel like a sardine. After cramming myself in and out of it, once home I realised I’d left my flat keys  at the dealers with my car key. So I had to go back again. That’s my street cred out of the window. I’m hiding up for the rest of the day 

#kids #parents #mums #childminders #cars #VW #humour