DustyKat
Super Moderator
Hope you guys don’t mind if I hang out here. I don’t have Crohns but my daughter does. Roo is now 18 and was diagnosed with CD when she was 14 in 2006.
When she saw the gastroenterologist after her diagnosis he said it had most likely been present for 2 years due to the appearance of the clubbing of her fingers. Looking back I can certainly remember her being sick for at least 18 months. Initially, perhaps for even 12 months, her symptoms were occasional but in the last 6 months of that time they became very frequent and eventually at least weekly. Her symptoms most the time were upper epigastric pain associated with vomiting and mostly, but not always, a headache, oh and sore knees and eyes, they eventually diagnosed Abdominal Migraine and it goes without saying that the treatment for that didn’t work!
Things finally came to a head at the end of June ’06 following a fall at school. A couple of days after the fall Roo started to complain of pain around her right kidney region. It escalated 4 days later to the point that she was in tears so we went to the GP. He thought she may have damaged her kidney in the fall and she went for a renal ultrasound, which she found almost unbearable due to the pain it caused. The results came back with a query of a congenital kidney problem and so we then went off for a nuclear scan, which returned a normal result. Later that evening the pain changed to a generalised abdominal pain and through the night became so bad that the GP had to come and give her a shot of Morphine and we went off to the hospital. They continued to relate the pain back to the fall and so decided to do pancreatic enzymes and bingo; they were through the roof, so they diagnosed Pancreatitis and admitted Roo. That all fell apart the next day when her next lot of bloods came back normal. Things seemed to settle with NBM and IV Morphine and she went for an abdo CT scan, this also returned a normal result and Roo was discharged. Within 24 hours the pain started up again and over the next 5 days became increasingly worse and then vomiting and fever set in so back to the hospital.
The day before Roo went back to hospital a distant relative rang and told me her Crohns story. Well, I naturally went into Google mode and symptoms started to fall into place. The morning after admission the paediatrician came by and I told him about Roo’s relative but he ruled that one out on the spot. Thank god I was armed with enough information to insist that there was no way she was leaving unless they could prove to me she didn’t have Crohns. The paediatrician and the surgeon decided on further tests, scans etc, I had no issue with the conservative approach but I knew something was seriously wrong, so basically told them I was sick to death of doctors dancing around the edges. I don’t know, I just felt that they needed to actually see her bowel. As it was, when the bloods came back that were taken in emergency Roo was septic. She went straight to theatre for a laparotomy and appendectomy and came out with a right hemicolectomy, ended up with 59cm of bowel being removed. Her bowel was perforated and infarcted and in the surgeons words it was – “a mess with pus everywhere”. It breaks my heart to think of the pain she must have been in and the tolerance she must have built up.
It took her about 6 months to recover from the hospital admissions and chronic illness. When she was discharged, although not tall, she only weighed 34 kilos.
Roo eventually went through puberty about 6 months post op at 15. She has had short bowel syndrome ever since. Tried Questran but found it too unpalatable, also tried Metamucil but that caused too much painful cramping so she plans her eating around her day. Due to her moving she has had to change specialists and the new guy is trying her on Imodium, not sure how that is going.
Last year, her last year of school, was hard and I think she went off the rails quite a bit, non compliant with meds etc. It is a very fine line between saying something or nothing. Although she had a great bunch of teachers and I had spoken to them frequently, in an informal manner, about her issues, they still didn’t get it. I ended up arranging a meeting with all her teachers and the executive staff. I prepared a *report* outlining her history and her current issues and the impact it has on her day to day functioning. It took this for them to finally realise what Roo was dealing with and will continue to deal with throughout her life.
Fast forward to now and Roo has finished high school and moved away to university at the beginning of this year. I was worried about her moving so far away and was concerned about her taking responsibility for her health. I am so relieved to say that I haven’t seen her so happy, confident and in control in a long time and she is thriving on university life. I can only hope that she can get through her undergraduate studies without a flare up. Roo has been in remission since the surgery and her meds since that time have been Imuran 50mg daily, Folic Acid 3 times a week and B12 3 monthly.
