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Sarah's story

Catherine

Catherine

Moderator
My daughter Sarah has stomach pain for last six months and anemia with borderline levels. Hemogloblin 93.

Doctor first it was gastro and stress.
Then ibs

Still awaiting on thalmessia results

Testing for lactose intolence and boardline fructose mal.

Begin losing serious amount of weight around christmas. Now down to 46kg BMI 15%. Doctors then begin asking whether she had been dieting although she was complaining severe pain daily round belly button.

Finially receive referral to specialist, testing done last Wednesday, bleeding ulters told looks like crohn, doctor wants to ruleout a couple of nasty before starting treatment. MRI was performed monday, full results and follow up this friday.

Same day as she is purpose start year 11

Things have now started to move quicker.
 
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xJillx

xJillx

Your Story Forum Monitor
Hi Catherine and welcome!

I am sorry to hear your daughter is so unwell. It must be very difficult to see her suffer. But hopefully once her doctors figure out what is going on with her health, she can start appropriate treatment and start to feel better.

We have many other parents like you on the forum. You should check out the Parents of Kids w/IBD subforum.
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hi Catherine and welcome :bigwave: I am sorry that Sarah is so poorly at the moment, hopefully on Friday they will have the results they need to sort out a treatment plan that will get her feeling better. Definetly check out the parents forum and have a general look around, I would get a pen and paper and make a note of any questions that pop in your head. Do not leave the appt until you and Sarah are happy that you have the info you need and that the doc has explained things fully. You both need to be happy with any treatments they advise as well. Please keep us updated on how things go.
 
David

David

Co-Founder
Location
Naples, Florida
Hi Catherine and welcome. Awwww, I'm so sorry to hear about your little one :( That must be so tough for everyone. Please keep us updated and I wish you and Sarah all the best.
 
Catherine

Catherine

Moderator
Sarah is the eldest of my three daughters 16, 15 & 12.

Spoke to school today about her not being able to start back to school on friday, the start of the new school year.
 
DustyKat

DustyKat

Super Moderator
Hi Catherine and :welcome:

I'm so sorry to hear about your daughter...:hug:

Good luck with the appointment tomorrow and I hope it gives you solid answers one way or the other so that Sarah is able to get some relief.

My daughter was diagnosed with Crohn's in Year 9 and my son in December 2010, he completed Year 12 last year. If there is anything you want to know about school and my experiences just ask away. :)

Please keep us posted on how you go at the docs!

Good luck and welcome aboard!

Dusty. xxx
 
tea_angie

tea_angie

Catherine, I am sorry to to hear that your daughter is not feeling well. I understand how it feels when doctors suspect excessive dieting or eating disorders. Before I was diagnosed with Crohn's my Gastro doctor asked if everything was okay with my head - I was very thin about 41kg (160cm tall) and every time I ate I was in pain. I told him to run some tests and finally they diagnosed me. So don't let that bother you, just keep on asking questions so you can get answers on what is wrong and how you can help your daughter. Good luck on Friday. Let us know what you find out. I'll keep you both in my prayers.
 
Catherine

Catherine

Moderator
Tea_angie

Sarah is the same at 45kg (172.5cm).

The diagnose has been confirmed today as Crohn's in Ileum (start of small bowel) and small amount in the colon.

The Crohn's is mild to moderate. But symptoms are classed as severe. They believe this because she had Crohn's for a long time and she symptoms but not been classic until the last weeks. The doctors have decided on the treatment plan based on the symptoms not the level disease.

Her anemia is ACD (anemia of chronic disease)
Iron levels are very low
Hemoglobin 91
Severe weight loss

Should have major improvement over the weekend and be able to go back to school next week.(Although she has a medical certificate of the whole week).

Swimming will take much longer as she body has began to eat all her muscles.

The treatment plan is as follows:
Azathioprine 50 mg daily
Prednisolone 30 mg daily for two weeks then reducing by 5 mg per week.
Mulit Vitimin
Spa Tone (liquid iron)

Other medication
Seredite (asthma)
Ventoil as need (asthma)

Blood test after one week for FBE, ESR, CRP
Blood test after two weeks for FBE, ESR, CRP, Albumin
Faecal calprotectin in the next couple of weeks

Review appointment two weeks

Also found out the tranfussion would have been consider if hemoglobin was under 90.

