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We saw the specialist that's been treating my daughter for the last few months. He finally admitted he wasn't the doctor to treat her all along and he didn't have any idea what he should give her because of her age and side have effects.
He wished us all the best for the future.
I'm so angry we wasted all these months when she could have been treated properly from the beginning .
Any way i hope everything goes well on tuesday with the pediatric gastro.
I also want to thank everyone especially Dusty for all the advice and information i have received.
Very much appreciated.
 
How awful - at least he admitted it - but perhaps it would have been better had he mentioned this months ago - good luck for tuesday - I hope she gets the advice and treatment that she needs xxxx
 
Good lord! I bet it was all you could do not to punch him fair in the face! Grrrrrrrr. Yes, at least he finally admitted it but he still gets the...:voodoo:

Good luck for Tuesday! Fingers, toes and everything else crossed...:goodluck:

Dusty. :heart:
 
Today we saw the doctor and yes she was a pediatric GI .

I was a little bit dissapointed.

I was hoping she'll try her on different medication after
explaining that she kept getting better after stopping
sulfasalazine but she told me it wouldn't be the sulfasalazine
causing the diarrhea and to put her back on them.

Any way she did a blood test (the first since she has been
diagnosed) and said she will contact me to tell me if i should
start reducing the prednisone or not .We will be reducing by 5mg
every week.

She has also referred us to Randwick childrens hospital where she
also works . Appointment is to be within 6 to 8 weeks.
Too long to wait if things dont start improving.

Today i feel the same as the day she was diagnosed very afraid.
 
I am so sorry the appointment didn't go as well as you were hoping. Seems wrong to give her the same medication when it clearly isn't working. Sometimes I just don't understand these doctors, they never seem to believe that us moms know anything when we know our kids best! If the diarrhea starts again try phoning the GI again and letting her know. The whole point of meds is to make them better not worse. Is there anyone else you can try? Another GI doc at that kids hospital?
Hope the meds work and you can stop worrying!
 
I am sorry that they didn't change the meds - we put all our hope and faith into these Drs and we have no choice but to trust them. If she doesn't improve or if she gets even worse then hassle the Dr constantly until she listens to what you say - thinking of you and good luck xxxx
 
Oh my, that is disappointing. :(

I think it might be an idea to start a diary right now before recommencing the Sulfasalazine. Have a look at the one in the wiki for suggested inclusions...

http://www.crohnsforum.com/wiki/Diary-Inclusions

...get a baseline and then if symptoms worsen when the Sulfasalizine is reintroduced I would plonk the book down in front of her and say...explain that then please! Particularly when diarrhoea is listed a side effect.

Have you seen this link re the IBD unit at the SCH? If not this is it...

http://www.sch.edu.au/departments/crohns_colitis/

...I would give the outpatient clinic a ring and have a chat to them.

Dusty. xxx
 
ERGH! Frustrating:ymad:

I second what everyone else said and great suggestion Dusty (now don't go getting a big head).

The doc is new to the case so sometimes you just have to play nice nice and let them do their things and see for themselves that something isn't working. Who knows maybe just maybe she is right...Crossing our fingers over here that things go up from here. The important thing is you are with the right kind of doc now!

Hang in there mama!
 
At least you now have the right type of doctor. If the d starts again I would ring a leave messages with the GI reception.
 
I have kept a diary since she started medication.
There has been no problems since i stopped the
sulfasalazine so now all i can do is wait and see
what happens.
 
It's been 2 days back on sulfasalazine so far so good.
I'm starting to get worried about her back. I did mention
it to the doctor, she said its probably from her inflammed
bowel. I think we should see our GP but considering she
had a blood test i might have to wait till tuesday for the results.
Also the doc kept asking if any family members have had
kidney stones. What would that have to do with IBD?
 
Last edited:
Blood results should be available the next day unless it is something out of the ordinary.

I hope all continues to go well with the sulfasalazine. Fingers crossed!

