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Woohoo! The Pred is dead! :voodoo: And sending loads of luck that it stays that way! :goodluck:

Dusty. xxx
 
Sarah feeling fine.

Starting first day of colonscopy diet today and doing one drink of prep tonight.

Last blood tests good.
 
After our last scope experience I was thinking this sounded like a really good idea. This first dose of meds a few days earlier to deal with any pre existing constipation and then careful diet for a couple of days, to try and make sure your starting from a good point sounds really sensible.

(Catherine sent me a copy of the instructions, will definitely show to our GI if Liam's having scopes in the furture).
 
Dexky, the prep tonight was to clear any constipation.

There are was also a special diet for today and tomarrow. (Monday). Lots of food to choice from just avoiding cereals, grains,nuts, seeds and fibre. You just eat from the list.

Monday you also have a durolax tablet at night.

Tuesday - breast fast 2 slices white bread with honey or vegemite.

Light lunch - scrambled eggs with bread. Then clear fluids. No further solids just clear fluids. Real prep starts at 5pm.

Scope 12pm Wednesday.
 
We have a school close day tomarrow. I spoke to the year 12 head and Sarah is not expected at school all week.

She wants to go school on Thursday but she has a sac starting on Thursday, and the only way to delay the sac is not to attend school.
 
SAC - "School assessed coursework" (SACs) are the primary avenue of internal assessment, in Yr 11 & 12 program in Victoria. SACs are tasks that are written by the school and must be done primarily in class time; they can include essays, reports, tests, and case studies

I had to look it up, the terminology has changed since I was at school, so I thought I'd share what I found.
 
Colonscopy results

Anus: normal

Rectum & colon: normal

Ileum: some possible mild inflammation.

The GI saw pin size red spots and scarring in ileum. If this turns out to be active disease we will probably do a MRI.

Much improved results.:ghug::ghug:
 
Awesome news Catherine. Keeping my fingers crossed for the biopsy results. I can't remember...did Sarah have small bowel disease as well? Are there any plans to check there as well?

Maree: thanks for the explanation...you knew we would be asked;) Going to look up vegemite now...have heard of it in a song but never bothered to look it up.
 
That's great news Catharine!!! So glad for her!

Dexky - re the scope prep, Stephen had a horrible, horrible time with his first one (although this was while he was having his first flare and in hospital before diagnosis). For his recent scope, I'd hoped to avoid the pain, etc. so I put him on a low residue diet for a couple of days, then the day before the prep I put him on 90% liquid only, hoping most would be already 'cleared out' before he even started the prep and he didn't have any difficulty with this recent prep (from what Catharine described, I did similar but with no meds until the last day) But, again, not sure how much of the problems with the first prep were due to being actively flaring???
 
Sarah has small bowel disease, at MRI in October showed the colon as clear. And a problem 10cm above where a colonoscopy can reach with a fistula.

If these spots are not active disease we will most likely wait before doing further imaging.
 
Yes, we waiting the biopsy results.

This is a big improvement on the last colonscopy, where we were told it was crohn's straight after the procedure.
 
Dear daughter has lost 3 kgs in a week. She thinks it the colonscopy prep. Maybe it the almost 3 weeks break from swimming.

She coming home and getting straight into bed, she says is cold.:ybatty:

Do we all jump at shadows.
 
I hope it's nothing!!! And, yes... I think it's become habit to jump at shadows for me too! :)
 
Interesting you mention the break from swimming. Liam lost all his weight when he hurt his foot and had three weeks off football. As soon as the foot healed enough that he could play again his weight stabilised and he looked much much better.

I've been thinking that in his case at least exercise seems to play a critical role in keeping him healthy.
 
Interestly Rachel has stopped swimming completely and has also losted a couple kgs since.

The weight loss with Sarah not a concern as long as it doesnot continue. She is currently 62 kgs.
 
