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I Hate Crohn's

Catherine

Moderator
Sarah is no longer in remission. :ybatty:

Her faecal calprotectin level is 398. She says she has no crohn's symptoms whatsoever.

She doesn't appear to have lost anymore weight.:)

What the hell is going on:ymad:
 
I just wanted to send hugs your way! If she doesn't qualify yet for biologics then do you just adjust current med or switch to another immunosuppressant?
 
Catherine,
So sorry to hear! It seems a lot of our kids are going through this right now! Ugh! Hoping they make a plan quickly and she gets into remission!
 

Maya142

Moderator
Staff member
Really sorry to hear Catherine. Hope they can figure something out for her soon:hug:
 

Catherine

Moderator
To qualify for remicade you need to meet to one of the following:

Initial PBS subsidised treatment with a TNF alfa antagonist agent of patients with severe refractory Crohn disease with a Crohn Disease Activity Index (CDAI) score greater than or equal to 300.

Initial PBS subsidised treatment with a TNF alfa antagonist agent of patients with severe refractory Crohn disease with diagnostic imaging or surgical evidence of short gut syndrome or with an ileostomy or colostomy.

Initial PBS subsidised treatment with a TNF alfa antagonist agent of patients with severe refractory Crohn disease with extensive small intestinal disease and radiological evidence of intestinal inflammation affecting more than 50 cm of the small intestine.
 

Catherine

Moderator
I am confused - if she is flaring on Aza
Does she have to have damage before they would switch her??
She would need have cdai index of 300. Current index approx. 7

The small bowel effected would need to be more than 50 cm. Last MRI show involvement to 10 cm.
 
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Catherine

Moderator
I just wanted to send hugs your way! If she doesn't qualify yet for biologics then do you just adjust current med or switch to another immunosuppressant?
I believe the GI will test aza levels with the hope of increase further. Although she is currently on 2.7 per kg.

If that not a option then weekly injection drug starts with M.

Or surgery
 
So sorry to hear this. We are also in Melbourne.I don't know where your girl is being treated, but we found that the Alfred Hospital in Prahran had a lot of experience with Remicade and were very keen on it for young adults. One of the IBD nurses there, Belinda, was an absolute gem and is very happy to talk on the phone about the treatment options they offer. Wishing your daughter a speedy remission.
 

Catherine

Moderator
Hi Helen, we use a GI in Dandenong. When Sarah had her last flare it was the Alfred who advised she wouldn't qualify for Remicade. It may be different this time.
 

my little penguin

Moderator
Staff member
That is ridiculous to have to wait for more damage to her small bowel before they will use it .
That is like waiting for multiple heart attacks before treating to prove the heart attack causes damage. They know the crohn's will cause damage from inflammation and they know her current drugs are not stopping the inflammation .

I am so very sorry
 

Catherine

Moderator
We await for the blood test request forms. Should arrive in tomorrow mail. I am very organised appointment booked for GI on 29 August. Get new plan.
 

Tesscorm

Moderator
Staff member
So sorry, Catherine! And agree with all MLP said - it's ridiculous that they won't approve a med that will PREVENT the damage! I hope you find a way around this. :ghug:
 
So sorry to hear this. It is so frustrating that us, as parents, can almost see what is needed and yet we are bound by what ever healthcare system we live with.

Our children shouldn't be left to suffer whilst the professionals work their individual systems. Every child is different and the disease is different for every child and therefore surely treatment plans should be flexible.

Sending big hugs. Xxxxx
 

Catherine

Moderator
The daughter has been called an odd or interesting case.

Sarah has few if any symptoms which could be related to Crohn's

Do any of these sound like Crohn's to you guys

- sick feeling in the stomach (no pain) just the last couple of day.
- slight change in bowel habits (two days only)
- lower back pain
 
Well, no it doesn't sound serious based on the symptoms. But a doctor who specializes in Peds IBD should know that there are always exceptions to the normal presentations!

We're new to Crohn's but I had to remind the new team to not base any decisions on how our kid looks and acts. Use labs and diagnostics.

Plus some kids are amazing about pain tolerance. It sounds like your daughter is. I hope you can get to an appeals process with the meds to get her what may help.
 

Maya142

Moderator
Staff member
Low back pain could spondyloarthritis, often associated with IBD. She should see a rheumatologist if it continues. It is better to catch SpA/AS early and treat it aggressively, so definitely keep an eye on it.

