Josh

Josh's mum tells his story and highlights the importance of doctors recognising that individual symptoms may differ and are not always consistent for inflammatory bowel disease.

Josh never showed “typical” Crohn's symptoms which didn’t help with finding a diagnosis. It took us 2 1/2 years to finally get him diagnosed. Josh has never had blood in his stools or needed to get up in the night for the toilet. He was never severely underweight, though his weight did drop. None of this helped when trying to find a diagnosis.

Josh started symptoms when he was around 6 years old in 2007. His symptoms started as chronic constipation. He could go up to 10 days before opening his bowels and was in extreme pain due to this. He was prescribed Movical at very high doses to help with the constipation. He was also referred to a toilet training clinic to help him overcome this. When opening his bowels Josh would scream in pain.

Over time, the Movical was increased to even higher doses as his constipation got worse, he was doing okay with it, though he still struggled a lot to open his bowels, but he was starting to develop other symptoms as well. His mouth would start to crack and bleed. He was getting very bad night sweats, bad enough that I would have to change him and his bedding nightly. He also started major night terrors.

His mouth symptoms got worse, like massive cold sores around his face. At times his mouth was so sore he could barely open his mouth. Due to the sores he dribbled badly. His breathe was also foul!

By this time he was 7 years old and I was taking him back and forward to the doctors almost weekly. He was still on Movical and was given various creams and antibiotics for the sores on his face. At one point I was told it was due to him licking his lips too much which was causing the sores!!

I was asking constantly whether the constipation and the sores were related and completely dismissed, telling me there was no way this as the case. No one would listen properly to his symptoms. By this time we were at the GP almost weekly with the same symptoms each time.

Josh was getting very tired, his stomach was constantly sore. He was telling me his bottom hurt. No doctor would believe his symptoms. He was struggling massively. Eventually, watching my son go further downhill I insisted on a referral to the hospital. You could tell the doctor thought this a total waste of time and that I was an over anxious parent! He did make the referral, and I think he also put a derogatory comment to the consultant calling me a time waster.

Eventually in August 2009 when Josh was 8 1/2 we got a cancellation appointment through. I got a call from the hospital at 11 am telling me they had an appointment at 2 pm that same day. Could I get there?? I said yes straight away as we had waited so long for this. I had to get Josh out of school and rush there. As soon as we walked into the consulting room the consultant told us the GP didn't think there was anything wrong with Josh and just sent us to placate me, and he thought Josh had what is called "Glasgow" syndrome. This is a Scottish term for someone who drinks too much fizzy juice!! Josh even now doesn't drink any fizzy juice, and the GP never even asked about this, so I am not sure why this was ever put in the referral letter.

He examined him and found he had a fistula [hence the pain in his bottom]. Josh also had massive ulcers inside his cheeks on his face.

Josh was getting weaker and weaker by this point, no energy and constant stomach pains. He was fading before my eyes. Josh finally had scopes at the Sick Kids hospital in Edinburgh on 29 October 2009. This had taken me two and half years to get to this point.

Josh was diagnosed with crohns disease straight away. He was inflamed all through his digestive tract, his bowel was inflamed and there were ulcers everywhere and he had the fistula. He was put onto prednisilone straight away as well as liquid azathioprine and Pentasa.

The sores on his face were diagnosed as granuloma which is an indication of crohns disease which the GP should have at least made a connection with the constipation. Most of his constipation was caused by the fistula which made it incredibly hard for him to open his bowels.

Within 3 days of the steroids he was like a different child -- they had worked that quick!

So life for us became different, a new life now of hospital appointments. This became our new normal.

Though he had initial blood tests, they caused massive distress in him and he started to refuse to have any more. It got to the point that no one could hold him down or even get close to him with a needle. This was the start of 3 years of severe needle phobia!

Josh had a slight relapse of symptoms the following June so was put on the Modulen diet for 6 weeks. This was tough going as there is a huge volume to drink, but my brave boy got there with it with a bit of bribery of money at the end of the course! He made over £300 which was well deserved with the way he handled drinking the modulen. We even spent a week in Majorca with 12 cans of Modulen! We had a great time, and it was just what we needed after such a rough time, though I am sure Josh would have liked to eat while he was there, but he coped well with the modulen, and it did help to get his symptoms back under control.

Josh and myself moved to England about 8 months after his diagnoses which meant a move of hospitals. We now attend The Queens Medical Centre in Nottingham.

After a year of Josh refusing blood tests he was taken off the azathioprine as they said it was too dangerous for him to continue on it without checks. I was devastated, but again, we got no help with the medical profession for Josh to overcome his fear of needles. I felt very much on my own with trying to get him help. This phobia is a very real fear. Even just the thought of a needle would have him retreating into himself and have panic attacks. It was never a case of him just being naughty, which most people don't understand. I was given lots of advice on how I should handle him, hold him down, be firmer with him, bribe him, tell him he had no choice, tell him how ill he would become!! I think I was given all advice anyone could think off, but no one was with me when he had to go for bloods etc and saw just how very afraid he was.

I managed to get a CAHMS referral and we did a year of weekly counselling which was a waste of all our time. We saw hypnotherapists, doctors. Tried bribery, play therapists, Emla cream, anything and everything. Josh really wanted to go through with blood tests etc, but his fear held him back. The nurses that tried to take blood didn't help either as they told him he was too old to behave as he was and should just get on with it! Not helpful to anyone. It was such a hard time watching my son go through all this. There were times when I just wanted to run away with him.

