I have been trying to write this blog for months. So much has happened since my last Crohn's story it's hard to remember it all. Being in and out of the hospital hasn't helped along with the lack of sleep and catching up with work when I have finally got home has made it simply impossible.
I have been posting for my friends on Facebook to keep them updated when I have been in the hospital. Sharing my feelings on social media has been a bit of therapy for me, don't know why but it has helped.
Here are my posts and the dates I posted them to help explain what has been happening in order and what words of wisdom helped me stay positive. My daughter is currently in Birmingham's Children's hospital as we speak. We have been here for 2 weeks today.
25 November 2016
Skye had her meeting with her doctor today at Birmingham children's hospital. She went with her dad and they talked about new medication and future treatments. This was a lot to take in for a teenager, bless her. Going to get to bed early so I can take her out for a girlie treat day tom just me and her! Once I get my head around everything that was said today about Skye's Crohn's I will write part 3. Skye's doctor is sending a letter explaining everything that was discussed as it was far too much to take in and the doctor knew I couldn't make it.
Thanks to all my friends and family for your support and kindness.
4 January 2017
Been a tough day at the hospital today with my daughter Skye and I could cry! Zac did me this little note all by himself on Sunday, I've stuck it on the fridge door to help me feel more positive and when I want to cry I read this and it totally cheers me up. Will keep it forever!
7th Jan 2017
Someone I love needs a cure!
My daughter's stuck in the hospital again!
8th Jan 2017
Had to leave her in hospital last night. She is 13 so is in the adolescent ward and she wants to act all grown up and stay on her own. I really think it's down to the fact that if I slept over I would have had to sleep on a chair and as she is always putting everybody else before herself she was worried about me getting no sleep. Been awake since 4 am, eager to get in and see her.
Fingers crossed she's a lot better today and we get some answers. All the medication she is taking for her Crohn's disease is just making her worse. Off to see her in a moment and cheer her up bless her, is awful to see your kids suffer.
9 January 2017
Been a tough weekend!
My daughter still not any better with her Crohn's flare up.
Day of more tests MRI and ultrasound.
So grateful to all my friends and family for always being there for me.
To all the other people in the world suffering, hold on to hope for a better day!
10 January 2017
My beautiful princess is home from the hospital. She is a lot brighter than she was and can't wait to sleep in her own bed later. Scan has confirmed her Crohn's has spread and we are being positive that we will fight this and calm the flare up down!
So happy to have her home!
Thanks again for all your kind words.
27 January 2017
My little Crohn's Warrior has been practising her yoga 3 times a week for half an hour.
I am so proud of her as it often hurts a bit due to her Crohn's flare up but she still keeps going. On the days she does her yoga she sleeps much better at night and already she is improving. She is currently being home-schooled due to having no immune system due to taking very strong steroids. These steroids make her bones ache and when she was going to school she was constantly picking up stomach bugs. The stomach bugs trigger her flare ups making Skye extremely sick and loose even more weight. As she doesn't get to do any school sports this is a great way to keep her fit and flexible. I am gaining too as It makes me practise more and along with my two yoga classes a week I can see how more flexible and strong I am becoming by practising 5 times a week. It is also making me feel happier and less stressed.
Happy Yoga Friday everyone!
5 March 2017
Been a very tough week! My poor daughter is having such a hard time with her Crohn's Disease. I can't bare to hear her tears of pain much longer. She has had the results of her MRI scan and things aren't looking very good. She cannot take any more steroids and the medication she's on isn't keeping it away. We adore her so much and it is breaking our hearts to see her suffer in agony most days.
I wish this marijuana oil would hurry up and be legal in the UK, I can only find positive things to say about it as for last 3 years it has helped so many Crohn's sufferers lead a normal life.
When your child is in so much pain and so unhappy what would you do?
It's so important for her to develop and grow properly at her age and her medication is not helping.We are desperate and are thinking of moving to Colorado so she can use this oil without us getting into trouble.