Hi Catherine. Thanks for the update after the colonoscopy. As for her feeling badly now, I think the cleanout/prep does cause inflammation for some. Jaedyn was one of those too. It took her about a month for it to all settle down after 2 cleanouts in 9 days. What was the colonoscopy for? Just to see if she was getting better, or has there been some problems lately? Will she be back to swimming again soon?
 
The colonscopy was to check disease level. But she has also complete 3 courses of pred in the 16 months since dx

Swimming start back last Tuesday but she only managed two sessions due to the colonscopy. This week she is back in full training which will be 6 2 hours sessions.

She is glad she has lost some weight as her formal dress will fit better.

Also maybe her weight was a little higher due to the last pred course.
 
Sarah's biopsies are not clear they show very mild ongoing inflammation in the ileum (1/3 biopsies).

Before doing everything drastic will test

6-methylmercotpurine
6-thioguanine
FBE
LFT

GI is hoping to sneak imuran up a bit.

Microscopic description

Specimen 1 three biopsies of ileal mucosa. Two are near normal. The third biopsy includes a focus of crypt distortion, active inflammation and granulomatous reaction.

Specimens 2 & 3 large intestinal mucosa. The appearances do not suggest a form of
Miscroscopic colitis.

Specimen 4: small quiescent inflammatory polyp.

Conclusion
Terminal ileum
Patchy active chronic granulomatous ileitis involving one out of three biopsy. The appearances are in keeping with Crohn's disease.

Transverse colon
Normal

Right colon
Normal

Left colon
Small quiescent inflammatory polyp in a background of otherwise normal large intestinal muscoa.
 
Feeling a bit sad.

Sarah has had mild stomach aches for the last few days. She says it not Crohn's pain, it feels different. There is gasto going round but she has no symptoms other than stomach pain.

She has been off steroid for 6 weeks, time before she lasted 4 weeks.

I think she is failing aza. I think the improvement is due to steroids.

We have a follow up with the GI tomarrow.
 
Good luck with the appointment Catherine. :hug: You are both in my thoughts. :heart:

Dusty. xxx
 
Update after GI visit. I don't think Sarah is as well as she appears:

- very small area of inflammation in the TI.
- anaemia is back 11.1 g/dL
- mild lymphopenia is back

Blood test done to check aza levels.

- if levels of aza still low will increase aza
- will try remicade (but she doesnot qualify and her index score is lower the last time), will refer to clinic, said there are ways.
- asked about LDN (it is a possible choice).

She took at picture of shingles scars, looked at the positioning etc. Pretty sure this was shingles but should have healed more. Going start applying vitamin e.

What is clear Sarah responds really well to pred. Not so sure about aza.
 
I am so sorry to hear this Catherine. :hug:

It sounds like your GI is well on top of things. I hope you get a clear direction to take soon and Sarah is soon on top of things both physically and clinically. :heart:

Dusty. xxx
 
Sorry to hear things are as good as you hoped. Hope the increase in Aza does the trick for her. Sounds like the GI was thorough. Fingers crossed things improve soon!
 
She been on 125mg for 3 months. I think it reasonly common to go higher if the levels are not in range. If the dose is calculate by weight her maximum dose is now 124mg. The blood test will tell us whether we can go higher.

We don't have many opinions as her index score is under 5 on the children's index.
 
Can't it sometimes take 3 to 6 months for the aza to work? Is it possible that she just needs more time on the current dose? (However, perhaps, I'm thinking of another med??)
 
It does take a while for the Aza to work, we were at that point of increasing dosage - Jack was at 125/mg and we were still not there his father in comparison was at 150/mg and twice his size. The GI backed the Aza all the way down to 50/mg and added 100/mg of Allipurinol to make it metabolize differently, that is when we finally saw a huge difference and he was on that combo for several years.
 
Our GI swears this isn't the case, BUT he cannot explain it.... Johnny's therapeutic levels are higher when on the same dose if he does not eat for one hour before and two hours after his dose. And no milk products either during that time. We are able to get away with a smaller dose when we followed this rule.
 
I have the GI looking into what it about milk. Sarah doesn't have milk but she does take calcium at the same time as aza.
 
