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Crohn's Disease Forum » Parents of Kids with IBD » Had scopes but no answers yet.....


08-12-2014, 12:10 PM   #1
Ands
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Had scopes but no answers yet.....

DS has been a true star, taking bowel prep yesterday and having scopes today. He is so exhausted anyway that this was quite an effort for him.

Heard nurses muttering as he was taken back up to ward to recover and we were then told that they couldn't complete the colonoscopy as they couldn't get through. Dr said it was either 'one of those things' which happen on the day, or it was some narrowing. We now have to wait for a date for an MRI.

This was his third scope in two years and others haven't been a problem, does this often happen as 'one of those things'? Or is it likely to be narrowing. I don't either know what that means...!

As many of you will know (having put up with me going on and on) he's not been right for a while, so exhausted, aching limbs, not hungry, one day upset tummy, one day constipated. Hate the waiting for answers all of the time. Went into today expecting everything to be clear (as this is the impression that Dr has given to us) and were then going to tackle his mental health. Now unsure what to do. He says he will feel better in himself when he physically feels better and Drs give us the impression that as he is low this is causing the symptoms......

I guess all we can do is wait for the MRI....

Thanks. Xxxx
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Son Joseph diagnosed July 2012 (aged 10)
Crohn's: oesophageal, ileal, oral and perianal disease
6 week exclusive modulen
8 weeks predisolone
2 weeks azathioprine - stopped after reaction
6-MP 50mg - stopped June 2014 (after 18 months)
Currently on:
Sennoside 18ml daily
Multi Vitamin
Omeprazole 10mg
Prochlorperazine 2 x 5mg
Predisolone as a mouth-wash (as and when needed)
08-12-2014, 01:48 PM   #2
Maya142
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Sorry to hear that you don't have answers yet. I hope the biopsies and MRI prove to be more helpful.
It does sound like his disease is not under control, poor kiddo. Hang in there !
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Mom of S (23)
dx with JIA at 14
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08-12-2014, 03:45 PM   #3
dodie74
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When my son had his last scope they couldn't get through either ( was the join from small to large bowel) had MRI and they couldn't decide if was scarring or inflammation so had decision to opt for surgery or try mxt. We decided to try mxt. And so far so good. Weight been a bit of prob so he now just started shakes even though he eats ok.
Hope you get answers soon. Xx
08-12-2014, 05:36 PM   #4
Sascot
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Sorry you aren't any further forward. I don't think doctors truly understand the mental impact of dealing with so much pain and exhaustion. I hope they can get a plan going to ease his symptoms, I agree he will probably feel a lot happier when things get better.
08-12-2014, 09:46 PM   #5
kimmidwife
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Sorry your boy had to go through this. It really stinks. Hopefully the MRI will give some answers!
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Crohn's Dx'ed Sept 08
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08-13-2014, 02:12 AM   #6
Willowcat05
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Hi, sorry you are going through this with your son just now. I went through the same thing last year with my son they couldnt get through with scope we had to wait for mri which showed narrowing in small intestines was put on waiting list to see surgeon this was in may he got so bad by the end of september that he had to be admitted to hospital in an emergency because he was in so much pain and being sick anyway they done another scan and his small intestines were so narrow they were like a straw he was put back in modulen to get his inflammation down and strenghth back up and was operated on two weeks later he is doing great now no crohns symptoms has grown and put weight on medication wise he is on methotrexate injections .

Past meds
Aza
Right hemicolectomy oct 2013
Current meds
Methotrexate injections weekly
Folic acid
08-13-2014, 02:26 AM   #7
Ands
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Thanks everyone it is SO nice to hear from people who understand. Hate just being left to wait again.... So hoping that MRI doesn't show surgery needed, DS gets so anxious even putting a line in, anything more invasive would require a huge amount of very careful discussion for it to be even considered I think.

I got them to take bloods yesterday again, so hopefully we shouldn't have to wait too long until we get these results. Just feel helpless atm, he's not even on any significant medication since we had to stop the 6mp.

At least he's woken up brighter today, he was in immense pain last night, I wonder if they did extra 'pushing' to try and get the scope through!!!!!

Oh well, the sun is shining and it is still the summer holidays so still lots to be grateful for. Xxxx
08-13-2014, 07:07 AM   #8
my little penguin
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Oh no
I didn't realize they had him on nothing .
I would think narrowing as well.
Will it be months till the mre ?? Or can they get him in about a week?
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08-13-2014, 07:19 AM   #9
Ands
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Was told to arrange a follow up appointment for 4 weeks, so hoping MRI will be before that but who knows! I have to wait for the post and see what arrives. Xx
08-13-2014, 07:40 AM   #10
my little penguin
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MRI or mre ?
Mre has barium and contrast so it enhances the pics
MRI just has contrast.
08-13-2014, 09:56 AM   #11
Ands
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They only mentioned a MRI and that is what he has had before, so assuming it will be that. Xxx
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