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Crohn's Disease Forum » Your Story » Looking after my son


08-05-2015, 01:15 PM   #1
dipsydeb
 
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Location: lowestoft, United Kingdom
Looking after my son

My son has just been diagnosed with crohns, what does the future hold for him
08-05-2015, 02:18 PM   #2
smt
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Sir/Madam,

I am sorry to hear that. However, there are effective treatments available. If you provide further details, knowledgeable members here would be able to help you.

Regards
08-05-2015, 03:08 PM   #3
InstantCoffee
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Depending on severity of his condition, many of us manage with a controlled diet and lifestyle, some of us with little to no medications. Some may rely on more powerful medications to keep their symptoms under control.

It's important that you work with his doctor to ensure his symptoms are controlled. Few with Crohn's will live a 100% normal life, but many can live in relative comfort.

Be optimistic, we're looking at very powerful potential treatments in the next decade.
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Dx 05
Past drugs: Remicade, Azathioprine, Prednizone, antacids, Humira
Current therapy: Diet and supplements.
I'm my own guinea pig.
My log with studies, journal of my experiments:
http://www.crohnsforum.com/showthread.php?t=72046
My Blog
https://beyondtheoddsfitness.wordpress.com/
08-06-2015, 05:51 AM   #4
dipsydeb
 
Join Date: Aug 2015
Location: lowestoft, United Kingdom
Thanks for your reply it was very helpful
08-06-2015, 05:57 AM   #5
Madhu
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Good luck to you and your son. Try not to get too depressed as the beginning is the hardest. We may not see it at that time but trust me, it gets better. We eventually learn to live with it. Hope you have a good GI who knows what they are doing. Did the GI put your son on any meds yet, and talk about a treatment plan?
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Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
08-06-2015, 07:47 AM   #6
dipsydeb
 
Join Date: Aug 2015
Location: lowestoft, United Kingdom
Thanks for your reply, he is starting immuno suppressants next week. He had a fistula which was infected, yesterday he had an operation to sort that.
08-06-2015, 10:14 AM   #7
CDJ
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Sorry to hear about the crohns diagnoses for your son. How old is he? I hope he is feeling okay after his operation. The diagnoses of IBD is a big learning curve. I hadn't even really heard of it or understood it before my sons diagnoses. But you will learn and it will get easier.
My son is now 14, he was diagnosed with crohns at 8 years old. My son is on azathioprine and Pentasa, and now having Infliximab infusions every 8 weeks.

On the whole my son's life is no different to any other child's, apart from the amount of meds he has to take and blood tests he has to go through. We have had ups and downs over the past 6 years, but he does really well.
Usually once you can get onto the right meds, life is so much better.

PM me if you want to chat, I am in the UK also. xx
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Son - -14
diagnosed 29/10/2009

Taken off azathioprine Jan 2011 due to needle phobia
carried on with just pentasa until March 2013

6 weeks Modulen Dec 12 / Jan 13

Finally overcame needle phobia after 3 very long years due to getting right help.

Currently on
125mg Azathioprine
3000mg Pentasa
20g Omeprazole
20mg Buscopan
5mg Prednisolone
Isoniazid
Pyridoxine
600mg ferrous gluconate
250mg zinc
Started Infliximab 18/03/15
08-06-2015, 10:21 AM   #8
CDJ
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Meant to say there is a really good UK Facebook forum page for parents of children with IBD. It's "parents of children with crohns and colitis" It's a really good group, friendly and helpful. It's worth taking a look.
08-06-2015, 12:30 PM   #9
dipsydeb
 
Join Date: Aug 2015
Location: lowestoft, United Kingdom
Thanks for your reply, my son is 21.he is feeling a lot better today after opp.i hope once treatment starts he will feel better, at the moment he finds work a struggle. I will check out the face book page.
08-06-2015, 04:01 PM   #10
Madhu
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Good to hear he's starting treatment soon. Remicade/Humira? My husband also has 2 setons for fistulas. Both started healing almost immediately after starting Remicade. I wish your son well.
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