If you have read this far thanks for listening!
When she saw the gastroenterologist after her diagnosis he said it had most likely been present for 2 years due to the appearance of the clubbing of her fingers. Looking back I can certainly remember her being sick for at least 18 months. Initially, perhaps for even 12 months, her symptoms were occasional but in the last 6 months of that time they became very frequent and eventually at least weekly. Her symptoms most the time were upper epigastric pain associated with vomiting and mostly, but not always, a headache, oh and sore knees and eyes, they eventually diagnosed Abdominal Migraine and it goes without saying that the treatment for that didn’t work!
Things finally came to a head at the end of June ’06 following a fall at school. A couple of days after the fall Roo started to complain of pain around her right kidney region. It escalated 4 days later to the point that she was in tears so we went to the GP. He thought she may have damaged her kidney in the fall and she went for a renal ultrasound, which she found almost unbearable due to the pain it caused. The results came back with a query of a congenital kidney problem and so we then went off for a nuclear scan, which returned a normal result. Later that evening the pain changed to a generalised abdominal pain and through the night became so bad that the GP had to come and give her a shot of Morphine and we went off to the hospital. They continued to relate the pain back to the fall and so decided to do pancreatic enzymes and bingo; they were through the roof, so they diagnosed Pancreatitis and admitted Roo. That all fell apart the next day when her next lot of bloods came back normal. Things seemed to settle with NBM and IV Morphine and she went for an abdo CT scan, this also returned a normal result and Roo was discharged. Within 24 hours the pain started up again and over the next 5 days became increasingly worse and then vomiting and fever set in so back to the hospital.
The day before Roo went back to hospital a distant relative rang and told me her Crohns story. Well, I naturally went into Google mode and symptoms started to fall into place. The morning after admission the paediatrician came by and I told him about Roo’s relative but he ruled that one out on the spot. Thank god I was armed with enough information to insist that there was no way she was leaving unless they could prove to me she didn’t have Crohns. The paediatrician and the surgeon decided on further tests, scans etc, I had no issue with the conservative approach but I knew something was seriously wrong, so basically told them I was sick to death of doctors dancing around the edges. I don’t know, I just felt that they needed to actually see her bowel. As it was, when the bloods came back that were taken in emergency Roo was septic. She went straight to theatre for a laparotomy and appendectomy and came out with a right hemicolectomy, ended up with 59cm of bowel being removed. Her bowel was perforated and infarcted and in the surgeons words it was – “a mess with pus everywhere”. It breaks my heart to think of the pain she must have been in and the tolerance she must have built up.
It took her about 6 months to recover from the hospital admissions and chronic illness. When she was discharged, although not tall, she only weighed 34 kilos.
Roo eventually went through puberty about 6 months post op at 15. She has had short bowel syndrome ever since. Tried Questran but found it too unpalatable, also tried Metamucil but that caused too much painful cramping so she plans her eating around her day. Due to her moving she has had to change specialists and the new guy is trying her on Imodium, not sure how that is going.
Last year, her last year of school, was hard and I think she went off the rails quite a bit, non compliant with meds etc. It is a very fine line between saying something or nothing. Although she had a great bunch of teachers and I had spoken to them frequently, in an informal manner, about her issues, they still didn’t get it. I ended up arranging a meeting with all her teachers and the executive staff. I prepared a *report* outlining her history and her current issues and the impact it has on her day to day functioning. It took this for them to finally realise what Roo was dealing with and will continue to deal with throughout her life.
Fast forward to now and Roo has finished high school and moved away to university at the beginning of this year. I was worried about her moving so far away and was concerned about her taking responsibility for her health. I am so relieved to say that I haven’t seen her so happy, confident and in control in a long time and she is thriving on university life. I can only hope that she can get through her undergraduate studies without a flare up. Roo has been in remission since the surgery and her meds since that time have been Imuran 50mg daily, Folic Acid 3 times a week and B12 3 monthly.
If you have read this far thanks for listening!
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