Thank you all so much for reading the first part of What is Crohn's Disease? I have had such a massive amount of wonderful support and kind words since writing it makes it all seem worthwhile.
I am very sorry that part 2 has come later than I anticipated, please accept my apologies. Things have been really positive for once due to the steroids Skye is currently taking and I didn't want to think of the past year and write about it. I will also blame I'm A Celebrity Get Me Out Of Here for some of the backlog.
I will now continue my story ...
Here is a recap of the last paragraph to remind you where the story had stopped.
We walked to the main hospital entrance where I could now pick up a signal for my phone and ring my husband (Skye's dad) who had stayed at home to look after our son. He had been waiting anxiously for the results all day and picked up the phone within seconds. Soon as I heard his voice I cried, I didn't want to do this in front of our daughter but I just couldn't help it. I told him the results and he said he would come and pick us up. When he arrived he hugged Skye and I could see tears in his eyes but he said softly to her," that now we had an answer we could begin proper treatment to make her well again". My daughter and I felt safe with him and he made us both feel a bit better. We were glad to be going home and Skye was looking forward to being able to start to introduce food that she had missed so much during her 6-week break from it.
We focused on all the positive things to keep Skye's spirits up, we were all still getting over the shock and didn't really know anything about Crohn's Disease. My husband and I felt useless and I felt extremely low and emotional. Why Skye? I know we all love our children and think they are amazing, but this little girl hasn't got a nasty bone in her body, is so kind, selfless and has always behaved like an angel, why her? Of course, nobody deserves to be ill or have an illness, and others suffer so much more, however, and being completely honest it made me feel very cross with the world and I just wanted to hide away.
The introducing of solid food wasn't as easy as we had hoped, my daughter's stomach had shrunk and had got used to only liquids. After a liquid diet, it is generally difficult to digest certain foods as it requires the stomach to produce a large amount of hydrochloric acid. Skye had to consume a bland diet such as rice or potato with a few cooked vegetables. Green, black or purple kale, or collard greens are generally easy to digest. I was very proud of my daughter, she worked hard to eat small amounts of these types of foods even though she didn't really like them. The professor had advised to eat lightly, chew slowly and thoroughly and to skip eating a huge feast to avoid feeling sick. We started by replacing a shake for a small bland meal for 3 days then we replaced another shake with some 50/50 bread with marmite and a pureed fruit pot. Over three weeks eating became easier, but certain foods had to be completely avoided as they caused tight pains in her stomach.
Our daughter was very fed up and just wanted to be able to eat like everybody else, the pains that certain foods caused, had her curled up in agony every meal time making her resent most foods. She avoided eating in the canteen at school but was allowed to eat in another room with one of her friends. Her marmite sandwiches were just about the only food she could eat that didn't cause too much pain. Thanks to the support from my daughter's school allowing her a special room managed by the most wonderful, kind and caring teacher that is always helping her get through the tough days. This teacher is amazing and we will be eternally grateful for all she has done to help our daughter, we have been very lucky to have had so much help.
The MRI scan appointment came through for early January and we encouraged Skye not to stress about it and enjoy Christmas. Skye loves Christmas and she helped me prepare by putting up the tree, decorating, cooking, wrapping up presents, this helped to take her mind off things. Little Zac, Skye's brother who was 5 at the time managed to take all our minds off things by his excitement for Christmas and his innocent acts of childhood cuteness. We had a lovely Christmas and Skye managed to have some chocolate and her Christmas dinner without too many stomach pains.
January was here and Skye was extremely anxious worrying about her MRI scan and the outcome. The reason why Skye had to have an MRI scan was because the professor hadn't been able to get a full picture of the affected area due to inflammation.
An MRI scan is a magnetic resonance image and is a noninvasive test that uses radio waves and magnets to create images of the inside of the body. The radio waves and magnets create cross-sectional images of the abdomen. These images allow doctors to check for abnormalities in the tissues and organs without making an incision. An MRI scan is considered a safer alternative to a CT scan as it uses no radiation and doctors can examine soft tissues without bones obstructing the view.
During the evening before the MRI scan, Skye was required to take some laxatives. Feeling anxious that she would be sat on the toilet most of the night due to her previous experience with her endoscopy, I assured Skye that it wouldn't be as intense as it was a lower dose of laxative. Things were not as bad as her previous experience and she managed to get some sleep.
The morning arrived, Skye had wanted her dad to go with her for the MRI scan as she knew he had wanted too. I gave her a massive hug and off they went, so without any food and just water due to the fact that she had to fast for six hours before the exam, they made their way to the hospital. They arrived at the waiting room and in order to prepare Skye's stomach she had to drink 1 litre of a preparation drink that made her feel very sick. When she had drunk half of the liquid she was taken to another room to have a cannula fitted into her right arm. Skye's anxiety kicked in and made her panic, she thought that the nurse had put the cannula in wrong because she started whispering to the doctor who was also in the room. My husband informed me that the nurse was checking with the doctor that she had done it correctly. I don't think they should have been whispering during this procedure, it was very unprofessional, especially as they knew she suffered anxiety.