If we move there we wouldn't be able to come back with her as she would have traces of the substance in her blood and until it's legalised for medical purposes in the UK we are faced with these consequences.
13 March 2017
Yoga is not about touching your toes, it is what you learn on the way down.
Been a tough weekend! Anybody who has a sick child or is a Crohn's sufferer will understand the pain and fear it causes. To see my angel suffer like this is taking its toll on me and I look to yoga for help managing my stress and worry.
When my daughter can eat, move and stop sleeping all day, she likes to practice some gentle yoga too. But this week she will have to take it easy as she's hardly been able to eat and spent Friday and Saturday in bed being sick and in agony.
As I have my son too it's so hard for us as a family and we take it in turns to get him out and about so he still enjoys his weekend. I find it hard to leave her when she's in pain but dad's great with her too and my son needs some time with me.
We got her out a bit yesterday as the sickness stopped and she managed to eat a little bit. But as you can imagine we can't go far because she has very little energy.
We are so desperate to see her well again, it is breaking our hearts.
18 March 2017
I need all the strength I can today.
My daughter and I are at the hospital again. 2 days here so far, worse Crohn's flare up to date. She can't keep anything down now and I'm so sad!
20 March 2017
Sorry, I didn't update you all yesterday it was a very bad day, just about everything that can go wrong did. She managed to keep some of the Modulen down when it was fed through the tube very slowly 10ml an hour continuous, this was my husband's idea. My daughter's stomach is so small and even though this is nowhere near enough calories, if it stays down it is a lot better than her bringing it back up. Finally, the doctors have now realised that they can't expect her to have what she should be having as her stomach is just too small.
The fact that this hospital has no gastro team doesn't help my daughter's condition. They were over feeding and that was making her vomit terribly and with a tube in her nose and throat, it's been making her throat sore along with her back aching terribly from vomiting since last Wednesday eve. They are listening to us now and can see they were going too fast with the Feeds.
She is still on IVs and her blood platelets are improving, that means her Crohn's flare up is calming down. Her iron levels were so low that the doctor decided that Skye should have a blood transfusion to give her some energy and to help her heal quicker. She had lots of problems with her veins breaking down whilst the doctors were trying to insert a cannula, bruising both of her hands. Finally, after 4 attempts they finally got the tube into her vein. She's being so brave but I can really see how much this is affecting her mentally and she is so scared.
The doctors came round to discuss the blood transfusion risks as Skye is 14 they have to discuss things with her too. This upset Skye and alarmed her, especially when they said about an allergic reaction. They helped Skye and were brilliant assuring her that reactions were very rare and only happen to 1 in a million. The doctor said he had never experienced one in his 6 years of being a doctor and joked that he would buy her a lottery ticket if this happened. Dad stayed with her for the blood transfusion as I had to go home to eat. I kept texting to check it was all going well. At 8 pm I drove to the hospital to swap with dad as I was sleeping at the hospital, he came out to the car to meet me. He said, "I don't mean to alarm you but the last few minutes Skye's eyes have started to swell, I've told the nurse to go in and check, she has had a bag and a half of the blood so I'm sure she's ok".
I then, of course, rushed up to her room. When I walked through the door to her it was awful her eyes were so swollen her lips, neck and fingers were swelling and she could hardly speak. Her ears were hurting and massive and red. She stayed very calm and so did I just about every nurse was in the room and the doctor ran to us. They prepared the gas and air and I was so scared but kept calm for Skye and held her hand and promised her she would be ok. She didn't take her eyes off me and looked petrified and was looking to see if I was worried but I knew if I showed any sign of panic it would have made her breathing heavier than it was already becoming. I honestly don't know how I managed and I can say to all you mums that if I can keep calm so can you as you all know what a stress head I am. The doctor gave her Piriton, that thankfully she managed to swallow and they stopped the transfusion.