If there is disease in the terminal ileum it can affect the reabsorption of uric acid out of the blood and back into the bowel. This resulting increase in circulating uric acid can make sufferers more prone to uric acid kidney stones. Also those with small bowel disease can be prone to oxalate stones because of fat malabsorption and it in turn allowing for the absorption of oxalate and it then being deposited in the kidney's. Generally speaking those with ileal resections are at the greatest risk.

Another thing to consider if the terminal ileum is diseased and kidney pain is present is hydronephrosis. Both of my children suffered with it to varying degrees with Sarah's being worse than Matt's. What happens is the swollen and inflamed bowel presses against the right ureter (the tube that drains urine from the kidney into the bladder) causing it to obstruct. This in turn means urine backs up into the kidney causing it to swell and become painful. It is something that will resolve when the inflammation is treated but it should not be left for extended periods of time as permanent kidney damage may result. If hydronephrosis is a possibility and imaging was going to considered I would not recommend an ultrasound as it can be very painful, it certainly was for Sarah, but rather a CT or MRI.

Dusty. xxx
 
Thanks Dusty your not a doctor by any chance?
You seem to know more than our doctors.
My daughters terminal ileum was not affected.
With the blood results, this doctor only works at this practice on tuesdays
so thats why we can't get the results back sooner.
Also diarrhea is back, which proves it is the tablets.
Take care doc
 
:lol:, no, just someone that eats, drinks, s***s and breathes CD. :wink:

:( So sorry to hear the diarrhoea is back. I wonder when the doc will make the connection??? Grrrrrrrrrrr.

Good luck for Tuesday and in the meantime I hope your girl does okay, bless her. :hug:

Dusty. xxx
 
I'm sorry that things aren't goin so well. can you ring the GI's practice and as them to get a message to her whever she works on the other days? Just an idea.

Take care,
LilyRose
 
Yesterday my daughter woke up with chest pain and pain in back right behind the chest pain she took some panadol and it went away for a few hours only to return.
Same thing happened today it keeps coming and going.
She also has a sore throat and keeps getting hot flushes.
Could this be a side effect from prednisone or sulfasalazine?
 
Hi just an update.
Blood tests came back normal no sign of inflammation, only low in vitamin D.
So now the doctor is saying it is the sulfasalizine causing side effects.
Finally someone listened to me.
Now she is trying salofax?
I hope this works.
Take care everyone
 
I'm glad she saw it your way...sorry your daughter had to suffer longer to prove it but at least you are on the right track now!
 
Well hallelujah! Thank goodness she finally saw the light! Good work Mum! :)

That would be Salofalk. Sulfasalazine is also in that same class of drug but is the older breed of the 5ASA's and does tend to have more side effects. So hope the Salofalk does the trick hun...:goodluck:

Dusty. xxx
 
Hi
My daughter started salofalk tablets on friday and now the diarrhea and
abdominal pain is back.
I dont know what to do we haven't even got an appointment made yet at the
childrens hospital.
Why would they give her salofalk if it is in the same class as sulfsalazine?
This is starting to drive me crazy
 
Damn it! :( I'm so sorry to hear that Mum. :hug:

They may have tried the salofalk because it is one of the newer class of 5ASA's. Some people do find that a switch between drugs in the same class can make a difference.

I would ring the doctor at the first opportunity and tell them that you are back to square one with this drug, you are sick of watching your daughter suffer and you want them to ring and get her in for an appointment at the children's hospital ASAP. The other option would be to circumvent everything and everyone and take her to A&E at the hospital.

Thinking of you hun, :heart:
Dusty. xxxxxxxx
 
Thanks Dusty

I didn't get any sleep last night iv'e been worrying all night.
I feel like we're going around in circles.

It's been 5 months since diagnosed with no end in sight

I think i will ring the hospital monday and explain what
has been happening.

I just can't beleive i have to keep pushing these doctors
so my daughter can get the right treatment , they just don't
seem to care .Then again maybe they do care,
it might just me being impatient

Any way i'm off to have another coffee to keep me awake

Take care
 
Also i could't beleive the original price of these tablets $297 FOR 1 month
lucky we're on a health care card and only paid $5.80
How are people supost to afford these?
 
