Matthew is my son who is now 12 years old. He was diagnosed with crohn's just over a week ago after a colonoscopy and endoscopy. He has ulcers in his oesophagus, stomach, ileum, and colon with fistulas near the anus.
Matt originally became I'll in January when he woke up one morning with a sore ankle. During the day this spread to his other ankle then his hips and became so severe by the next morning that he could not support his own weight so could not stand on walk. He also could not bear the skin on his thighs to be touched at all as it caused him absolute agony. He also had abdominal pain, but at this stage experienced constipation. He was admitted to hospital and spent a month there coming out in a wheelchair.
During his hospital stay they did all sorts of tests: blood tests, ultrasound, ct scan, nuclear scan, bone marrow, lumbar puncture etc but were unable to discover what was wrong. At times it was suggested he was not really as bad as he made out, it was all in his head, he must be having problems at school and that perhaps a hot bath would help him. :mad2:
After being discharged from hospital he used a wheelchair and then as the pain decreased he moved on to using crutches. I should add that by this stage he was not on any medication as nothing helped, including a five day trial of steroids.
As his joint pain slowly eased his abdominal pain increased and he started to experience loose stools, blood and diarrhoea. He started having to go to the toilet 5 or 6 times a day. We were having regular reviews with his consultant but nothing was being diagnosed despite his CRP and ESR levels continuing to fluctuate as they had from his initial admission to hospital, and him showing signs of anaemia.
By this stage I had, like any other mum, being frantically researching his symptoms on the net. I emailed his consultant asking if we could consider crohn's as a possibility and asking for tests. His co sultanate said that as he did not have mouth ulcers he didn't fit the profile. I kept asking for the tests and after a few more visits he agreed to send him for a small bowel series of barium stays because he was losing weight, very pale and "looked sick". ( ya think??!!). The small bowel series showed nothing but I had heard them saying it wasn't moving through as quickly as they would like. So again I pushed for a referral, and this time he agreed to "rule it out".
We saw the paediatric GI who immediately said he wanted to do an endoscopy and colonoscopy "due to his typical symptoms"!. This was done within a few weeks. On the day of the colonoscopy the GI consultant admitted him to hospital to start immediate treatment because of what he found, and confirmed it was crohn's.
Matthew started on a modulen liquid diet the following day which he has to follow for 8 weeks. We are a week into it and he is tolerating it well.
I am all over the place. One minute I think ok, we now know what it is, and it can be controlled and treated. Then I scare myself silly by reading stories of others in the net and think life as we knew it is over! I am worried about him returning to school in two weeks whilst still on the diet. When he returned to school on crutches he was given a card to allow him to leave class five minutes early to avoid being bumped in the corridor. He started to manage without the crutches , which he hated, as other kids teased him and on one occasion tried to pull them from under him. Then however although we explained he was still in pain and could only move slowly some teachers wouldn't let him out early even though his form teacher said he should still use the card. I am concerned that he will not be allowed to,leave to use the toilet no matter what we say or they agree to. I will be telling him that if a teacher says no, he should go anyway and we will sort it out later.
I am scared for his future, I am worried for what this disease will do to him over time and I am grieving for the life I feel he has lost. Sorry if that sounds dramatic but it is how I feel.
Matt originally became I'll in January when he woke up one morning with a sore ankle. During the day this spread to his other ankle then his hips and became so severe by the next morning that he could not support his own weight so could not stand on walk. He also could not bear the skin on his thighs to be touched at all as it caused him absolute agony. He also had abdominal pain, but at this stage experienced constipation. He was admitted to hospital and spent a month there coming out in a wheelchair.
During his hospital stay they did all sorts of tests: blood tests, ultrasound, ct scan, nuclear scan, bone marrow, lumbar puncture etc but were unable to discover what was wrong. At times it was suggested he was not really as bad as he made out, it was all in his head, he must be having problems at school and that perhaps a hot bath would help him. :mad2:
After being discharged from hospital he used a wheelchair and then as the pain decreased he moved on to using crutches. I should add that by this stage he was not on any medication as nothing helped, including a five day trial of steroids.
As his joint pain slowly eased his abdominal pain increased and he started to experience loose stools, blood and diarrhoea. He started having to go to the toilet 5 or 6 times a day. We were having regular reviews with his consultant but nothing was being diagnosed despite his CRP and ESR levels continuing to fluctuate as they had from his initial admission to hospital, and him showing signs of anaemia.
By this stage I had, like any other mum, being frantically researching his symptoms on the net. I emailed his consultant asking if we could consider crohn's as a possibility and asking for tests. His co sultanate said that as he did not have mouth ulcers he didn't fit the profile. I kept asking for the tests and after a few more visits he agreed to send him for a small bowel series of barium stays because he was losing weight, very pale and "looked sick". ( ya think??!!). The small bowel series showed nothing but I had heard them saying it wasn't moving through as quickly as they would like. So again I pushed for a referral, and this time he agreed to "rule it out".
We saw the paediatric GI who immediately said he wanted to do an endoscopy and colonoscopy "due to his typical symptoms"!. This was done within a few weeks. On the day of the colonoscopy the GI consultant admitted him to hospital to start immediate treatment because of what he found, and confirmed it was crohn's.
Matthew started on a modulen liquid diet the following day which he has to follow for 8 weeks. We are a week into it and he is tolerating it well.
I am all over the place. One minute I think ok, we now know what it is, and it can be controlled and treated. Then I scare myself silly by reading stories of others in the net and think life as we knew it is over! I am worried about him returning to school in two weeks whilst still on the diet. When he returned to school on crutches he was given a card to allow him to leave class five minutes early to avoid being bumped in the corridor. He started to manage without the crutches , which he hated, as other kids teased him and on one occasion tried to pull them from under him. Then however although we explained he was still in pain and could only move slowly some teachers wouldn't let him out early even though his form teacher said he should still use the card. I am concerned that he will not be allowed to,leave to use the toilet no matter what we say or they agree to. I will be telling him that if a teacher says no, he should go anyway and we will sort it out later.
I am scared for his future, I am worried for what this disease will do to him over time and I am grieving for the life I feel he has lost. Sorry if that sounds dramatic but it is how I feel.
. Good luck and glad you found us!