The swelling went down as quick as it came up luckily and they continued to give her Piriton for 24 hours. The doctor that had joked about the 1 in a million chance of her getting an allergic reaction came to visit us with £2 for Skye to buy herself a lottery ticket. We, of course, all had a joke about it, but I know that this has really scared Skye as she will probably be worried in future about the risks of other things that she might need. I Feel so unlucky at the moment and I am finding it hard to keep strong. She has slept since 1 am and I haven't really slept as I have been Listening and checking her breathing. I hope today is a better day.
24 March 2017
So I can finally let you know of the update on Skye now I've managed some sleep and my heads a bit clearer. She came home Wednesday and she has to be drip fed until the 9th Of March, she is counting! She can't eat anything just drink water and her Modulen formula is fed through a tube that is 6 times a day every 2 and a half hours which is keeping me busy. Is nice to feel like I can do something to help her, as I have felt so useless as a parent and now I feel like I can help. Is horrible eating in front of her as she still feels hungry, bless her. She was brave today and ventured out to pick Zac up with me from the school today, her choice and I was very proud of her as people will stare and wonder what is attached to her face. She seems tougher and stronger after our hospital experience and I am so proud of how strong she has become. I'm sure she is so worried deep down as her experience was so scary and is so much to take in for a 14-year-old girl. Skye and her dad met with the doctor at Birmingham's children's hospital on Wednesday and discussed some new treatments that she can start after April as the doctors and nurses were all taking their holidays during April. This has annoyed me as It will delay her treatment and keep her on only Modulen for far too long. She would rather have it through the tube as she hates drinking it and at least she doesn't have to drink it. I keep telling her she is healthier than all of us having a good detox to make her strong. She looks so much better and her mind seems clearer already without all her medication and she seems like my Skye again. She's still got a long way to go and lots planned that she is very scared about but we will get through it. I'm just grateful that she's here and feel like life is a blessing and want to make the most of every good day. Looking forward to seeing Beauty and the Beast at the cinema tomorrow. Beauty and the Beast is our favourite Disney film and we used to watch it together when she was little. I'm looking forward to not having to get up in the morning and spending some time with all my family this weekend. Hope u all enjoy your weekend and make the most of every day!
9 April 2017
Enjoyed a nice night celebrating Carly's birthday last night only to walk home to an extremely sick little girl. As advised by Skye's nurse to try a little bit of food before her tube could be taken out we did so yesterday. She only had 2 spoons of mash and broccoli and one custard cream biscuit. Don't think she will be able to stop her tube feed today as planned and this has made me very worried as she must be very blocked for this tiny amount to make her vomit all night and most of the morning. We are all very disappointed, poor Skye bless her. Life sucks!
10 April 2017
Poorly girl again, back in hospital! She's had some morphine to help with the terrible pain that she is in. The pain has eased for now. Not sure what's happened as she's only having Modulen and no food, she will need lots more tests again. Fingers crossed for us, everybody!
11 April 2017
Sad that we are stuck in the hospital for Kerry's Birthday, I have told Skye we can celebrate her dad's birthday when she's well enough. Poor Skye is still in agony and needs the morphine which isn't working as well. She has stopped vomiting but she's having how I would explain as 7-minute contractions that last about 10-20 seconds across her stomach. She can't stand up or walk, and nobody here at Coventry seems to know what to do for the best. We always have to wait for her professor to make a decision and he is never around. Waiting for the professor to come and see us to assess Skye's situation and make a decision on how we manage her flare-ups.
12 April 2017
Sending us home again, now Skye's pains have stopped, we have hired a wheelchair as she still can hardly stand due to the tightness in her stomach. I'm scared to go home but they are not able to help us here and Skyes professor is now on holiday for 2 weeks. Skye's Professor did come out to see us finally. He explained that Skye's inflammatory markers from her blood results show signs of a virus that's what he thinks has caused the terrible Flare up. He doesn't think it is wise to start any new medication at this time as he feels she's not well enough for infliximab which will need to be given by infusion. If her symptoms don't go in a few days Skye's professor has advised us to take her straight to Birmingham children's hospital where they have a gastro team that can help. He mentioned that Skye may need surgery to remove the area that is inflamed. He also found out after a phone call to Birmingham children's hospital that both top surgeons and Skyes doctor are on holiday over Easter, typical.... She can't take morphine home so we are trying something else to help that we can administer at home to help get her through the week before she can meet with her doctor at Birmingham. Fingers crossed we can calm her flare up down and keep her pain away.
