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08-24-2014, 04:56 AM   #31
Catherine
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Aza levels blood test done.

Back pain gets worse an the day goes on.
Cold with cough in the evening and night (asthma?)
Fever (night mainly)

Make to university only twice last week
Called in sick twice to work
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
08-24-2014, 06:39 AM   #32
my little penguin
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Does she have a "sick plan" for her asthma??
DS's allergist changes meds etc when DS has a bad cold or worse to stay ahead of the asthma inflammation
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08-24-2014, 07:03 AM   #33
Catherine
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She is using her ventolin for the cold. Yes, she has an asthma plan.
08-25-2014, 11:29 PM   #34
Catherine
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Had a quick trip to the GP this morning the cold is getting worse. Her chest is clear, it not asthma. GP says viral, no treatment other than cold and flu tablets. Come back if not any better on Thursday. She has had to call in sick for today and tomorrow.

Luckily university breaks for a week on Friday. Needs to try and get to university on Thursday, to get assignment due in two weeks explained.

Still know no clear Crohn's symptoms but Sarah always had a cold before dx.

This may sound silly but other family hasn't been this healthy in years. Sarah was always bring home cold and share them around.

Hasn't had a cold like this since dx.
08-29-2014, 03:29 AM   #35
Catherine
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We saw GI today.

The faecal calprotectin test is very reliable. A level above 200 is when you look at changing treatment. Slight possibility it rised due to bacteria infection but unlikely as there are no clear symptoms.

May have a couple of symptoms of a Crohn's
- lower back pain (could referred pain from stomach)
- sore lower gum
- sore on end the tongue.

She has gain a couple of 2kg.

Aza levels not back.

Treatments Options:

1. Prednisolone

2. Budesonide

3. Antibiotics x 2

4. Mesalazine/pentasa sachets

5. No change.

GI has given Sarah lots of reading and samples Mesalazine and pentasa. She has asked for a decision to be made with reason (from Sarah).
08-30-2014, 06:36 AM   #36
Catherine
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Sarah started a trial of mezavant (Mesalazine) today. Dose 1.2 mg x 2

Her lower gum has broken out in pin size blisters about 20 in total and her gum looks to be comming away the front two teeth.

Need to make a dental appointment.
08-30-2014, 07:12 AM   #37
my little penguin
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So she is taking a 5-ASA in addition to Aza or instead of Aza ???
Hope its helpful for her.
We added on for DS ( asacol HD)
He took it for over a year in addition to other meds.
It did absolutely nothing for him since there was no difference at all when we stopped it.
08-30-2014, 07:15 AM   #38
Catherine
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In additional on aza. At this stage we are trying work out whether she can cope with the size of the tablets
08-30-2014, 07:17 AM   #39
Catherine
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She doesnot want to take steriods due to the side effects. Antibiotics combination is still an option.
08-30-2014, 07:22 AM   #40
my little penguin
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But did the doc answer how the steriods /abx would fix the problem long term since both are short term fixes?? Since you know Aza by itself is not enough and steriods/abx are not something one should take long term.
Once you stop either you would be back in the same boat your in now .
I thought they put her on steriods at least two to three times earlier since the Aza was not handling the inflammation by itself.

I feel so frustrated for her.
08-30-2014, 07:45 AM   #41
DustyKat
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What do you think about the Mesasal?

If she has refractory disease then that should be a green light for the biologics.

Dusty. xxx
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08-30-2014, 08:45 AM   #42
Catherine
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DustKat

Sarah kind of wants to do nothing.

It really hard with a young adult who appear now have asymptomic refractory Crohn's. I think she going have trouble with the size of the tablets. Still planning to increase aza if the levels allow it.

GI explaining why doing nothing was not a good option as she already has scarring and narrowing in her small bowel because there are no symptoms there is a really risk of obstruction without any warning prior.

She also doesn't remember how sick she was at dx. The GI was explaining that she had been so sick, she had become an urgent case because they were looking for cancer So glad I didn't know this at the time.

Last edited by Catherine; 08-30-2014 at 04:28 PM.
08-30-2014, 08:48 AM   #43
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I don't at this stage know how you prove that the disease is refactory and severe.
08-30-2014, 08:55 AM   #44
Catherine
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But did the doc answer how the steriods /abx would fix the problem long term since both are short term fixes?? Since you know Aza by itself is not enough and steriods/abx are not something one should take long term.
Once you stop either you would be back in the same boat your in now .
I thought they put her on steriods at least two to three times earlier since the Aza was not handling the inflammation by itself.

I feel so frustrated for her.
Sarah how done 3 courses of pred, 2 at 30 mg and 1 at 50mg. I not in flavour of another course of steriods especially when she is symptoms free.
08-30-2014, 09:21 AM   #45
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I don’t think that the Mesasal will do diddly squat for her.