Sarah has been on aza for 16 months starting on a dose of 50mg. Her dose has increased with weight. She has a gain in weight of 20kg.

Sarah competed today and was way off her times. The coach says she looks pale and tired. She looked really good a month ago.
 
Oh Catherine! I am so sorry to hear this. Sometimes I wish O didn't swim and run that way I could keep my head firmly planted in the sand. When they compete and you see the effects of the disease staring you in the face it is so hard. How are her spirits? I hope the bump up in Aza works and if it doesn't that you are able to get approved for Remicade fast!
 
Sarah is sleeping lot. It a very busy time at school with school with the first semester drawing to a close.

Both Sarah and Rachel sit the 3 hour GAT exam on Thursday and major pieces of work are need to be submitted for her folio subjects next week.

Many photos are being taken of things being dropped into liquid.

Her hemoglobin has dropped from 13 to 11.1 in 6 weeks.

I am finding hard to believe increasing aza in someone who already has mild lymphopenia can be a good thing. I do understand why it needs to happen.

The funning thing about the GI appointment was when the GI gave her the warning about letting people take photos of her (rash).
 
Oh Catherine...:hug:...I am so very sorry to hear that Sarah is having problems again, and no doubt the stresses of end of term aren't helping things, bless her. :heart:

I hope the increase in Imuran does the trick without compromising her bloods. Ugh!

Roll on better times for your lass!

Dusty. xxx
 
Sarah's bloods test shows a bounce back.

Hemoglobin 11.9
Lymphocytes 1.2

Comment: essentially normal

PVC 35.4% (37.8-47)

:ghug:
 
It is good her HBG came up some. Was she ready to get the exam over with today? I hope she improves and has more energy soon!
 
The exam was yesterday our time.

She is off at her year 12 social night. The girls looked all grow up in full make and formal dresses.
 
Duh! I forgot to add in the time difference! They always look so grown when their formal gowns and all made up, you realize how fast time flies!!
 
Rang to follow up 6TGN & 6MMP only to find the test has to repeated.

Received new form test pathology lab which says please mark time sensitive test urgent.:eek::eek:

Do think a lab attached hospital would be more like to get the procedure right?
 
I don't know what went wrong, only that the lab faxed the GI that listed tests couldn't performed.

Sarah was dx as adult and has a private GI. The normal local pathology labs seen to have a problem getting this test right. I wonder whether a lab attached to a hospital would be a better choice.

This is not a Medicare approved test. It a private test and costs $140. So don't think it done very often.
 
Ugh! Sounds like they left it sitting around too long if it is time sensitive. I am sure it is blood that is stored at room temperature so handling could be an issue too if they don't get their act together.

I am pretty sure that it would be an 'away' test for the labs around here so it would have to be sent to a lab elsewhere and my guess would a Sydney hospital for us??

I would suss out who does the actual testing.

Good luck with the next one!

Dusty. xxx
 
Had blood taken this morning. Had two tubes taken one following the instructions on the repeat test and one following their book of instructions.

They even rang the lab and the instructions don't match.
 
Catherine,
How has she been feeling now that exams are done? I hope now that she is less stressed she is doing better. Stress affects these kids so much! I just want to wrap them in a big bubble to protect them.
 
School holidays started today, no school for two weeks. Sarah is doing a training course to become a swimming teacher this weekend, Monday and Friday she going to RMIT to try uni for the day. There also lots of school work to be completed over the break.

The school stress in only going to increase as its only four months to final exams.
 
Dusty for your information don't do the 6TGN & 6MMP test on the Friday before the long weekend.

The test has to be processed in a hospital lab and received within four days from the blood being taken. The test takes up to 14 days for results. The test is actual performed at a number of Melbourne hospitals.

Next time will get this test done on a Monday or Tuesday. The woman from Boxhill Gasto lab was very helpful.
 
Wow, Sarah surely has a lot on her plate for the holidays! I hope she enjoys her course and her time at uni. :)

Ugh, I always hated these last few months and I know it will be just as stressful for you Catherine. :ghug:

Thanks for the info about the metabolites! :) I will make a note of that.