:hug::hug::hug:

I would ring the hospital too hun. Taking the sort of control you are can often help lessen the worry too, it gives you focus, a goal to aim to toward. Also don't take no for answer. As much as it sucks sometimes you have to stand your ground and say until you do x I am going nowhere. When my daughter was undiagnosed I found myself in that situation, she had been admitted the night before via A&E and when the paediatrician came the following morning and he started fluffing about I told him I suspected it was Crohn's. He dismissed it on the spot so I told him until he proved to me it wasn't we weren't leaving the hospital.

You aren't being impatient Mum, after all you are the one with her 24/7 and living this not the docs. You know her better than anyone else.

As to the meds, deep breaths! :lol: They always put the full price on the label. It is covered by the PBS so those not on a health care card will pay $34.00. :)

Dusty. xxx
 
Today i rang the doctor and was told i should give meds a chance
to start working about 3-4 weeks before she decides if she will
change them even though i told her diarrhea had come back since
starting salofalk.
I'm starting to get very frustrated with these doctors.
 
Don't blame you for being frustrated!!! :angry-banghead: I think these doctors forget that these are our children they're taking care of and that we are at their mercy! It truly is maddening!

I hope you begin to see some improvement soon!
 
Don't worry i sure wont be waiting that long.
If things are still the same by next week i'll be
contacting her again.

Last night she had no diarrhea only small ''plops''
and still a bit of abdominal pain.

Also i don't know if this is related but she's been
getting nose bleeds since she has been diagnosed,
it might just be a coincidence.

Take care everyone
 
Upsetmom

Does daughter have iron defiiciency anemia? Sarah also has a lot of blood noses, which increase when her hemoglobin is low. Blood noses are listed as a symptom for anemia.

They also could it cause by the cold weather and heating in the homes. My youngest daughter has had a least one nose every day for last few days. (She doesnot have crohn).
 
Catherine
My daughters blood tests were all good 2 weeks ago
she was only low in vitamin D.
These nose bleeds seem to happen once a week, it only
bleeds from one side i keep forgetting to tell my GP.
We don't put the heater on very often as she seems to get
too hot
 
Hi UpsetMom, I think its important that you make sure she is eating the right foods (consider reading the specific carbohydrate diet), find a reputable doctor through the CCFA and follow what they have to say (maybe looks for ones that are doing research or participating in research studies). I was diagnosed when I was 20...and they immediately put me on Prednisone. But I think my disease was too challenging to deal with for a few of my GI's that I had so I bounced around a few clinics until I found "the one". My last GI left me on 40mgs of prednisone for over a year...did havoc on my body. My most recent team tapered me off and enrolled me in a wonderful trial for a drug called Stelara which has VERY limited side effects and has actually done wonders for me. Also maybe take her to a CCFA event it may give her moral support. Good luck!!!
 
Upsetmom

Then the blood nose, is most likely nothing to worry about. Is she getting the blood nose when she feeling hot.
 
swing9cats
When she was diagnosed i asked if there was anything
she should't eat and was told let her eat anything she
wants but i have been keeping an eye out to see if any
foods don't agree with her but can't seem to make a connection.

Catherine
I'm not quiet sure i'll have to pay more attention now that
you've mentioned it
 
Re: nose bleeds...has she had bloods done for B12, Folate and Iron Stores? You can have a normal Haemoglobin but still be anaemic. If they haven't been done I would start here.

It is possible for Crohn's to manifest in the mucous membranes of the nose and it will manifest as nose bleeds. This is a pretty rare EIM though.

Good luck hun!

Dusty. xxx
 
Dusty
i'm not sure if she had them test done
all i know is she told me she wasn't anemic
As far as i know was she was checking everything
 
They aren't tests that are run routinely like a FBC, LFT's and UEC's are. I would ask for a copy of all the blood results and go from there.