14 April 2017
Good Friday is a day of hope,
It is a day where we look forward to a brighter tomorrow.
Many things happen to change the course of our life, sometimes these things are very painful and sad.
Never give up, keep strong, today might be bad, tomorrow might be worse but the day after will be sunshine!
Things are really tough for our family right now. My daughter has been suffering so much with her Crohn's disease. We have been in and out of the hospital for the last two years and her condition has got worse. We are a strong close family and will fight this together.
She cannot eat for another 3 weeks and we have had to cancel our family holiday to Cornwall as she is too sick. But she is still the most beautiful, kind, loving, selfless daughter and she is still managing to smile and keep her spirits up after everything she has been through.
Enjoy your Easter holiday, take time to reflect on your life, make the most of every day and keep loved ones close.
15 April 2017
Skye's been back in the hospital again. She just cannot tolerate more than 200ml of fluid without it making her vomit and have terrible contraction like pains in her stomach. She was in so much pain that she passed out and we had to call an ambulance. The ambulance wouldn't take her to Birmingham children's hospital as it's too far so it's back to Coventry for pain relief. Skye's Dad wanted to go with her and I had to stay with Zac. I did want to not be there for Skye but I really couldn't face another night of watching her suffer, I knew dad would be as good as me with her. Dad said he felt useless and it broke his heart to see her suffer in so much pain. Skye's flare up was so bad that the morphine had to be increased and she was still in extreme pain for hours until she vomited and there was nothing left to vomit, then the pain eased. Her condition is getting worse and we are so scared. After more scans to check her stomach and put on only water and diralite Skye's pains have eased, but she can't just survive only on water and diralite. Something needs to be done and I'm going to make sure it is!
After 3 days of phone calls trying to push for my daughter to get an earlier appointment to see her doctor at Birmingham children's hospital. They agreed to see her on 21st of April. He wasn't available until that day as he was in surgery. Skye's condition got worse and she started vomiting again so I rang Birmingham children's hospital and they suggested I bring her to Birmingham A&E.
I prepared our things and we made our way, my son went to my mums and we cancelled work. We left at 6 pm and with her sick bowl in the car we managed to get her there quite quickly and the traffic was good. Luckily we had taken a wheelchair that we had hired for her, her stomach was too tight for her to stand and walk so we parked up and she was wheeled into A&E. We still had to wait an hour before we saw a doctor and then we had to wait a further 4 hours before they could find her a bed.
We finally got her to a bed at 2 am and as there was only one bed for a parent I sent my husband back home to Coventry.
Here is my post that I posted after meeting with Skye's doctor early that morning. She had no more pains that night as she was not on her feed and had emptied all her blockage that day when she had been vomiting
21 April 2017
We are at Birmingham children's hospital and are here to stay. No more Coventry. Skye has been adopted here by all the amazing staff. I think we will finally get something sorted. As I thought an operation might be needed if we cannot reduce the flare up with a stronger medication. She is, of course, scared but wants the pain to stop so is happy to be getting somewhere. She has had scans, X-rays and blood tests and they are trying to fit her in for an endoscopy as soon as possible. I think we will be here for a while but I don't care as long as they get her sorted. We have a room with only one sofa bed for me to stay overnight but I might be moved to the Ronald Macdonald hotel which is 5 minutes away so I can get to her quick if I am needed. I can cook and do mine and Skye's washing and have a more comfortable bed if Skye is here for a long time. Skye's doctor is now away till Tuesday and is having a meeting with all the top surgeons to make a plan for Skye. They will need to review the recent MRI scan and after the colonoscopy will make a decision on whether an operation is needed or whether it can be controlled by a different medication. Her bloods have been sent off to check for TB as they can't start the new medication until they have checked she is clear from that. Her chest X-ray showed no signs but they also need bloods back as well. Unfortunately, her blood has to be sent off to a special laboratory and it can take up to 7 days to get them back and that's even in an emergency. I just don't think she can live off diralite until then and I don't think they realise how much pain she is in when she has her feeds. I have told them that even when she has less it still comes back up and they have suggested dripping 10ml hourly on continuously throughout 24 hours. I have expressed my concerns that I think even that will eventually come back up after it has built up in her tummy. I have explained that the pain she has to keep going through is killing her and me and we are both so scared. They want to try the feed at a lower rate as they need to for themselves how Skye reacts before they can decide whether to put her on IVs. This was the only thing they said they could do for now and they promised that they would give her stronger pain relief if the extreme pains were to happen again.