Dusty. xxx
 
Saw the eye specialist today.

Her eyes are fine.

I knew that pred could result in cataracts and I didn't know that aza could also cause cataracts. Both with long term use.

Follow up in two years except if she does another course of steroids.
 
GI called Sarah's AZA level is 18.

We increased the medication and the level when down.

I have posted a separate questions.
 
ChampsMom, go to Catherine's public profile (click on her name on one of her posts and a drop down menu will appear), once on her public profile, you should see her pics along the right side (down a bit). However, I think you will only see this if you are 'friends' with Catherine - you many have to send a friend request. ;)
 
Sarah looks well and appears to have no symptoms you would expect with a flare.

But she is now missing her 200 times by between 15-20 seconds. She is falling sleep after school which means she is up later doing homework. The workload is very heavy.

Bloods were done on Friday, hopefully they will tell us something.

I suggest to Sarah that maybe she should have her vitamin levels done. She wanted to know whether if they were good could she stop taking some of the one she taking. I said yes maybe change what your supplements your taking.

She going to try dropping swimming sessions if the tiredness does not improve.
 
Oh Catherine, I so hope Sarah is able to find the right balance, poor love. :ghug:

Such a stressful time of year with no end soon in sight. I use to hate coming home from work to see Matt asleep on the lounge. Something as simple as that broke my heart, I hated it. :(

Good idea to get the bloods checked hun. :)

:hang: Mum! You are doing brilliantly. :heart:

Dusty. xxx
 
Oh Catherine! Sorry to hear about the fatigue in and out of the water. That is usually our first sign things are amiss with O. I hope it is just stress and normal teenage fatigue. Keep us posted!
 
Received call back with Sarah blood test results (missed call).

The message said that Lymphocytes have dropped 0.7, stay on the same dose and we will discuss on Wednesday. The results are confusing but the same thing happened last time the dose was increased.
 
She had mild lymphopenia for most of last year. She went on pred and the anemia and lymphopenia resolved.
 
Hmmm...I am curious as to what others experiences are so I think I will pose the question. :)
 
I'm sorry she is so fatigued. Poor girl. Not anemic? I think the vitamins are a good place to check. How is her weight doing?
 
I don't know whether she has anemia, the only number mentioned on the phone message was the lymphocyte count.

I rang the GP office to get a copy of the blood test results for my discussion with the GI on Wednesday. But the GP practice has now decide we need written authorization from the GI before they will release any the results order by the GI to us.

This practice normal release all results once they check by a doctor.

Really don't want to drive 40 minutes to get a copy of the results.
 
GI will post results.

White cell count is 5.3
Lymphocytes 0.7 (1.0-4.0)

Total Protein: 62 g/L (low)

Only have part of the results as the GI sent a photo.

Instructions repeat bloods in two weeks, she will also post more forms. I requested vitamins be done due to tiredness.
 
Sarah is sick again. She has had a headache and nausea for two days. They did a heavy dryland session yesterday before this all start, Sarah says its not related.

Her sister has stomach ache when bending from the session.

The gp dx Sarah with migraine and asked whether she had tried ibuprofen as panadol was not working.

End up with Maxalt as I said she can't have ibuprofen.

It doesn't appear to me to be migraine. Maybe stress? Had her bloods done as they are due tomorrow anyway.
 
Sarah photographic theme is high speed photographic and she has been taken photos in a dark room with a flash. My husband thinks this could be triggering the headaches.

The flash is blinding.

Problem solved. (Back in bubble)
 
Gosh I hope so. She has slight cold symptoms today.

I think it bit of everything. School is very busy. She is currently has 2 or 3 sac per week. Her folio subjects practical work need to completed by I think the 18 September. This is include three completed garments with hand dye fabric for textiles. For photography, she has a produce least 3 works.
 
Doing well! What an awesome birthday gift! HAPPY BIRTHDAY SARAH! Now go get those driving hours in!
 

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