Dusty. xxx
 
My daughters diarrhea and pain has been getting worse,
This morning i rang the childrens hospital to find out
when her appointment is i was told the IBD nurse
would ring me back. 6 hours later i'm still waiting

At lunch time i decided to ring the doctor even though
i knew she wasn't working there today. I asked where
i could get in contact with her as my daughter was getting
worse and i decided to stop her tablets and didn't know
if that was the right thing to do. The secretary told me
that this was her day off and she wasn't working any where
today ,then she asked for my daughters name when i told
her she said hold the line i think i might have the dates
mixed up she might be working after all.
Any way doctor rang me and said stop salofalk
and IBD nusre will ring me when she's not busy to make
the appointment. How long are these people busy i've
been waiting all day .
 
I would ring back and remind them you have been waiting all day and you have an appointment in an hour. Since it is Friday afternoon you will hold the line while they find out when your appointment is. :wink:

The nose bleeds. If the nurse does come on the line to you ask her. If not it will be okay but did these start before the Salofalk was commenced or at about the same time?

Dusty. xxx
 
Just rang the IBD nurse and was told i was
just about to ring you. Yeah right.

The nurse told me sometimes it take a few
medications till you get the right one

My daughter has an appointment on 2 august
 
I bet she had the phone in her hand...not! :voodoo:

Indeed it does take many people quite a bit of trial error to find the medication or combination of meds/therapies. Remind them of that if try persisting with the wrong medication in the future! :eek2: :lol:

Roll on the 2/8!

Dusty. xxx
 
Well you seem O.K. with this all but I am VERY frustrated for you and at the risk of poking a sleeping mama bear:

1 - on the whole phone thing YEAH RIGHT!
2 - sometimes it takes more tries at different meds to find the right one..yeah but two tries at one that I already told you didn't work?
3 - 8/2??? Serious? I was already in there and you chose to use a med I told you didn't work...my daughter is worse and now you want me to wait until 8/2? I played nice nice now you play too! ERGH!!!!!

You truly are a saint for being so calm with all this.

Maybe I am just a high strung city type?
 
crohnsinct
I am a very patient person i have been dealing with doctors
for my sick husband for the last 4 years and have realised
that you have to push these doctors but i'm still learning
to be a bit more agressive, i've come a long way since i
joined this site
 
crohnsinct said:
Ha! If you teach me to be more patient
Click to expand...


If you could teach our dear crohnsinct to be more patient, I'll learn how to be less country. It ain't going to happen! We love her just the way she is!:kiss:


Hopefully soon you'll figure out the medicines.
I hope your apt. goes well in August.

Farmwife
 
Last edited:
Hi, just been catching up on your thread as I was away. Sorry to hear you've been having so much bother. I know what it's like to be so frustrated with doctors!! Manys the time I've been carrying my phone around where ever I go only to wait and wait!
Glad your daughter is feeling better off the medication. Hope they manage to find one that suits soon. We are currently inbetween meds as my son's liver couldn't deal with the Aza.
 
It is so good to hear that things have settled again off the meds! :):):)

Now to get her onto a treatment that will provide lasting peace and relief! Bless her...:hug:

Dusty. xxx
 
WOW what a day

Didn't believe the excellent service we got at the IBD clinic.
We had been so use to seeing doctors that always seem to
rush us out so i was shocked to be in there for 2 hours.
Any way the plan is to try pentasa and if that doesn't work
the next step is imuran.
I was told that if she had another
flare that she would be put on flagyl instead of pred

Also the dietician came to see us and i asked if there was
any food to avoid and she said no, only avoid fibre when
in a flare

They also want to do an MRI of the small bowel but we were
told the waiting list is 6 months so i might contact my local
hospital to see if i can get her in sooner

I hope everyones been well
 
Last edited:
Not to contradict the dietician, but you may want to reduce or limit dairy and gluten when she is flaring. These molecules are very large and hard for the body to digest. Our dietician, who specialized in treating people with severe GI problems and feeding issues, told us that and it seems to have been born out by our experience.
 