The week was tough my daughter had 2 more episodes of severe abdominal pain and vomiting on the Monday and Tuesday. We had to put her on IV fluid with no feeds. This alarmed the doctors and nurses and they could now see the pain it was putting my daughter through. She had extremely strong painkillers and offered Ketamine which I refused as I didn't think she would like that as it can make you hallucinate. Instead, she had a special lolly that contained opium that she had to suck. This didn't really help and the pain continued until she had emptied her body from waste again. She was asking to die, and giving up I felt like joining her and was giving up on hope. It is absolute torture to see your child in so much pain, this will haunt me forever. My poor mum was with me throughout Skye's worst ever episode, she was horrified to see her granddaughter in so much pain. I don't know how we made it through that week.
22 April 2017
Siblings are the people we practice on to teach us kindness, fairness and cooperation.
Their paths may change along the way, but the bond between them both will be everlasting.
Sure these two will miss each other so much when they are away from each other over the next few weeks.
My daughter is now at one of the best hospitals in the UK so hopefully, she will get better asap and we can all be together again.
24 April 2017
Never quit, if you stumble get back up.
What happened yesterday no longer matters.
Today's another day so get back on track and move closer to your dreams and goals.
You can do it!
Wishing my beautiful daughter all the strength to get through the next few weeks.
My little Crohn's warrior is being so strong and fighting every day against her awful disease.
I am so proud of my little girl!
25 April 2017
The longest journey of any person is the journey inward.
Was a very bad day yesterday. My daughter was in so much pain and I'm struggling to stay strong. Looking to my meditation and yoga to help get me through these tough times.
Hope today is a better day and we find out the date of her operation. I'm really missing home and having all my friends around to cheer me up.
Hold your loved ones close and make the most of every day.
29 April 2017
Well, we've been here for just over a week and it's been a very tough emotional rollercoaster. I'm sure I will come home with grey hair. The staff have been amazing and we now have a plan of action. Once Skye's bloods have come back from the special lab and providing it is safe to start a new medication this will start asap. She had her endoscopy yesterday and the results showed that her lower ileum is very swollen with a large stricture not allowing much to pass through. She has lots of scarring and the new medication will help to calm the area and prepare her for an operation hopefully by keyhole. We have to wait for this and no date has yet been confirmed but if the new medication doesn't work they will make a date very soon. She was able to eat for the first time in 6 weeks very little and often and it has put a smile on her face. I hope she will manage to hold it down. She had a new tube put in when she was put to sleep yesterday as she is very slowly 10ml first 4 hours of liquid feed then to 20ml and very slowly building her up. It will be a slow process but she needs to gain some weight and energy so her operation will run more smoothly. She must be petrified but she's being so brave. She has now been moved to a new ward and has made friends with a boy who is 15 that also has Crohn's disease and a girl with cystic fibrosis. We will be here for at least another week and maybe if she's stable will be able to go home before her she has an operation if she needs one. As it is the weekend Zac and Kerry are staying with me at the hotel now till Monday. The Ronald Macdonald charity hospital which has been such a help with staying here for such a long time. Sorry I've left it so long to keep you all updated.