Asked about pain relief was told Panadeine Extra ok but should not be need after the weekend as the medication should have reduced the pain.

Took first dose of medication at 2pm today, chemist advise maybe we should wait to the morning as it may keep her awake but as the pain wakes her up in the middle of the night decided not to wait.

Catherine
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi Catherine, sorry I missed this till now. I hope the pred can get her back on track quickly. I'm a little surprised there's been no mesalamine(Pentasa, Asacol) prescribed as it will take a while for the Aza to reach therapeutic levels. Good luck!
 
Catherine

Catherine

Moderator
Mark

Specialist said were two plan of treatment.

Slow and steady or aggressive.

This is the aggressive plan.

Watching TV with Sarah who is in severe pain and using heat pad and has taken medication.

Maybe that why we have a review in two weeks. At this stage they are less concern about the Crohn's and more concerned about the continue weight loss which now up to 12 kgs. Since 7 kg since Christmas.

Catherie
 
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Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hi Catherine, the pred should kick in quite quick and it really hits the inflammation so hopefully Sarah will soon start to feel better, it also usually increases the appetite so hopefully she will start to regain some weight as well. It does look like they have a good plan in place so fingers crossed!! Let us know how she gets on.
 
Catherine

Catherine

Moderator
Thanks was told the main side effects are increase appetite and weight gain. Very goods side effects in her case and I think this was one of the reason they pick this med. Dietian one 1 kg of weight gain a week, since seeing her on Tuesday has lost 1.5 kg.

Catherine
 
DustyKat

DustyKat

Super Moderator
Hey Catherine,

I'm relieved that you now have solid answers and a plan of action.

Since Sarah has ileum involvement, and likely terminal ileum, it may be an idea to have B12, Folate and Vitamin D added to one of blood tests she has in the next couple of weeks, if that is possible.

The treatment plan is solid and similar to what my son was prescribed when he was diagnosed. I hope Sarah responds quickly and is soon feeling on top of things again. :)

Dusty. xxx
 
Catherine

Catherine

Moderator
What's terminal ileum??

I already have orders for the next two lots of bloods. Specialist doesnot think level will have changed from 25 december when all but d were done.

Will ask about at review in two weeks.

Dusty did you go private. This is a very expensive illness.
 
DustyKat

DustyKat

Super Moderator
The terminal ileum is the last part of the small bowel. Your Sarah has what is called ileocolitis, it is the most common type of Crohn's.

We do have private insurance but the only time I have used it is when Matt had his endoscopy/colonoscopy at the GI's day surgery unit. I have had no need nor want outside of that. My Sarah was diagnosed on the operating table, during emergency surgery, at the local hospital and just after Matt was diagnosed he developed complications that were dealt with at the local hospital and then RPA in Sydney.

Dusty. xxx
 
Catherine

Catherine

Moderator
Thanks. Think we are going to pass the Medicare family net early next month and cost wise thing as should get easier.
 
Catherine

Catherine

Moderator
Sarah seems much better today. Much more energy now not sleeping all day. Has began doing her holiday homework. I think she can see light at the end of tunnel. Asked about going to school tomorrow, asked her to consider giving it one more day, as this is the first pain free day (maybe pain free is the wrong word, just maybe bearable pain is a better description) but no severe pain.

First follow up blood test on Friday.
 
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Angrybird

Angrybird

Moderator
Location
Hertfordshire
Glad things are taking a step in the right direction :) Definetly agree about giving it another day before going back to school, at least then she only goes back for a couple of days and then has the weekend if she does then start to feel a little weary.
 
Crohn's Mom

Crohn's Mom

Moderator
Happy to hear that things are starting to turn around for Sarah, and the pain is lessening. I also agree, one more day home to rest can't hurt :)
 
DustyKat

DustyKat

Super Moderator
That is fab Catherine! I so hope Sarah continues to go from strength to strength! Fingers, toes and everything else crossed!

Dusty. xxx
 
Catherine

Catherine

Moderator
Sarah is having a couple of periods of pain each day no where of severe an before start of treatment. She felt very sick after school yesterday maybe ot was due to walking home im the heat.

Now the big question Sarah wants to start swimming again. I have said she needs to be 50 kg before I will allow it. How soon is too soon.
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
That's really good news! With regards to the swimming I would agree that waiting for a higher weight gain would be safer. If she does this has a school thing is it worth having a chat with the swim coach to see what they would recommend?
 