The only way for 3 years they managed to get blood tests done was to scope him and take bloods while he was under. To get to this point was very difficult too, but they agreed to put him under with gas, and then insert the cannular.

By the time Josh was 12 and starting to go down hill. As he was no longer on azathiorprine his symptoms all started to come back big time. He was going to the toilet 20 + times a day. Again, even with a diagnosis, it took a very long time for anyone to believe his symptoms. We were back and forward to the hospital by this point as he was very ill. Because he refused blood tests it was difficult to for them to work out what was actually wrong, at one point I was asked as to whether he had an eating disorder!! He was going to the toilet over 20 times a day by this point. Their take on it was if he was so ill he would just accept and have the bloods taken. Even though this was paediatrics it was like they had never come across a needle phobic child before.

He was admitted to hospital a couple of times, but we didn't get anywhere as no one would really listen or help and they just monitored him. He was sent for an MRI scan, but he couldn’t go through with it as again it involved having a needle inserted part way through the test.

He was put onto a modulen diet again in December 2012, meaning he was on this all over Christmas and his birthday which is January. It was a very tough time, but it didn't make much difference to him. He was put onto steroids again in the January, but again kept losing weight. We were being dismissed again as being over anxious. Because of Josh's refusal for bloods to be done, no one wanted to help. I was told if he was as ill as I was making out then he would just agree to tests being done. Obviously they had never dealt with a severely phobic child before.

By this time we were assigned another CAMHS counsellor through the hospital, Carmen, who worked really well with Josh. By this time I had started writing down everything that Josh had gone through and how his needle phobia was affecting him [and me - I had been put off work with stress by this time due to the worry of it all].

Eventually I printed out photos over the previous 6 months to document Josh's weight loss, and I weighed him almost daily to show doctors the weight loss. I also wrote down everything he ate [ by this time he was being sick daily.] His intake was less than 200 calories a day. As soon as he ate he was sick and needed the toilet. He could barely move as he had no energy. He had lost 16 kg by this point.

I showed all this evidence to the doctors and he was again admitted to hospital where he was monitored. Again, because he refused tests involving needles, many doctors were dismissive of his symptoms. They all seemed to think if he was as ill as he was claiming, then he would agree to anything. I think they forgot they were dealing with a child. Carmen was fantastic and worked with Josh. She spent many hours with him. He was again taken for scopes, again using gas to put him under. When he came back he had a NG tube inserted to give him modulen through this to get his calories up. He had also had a pill cam inserted whilst he was under to monitor him. A very contrite doctor came to speak to me to say that they had found inflammation in his bowel again and that his small bowel was now also badly inflamed, which meant he now had crohns in his small and large bowel! Finally they believed the symptoms!!

Carmen continued working with Josh who was in hospital for 16 days. She emailed all medical staff dealing with him to tell them how to speak to him and they had to give him time and not be rushed. She also advised that he was given an anti anxiety medication to help him through everything. I wish someone had offered this before as it made such a difference. Josh finally allowed them to take blood under supervision with Carmen. Everything that was done had to be at Josh’s pace.

This was finally a turning point. Though he had to take the anxiety meds for a long time before any test was done, he would now agree to go through with them as long as everything was done as he wanted it to be done. It took us a long time still for him to be fairly relaxed around needles, but we got there. Really all it took was for someone to actually listen to Josh and not be dismissive of his fear. I think that doctors need to learn this especially with children.

Josh was put back onto Azathioprine and started to recover. By this time he was 14. Though a year later the aza on it’s own wasn’t enough to deal with his symptoms, he was put onto infliximab. This is something I would never have thought he would go on with his fear of needles. It wasn’t an easy choice. But as he wasn’t growing and hadn’t even started puberty, it was felt it was the right thing to do. Within a year of being on infliximab he had grown almost 10 inches and was well through puberty!

He flared again just as he was going into year 10 which made life difficult and spent time on steroids again. He had another flare up going into year 11 which resulted in him missing a lot of school, not ideal in GCSE year. He did pass his exams, though with lower grades than had been expected because he just couldn’t keep up with the work while he was off ill.

Josh is still under paediatrics and his consultant will keep him here until he finishes college next year. The transition to adult care will start later this year to get him used to it.

Josh has never let his crohns hold him back and we have had many holidays abroad with no problems. To him now, crohns is just part of his life. We have obviously had ups and downs with this disease over the years, but hopefully now he is on the right meds to keep him well for a long time.

Our journey in all this probably isn't typical and I hope other parents don't have the fight that we did to get a diagnoises and help when symptoms flare up. I feel that medical professionals should listen more to parents and be more pro active in getting symptoms diagnosed earlier, especially when they have a patient coming back with the same symptoms over a long period..

Keeping a diary has helped hugely as there is then a paper trail of all symptoms and treatments. Much easier to hand this over to a doctor than trying to remember back.

Another tip is to write down all medication your child is on and dosage. Every appointment Josh goes for he is asked what meds he is on. It is so much easier to hand over the list than have to spell out each medication.

It has helped since he was diagnosed to have support groups we could have contact with. We have been to a few of the CICRA family information days which are a great way of finding out more of this disease and to have expert speakers and to speak with other families.

We have also attended a few of the family network days with crohns and colitis UK. We have had their meet up days and been on some of the weekends away with families of children with IBD. This is a really good way of meeting other families of children going through the same thing, and also for the children themselves to realise that they aren’t the only one going through this. It has been good for me to also talk to other parents and to share our stories.