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Crohn's Disease Forum » Your Story » Crohns now more crohns


04-20-2014, 11:39 AM   #1
Ywiggan48
 
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Crohns now more crohns

Hi,
I am a newbie I have had Crohn's disease since 1983 no operations thank god, currently taking pentasa 2mg, B12 injections and vitamin D injections and scandishakes, hate them.

My 18 year old son was diagnosed last Thursday, I had to fight to get referred as GP believe it was an viral infection Jan 2014 took my son to GP 20 times keep asking please check for Crohns but she did nothing, until on 28th Jan 2014, I went to GP and threaten her with media coverage for neglect for my son, who also has cerebral palsy, she finally referred him and he was fast track, appointment came and saw a specialists in Feb 2014 and they tests started quickly, on Thursday las week he had MRI, colonoscopy, endoscopy, gastroscope
all in one way he was completely sedated for these, anywhere he woke up and vomited once it was quiet a lot, however I said this is due to all the meds you have given him, he told me that my son large intestine was inflamed and the crohns was acute, he then said that if the meds don't work he would need an operation ASAP and the chances of survival was 10% because he is so poorly and underweight. I was shocked surely the medication is there to control the inflammation even if it is acute, his 18 years old and basically has shown signs of the illness since January 2014 and only had diarrhoea and vomiting in January, since then he has been losing weight but no other symptoms.


I have had crohns for 33 years never had diarrhoea just major pains or some vomiting now and again.

Surely the operation is the last result but not the only result.

Please advice me asap
04-20-2014, 03:20 PM   #2
theOcean
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Did they put him on any medications for Crohn's? If not, we can offer advice based off of our own experiences.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-20-2014, 03:33 PM   #3
Ywiggan48
 
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Yes they admitted him to hospital on Thursday evening he is now having hydrocortisone which is being administer 4 times a day via injections plus an blood clotting injection into his stomach on Tuesday they will see if inflammation has reduce otherwise they are saying do surgery.
04-20-2014, 03:49 PM   #4
theOcean
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Good. I was going to suggest bringing him to the hospital if he wasn't there already.

Are they not treating him with solumedrol to bring down the inflammation? It's basically the IV version of prednisone, and I would think that would be much more effective.

Have they talked about treating him with other medication, like immunosuppressants or biologics? Or is it that they think he's too severely sick to wait that long? (Although the biologics would be much faster-acting, if effective.)
04-20-2014, 03:58 PM   #5
Ywiggan48
 
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I have been told the drug they are using is an strong steroid direct into the blood stream they seem to only use IV when his asleep at night on the ward, they have mention biologics as well but haven't discuss this any further as it's Easter bank holiday so on Tuesday I should get an update, the strange thing is my son has no diarrhoea or pain or vomiting just the weight loss surely he cannot be as severe as they are saying I really don't know on this one?

Very confused
04-20-2014, 04:05 PM   #6
theOcean
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Crohn's is a very individualized illness, so it's not unusual if his Crohn's has manifested in a different way from yours. There are other members on here who have encountered the same thing -- they didn't have diarrhea so they thought they were fine, but they actually had tons of inflammation internally.

I would definitely consider biologics. Maybe in the meantime what you can do is try and read up on them. They will most likely recommend either Remicade or Humira. I've been on both, and we also have sections of our forum for them that you can view, too. Feel free to ask any questions!
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