Catherine

Catherine

Moderator
My daughter is a competive swimmer and would be like to be back swimming with her squad who train up to ten times per week. They swim for two hours and 4-5 km per session.

I think weight and hemogrobin levels are important. Will discuss with specialist.
 
Catherine

Catherine

Moderator
Had specialist review, will stay on 30mg pred for least another week, wants to get the periods of severe pain to go away. Dr commented how much better and brighter she looks. Imflammatory markers are still very high and but specialist believes this is because Sarah's Crohn's disease has come chronic due delays in find cause of anemia.

Agrees with me that Sarah should gain more weight before resuming swimming. Concern that if swimming is restarted too soon will result in weight loss.

Happy with weight gain of 2.5 kg in two weeks.

Review again in two weeks.

Catherine
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Thanks for the update. Sounds like things are moving in the right direction:) I hope the bloods come in line and the anemia gets corrected! Will she have bloodwork again soon?
 
Catherine

Catherine

Moderator
Trying only to do weight weekly, due on Thurdsay. Had a little bit of pain last night.
Hemoglobin level still sitting at 90. Intending to do swimming session on Friday morning if weight is above 48 kg. Now having trouble getting to sleepass not tired. Is this the Pred. Still can't believe the change is her from a month ago.

Catherine
 
M

M2M

welcome Catherine ; my daughter was diagnosed last year. I swear its as hard on the mom .. I am glad to hear your daughter is doing better and gaining weight. that is always a good thing
 
DustyKat

DustyKat

Super Moderator
Hey Catherine,

Sorry I haven't been back until now!

It is so good to read that Sarah is making progress! :)

Pred certainly can cause insomnia. Is she taking the full dose in the morning? Even when doing this some people still have loads of energy even at the other end of the day.

How is her weight going? I know how long those weeks are when you are hanging out to see them gain weight!

Dusty. xxx
 
Catherine

Catherine

Moderator
Yes, 5 am but the alarm went off at 4.00 am. Swum for hour from 5 - 6 am, 1.6 km. Didn't seen tired afterwards. Is this effect of the Pred?

Catherine
 
Catherine

Catherine

Moderator
This has been a mix week. Two one hour swimming sessions. Weigh steady or slight loss.

Saw gi yesterday, she happy as there has been a increase in weight since last visit two weeks. Learnt more about tiper and may having been doing it to quickly. Have gone back to 25 today due to pain. Gi said if get pain go back to last safe level and wait couple of days go down again.

Talked about going to lower class of maintence med after off pred for one month and healthy. Also the fact that she has mild disease and there us a small percent of patients who only have one period of active disease. Discussed possibilities of going of all meds some time in the distance future, if we go this way it will summer hoildays of 2013/2014.

Hemoglobin still low 90s stable.

Testing vitmin d, expects Sarah will test low. 2/3 of her patients of all ages are too low for d10 mins in the sun in summer months out of the middle of the day, 20mins x 2 in winter.

All in all good visit, review in four weeks
 
DustyKat

DustyKat

Super Moderator
Thanks for the update Catherine! :)

It's good to hear that things are setting somewhat and heading into positive territory. I hope you can get the Pred taper sorted and she is soon in remission. :hug:

Thinking of you. :heart:
Dusty. xxxxxxxx
 
Catherine

Catherine

Moderator
Sarah is in pain, has stay home from school day. She says that pain is not that bad but 12 months ago it would have keep her in bed all day.

Currently trying to decide whether to take the pred dose back to 30mg. The specialist doesnot what her in pain. Sarah doesnot want the taper to go for to long.

She doesnot seem to have any bad effects from the pred. She will do what I think is best.

Catherine
 
Catherine

Catherine

Moderator
Sarah is in pain again. Need to get into doctors who will give medical certificate today. Going back to 30mg pred today and prune juice.
 
Catherine

Catherine

Moderator
Just back from the gp. Sarah had a slight cold last week (nothing more than runny nose). Blood test from Saturday shows she is fighting an infection and this maybe the cause of stomach pain. Glands in the neck are up. Come back in a week if she still has stomach pain, as will try antibiltic.

Hemoglobin up to 98 or 9.8 highest it has been in 6 months.
Vitmin D 60 (normal above 40).

Wrote medical certificate and see only need to ring if we need one for tomorrow.