1st May 2017
The best way to cheer yourself up is to try to cheer somebody else up.
Been lovely to see my little boy this weekend, he always knows how to put a smile on my face. He's also been charming all the nurses at Birmingham's children's hospital when he visits his sister.
Unfortunately, his sister had another setback with her Crohn's and I had to take him away and leave dad to be there for all her agony. The pain started when he was there and I had to pull myself away for his benefit. It's not very easy to walk away from your daughter when she's in absolute agony. Dad wanted to be there as he hadn't been able to all week. He was horrified with the amount of pain that he had to see his daughter in.
My little boy cried for the first time in my arms that night so upset and scared for his sister. I managed to put his mind to positive thoughts and hope that he forgets all this and continues with his happy carefree nature always smiling and looking on the bright side of life.
He will be going back home this week because of work and school and I will miss him and his dad so much.
My daughter's doctors have decided now that all food has to be stopped. She is completely blocked with her Crohn's and needs the operation asap. She is being kept going now only with IVs into her vein and cannot tolerate anything else. She has dropped to 4 stone 7 and at 14 years old and being 4ft12 this is awful.
Bank holiday and no doctors, this doesn't help us as it has pushed the meeting for her operation back. I hope they hurry up and give us a date as she is wasting away. Providing they don't try and fed her she is currently pain-free. But when she eats the pain it puts her in is simply agony like childbirth.
To all those Crohn's sufferers out there who also know pain like my daughter. I send you a huge hug and lots of love. What an awful disease that people just aren't aware of, the way it destroys people's lives and causes pain is devastating. Praying that very soon they will find a cure.
Well, good news, Skye's blood results were back this morning and she is clear to start her new treatment called Infliximab.
Infliximab is a chimeric monoclonal antibody illogic a drug that works against tumour necrosis factor alpha and is used to treat autoimmune diseases. Infliximab is used for the treatment of Crohn's disease, ulcerative colitis, psoriatic arthritis, ankylosing spondylitis, and rheumatoid arthritis. Infliximab is administered by intravenous infusion.
Skye had her first infusion this afternoon and will have her second in 2 weeks, 3rd in 4 weeks and finally every 8 weeks. It cannot be given by mouth because the digestive system would destroy the drug.
This didn't hurt and Skye has had no reactions so far. She is also on a weeks course of steroids to help bring the inflammation down quickly as the infusion usually takes a few days to a week to kick in. She can try to eat tomorrow but as you can imagine we are very scared.
Skye is desperate to eat but so scared of it causing her terrible pains and sickness again.
2 May 2017
The doctor, nurse, dietitian and youth worker have all been to see us today. There have been tears from everybody as my daughter is starving now the steroids have kicked in, but petrified to eat. I have been holding back the tears and being so brave, but today seeing her break down set me off. I hate crying in front of other people but I couldn't stop. This made everybody cry the doctor, nurse, dietitian actually, in the end, we laughed at ourselves. This helped myself and Skye and we had so much support from the nurses and everybody that it turned out to be a good day. Skye has eaten and so far so good. She has her tube in too and can eat anything she likes, preferably high-calorie food. Obviously, she needs to eat little and often to begin with. I'm praying that she will be ok and the infliximab works as well as it's meant to do.
3 May 2017
No problems so far, she has been enjoying eating again. She has been taking senna at night to help her soften her stools until her body is regular again. She is also taking gastro tablets to help break down the stomach acid. Her tube feed is running every evening for 12 hours 8 pm till 8 am at a rate 70ml an hour. Depending on how much she can eat in the day they would like her to continue to gain extra calories. I'm still a bit concerned about her eating and scared that it will cause her pain, but I am also hopeful that the medication will work and she will be ok. There are lots of risks with this new medication, but we really have no choice so we have to be positive.
4 May 2017
Another good day!