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09-09-2014, 04:29 AM   #1
CDJ
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Possible flare up?

I am getting increasingly worried about Josh. He has so far missed one and half days off school this new term [ only started back last Wednesday ].
He is getting increasing pain in his stomach and opening his bowels 7 - 10 times a day --- this has gone up from 1 -2 a day since July.

This started over the summer with odd days of feeling ill and stomach cramps to the point now it is everyday. It is not just preventing him going to school it is stopping him doing things he really enjoys like going to the cinema because he is feeling so bad.

In himself when he is feeling okay he is doing well. He is eating, though not as much as he was. He ended up in hospital for 3 weeks 18 months ago with a really bad flare up and losing 16kg that I am desperatly worried we are headed this way again.
Because he never presents with "typical" crohns symptoms, like weight loss, chronic diarrhoea, tiredness etc his GI never thinks that he is too bad. Josh fights through everything, and though he does get all the above, it is never dramatic for him to start with so it tends to take longer to get help.

I feel really guilty today as I have made him go into school [ though an hour late ] as this year is such an important year for him. Really all I wanted to do was to tell him to stay home again. He tells me he is now going to get up an hour earlier than he is doing at the moment in the hope that the cramps and needing the toilet will go in time for him to get to school on time. I am not sure this will work as he is still often going to the bathroom at 11 am.

I have contacted the hospital this morning and now waiting for them to get back to me to say what they intend doing. At the moment I am at a loss as to what to do
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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
09-09-2014, 05:37 AM   #2
Lisa
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It does sound like his symptoms are getting worse, and a visit with the doctor is most likely needed. Now is better than waiting any longer, I say this from experience.....
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09-09-2014, 08:36 AM   #3
Sascot
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Sounds like he needs a check up ASAP, can you get an urgent appointment with the GI? That's a shame he isn't able to manage school without struggling. Hope you get some help soon
09-09-2014, 01:12 PM   #4
Willowcat05
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Sounds like the start of a flare.Hopefully you get him seen asap, maybe a coures of stetoids or back on modulen will do the trick to get him back to feeling well again , its all we seem to do is worry about or kids.
09-09-2014, 01:36 PM   #5
CrohnsKidMom
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Bless his heart for trying to make school work by getting up extra early. Hope you get to see the dr soon and get him feeling better.
09-09-2014, 02:24 PM   #6
CDJ
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Thank you for all the support. As a single mum with little family near by we are very much on our own dealing with this, and it really does help having this group to help get through things like this.
I have contacted the hospital, which has passed my concerns onto the relevant doctor, but I am still waiting for them to contact me. I will get onto them again tomorrow. I really want him to be well again.
09-09-2014, 02:40 PM   #7
Sascot
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Keep phoning if they don't call - that's usually my tactic
09-10-2014, 06:21 AM   #8
CDJ
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Finally got to speak with someone at the hospital today. It seems that Josh's inflammation markers were raised when he had his August blood test, though no one got back to me to let me know. He did have a blood test on Monday this week, but for some reason inflammation markers weren't asked for, so we have had to go for another test today. We should have results by tomorrow for this one, but it is looking like he is in a flare up. We also need to do stool samples. Until all tests are back they won't do anything. At the moment they are talking of steriods, which I would like to avoid if possible due to their long term affects.

We have had almost 18 months with no problems so wasn't really expecting this, but I suppose with this disease that there never is any certainty. Hopefully this will be a short lived flare this time. Josh is home again today as he just isn't up to going to school.
09-10-2014, 10:34 AM   #9
Maya142
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I hope they can get the flare under control soon! Would Entocort be an option for your son?
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Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-10-2014, 11:06 AM   #10
SupportiveMom
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I don't know how i missed this thread yesterday. So sorry Josh is feeling so lousy. I completely understand why he wants to just stay home. 7-10x is where D has been for a bit now and it does really make her tired and short on energy. You saw how quick she got tired when you were here this summer and she is a high energy kid. It sounds like a flare to me too. Maybe there is room to up his medication or add one? I know it isn't ideal. I agree prednisone might be a quick fix, just get off it as soon as possible. Two years later D is still trying to get off. I mentioned it to D, she says to send her support to Josh & if he wants to talk she would be happy to lend an ear.
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09-10-2014, 01:32 PM   #11
Sascot
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Sorry to hear that. Could he do the Modulen again instead of the steroids?
09-11-2014, 02:02 AM   #12
CDJ
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Josh says he would do modulen again, though only a NG tube this time as he hate drinking it! We need to wait until all the test results are back before they decide on which way to go. I would rather do this than go onto steriods again unless we really need to.

Supportivemom, thank D for her concerns, Josh says at the moment he doesn't want to talk [ you know how non communitive he is ]
09-11-2014, 10:25 AM   #13
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Agree with Maya: Entocort (Budesonide) works very well for me when I have a flareup, sometimes as soon as 7 hours. I take 2 or 3 pills (3 mg each) depending on the severity of the flareup. Unlike prednisone, it has little to no side effects.
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