Crohn’s Disease is a physical condition that causes the digestive system or stomach to become reddened, swollen, hot and often very painful. Crohn’s can affect any part of the stomach, though the most common area affected is the end of the ileum (the last part of the small intestine), or the colon.
The areas of the stomach affected are often patchy with some parts of the stomach being normal in between. Some of the affected areas may be small, only a few centimetres, or extend quite a distance along part of the stomach. As well as affecting the lining of the bowel, Crohn’s may also extend further down into the bowel wall. It’s one of the two main forms of Inflammatory Bowel Disease (IBD). The other is Ulcerative Colitis.
Crohn’s is a chronic condition persisting for a long time or constantly recurring. When suffering you may have periods of good health (remission), as well as times when symptoms are more active (relapses or flare-ups).
Crohn’s disease varies from person to person and may depend on where in the stomach the disease is active.
The symptoms range from mild to severe and can change over time.
Here are 7 of the most common symptoms:-
Abdominal pain- can be very severe and often occur when passing stools.
Tiredness and fatigue- due to the illness itself, from anaemia, lack of sleep, and side effects of the drugs that are used to treat Crohn's Disease.
Feeling generally unwell or feverish.
Loss of appetite and weight loss- due to the body not absorbing nutrients from the food you eat when the stomach is inflamed.
Anaemia (a reduced level of red blood cells).Is more likely that anaemia occurs with blood loss or lack of food.
Diarrhoea-this is sometimes mixed with blood, mucus and pus.
Some people with IBD (Inflammatory Bowel Disease) especially Crohn’s, may develop difficulties, including:
Strictures. This is when there is ongoing inflammation and then healing in the bowel which may cause scar tissue to form. This can create a narrow section of the bowel, called a stricture.
Fistulas- abnormal channel or passageway connecting one internal organ to another, Fistulas can also connect to the outside surface of the body and are more common in people with Crohn’s Disease.
IBD can sometimes affect other parts of the body, including:
Eye inflammation. The most common eye condition affecting people with IBD is episcleritis, which affects the layer of tissue covering the sclera, the white outer coating of the eye, making it red, sore and inflamed.
Joints. Inflammation of the joints, often known as arthritis, means that fluid collects in the joint space causing painful swelling. It usually affects the large joints of the arms and legs, including the elbows, wrists, knees and ankles.
My daughter was first diagnosed with Crohn's Disease last October 2015 I knew nothing about Crohn's disease when she was diagnosed and we are still learning new things to this day.
Here is our story:-
Skye started to show signs of anxiety during her final year 6 at junior school whilst preparing for her Sats (year 6 exams). Her symptoms were a loss of appetite, hair loss, sleepwalking, depression, weight loss and panic attacks. Skye's symptoms got so severe that we decided to homeschool Skye and try to eliminate the worry that school Sats were putting on our daughter. For the first 5 months of homeschooling Skye's health improved and she managed to gain some weight and seemed to be improving. Skye worked really hard at home with her work and was a perfect student to teach.
After 8 months of homeschooling, Skye's old friends stopped contacting her as they had made new friends at senior school (high school) and were living their own new busy lives. I tried very hard to join homeschooling groups so Skye could make new friends that shared interests, but the groups were very small and there was no one Skye's age that lived locally that she could enjoy social time with.
This made Skye very depressed and all her symptoms started to come back. Skye decided that she wanted to go back to school and of course, we supported this and started to apply for schools and went on visits. We chose a local school that Skye visited, all the teachers were so lovely and offered so much support and made Skye feel very relaxed about starting school again.
Skye started half way into year 7 and the teachers were fab, and still are to this day, Skye began to pick up, had new friends and for a couple of months, things were normal. Then it all began again, all the above symptoms came back. We got Skye a counsellor for her anxiety and we had regular visits to our doctor trying to find ways of helping. We were eventually referred to a specialist and waited for her appointment which took 3 months. In this time Skye became so ill and lost a worrying amount of weight, became anaemic, had blood in her stools and opened her bowels at least 3 times a day. It was so horrifying we tried everything to help and feared the worse.
When Skye's appointment finally came through and during the visit we were very lucky that the specialist that we were meeting happened to be a Professor who specialises in Crohn's Disease. He took one look at Skye and said that he was almost certain that she had Crohn's Disease and admitted her straight into hospital and all the tests began. We were shocked and knew nothing of Crohn's disease but were relieved that our daughter was finally being treated and he assured us he would get her well again. The professor was very worried about Skye's nutritional status and decided it would be best to commence enteral nutrition therapy using Modulen IBD ( a powder protein formula and nutrition supplement for the dietary management of Crohn's disease). This was started slowly to reduce the chance of refeeding syndrome (Refeeding syndrome is a syndrome consisting of metabolic disturbances that occur as a result of reinstitution of nutrition to patients who are starved, severely malnourished or metabolically stressed due to severe illness.
The Modulen IBD and water were all our daughter could have for the next 6 weeks, she drank 250mls of this 6 times a day for 6 weeks. She was so tough and brave and managed to drink this awful tasting medicine by herself as her only other alternative was a nasogastric tube which is a narrow bore tube passed into the stomach via the nose. She really didn't want to have this tube in for 6 weeks so she soldiered through holding her nose to try and eliminate the awful taste and texture of the formula. She hated all the flavours that you could add to try and eliminate the taste and we found that powdered chocolate flavoured Nesquick that you add to milkshake was the only one she could stomach.
