- Joined
- Sep 3, 2012
- Messages
- 104
Hey everyone, I haven't logged in for ages, but I still read here every day. Not because things are going great, but because I am either trying to keep my head in the sand (the last few months), or licking our wounds (the last few weeks). It is so hard to post and make things real, but I know you guys understand like others can't/won't and so here it all is...
As some of you may remember our 13 year old was diagnosed 3 years ago after 6 months of debilitating illness (severe dh, exhaustion, fevers, huge weight loss, pain, anaemia etc you know the drill!). He was put on 50 mg pred (at 34kg) and 50mg Imuran. Turns out he is "allergic" to pred and developed pred induced psychosis
it took a year to get over the effects as it 'clung' to his previous PTSD memories from a trauma several years earlier! Consequently the Psychiatrist said he can not be on pred unless hospitalised. We tapered and remained on Imuran but he never achieved clinical remission though his symptoms improved dramatically and he gained weight (44 kg).
Fast forward to last year and he developed a perianal abscess (after unbeknownst to me he was skipping Imuran tablets :ybatty, since our GI was overseas we were told to go to a GP to see what was going on, after two days he could barely walk and was in agony. You can read that story elsewhere, but suffice to say the GP diagnosed it as a thrombosed haemorrhoid and drained it on the spot our ds was traumatised to say the least and consequently we have not been back to that particular GP! Ds went on to develop a fistula (with four sinus tracts), large skin tags, and faecal incontinence. Ten months of antibiotics later (MRE's, ultrasounds etc) and they were sure the abscess was healed and so we needed to look at further therapy. He had gained considerable weight and was not having any dh or significant abdominal pain so we were hoping for some good news!
We chose to have an EUA and colonoscopy in the next few months before determining treatment (he had not had a scope done since diagnosis as his GI is very 'relaxed' about these things :confused2 but soon after our son developed a fissure and extreme, agonising pain for several hours after every bm and so we scheduled the scopes asap as we wanted to know exactly what was going on. He was struggling to get to school and we knew things were getting worse. Suffice to say the results were not great
His fecal cal was 1000, his sed rate 38. His hb 100 and dropping, his serum iron 2. His colonoscopy showed a large, hard, ulcerated mass in his rectum. The GI is sure this is causing his agonising pain, not just the fissures etc. The rest of his colon is mildly inflamed but not ulcerated, praise God! They were unable to find any fistula (most likely that the 'ulcerated mass' is covering the opening). He ordered another MRE to check small bowel and TI. They came back with circumferential thickening to 1cm for the TI, cecum, and a 30cm section of small bowel amongst other things his GI has applied to the government for Remicade approval. I think I am all cried out.
We got an emergency second opinion yesterday. This GI agreed that Remicade/Imuran combo was his best chance at things not progressing. He was shocked at his 'poor body condition' and says he needs to be on EN (he is 6ft tall - obviously his Crohn's has not affected his height and for that I am very thankful - but weighs just 50 kg and that is after gaining 4kg in the last two months!). He also said he needs iron infusions. (We are so frustrated that our previous GI ignored our pleas for infusions and concerns about his weight, he just keep telling us that they were symptoms, not the cause and so we needed to concentrate on getting his disease under control!) Suffice to say we are changing GI's, mind you we live in a place where our options are very limited and getting in to see someone difficult to say the least!
Anyway, if you have read all this, thanks - it feels good to get it out. At the moment I am all cried out, completely numb, all consumed with Crohn's, and just sad. I am worried about the safety profile of the combo, but also aware that he could lose his bowel if we don't get this under control soon. I am so thankful for our faith, it keeps our heads above water, but it still hurts some days to stay afloat. xxoo Ams
btw I have read all your posts and you wonderful, loving, parents encourage and inspire me everyday! I feel for you all and your precious ones and I pray they will all experience complete and long term remission soon!!! :kiss::hug::ghug:
As some of you may remember our 13 year old was diagnosed 3 years ago after 6 months of debilitating illness (severe dh, exhaustion, fevers, huge weight loss, pain, anaemia etc you know the drill!). He was put on 50 mg pred (at 34kg) and 50mg Imuran. Turns out he is "allergic" to pred and developed pred induced psychosis
it took a year to get over the effects as it 'clung' to his previous PTSD memories from a trauma several years earlier! Consequently the Psychiatrist said he can not be on pred unless hospitalised. We tapered and remained on Imuran but he never achieved clinical remission though his symptoms improved dramatically and he gained weight (44 kg). Fast forward to last year and he developed a perianal abscess (after unbeknownst to me he was skipping Imuran tablets :ybatty
, since our GI was overseas we were told to go to a GP to see what was going on, after two days he could barely walk and was in agony. You can read that story elsewhere, but suffice to say the GP diagnosed it as a thrombosed haemorrhoid and drained it on the spot our ds was traumatised to say the least and consequently we have not been back to that particular GP! Ds went on to develop a fistula (with four sinus tracts), large skin tags, and faecal incontinence. Ten months of antibiotics later (MRE's, ultrasounds etc) and they were sure the abscess was healed and so we needed to look at further therapy. He had gained considerable weight and was not having any dh or significant abdominal pain so we were hoping for some good news!We chose to have an EUA and colonoscopy in the next few months before determining treatment (he had not had a scope done since diagnosis as his GI is very 'relaxed' about these things :confused2
but soon after our son developed a fissure and extreme, agonising pain for several hours after every bm and so we scheduled the scopes asap as we wanted to know exactly what was going on. He was struggling to get to school and we knew things were getting worse. Suffice to say the results were not great His fecal cal was 1000, his sed rate 38. His hb 100 and dropping, his serum iron 2. His colonoscopy showed a large, hard, ulcerated mass in his rectum. The GI is sure this is causing his agonising pain, not just the fissures etc. The rest of his colon is mildly inflamed but not ulcerated, praise God! They were unable to find any fistula (most likely that the 'ulcerated mass' is covering the opening). He ordered another MRE to check small bowel and TI. They came back with circumferential thickening to 1cm for the TI, cecum, and a 30cm section of small bowel amongst other things
his GI has applied to the government for Remicade approval. I think I am all cried out.We got an emergency second opinion yesterday. This GI agreed that Remicade/Imuran combo was his best chance at things not progressing. He was shocked at his 'poor body condition' and says he needs to be on EN (he is 6ft tall - obviously his Crohn's has not affected his height and for that I am very thankful - but weighs just 50 kg and that is after gaining 4kg in the last two months!). He also said he needs iron infusions. (We are so frustrated that our previous GI ignored our pleas for infusions and concerns about his weight, he just keep telling us that they were symptoms, not the cause and so we needed to concentrate on getting his disease under control!) Suffice to say we are changing GI's, mind you we live in a place where our options are very limited and getting in to see someone difficult to say the least!
Anyway, if you have read all this, thanks - it feels good to get it out. At the moment I am all cried out, completely numb, all consumed with Crohn's, and just sad. I am worried about the safety profile of the combo, but also aware that he could lose his bowel if we don't get this under control soon. I am so thankful for our faith, it keeps our heads above water, but it still hurts some days to stay afloat. xxoo Ams
btw I have read all your posts and you wonderful, loving, parents encourage and inspire me everyday! I feel for you all and your precious ones and I pray they will all experience complete and long term remission soon!!! :kiss::hug::ghug:
