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Old 11 Jan 21, 11:28 PM  
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Originally Posted by soooexcited! View Post
Good on you Mason you little star. Fingers crossed he responds well to the azathioprine. My daughter had her check colonoscopy last week as part of the research trial she joined to help other other young people with IBD. Post hemi colectomy March 2020. Her colonoscopy was all normal. If you had told us that this time last year we would never have believed it was possible how ill she was. Stay safe and keep us updated he will get there x
So its all normal after 12 months! Thats amazing, you must be so happy. This certainly gives me hope x x
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Old 11 Jan 21, 11:39 PM  
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Originally Posted by Floridatilly View Post
So its all normal after 12 months! Thats amazing, you must be so happy. This certainly gives me hope x x
She had a section of bowel removed but everything remaining is normal. Her calprotectin was over 3000 and that's also now normal. Its the best news she could have had. It was lovely to see her get involved with food over Christmas. The medication journey can be a bit bumpy but no two people are the same and hopefully Mason responds well to his meds.
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Old 12 Jan 21, 06:46 AM  
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Ethan is on Azathioprine as well as tacrolimus, they are both immunosuppressants. Hopefully that does the trick for him. Glad he is doing so well x
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Old 12 Jan 21, 07:40 AM  
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Crikey, thats one heck of a list, bless him. I've been thinking about him loads. I'm so glad everything is settling down for him. Its all so different and scary at first, but kids are incredible. So very adaptable and such an inspiration. Well done Mason. Lots of love to you all xx
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Old 12 Jan 21, 09:45 AM  
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Originally Posted by soooexcited! View Post
She had a section of bowel removed but everything remaining is normal. Her calprotectin was over 3000 and that's also now normal. Its the best news she could have had. It was lovely to see her get involved with food over Christmas. The medication journey can be a bit bumpy but no two people are the same and hopefully Mason responds well to his meds.
Earlier in the year Mason had stool samples and blood tests done, his allergy consultant rang to say that it was Crohn’s disease because some reading in his stools was very high. She could not give me much information because she said it needed to be dealt with a specialist gastro consultant, which kept getting cancelled due to covid.
Could this reading be calprotectin that you mentioned?
After this modulen they are doing stool samples, blood tests and an MRI scan to see how things are. I do wonder how they know without another colonoscopy & endoscopy?
I do hope your daughter is well and stays well 💗💗💗💗
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Old 12 Jan 21, 09:48 AM  
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Originally Posted by danisleigh View Post
Ethan is on Azathioprine as well as tacrolimus, they are both immunosuppressants. Hopefully that does the trick for him. Glad he is doing so well x
Thank you x
How is Ethan? Is this for transplant? Therefore required forever? I can’t imagine the worry you must have gone through. Health can definitely throw some curve balls.
X x
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Old 12 Jan 21, 09:51 AM  
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Originally Posted by TheHughesCrew View Post
Crikey, thats one heck of a list, bless him. I've been thinking about him loads. I'm so glad everything is settling down for him. Its all so different and scary at first, but kids are incredible. So very adaptable and such an inspiration. Well done Mason. Lots of love to you all xx
Thank you x x
Children bounce back, they are pretty amazing 🤩
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Old 12 Jan 21, 11:36 AM  
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He is doing amazingly well! When is his next review FT?
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Old 12 Jan 21, 11:52 AM  
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God bless him and you all so brave not just him
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Old 12 Jan 21, 12:45 PM  
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Originally Posted by Floridatilly View Post
Earlier in the year Mason had stool samples and blood tests done, his allergy consultant rang to say that it was Crohn’s disease because some reading in his stools was very high. She could not give me much information because she said it needed to be dealt with a specialist gastro consultant, which kept getting cancelled due to covid.
Could this reading be calprotectin that you mentioned?
After this modulen they are doing stool samples, blood tests and an MRI scan to see how things are. I do wonder how they know without another colonoscopy & endoscopy?
I do hope your daughter is well and stays well 💗💗💗💗
It might well be. Its a good indicator of IBD when a result is very high. I think Livs had every scan test imaginable. She kept her goal and started Uni in September so all good now. Xxx
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