Jessica is 9 years old she has a colostomy stoma since age 4 she promotes positive stoma awareness and raises money for charity, page run by her mum
@kimlucock
Jessica had a fab day In school today ๐ tomorrow she's back at the hospital for a ultra sound scan on her liver then a little bit later a another xray on her bowel transit as Tuesday she had over 50 pellet still inside her on xray Jessica came out of school wearing her medal ๐คฃ
The final stretch ๐ let pray we get though today with no NG tube ๐ her bowel still isn't empty she's on clear liquid diet today 2 litres kleen prep 60mls senna and 40mls pico again we are so proud of jessica she's faced her fear of cannula like a pro ๐ช an drinking nasty meds
Happy Halloween everyone , Jessica didn't get to go out for long due to pains she's asked to go home but she loved getting dressed up she looks so cool xx
Jessica is absolutely drained today still in pain from the flare up which was activated by the manometry test ๐คฆโโ๏ธ and stoma hasn't started to work yet and sore skin from the bile around stoma she will rest for a few days untill everything is working as it should xx
8 years jessicas battled with her bowel with no clear answers we have a MDT meeting with GOSH and her team at alderhey gastro and surgical with her results and it's very soon ๐ฌwill we finally have answers that's the question emotions are high right now we pray we get answers๐
Stoma elf has spent the weekend at school he had a little accident with his stoma and Mr Henry gave him a little operation and he's all fixed and ready for mischief again ๐
So proud of you Jessica her worst fear is getting a cannula in whilst awake and she's done it the build up wasn't nice and a failed attempt in her left hand but it's in now in her right hand ๐
Off the doctors with our little sick note , since her procedure she's had a strange little cough thing and now she's developed a sore throat which hopefully is just viral but she's been so fatigued all weekend and dizzy, her little body is just drained xx
Jessica is waiting to go theatre she just wants to go home and trains are cancelled thanks to the poor service from
@AvantiWestCoast
we can not get home this evening ๐ข absolutely awful service
Emotions are high right now ๐ how can you have faith when they ain't a clue what they are doing and I had to explain she has a rectal stump due to her colostomy Jessica's consultants in Liverpool referred her for certain testing and these have decided to do half the testing ๐คฆโโ๏ธ
being a child and being told you need a stoma it can be scary , we aim to show how being a child living with a stoma doesn't have to be scary you can live your best life and the more awareness there is then when children grow up more people understand ๐ be kind raise awareness๐
My heart breaks ๐ 8 years of suffering with chronic constipation from birth , anal fissures, proctalgia, mouth ulcers , flare ups and yet we still haven't got a answer to why I will fight all the way to get answers even if it takes another 8 years xx
Second xray of the week done for this transit study still beads in her colon ๐คฆโโ๏ธliver ultra sound completed got to wait for a follow up appointment to discuss results , clinic appointment with her surgeon on Monday , Jessica was best pleased she couldn't eat before her scan ๐คฃ
Not the best day they wanted to put NG tube in her bowel isn't emptying good despite being on kleen prep but they have listening to me to protect her mental health but have added high dose picolax and senna along side the kleen prep she's been emotional but she's done so well xx
Jessica wants to help as many people as she can she's gone from a little 4 year old to a 8 year old and still embracing her confidence and helping others to embrace there's and she wants to give back ๐ค colostomyuk have been a massive support last 4 years
Happy Christmas Eve everyone
Jessica finally got to see a GP this afternoon she has Scarlet fever ๐ค and has been prescribed 10 days of antibiotics but sheโs ok and absolutely fine and she will enjoy Xmas sadly we canโt visit all the family but we are doing door step visits ๐คฃ
5 yrs between these photos
1st photo before hstoma she struggled through pain and tears daily to go the toilet and 5 years later she's had her stoma for 4 and half yrs still struggles with her bowel and other health conditions but she's thriving & smiling ๐ค and smashing it ๐
Talking about random things before going asleep and Jessica named all her school teachers who have been trained to do her bag she's had 10 staff members change her bag over the years how amazing is that for a school ๐ฅฐ these teachers are amazing ๐
Such a proud moment for Jessica, Jessica has always struggled with tablets and certain meds the people who know her understands this, this evening after a good 20 mins she took her Omeprazole whole with out being crush ๐ Jessica has a reflux cough for nearly 4 months now xx
Nearly 5 years Jessica has been advocating on social Media to help others living with a stoma she was just 5 when she started her page and soon she turns 10 we are so grateful her followers have been able to watch her grow up & still support the work she does she loves you all ๐ซถ
Nearly 5 months since Jessica has avoided a hospital admission ๐ for Jessica this is a big achievement ๐ this doesn't mean she doesn't have any issues going on it just means we are able to control them at home like legends ๐คฃ๐คฃ๐คฃ
On Monday nephrology asked Jessica to increase her fluids to at least 2 litres a day before her rescan in 12 weeks ,today Jessica got an award In school for doing brilliant with her fluid intake her school are a massive encouragement for her ๐
So tomorrow is the Easter bonnet parade at school Jessica is absolutely gutted she's going to miss it with being poorly ๐ข but look at her bonnet she made herself ๐
So last half term in October Jessica missed out as she was in great ormond Street hospital so this half term we are off to a cottage In Wales tomorrow to celebrate her daddy's 40th birthday ๐ let the fun week begin ๐ค thankyou everyone for all your messages yesterday ๐ค
Thankyou so much to
@Specsavers
and
@CitizenAwards
for helping to get jessica home to Liverpool after such a hard week at great ormond Street ๐ we can not thankyou enough , we are now in car ready for our 5 hour journey home ๐ xxx
