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 31st – The End of an Era

1999 – Last day of the year and last hand written diary – that is until the computer breaks down.  Got into mum’s bed in the early hours complete with big Po, little Po, buzzing Bee and a balloon.  Awoke at six for milk and up for the day at seven.  Mum put Tubbies on and gave me a bowl of chocolate buttons.   I looked at her and said “what about my juice then?”  She laughed and handed it to me.  She’d already put it on the side.  At eight I woke mummy for more juice and Tubbies.  I even got a marmite sandwich thrown in.  I let mum go back to bed until nine, at which point I’d gone to do a wee and realized it was daylight as there are no curtains in the bathroom.  I went into her room and said, “It’s not nighttime”, pulled back the curtains and said, “Look, see.  It’s time to wake up”.  I pulled back the covers.  Mum told me to go and do my wee and she would get up.  Wee done and mum was still in bed.  So I danced up and down the bathroom floorboards (no carpet here yet) shouting “mummy wake up, mummy wake up”.  That seemed to do the trick.  We went to Nanny and Pa’s, mummy wanted to go via ASDA but I won and she dropped me off and went back to ASDA alone.  She returned briefly and then left for work again and I really didn’t want her to go.  I was eventually cheered and persuaded to release mum from my clutches by a glass of fresh orange juice.  Who’s fickle?  We waved mum goodbye, I will see her tomorrow, but there are promises of a party at Nan’s tonight.  I was too hungry to wait for the party food so Nanny made me some tea and I ate it at the party table and then I had a lovely long bath in preparation for the fun.  I had a bottle of milk on the settee and a happy New Year to you all.  ZZZZZZZ.  Apparently the party still went ahead. 

2019: Well what a year its been. Have moved in with Zof, got engaged and started my infusions. Looking forward to more changes next year – as long as they are planned ones as then I can cope. Have been booked on door from 10 tonight until 4 am but at 3pm they called and made a change from 5 – midnight. Id planned to go over to Zofs parents before work for Hatties birthday but now cant go. Not happy. But at least I can start the New Year earlier with Zof and what a year its going to be

 

December 30th – New Year is Nearly Here

1999 – Up at 7.45 which I thought was pretty reasonable but mummy was still dopey. Mum had a bath and when she got out I pointed down below and asked, “What’s that?”  Mum said it was hair and I asked her if it had fallen off her head. What have I said funny now? We pottered around and then went out at 11 to see Aunty Rita and give her her Christmas present, which Father Christmas had obviously left at ours.  I fell asleep on the way home and awoke in my bed some hours later – soaked.

2019: Tired today but buzzing for 2020 and all it will hopefully bring if all our plans come off. Last day of office work until the New Year. Am off on 2^nd for next lot of infusions. Mum has finally managed to sort some holiday insurance for us through Purple Parking at £101 which wasn’t too bad considering some quotes for my Crohn’s. Have sent her my passport details for check in ….. not long now.  Hopefully start the year as we mean to go on – positive, happy and making memories.

December 29th – Food to Come Home For

1999:  Up at seven but let mummy stay in bed until 8.30.  Was dry and took myself to the toilet.  Was nagged to put the toilet seat down and shut the door though.  Honestly I wish she’d never met Mr. & Mrs. Feng Shui.  It was very frosty this morning and mummy said, “look Jack, all the grass is covered in Jack Frost”.  Oh no.  She’s flipped again.  I looked straight at her and said, “no, I’m not frosty” (and there’s no way I’m laying out on that grass either).  Mummy didn’t have to go to work until 11.00 so we went to Nanny’s at ten and we waved her off half an hour later.  I’ve had a busy day with nanny, Pa and Bomper – shopping and helping around the house.  Pa has taught me to play Jenga and I demonstrated my new found skill to mummy when she came home.  I also told her the name of the road we live in and the house number.  Clever old Pa. 

2019:  Zof has gone to visit her uncle in hospital today so a day alone catching up on sleep and chilling. Looking back on FB and seeing that two years ago I’d just been discharged from hospital following sepsis and having to face nightly drip  infusions of antifungals. My coming home treat? Dominos of course!