Catherine
 
DustyKat

DustyKat

Super Moderator
I hope tweaking the Pred takes care of the pain and the cold settles ASAP so she is feeling on top of things again, bless her...:hug:

Good luck!

Dusty. xxxxxxxx
 
Catherine

Catherine

Moderator
GI rang yesterday to discuss results

Faecal calprotectin test for crohn is above 500, she says this is good as we maybe able to use this test to monitor disease and not have to do as many colonscopies.

Vitamin D level is 60 this is lower normal but should start supplement with Vitamin D and calcium.

Think stomach pains are due to taper being too quick, back on pred 30mg and ring her in a week to discuss. May also need to discuss increasing aza dose.
 
Mom2oneboy

Mom2oneboy

Location
I'm a southern girl
Hi Catherine,

Just read Sarah's story. So sorry that's she's been through so much with her tummy pains. I hope they continue to improve and make an exit real soon. Wow, 4am for swimming? She must really love it to get up that early! Not much would get me out of bed at that time of day :)

Shelley
 
Catherine

Catherine

Moderator
We have bad week, sarah has missed two days of school with pain.

Spoke to gi today, doesnot want to increase pred above 30mg that she taking now. Best noto increase aza until TPMT results are back. Would like to avoid colonscopy at this stage.(the fact it was even mentioned scared me)

Because I couldnot get to her office to pick up further blood request she rang gp to get him to order them. Now having TPMT, full blood examination,iron study, esr, crp, urea,ekectroytes,creatinine,liver function test, b12 and rbc folate..

On to top of a bad day, my.youngest Kerry is 13 tomorrow and I have forgotten her birthday. Sitting here trying work out how fix this while getting sarah to blood tests and having to work on my day off.

This a bad mother day.
 
DustyKat

DustyKat

Super Moderator
Oh Catherine, I'm so sorry to hear that Sarah has had a bad week. :hug:

I hope the blood tests point you in the direction as to what may be going on. Good luck!

:hang: Mum, you are doing a fab job! You aren't a bad mother hun just a very concerned and overwhelmed one. It is so easy for the time to go by and for you not realise the days, dates or months, the days just blur together. Not to mention that is hard to get your head into that space when you have a child that is ill. I have been there too, twice. The first time was in July 2006 and my Sarah was diagnosed and in hospital following emergency surgery. Matts birthday fell right around that time and to say it was low key would be understatement. The second time was December 2010 when Matt was diagnosed. The month was disrupted enough but then he ended up in hospital for the 8 days prior to Christmas, we only managed to break out Christmas Eve so needless to say Santa was a little late that year!

I hope you are able to have a lovely day with your daughter tomorrow. Thinking of you and wishing you nothing but the best. :heart:

Dusty. xxx
 
Catherine

Catherine

Moderator
Thanks everyone for your support.

Although Sarah is having period of severe pain. The crohn's meds must be working. Sarah is no longer anemia she hemoglobin level is 11.5 g\dL (11.5 -16.5). The level on Sarah first test back on 07/10 was 11.4.:ybiggrin:
 
DustyKat

DustyKat

Super Moderator
Thanks for the update hun!

I'm so sorry to hear that Sarah is still having episodes of pain but so good hear that her bloods are improving...YAY!

Did your daughter's birthday go okay?

Dusty. xxx
 
Catherine

Catherine

Moderator
Kerry had a great birthday. Got present shopping done night before.

Trying to think very postively this is the first time hasn't been anemia in least the last 2 years, and 9 months.

GP written script for flagyl, just need to check with gi that the also believe sarah has a infection.


White cell count is up and so is neutrophils and esr.

Iron studies are still low.

Ferritin 56 ug/L (15-165)
iron 2 umol/L (7-27)
transferrin 2.7 g/L (2.5-3.8)
transferrin sat 3 (13-47)

Comment
Low iron saturation may be seen in inflammatory disorders.
 
DustyKat

DustyKat

Super Moderator
It is fab to hear that all went well with Kerry's birthday! :):):) Well done Mum! :thumleft:

I hear you Catherine, I know how good is to see no asterisk when there has been one for so long. :hug:

Have you found out any more with the Thalassaemia?