Yeah, I see what you mean about the lack of overt symptoms. *sigh*

Okay, so obstruction is a real and ever present threat, she has scarring and the meds are doing nothing…is surgery maybe your best bet?

Dusty. xxx
08-30-2014, 10:17 AM   #46
Maya142
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What about Entocort? M was on Entocort for 3 months and had absolutely no side effects. And, it really did help her a lot!
Sorry to hear that you're in this horrible position Catherine It IS so had to make young adults listen (mine don't even listen when they're symptomatic)!
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08-30-2014, 04:16 PM   #47
Catherine
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What about Entocort? M was on Entocort for 3 months and had absolutely no side effects.)!
Budesonide is Entocort, Sarah is not wanting to do steriods. I don't whether we can afford this option. We will if it more likely to be successful. The other options will cost us $6.60 a script. The chemist I use believe it will cost approximately $150 per script.
08-30-2014, 04:22 PM   #48
Catherine
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I don’t think that the Mesasal will do diddly squat for her.

Yeah, I see what you mean about the lack of overt symptoms. *sigh*

Okay, so obstruction is a real and ever present threat, she has scarring and the meds are doing nothing…is surgery maybe your best bet?

Dusty. xxx
She told us she will not agree to surgery: so surgery is not a option. What young adult is going to believe obstruction is a real risk when they have no symptoms?
08-30-2014, 04:27 PM   #49
Catherine
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We do have a form to retest test faecal calprotectin, not sure when. I have a feeling we are going to run through all four options.

How long would Mesasal would take to work? If it did?
08-30-2014, 05:15 PM   #50
my little penguin
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Four weeks -
2nd opinion Gi told us if pentasa was going to work we would know in 30 days.
If it hadn't worked by then it wasn't going to work .
Hugs
08-30-2014, 05:18 PM   #51
DustyKat
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^^^^DItto.

Some patient literature does state that you may see results within a week.

Dusty. xxx
08-31-2014, 05:33 AM   #52
Catherine
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The reason we decided to start with Mesasal is it has the easier dosing schedule.

We have done one other charge and that has been to move caltrate tablet to night time. On the slightly change has the aza levels will go up if moved away from calcium.

This has meant moving iron, b12 and b multi to morning. This means she is now taking 9 tablets individually in the morning.

Next questions if the additional of works Mesasal how long to it would take to show in a faecal calprotectin?

Last edited by Catherine; 08-31-2014 at 04:38 PM.
08-31-2014, 08:24 AM   #53
my little penguin
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We were told fecal cal after a flare takes 3-6 months to go back to normal .
09-01-2014, 06:39 PM   #54
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Catherine,
Sorry you are going through this. Stubborn young adults don't help either. I too have one of those!
Hope you guys figure something out!
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Crohn's Dx'ed Sept 08
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Pentasa stopped - nosebleeds
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New secondary diagnosis: Gastroporesis Dec 2013
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09-07-2014, 05:57 PM   #55
Catherine
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Quick update.

Sarah has enjoy her week break from University. First day back tomorrow.

She still has a cold (almost 4 weeks now). She was well enough to work last week. She has been grant a 2 day extension to her assessment.

Her back pain has improved. We are still awaiting results from the blood test for aza levels.

Sarah is holding on to the GI comment that the Crohn's may be flaring due to the faecal calprotectin but you can't be positive it a flare. I asked is the Crohn's is not flaring why did she agree to add more medication. She replied the GI's advise was to do nothing was a "bad" option.
09-07-2014, 08:38 PM   #56
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Glad she enjoyed her week break! And that her back pain is better.

Understand that 'doing nothing' is not a good option, however, 'doing something' just 'because' doesn't seem right either!
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May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
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09-07-2014, 09:56 PM   #57
Catherine
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Tesscorm

The GI opinion is that a high calprotectin is a Crohn's flare.

Our last trip to ER was a week after a Calprotectin of 610. The only symptom that time 6 hours of severe pain.

Got love asymptomatic Crohn's Disease.
09-07-2014, 10:12 PM   #58
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Sorry Catherine, I know how hard it is to get teenagers to listen! At least she's taking the meds, that's some consolation isn't it?!
I hope they work quickly and get the flare under control!
09-09-2014, 09:55 PM   #59
Catherine
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AZA level result back. Going to 200mg per day.

Has anyone taken aza, dose rate of 3.5mg/kg?
09-12-2014, 06:17 PM   #60
Catherine
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Spoke to the GI today. We have a plan.

Get aza levels to the middle of range by increase to 200mg and further if necessary.

Continue taking Mesasal.

Stop taking all supplements and retest levels in 2 months, her levels have been stable and Sarah really wants to stop.
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