#sepsis #crohns #kids #mums #FengShui #food

December 28th – The Demise of Woolies

1999:  In to mums at 7.30 but didn’t stay for long as wanted juice and milk.  So up we got and mum put Toy Story on the video, which I watched with milk, juice and the last of the cookies.  I found my tractor and trailer under the breakfast bar in the kitchen and managed to put it together.  Mum says it has to go outside after today as it’s too big for the house.  I don’t see why it fits nicely under the breakfast bar.  We had a bath, called in to mums work for a while and then went to the slowest Donals in the world.  After 10 minutes of queuing, and only one person in front of us, we sat down for a happy meal.  Smile mum, smile.  Next we drove to Aunty Bim’s to be greeted by Jarvis the dog dressed up as Father Christmas!  Father Christmas (the real one) had dropped one of my presents at Bim’s by mistake – it’s lucky she knows me.  It was a Rug Rats camera.  Wicked.  I took a photo of Jarvis, a photo of mummy and mum took one of Bim, me and Jarvis – but we forgot to turn the flash on.  At least it had film in it I suppose – some progress has been made.  Next we drove to Chelmsford to spend my money but we couldn’t get parked.  We posted Agal’s present through her letterbox and then headed to Maldon, by which time I was very bored and went to sleep.  I awoke just in time to find myself being lowered into a Tesco’s trolley – oh joy!  It wasn’t too bad though, mum picked up a bag of Satsuma’s and by the time we got to the checkout we had ½ a bag!  Next we parked up the town and went into Woolies.  At last we’re going to spend my Christmas money, I took my big bag of sweets with me.  I chose a guitar, a policeman’s helmet and a Bob the Builder video.  Amongst all this I lost my sweets and mum sent me back to find them but I wanted chocolate footballs from the pick n mix instead.  Meanie wouldn’t let me so I decided to whack a few shelves on the way to the tills.  Next I know, the guitar, helmet and video were all back on the shelves and I was being marched out of the shop.  I was a “good boy” now and “I want my guitar” and I sobbed this all the way home.  Mum quit those sticks again a few days ago (it’s such a common occurrence I didn’t bother to mention it before) and although she’s grumpy she doesn’t seem so guilty so decisions are made and there’s no going back.  I was okay, just about; by the time we got home.  We had liver and bacon for tea and then I played with my new printing book.  What a lovely mess.  Tonight mum took the Christmas tree down so that she could set her computer up on the table where the tree had been.  I put the decorations and tree in my tractor and drove them away.  Went to bed at eight but didn’t sleep until 3 wet trousers later and nine on the clock.

2019:  Mum has told me the ‘putting everything back on the shelf’ story several times over the years so I suspect it still gets to her more than me. Id forgotten all about it (and cannot actually remember the event – just the retelling). As for ‘Woolies’ I don’t even remember it. Apparently it went into administration 11 years ago owing £385m. How does that happen? I go £3.85 overdrawn and my banks chasing me!

#kids #parents #work #macdonalds #Woolworths

 

December 27th – Christmas Jobs

1999: Into mum’s bed in the middle of the night complete with big Po, little Po and buzzing bee.  Mum said there was no room left for her in the bed.  I said, “Yes, is”, patted the bed and said, “see”.  We slept until Mummy’s alarm went off at nine and I carried on snoozing for 5 until mummy arrived with milk and Tubbie cookies.  Grandma collected me this morning to take me to see Daddy, I was a bit hesitant at first but tempted when I heard Father Christmas had been there too.   I fell asleep in the car on the way home but woke up as soon as we got there.  I showed mummy my new ride on tractor and trailer, computer, musical car, batman plane, pyjamas  and £45.00!  Mummy said tomorrow we would go and buy a batman to go in the car.  I played nicely until 8.15 when mum gave me a tube of sweets, which I promptly lobbed, across the room in temper (and I’m not saying why).  Next I knew I was in bed, despite me saying “I’m a good boy now”.  Apparently that doesn’t count.  Oh well, I’ll just have to be awkward and stay awake for the longest time possible.  It was great; mum was really wound up by the time I went to sleep at 9.45.  She should be grateful, I brought her a present back from Daddy’s a Cherished Teddy called Jerrod ‘don’t worry, it’s just another little bump in the road’.

2019:  Back to the office job today. It didn’t go too bad but Id rather be riding that tractor! Tonight is the first time Zof and I have been home together all week and we had planned to make our Christmas dinner but couldn’t be arsed to wait for it all. Two big dominos, sides, wine and Gavin and Stacey coming up. All went down a treat.

#Kids #parents #family #CherishedTeddies #tractors #jobs #Christmas #Food #cooking #Pizza #Dominos

 

December 26th – Happy Boxing/Fight Day

1999: I wanted to do some drawing so mummy set my little table up and I drew pictures whilst munching ½ tube of Jelly Tots.  Then we went down for tea and milk and I played with my lorry, car, alarm clock and harmonica.  We drove to nanny and Pa’s and then mummy and I went on a big, big bike ride.  Mummy peddled, whilst I sat on the back and serenaded her and the town with my harmonica.  I talked to everyone we saw and said “hello” to all the doggies as mum peddled by.  When we were nearing Nanny’s mummy said she was worn out and I said, “I’m worn out too”.  For some reason mum thought this was very funny but it’s hard work riding pillion and playing music you know.  After a quick cuppa we got back in the car and went home to make Tubbie cookies and then mum put her computer on the dining table, but that’s as far as we got.  We had a bath and got togged up and then we went to Nanny’s – again to see Aunty Esa, Dandell, Dessica and their family. We stayed for dinner and played some games but people don’t seem so interested in a nearly 3 year old and I seemed to get in the way quite a bit.  The girls great granny took me under her wing though and mum was fairly reasonable.  We stayed at Nanny’s until late at night and I didn’t want to go home but mummy said she did and she looked near to tears so I got my wellies, sat down and put them on.  We said our goodbyes and off we set.