These are symptoms of inflammatory back pain:
What are the symptoms of inflammatory back pain?
Typically, inflammatory back pain:
Starts before the age of 40 years
Has been present for at least 3 months
Has come on slowly over time
Is worse in the mornings
Causes stiffness in the mornings lasting for at least 30 minutes (stiffness is perhaps best described as the sort of aching you get the day after heavy exercise)
Improves with exercise, and is worse with rest
Improves with anti-inflammatory drugs (e.g. ibuprofen)
Can wake people from sleep, often in the second half of the night
Can often cause pain in the buttocks, but rarely pain shooting down the leg (sciatica)
 

Tesscorm

Moderator
Staff member
S had back pain for months before diagnosis. It was mainly in his lower back but did, at times, reach up to upper back. He did have an injury that started the pain, however, by the time he got his crohns' diagnosis, we weren't able to determine if the use of ibuprofen triggered the crohns and the back pain was unrelated or if, by that point, the back pain was related to the intestinal inflammation and no longer being caused by the injury. He did see a rheumo at diagnosis and all was fine.

Even more confusing, for the most part, his back pain went away after he started on EEN/EN (he would only rarely have a back ache), however, MREs continued to show intestinal inflammation for two years (until he started remicade).
 
Sorry to hear this Catherine.

We thought she looked dreadful when we saw her a couple of weeks ago. Our impression was she looked completely exhausted and like she was really struggling.
 

Catherine

Moderator
Agree at times she doesn't look well.

I expecting the blood test to show anemia. She is also very thin.

She is still saying she is not Crohn's sick.

Today she had
- headache
- general feeling of being unwell
- cold
 

DustyKat

Super Moderator
Couldn’t agree more Catherine :ghug: Crohn’s sucks and the CDAI, both adult and paediatric are an absolute joke. :ymad:

My Sarah’s Crohn’s never ran a ‘normal’ course clinically and in presentation. Most of her symptoms were extra intestinal. The absence of blood and diarrhoea are major factors in skewing numbers against those that don’t suffer with them and that is not uncommon in small bowel disease. I have keyed Sarah’s symptoms and bloods into the CDAI before and she wouldn’t even come close to being over 150 at her worst. Ironically enough, now that she has had surgery, if she stopped her psyllium she could now score on the loose stools front while in remission! Ha, what a crock of s*** the CDAI is! I have told the GI that, just so he knows how I feel :lol:, and Medicare. :angry-banghead:

I hope the new treatment plan works but if not they then can’t deny her disease is refractory.

In my thoughts. :heart:

Dusty. xxx
 

Catherine

Moderator
Finally received the blood test form. We are testing 6mmp, 6tgn, ratio.

Comment: Crohn's disease refractory to treatment?
 

my little penguin

Moderator
Staff member
But how is it refractory to treatment if they are ignoring a whole class of drugs ( biologics)?
Maybe they are trying to prove the other drugs are not working to get approved for biologics .
Ie her levels are therapuetic for the current drug but her disease is still progressing ????
 

Catherine

Moderator
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
 

my little penguin

Moderator
Staff member
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
 

Catherine

Moderator
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.
 

Catherine

Moderator
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).
 

Catherine

Moderator
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.
 

my little penguin

Moderator
Staff member
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.
 

Catherine

Moderator
In additional on aza. At this stage we are trying work out whether she can cope with the size of the tablets
 

my little penguin

Moderator
Staff member
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.
 

DustyKat

Super Moderator
What do you think about the Mesasal?

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

Dusty. xxx
 

Catherine

Moderator
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:eek2: So glad I didn't know this at the time.
 
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Catherine

Moderator
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.
 

DustyKat

Super Moderator
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
 

Maya142

Moderator
Staff member
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:ybatty:)!
 

Catherine

Moderator
What about Entocort? M was on Entocort for 3 months and had absolutely no side effects.:ybatty:)!
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.
 

Catherine

Moderator
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::confused2: so surgery is not a option. What young adult is going to believe obstruction is a real risk when they have no symptoms?
 

Catherine

Moderator
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?
 

my little penguin

Moderator
Staff member
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
 

Catherine

Moderator
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?
 
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Catherine,
Sorry you are going through this. Stubborn young adults don't help either. I too have one of those! :ybatty:
Hope you guys figure something out!
 

Catherine

Moderator
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.:eek2:
 

Tesscorm

Moderator
Staff member
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! :ghug:
 

Catherine

Moderator
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.
 

Maya142

Moderator
Staff member
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!
 

Catherine

Moderator
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.
 

Catherine

Moderator
This plan actually seemed to work.

We will never know whether adding Mesasal worked. I think it more likely it was increasing aza to 200mg.

Other than the cold lasting 12 weeks (we increased aza when already had cold) she hasn't had much sickness on aza.

Fc is 190.
 
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DustyKat

Super Moderator
That is good to hear! :) And so hoping it stays that way, good luck! :ghug:

What supplements were stopped and why?

Dusty. xxx
 

Catherine

Moderator
The supplements were stopped because she didn't want to take so many tablets. She can only take one tablet at time.

Iron, b12, b multi and calrate

Iron was restarted as ferritin was at the bottom end of the range on last test. And although she is not anemia some of number are heading in the direction.

It a nutshell there were more important things to argue about.
 
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crohnsinct

Well-known member
Fantastic! I hate when I can't point to a single thing and say "That's it!"...but I will take it all the same! Long may it continue!
 
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