During her, 4-day stay in hospital Skye had lots of blood tests and also had an abdominal ultrasound scan. The blood test confirmed iron deficiency, raised inflammatory markers and poor nutritional state. Her abdominal ultrasound confirmed bowel wall thickening of the caecum(a pouch connected to the junction of the small and large intestines) and terminalIleum (distal end of the small intestine that intersects with the large intestine). These results strongly suggested ileocaecal Crohn's Disease (lower end of the small intestine).
Skye's health improved whilst on Modulen IBD although she hated taking it and missed food so much. We struggled as a family and didn't want to eat in front of her as we felt so bad. My husband and I also started reading about Crohn's Disease and although we didn't let on to her we feared for her and became very depressed and scared. Times were dark but we kept our spirits up and our little boy Zac (Skye's younger brother) who is such a funny, happy little chap helped brighten up the dark days.
The next stage was for Skye to have an upper and lower endoscopy. We waited for her appointment to come through for her Endoscopy (a nonsurgical procedure used to examine a person's digestive tract, using an endoscope, a flexible tube with a light and camera attached to it allowing a doctor to view pictures of your digestive tract on a colour TV monitor).
The appointment came through quite quickly which was good (this was performed last December 2015). Skye was very nervous about it and decided that she wanted to be put to sleep for the procedure. The morning before the procedure Skye could just have clear fluids to ensure her stomach was empty and had to take laxative tablets at 2pm. At 4pm she also had to drink 8oz of this awful tasting stuff which made her wretch and took ages to get down. About an hour after the drink Skye got severe stomach cramps this made her have severe diarrhoea and vomit nearly all night. We nearly phoned for an ambulance as we panicked because no one had warned us that it would make her so sick and we thought something was wrong. It was awful seeing her in so much pain we weren't expecting it to make her so sick.
Feeling exhausted from hardly any sleep we made our way to the hospital early for Skye to have her procedure. We arrived on time and went up to the ward. The nurses were all so lovely and helped Skye to relax and talked us through the procedure. The professor also came to chat to us as he was performing the endoscopy and as she was 12 he had to tell Skye about the risks and explained what was going to happen. This made Skye very scared and anxious and she had a good cry. I put on a brave face and tried to take her mind off it while we were waiting but I was scared too.
The nurse came and put a cannula in Skye's hand preparing her for the medicine that would send her to sleep. She had been really worried about this hurting but she was very brave and it didn't hurt at all. We were fourth to go down to the operating theatre out of 8 other children. I was able to go with her to the anaesthetic room and hold her hand while she was put to sleep. This was an awful experience for me Skye looked so scared and to see her fall into a deep sleep so quickly totally freaked me out. When she was stabilised and asleep I had to leave and make my way back to the ward.
A nurse escorted me back to the ward where I was told to wait and that the procedure would take about 30 minutes. I must have looked so rude to the nurse, I wanted to cry and could not speak, I just nodded asking no questions. Sitting in silence I waited and prayed that the procedure would all go to plan and for my daughter's safety. I sat there hoping that the professor was wrong and that she did not have Crohn's Disease but then also worried because if it wasn't Crohn's that what else could it possibly be? It seemed like forever and took over an hour before she was wheeled back on a hospital bed.
The two nurses lifted her and put her on the bed next to me on the ward and she woke startled. I leant forward and kissed her forehead and gently cuddled her. She was very drowsy and confused and mumbled words that I couldn't understand. I hugged her, spoke softly to her telling her she had been so brave and that it was all over. She slowly opened her eyes and smiled then closed her eyes again and I sat and waited for her to wake up and come around holding her hand and staring at her sweet angelic face, so glad that she was next to me. After about 15 minutes she came round and the nurses prompted her to have a drink of water. She took sips and complained that her throat was sore and the nurses assured us that it was from the effects of the anaesthetic and it would soon wear off.
The professor came to see us shortly and in his hands had two x-ray pictures of Skye's internal organs. Whilst pointing to different parts of Skye's internal x-ray pictures he explained that the caecum showed distortion and some structuring of the ileocaecal valve, with clear inflammation visible in the terminal ileum. He also explained that the biopsy of the terminal ileum through the narrowed valve showed histological changes of granulation tissue and evidence of ulceration. Of course all he was saying didn't really make any sense to myself and my daughter and then he confirmed that the diagnosis of the endoscopy was Crohn's Disease. We sat in silence!
The shock was awful and my daughter sobbed and so did I. We pulled ourselves together and tried to focus on what he was saying next, it was all a bit of a blur to me. I just remember that he said he would write to us with the results explaining everything he had just told me and that an appointment would come through for an MRI scan. The professor also explained that as she had been on Modulen for 6 weeks that we could now slowly introduce food along with the Modulen. We were advised to start with little and often with small portions of potatoes and vegetables and to avoid any acidic or sugary foods. He also prescribed Pentasa granules 500mg twice a day. We then waited for the medicine and after a few tests, blood pressure and temperature Skye was able to come home.
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.
Next week I will post part 2 of our story!
Thank you for reading, It's been a tough few weeks and I felt the need to finally talk about it all!
Please feel free to comment below.