After that episode our daughter was sent back to the waiting room to finish her drink, feeling very upset and scared she tried to finish her drink. Her anxiety was building up and this made it very hard for her to drink the solution within the hour and no sooner had she finished it, unfortunately, she vomited half of the solution back up again. Poor Skye then had to put on a hospital gown as she had been sick all over her clothes and we hadn't any taken any spare clothes. Feeling very anxious that she wouldn't be able to have the scan because she had vomited a lot of the preparation liquid up the nurses assured her that the scan could still be performed if she could drink a litre of water. Poor Skye felt empty and cold in her gown, having to drink a litre of cold water wasn't very easy.
They made their way to the MRI scan room with two other nurses, Skye held tightly onto her dad's hand. She then had two lovely nurses help put the special dye,(gadolinium) into the cannula (the dye highlights the areas of concern), Skye was brave and said it didn't hurt.
Skye's words of her experience, " The MRI machine looked like a time machine, I had to lie on a bench that slowly moved me forward into a large tunnel that was attached to an opening that looked like a doughnut. The technician was so lovely and helped me relax, she asked me to lie on my back on the bench and gave me a blanket and a pillow that she used to put under my feet to level me out so I would feel comfortable and be able to stay still. The technician controlled the movement of the bench using a remote control from another room and communicated with me over a microphone. The machine made loud whirring and thumping noises and I wore headphones to help block out some of the noise. I had to stay completely still and hold my breath for a few seconds as the pictures were being taken. I didn't feel anything during the test. The magnets and radio frequencies are similar to those on FM radios, and can’t be felt. I had to stay inside for 45 minutes, it was hard to stay still for all that time and I was glad when it was over"
We got the results of her MRI scan a couple of weeks later. The results showed a single 7cm segment of the terminal ileum which is thick walled, consistent with the findings at endoscopy. She had no other segments identified in the small bowel and colon, which is probably the best result we could have wished for in the circumstances. There was no evidence of stricture or abnormal motility. After the MRI scan, Skye seemed a lot better and could eat certain foods without too much discomfort. We kept a food diary so we could make a note of what foods caused more pains. At this time Skye was taking 500mg of Pentasa tablets daily.
Skyes next appointment was on 21st March 2016 where she was reviewed and weighed. Her height was 149.7cm and she weighed 33.4kg which was a loss of 700g since she finished her Modulen back in December 2015. The professor was concerned and advised us that if she drops more than another 2 or 3 pounds that we would need to bring her back. He also suggested increasing her dose of Pentasa to 1g twice daily and he wanted her to go on Entocort (Budesonide is a synthetic steroid that has an anti-inflammatory effect. It is used to reduce inflammation associated with the inflammatory bowel disease, Crohn's disease). The Entocort (Budesonide) dosage was 9 mg once daily for three weeks, followed by 6 mg for three weeks and then 3 mg for three weeks. Whilst taking the Entocort she needed to have regular blood tests to check that her blood sugar levels stay healthy. Like all medicines this had hundreds of warnings and side effects, we tried to block these thoughts from our minds and trust that the professor knew what he was doing.
Whilst taking the Entocort luckily she had no side effects and for the first three weeks of taking her tablets things were great, she gained some weight and seemed so happy. The tablets allowed her to be able to eat most foods without any stomach pains and Skye enjoyed food again. We had a lovely summer holiday and had lots of great family days out with our daughter looking so much healthier. Unfortunately though as she lowered the dose and during her last week on the Entocort, all of her symptoms came back and certain foods had to be avoided again.
Poor Skye started to stress and worry which made her symptoms worse and she struggled to eat. With her weight lowering rapidly she became very tired and looked extremely undernourished again. After a conversation with the professor, he advised that Skye should go back on the Modulen. Skye had a bit of a breakdown and she refused to do this, sobbing and saying she couldn't do it all again. We rang the professor and explained that she was refusing to have the Modulen, he managed to calm Skye down. He advised her to have it for two days with no food and only water, and then to try some food again, this would allow her stomach flare up, time to calm down. It was heartbreaking to see our little girl so upset.
This time was a very low time for us all, Skye started to isolate herself from her friends and became very depressed saying that she just wanted to be normal like everybody else. Her pains and tiredness due to disturbed sleep and lack of iron were not helping and she was so unhappy again. We felt useless and worked hard to keep her spirits up with days out and planning things for her to look forward to and take her mind off things. Unfortunately, our days out were not good as she struggled to join in because of her pains and although she tried for us and her little brother, she was too ill and just wanted to get home to her bed. We kept ringing the hospital to arrange for her to see the professor but due to the fact he is semi-retired and was also on holiday for a week, we had no luck. I took her to my doctors twice and they would not help us and said that we needed to see the professor. We finally got an appointment for the professor on the 10th October 2016.