2019:  Kings Lynn football ground today – not the pleasure that Norwich was. KL V Boston. They had stollen snooker/pool balls from a local pub nd were throwing them at each other, Stab vest didn’t help as got a bottle thrown at the back of my head, there were 10 of us, hundreds of them and the police just stood in a huddle in the corner. Have told them I will not be working that fixture again. Absolute nightmare. Happy Boxing Day. Luckily nighttime gig was cancelled so I could catch up with Zof and her family 😀

#kids #mums #friends #boxingday #football #Boston #KingsLynn

25th December – The Day is Here

1999:  Happy Christmas!  I didn’t wake up until 7.50, in mum’s bed where I had apparently been for most of the night.  We went into my room to see if Father Christmas had been.  He had and I had a great big sack full of presents.  Mummy went down to make tea and milk while I started on the first present, which turned out to be a game.  I asked mum to play too but she said we couldn’t play with everything as we had lots of pressies to unwrap.  We took the sack to her bed and carried on through the sack opening, pens, paints, sweets, illuminating stars, a home bake Tubbie cookies set etc.  I carried on eating and unwrapping until we got to the lorry and cars that Aunty Eesa had bought then we had to go downstairs and play.  I did carry on unwrapping though – a musical toothbrush, tools, a moneybox, a harmonica and of course more chocolate.  A lovely healthy balanced breakfast.  We went to Nanny and Pa’s, me dressed in my new handyman outfit, which I’d also unwrapped.  Uncle Terry arrived shortly afterwards and then Pa with Bomper and for the next few hours we opened lots and lots more presents.  Mummy got a computer from Uncle Terry and a bike from Nanny, Pa and Bomper and I got a snowsuit, a Harley Davidson bike jacket, and a bike seat for mums bike.  We all sat down for dinner, which was lovely, and then mummy and Terry nipped home to get my Teletubbies bike helmet.  When they got back mum put it on me and Pa went upstairs to get her new bike.  But it looked a bit smaller and it was all wrapped up again.  Oh wow a motorbike all of my very own!  I went for a ride all kitted out but the stabilizers aren’t very good so I can’t ride it on my own yet.  I probably would have worn the battery out anyway!  Later mummy and Pa put my seat on her bike and we went ‘round the block’ which was great fun and then we packed all our pressies in the car and went home.  I decided to cover myself in felt tip pen so I ended up in the bath and mummy ended up in a strop.  I was quite tired so mum put my new Winnie the Poo pyjamas and later when I went to bed  I looked up at mummy before I fell asleep and said, “Thank you mummy, for my bike”.  She smiled, gave me a big hug and I fell asleep

2019 – Got back to mums at 12.30 – I may be 22 but I still want to wake up here Christmas Morning. Woke up at 11 when Kiegan arrived. We opened presents and later Nana, Pa, Marks parents and Zof came round for Christmas dinner. We are going to see Les Miserable at Norwich in March and I have a voucher for Clay Pigeon shooting. Tonight we drank and munched on cheese board and left overs and Zof and I ended up staying the night. Was a lovely chilled family day ( although mum is hoping we can do Christmas next year or her present to everyone will be paying for us all to eat out!)

#kids #mums #family #christmas #presents #bikes #LesMiserable #Norwich #ClayPigeon #food #cooking #cheese

 

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

Dcember 23rd – More Secure

1999:  Awake at six, Mum joined me in bed with milk for half an hour and then I went off to watch Sesame Street.  Mum went back to bed until 7.15 when she had to get up as I’d made a mess with poo.  Have a cough and was a bit poorly at Deedons this morning and when mummy came to collect me at 4.30 I was sound asleep.  Luckily Al had given mummy a lift and so I cuddled up to her on the back seat whilst we had a chauffeur service home.  I managed to wake up enough to eat my tea and a bath with mum.  Pa arrived to baby-sit as mummy is going out on her works Christmas party.  I wonder if she’ll get to see Father Christmas too?  Pa put me to bed with milk, quite late and then I heard Nanny come in.  I called out and asked her for more milk which she duly fetched.  When she went to leave the bedroom I said “Nanny.  Pa gave me milk cold!”

2019: What a grass! Always say it as it is me. Should have listened to my tummy last night – have been so sick overnight and had to take the day off. Felt better this evening though and was able to work a door last minute in Norwich, but mum had to come over first with my earpiece that Id left at hers and then I had to go to zofs parents to get my black trousers from the back of her car. Luckily I managed to buy my stab vest today so mum feels a bit calmer.

#kids #mum #kidstv #toilettraining #christmas #milk #grandparents #babysitting #crohns #Norwhich #doorwork #stabvest