Dusty. xxx
 
Catherine

Catherine

Moderator
All the common alpha thal,mutation have been ruled out. Also her new full blood results no longer show any reason for testing. The reason testing was done in first place was because iron supplements didnot improve iron studies or hemoglobin levels after 6 months
 
Catherine

Catherine

Moderator
Update

Saw Sarah gi yesterday. Continue with taper with aim of getting of pred. Blood test back ok, so has increase aza to 75, blood test in 10 days. Weight is 51 kg. Inflammation must down as hemoglobin has improved so much. She had no malsorption issues. Don't increase supplements as it will not improve blood iron as ferrin level ok.

Review in two months.

On side note sarah is now a learner driver
 
DustyKat

DustyKat

Super Moderator
Thanks for the update Catherine. :)

Sounds like things are chugging along nicely! YAY! I so hope it all continues that way. :thumleft:

And mega congrats to Sarah on getting her L's, well done! How are you coping Mum! :lol:

Dusty. xxx
 
Catherine

Catherine

Moderator
I coping well. My husband is going to teach her to drive.

So happy her disease is starting to match up. Eg she has mild crohn's. Life is getting back on track for us and Sarah
 
Catherine

Catherine

Moderator
Life is good, Sarah is feeling well and we have just began the two week break between the summer long course swimming season and winter short course season. No early morning starts as all three girls have break as kerry has just moved up..

Its like a holiday.
 
Catherine

Catherine

Moderator
Sarah went down to 5 pred on saturday. She had a headache on and off all day. Same thing happen when she went down to 10.

She is up to 55 kgs.

Swimming four 2 hour swimming sessions per week.
 
Catherine

Catherine

Moderator
Sarah has gone back in 10 pred today. She had stomach pains and headache on waking this morning.

The headache and stomach pains went away after taking the high dose of pred this morning.

Was to sick for swimming this morning.

Wonder whether she should try going to 7.5 pred next, maybe the drop to 5 is too much.
 
Adil

Adil

Hey Catherine, i hope Sarah's stomach aches and headaches go, hope she'll be back to swimming soon. I wanted to ask, since i had to start on steroids a bit over 2 weeks ago for weight gain as well, how much weight did Sarah gain in her first 2-3 weeks of steroid treatment? I'm not sure if my weight gain is normal, i used to weigh 56kg, i dropped to 40kg in 7 weeks during the time before i was diagnosed
 
Catherine

Catherine

Moderator
Sarah gain a kg a week in the first couple of weeks on pred. She started pred at the start of feb and has gained back 10kg in 3 months since. She was also having two serve of ensure daily plus regular meals. Now doing 8 hours of swimming a week.

Sarah went back to 10 pred a day and stomach ache went away. I think she will have some head aches to she get off pred. Going to try 7.5 from saturday.
 
Adil

Adil

Yeah, the preds are a pain, but keep trying, Sarah'll definitely get there. The weight gain is going a bit unusual for me though, it might be because im on a liquid Modulen diet but i'm gaining 0.5-1.5kg daily for the past few days. What pred amount was she on during her first week or 2?
Good luck btw
 
Adil

Adil

I'm on 40mg, i used to be normal around 56-57kg but i dropped to 40kg in 7 weeks but now im going back up, im nearly 50kg now again and it's only been 2 weeks. I take it the transition from lowering doses of pred is hard?
 
Catherine

Catherine

Moderator
With most people they can tell that the crohn is improving as the BM decreases but Sarah's has never had diarrhea as a symptoms of her crohns. The only thing her gi has to go on is pain. She also doesnot appear to have any of the nasty side affects from pred.

She is four weeks out from her mid year exams so also a little stressed.

Her pre crohn's weight was about 56-57kg and her gi want her weight to settle at somewhere between 60 - 65 kg.

I have read here somewhere the weight gain is quickler for anyone very unweight. Maybe that why you have gain so fast.
 
DustyKat

DustyKat

Super Moderator
Thanks for the update hun! I hope all continues to go well with the taper! Good luck...

:goodluck::goodluck::goodluck:

Dusty. xxx
 
Catherine

Catherine

Moderator
Back up to 10 pred due stomach pain. the stomach pain is less but it hasn't gone away. We will try to contact gi today.
 
DustyKat

DustyKat

Super Moderator
If the symptoms stabilise I would leave it but should they continue to worsen I would have a chat with the GP.

Good luck! I hope it all settles for your girl...:hug:

Dusty. xxx
 
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