We had to get Skye's blood tested prior to her appointment with the professor. During the appointment, the professor confirmed Skye's blood results. Her results in the professor's words; "Skye's recent blood tests are consistent with relapsed disease. Haemoglobin is reduced to 95 g/L with a low MCV of 70.4 and with a serum iron of 4 umol/L and ferritin 27ug/L. Her platelets are increased at 440, her ESR 18mm/hour and her CRP at 30mg/L. her albumin is normal at 40g/L." He prescribed iron tablets and more Entocort and said he was now referring her to Birmingham Children's hospital so she could get better care. We then had to go home and start the Entocort and iron tablets and wait for our appointment at Birmingham. We were sure that the tablets would help Skye again and came away positive. However, this was not the case!
Skye had been taking the Entocort as directed for over a week with no improvements. The iron tablets were making her stomach hurt so badly that she would vomit every evening. I went to visit our local doctor with Skye and he prescribed a different iron tablet and advised us to only give her one daily instead of two. He had thought that the dose of iron was just too strong for our tiny daughter and that's why she had been sick whilst taking it. He couldn't offer us any other help but assured us that once Birmingham Children's hospital takes over her care, all would be well.
To make matters worse whilst our daughter was at school she picked up a stomach bug and this made her Crohns Disease flare up and she became seriously ill, even her tablets and the Modulen wouldn't stay down due to vomiting. She couldn't afford to loose any more weight! We rang the hospital and they advised us to take her straight to Accidents and Emergency. When we saw the triage nurse I had to explain what had been going on and soon as she weighed Skye she was admitted straight into the hospital where we had to wait in a waiting area for someone to take us up to the ward. Whilst waiting she had to have some blood tests and a cannula fitted, the nurse who fitted the cannula was very rough with my daughter and it hurt, when the nurse left the room, Skye sobbed. I wanted to cry my heart out but had to keep strong, she looked so scared and upset. I held her close and reassured her that everything was going to be alright and that she was strong and we could get through it together. I told her not to worry about the hospital that I would stay with her.
We had to wait an hour before a nurse came and took us up to the ward. This year, however, being thirteen we were taken to the adolescent ward rather than the children's ward that Skye had been on last year. There were two other girls in the room when we arrived, one was being discharged and another girl was asleep in her bed. I had been prepared this time and had packed her pyjamas and plenty of other things for her stay. As we were right in the corner by the window I was able to get a very small amount of mobile connection so I contacted my husband Skye's dad to let him know what was going on.
What was going on? the nurses were waiting for all of Skyes notes to be sent to the ward and had tried contacting the professor but as I had already told them he was on holiday until Monday. Once the notes arrived the nurse performed her observations. Skye had been sipping water and hadn't been sick since the morning so the nurses didn't need to give her any IV fluids for dehydration, they had put the cannula in just in case. The cannula was hurting Skye's arm, it looked very bruised and swollen, this was really upsetting Skye. I helped Skye change into her pyjamas as the cannula was making it hard to bend her right arm. Once in her pyjamas, she got into bed and she closed her eyes for an hour and rested. I sat stroking her forehead and had a little cry to myself. I don't like crying in front of other people and the worry for my daughter had made me so emotional, I had kept it in all day!
Skye stayed in the hospital for five days, the nurses were all so lovely and supportive and Skye made a lovely friend during her stay. I cannot bring myself to write about our five days in the hospital, all I can say is the nurses saw how physically and mentally ill our daughter is and this has made the hospital and professor push for a speedy appointment at Birmingham Children's hospital, that we have this Friday 25th November.
Skye is currently on stronger steroids and after a very rocky first week on the tablets with them making her very depressed, restless and sick, they have been working and she has been able to eat and live a normal life again. Unfortunately, she can only be on these for 6 weeks and we are near to the end of these.
We are taking every day as it comes, our daughter has had to grow up far too fast. She is coping really well at the moment and is eating so well. We have been going out for meals and making the most of her being able to eat most foods. Due to the fact she was absent from school for two weeks, she has been working hard to catch up with all of her work by staying after school. I'm so proud of her and so are all the teachers, but we have told her that her health is more important and not to overdo it!
I want to thank Zoe Elizabeth Sugg who is an English fashion and beauty vlogger, YouTuber, and author. She is best known by her YouTube username Zoella. Thank you for sharing your anxiety issues with the world, because of this my daughter hasn't felt alone and understood what anxiety was. Your videos and books have cheered my daughter up so much and you have even inspired her to write her own blog, which she posted last week. Writing has helped me get through the last few months and I feel it will help my daughter too!
Thank you all for taking your time to read our story I will keep you all posted when I have more to tell. I hope our experience has helped other Crohn's sufferers feel like they are not alone in the world of suffering.