What people don't see is the anxiety behind the smile ๐ tomorrow Jessica has multiple appointments at the hospital 1 is blood test she is terrified her new psychologist who we also see tomorrow has sent some links which are good but still doesn't stop her feeling anxious ๐ช
Changing my stoma bag in just 3 easy steps
Spray , wipe and put bag on ๐
Remember everyone one is different and my way of doing my bag isnโt the same for everyone ๐
1 and half hours to take the first set of beads 20 beads has been horrific for Jessica, we just pray this week has been worth it and she won't need to go through all these nasty tests again to find a proper diagnosis after 8 years , let's pray GOSH has the answers ๐
Who ever knows Jessica personally know how she won't stop untill she reaches her goals and today she achieved one of her goals she got her PEN LICENSE in school she's absolutely over the moon there is no stopping her ๐ค
Sore stoma and loose out put and blisters on her stoma and that's not a issue ๐ค๐ค I just wish professionals would listen ๐ข pic is for cuteness ๐ฅฐ๐
10 months with no hospital admission we are so proud of our girl in the last 10 months sheโs managed to get her 100 percent attendance at school for summer term , sheโs learnt how to take tablets due to her dislike of medicine tastes but sheโs coping in her own little way ๐ซถ
Gastro appointment this morning , Jessica's bowel problems are complex so her an apple ( stoma ) will be spending a long time together, Jessica is having some bloods done next week and is continuing all her meds xxx
Itโs not been the best week for little Lady and tonight we had a little visit to A&E but sheโs ok sheโs just got to rest and get better hopefully she will be able to enjoy the last week of half term ๐ค xx
Tomorrow me and jessica head back to London for her admission to
@GreatOrmondSt
this is a big change for our family due to the distance so they can't come to see us ๐
Back home and in bed Jessica was determined to go into school despite being poorly but best for her to rest and get better she's got that nasty virus that's going round with a sore throat , cough and temp xx
Jessica was back in school and she got a special sticker from her head teacher for her hard work today ๐ซ each hurdle she faces she bounces back even stronger ๐ช xxx
Stoma bleeding this morning with a bit of loose aicdy stuff before school and no output at all all day so making her eat and drink loads to get that bowel moving ๐คช wake up apple ๐ stop being naughty , jessica played football today ๐
#stomaproblems
#chroniccondition
Jessica has decided she want to try do her bag in school so Monday we will speak to her school and put a plan in place to enable her to do her own bag with the supervision , Jessica is only in year 3 and emptying her bag requires her to take her whole bag off and a new one on ๐ซถ
Tonight's bedtime story ๐ฅด ๐คฃ since newborn Jessica's always suffered with her bowels her stoma isn't a cure its inplace to help manage her symptoms and its gave her a better quality of life ๐ช
4 hrs in the hospital and multiple appointments anxiety was high but she got her bloods done ๐ค she also has nephrocalcinosis and something floating around her kidney she's to have another scan in 12 weeks time and we met her new psychologist who is lovely xx
Learning to change your own bag from a young age helps you feel incontrol , never push a child but always encourage our first tip for parents is ask the child if they want to help spray the bag off this is a big step for the child to start to take control ๐
Nearly 3 years since Jessica got her colostomy stoma , this was decided so her little body could have a break from pain from having chronic bowel issues since birth , Jessica still struggled with issues but we have more highs then lows happy stoma aware day ๐
The last few days Jessica's struggled with her emotions she's not been her bubbly happy self she lets things play on her little mind tomorrow is a new day ๐
Big achievement again today for Jessica she hasnโt been her little self today sheโs had tummy pains and she took her antispasmodic table without being crushed , Jessica has always had fears of tablets and this is the biggest one she has taken in one ๐๐ป she did it like a pro ๐
Hot one today 35 degrees ๐ฅต all ready to go out for the evening shopping and food , Jessicas bags have been absolutely fine they have stayed on with no issues with heat her skin is still amazing no sore skin ect ๐ซถ
Merry Christmas ๐ everyone we hope you all have the best day tomorrow ๐ thankyou for all you support this year ๐ I have made some wonderful memories ๐
So confident taking her tablets โค remember over coming fears can happen with patience and believing in yourself ๐
Excuse the Christmas theme going on in January ๐๐คฃ๐คฃ
Do not dwell on yesterday , today is a new today Jessicas picked up a bit today has more colour in her and her high temperature seems to have packed itโs bags and finally got off ๐ค
Just to get her to eat to get stronger she still hasnโt got a appetite but sheโs on the mend ๐ซถ
From a little 4 year old getting a stoma bag to a confident 8 year old who wants to help other children and adults who are about to start the same journey for them to know its OK ๐
#stomaaware
#Colostomy
#confidence
#beproud
We have been waiting for this week for weeks ๐ this will be the first time Jessica's had a full half of term in school everyday 4 days to go ๐ but this evening since 8pm she's been waking up on and off very agitated we are praying it's not the start of a flare up ๐ค๐ค
She's coping OK with drinking not at the pace they want but she's drank near 1 litre In 7 hrs we are so proud of her she's having her struggles but overcomes them, tomorrow is cannula day its not going down well but better then a NG tube aslong as we can stay clear of the NG ๐ค
Day 3
Temp still spiking but not as bad as yday , sheโs managed a few spoons of spaghetti which is again better then yday ๐ซถ
Sheโs had a nice bath and is now resting in bed
But we have a little smile ๐๐ซถ
Finally feeling much better and is able to go back to school tomorrow for the easter hop ๐ they don't break up until wednesday then a weekend of fun for her little sisters birthday ๐ค
Poor little lady doesn't get a break, she woke this morning not feeling the best we think she has some kind of viral infection, 3hr sleep after school and just had more meds for her throat her immune system isn't the best these past few weeks , a weekend of rest and movies ๐ฌ