Just an update
My daughter was on pentasa for a few days and developed a sore throat and chest pain. I was told to take her off it and see how she goes for a few days and then to try again. Well she went back to normal for a few days and then all the symptoms came back plus diarrhea so i have stopped till we contact the nurse on monday .Do they eventually find the right medication i'm worried they won't . What happens if she has side effects with everything they try?
Thanks take care everyone
 
Sorry to hear your daughter couldn't take the Pentasa. I'm afraid I'm not much help with meds - my son is off Aza and not yet on anything else - I am burying my head in the sand :biggrin:. I am sure they will find the right med for your daughter, it may just take a bit of trial and error. Good luck with her treatments.
 
Hi upset mom,
I just wanted to say I understand what you are going through. My daughter has had bad reactions to a lot of the medications as well. Methotrexate and LDN were the only two she has not had reactions to although the methotrexate did stop working for her after her second year on it. Sometimes it takes time to find the right medication hang in there i am sure you will find it.
 
Hi upsetmom,

How did things go on Monday?

It can be a fair bit of trial and error for some to find the drug or combination of treatments that best suit them and their disease. You will get though hun, I know it's hard not to worry and despair when you see your child suffering but it will be okay...:hug:

Thinking of you, :heart:
Dusty. xxx
 
Its been a disaster Dusty

I rang the nurse first thing monday morning and she told me she'll talk to the doctor and get back to me. Well i waited all day with no call . Tuesday i got a call saying the doctor will look at her file and he'll make a decision.
Wednesday i kept calling and leaving a message on her answering machine but i never got a call back so that night i decided to give her the pentasa before bed instead of the morning. Well she woke up feeling ok but last night her poo was hard and there was a white line through it and when she wiped it was only blood . I still gave her the pentasa before bed last night. She woke up this morning feeling good. I'm going to ring again this morning

take care
 
Good lord! That is awful Mum...:hug:

Do you have another number to ring other than the nurse's?

Can you ring the doctors office directly and speak to the staff there?

I know you won't be speaking to a nurse but you can still plead your case. Tell them you are at your wit's end because your calls aren't getting answered. Tell them you don't know what to do and your daughter is suffering and it shouldn't be up to you to have to make treatment decisions. Tell them you will hold the line until someone with an answer speaks to you. Tell them it is unacceptable. It is unfortunate but it is often the squeaky wheel that gets the oil, it shouldn't be that way but often it is. :(

Above all else good luck!

Dusty. xxx
 
The only number i have is from the nurse no doctors numbers
I've already called and left a message. And here i was thinking we finally found a place where she would get treated properly
I'll update when i when i know something
 
Last edited:
I finally received a call
The doctor still hasn't looked at her file.
I told her about trying the pentasa at night and her hard poo and blood
well apparently its a good sign that she hasn't got a sore throat or diarrhea.
I've been told to check her next poo to see if she's constipated and if she is to give her 20mls of parachoc and call back on monday
Also i have to try giving her the pentasa a little bit earlier
 
Well hallelujah! But it sucks that the doc hasn't looked at the file! Ugh! :voodoo:

Now I wouldn't in a million years wish this disease on anyone but sometimes just sometimes I wish docs and their staff walked a mile in our and our children's shoes and then lets see how quickly the phone calls and follow up would be returned! Grrrrrrrrrr. Mind you have alluded to something along those lines with health professionals on more than one occasion myself! :shifty:

Let us know how you getting on over the weekend Mum. Good luck!

Dusty. xxx
 
I tend to have little patience.
I also keep calling since every call is logged and so is the fact of when they respond:hallo3:
So no response- I call again.
The good docs call back-
the not so good ones......well
 
Just an up date
My daughter is still on pentasa and doing ok apart from the flu. No diarrhea. She has a sore throat but i'm not sure if it's from the flu or the pentasa. We'll have to wait and see till she gets over the flu. Tomorrow i have to increase her
tablets . So far so good :)
 
Thanks for the update hun! :)

It's so good to hear things are going well, except for the flu that is! :voodoo:

Sending loads of luck and well wishes that all continues to head in the right direction!

Dusty. xxx
 
Aw poor pumpkin...poor mommy! So hard when they get something like the flu and you are trying to sort things out..don't know what is a symptom of what. I hope the flu goes away quickly and she is feeling tip top soon!
 

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