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06-03-2012, 02:04 AM   #1
upsetmom
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Need some advice

My 14 year old daughter has had the flu, diarrhea and bad abdominal pain for over a week. Friday i took her back to the specialist and he did a stool test to check for infection. He said if there was no infection she will be back on prednisole. In the meantime if she gets worse i was told to take her to emergency. Well today she had a fair bit of blood in her diarrhea. Is this normal with IBD ? Should i be worried? Her abdominal pain is not much worse. We go back to the doctor in 2 days. .She has been taking sulfalazine, buscupan for pain, lomotil for diarrhea (which is not helping). Dont know what i should do in the mean time.
06-03-2012, 02:46 AM   #2
DustyKat
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Hi upsetmom and

I'm so sorry to hear about your daughter. My daughter was also diagnosed when she 14, tough age to have be dealing with this.

What diagnosis has your daughter been given and how was she diagnosed?

Blood is not unusual when flaring and particularly if there is large bowel disease but I would have to ask, is this a new symptom for her? If so then the doctor needs to be informed.

How long was her course of Prednisone and when did she complete it?

If the pain and bleeding have stabilised and they don't increase in intensity and amount I would sit on it until you see the doctor again but be sure and document everything that has been happening over the weekend. If either of these symptoms worsen or further appear, like vomiting, I would have her seen to there and then.

I hope things settle down hun. Good luck and let us know how you are getting on!

Dusty. xxx
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Last edited by DustyKat; 06-03-2012 at 03:12 AM.
06-03-2012, 03:50 AM   #3
upsetmom
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She had a colonoscopy 2 months ago and was diagnosed with unidentified colitis (possibly crohns) her whole bowel was inflammed. She was then put on prednisole for a month then sulfalazine she was ok for a few weeks.Its so heartbeaking watching your child suffer and theres not much you can do. Thanks for the advice

Last edited by upsetmom; 06-03-2012 at 04:05 AM.
06-03-2012, 04:22 AM   #4
DustyKat
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Oh Mum you are so right, there is nothing more heartbreaking than watching your child suffer and all the while knowing there is nothing you can do to take it away from them and make it your own.

One month of Prednisone is in my mind about a third to half of what a normal course would be. Perhaps the course wasn't aggressive enough to control the inflammation in the first place??

Do you know what the biopsies from the scope showed?

Did they tell you why the colitis is unidentified?

Sorry for all the questions!

Dusty. xxx
06-03-2012, 04:45 AM   #5
upsetmom
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Biopsy result reads: appearances of specimens are consistant with an active idiopathic ibd of uncertain type. The extent of inflamation and increasing severity from the caecum to the sigmoid colon would be infavour of uc but absence of active inflammation in the rectum is rather unusual in this context, Therfore, particularly in light of the granulomatous gastritis, the possibility of cd cannot be excluded. Clinical pathological correlation is needed.

This is what the report says cant seem to get any answers or information from the doctor. It took 8 months to convince him to do the colonoscopy he didnt seem concerned.
06-03-2012, 05:01 AM   #6
DustyKat
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Thanks for info.

I can see why they have thrown CD into the mix with the presence of granulomas in the stomach.

Is there any plan for further testing to try to determine one way or the other if it is in fact Crohn's?

I don't much like the sound of your doc, doesn't sound very proactive at all. Any chance of getting a second opinion? Is the specialist a Paediatrician or a Paediatric Gastroenterologist?

Dusty. xxx
06-03-2012, 05:11 AM   #7
upsetmom
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No plans for further testings. He is a colorectal surgeon she is his youngest patient. I have thought about changing doctors
thanks
06-03-2012, 05:21 AM   #8
upsetmom
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The doctor told me meds were the same for cd and uc.
06-03-2012, 05:23 AM   #9
DustyKat
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Now this is my personal opinion...

Surgeons are very good at what they do but they are not the doc to see for the ongoing treatment of IBD, a gastroenterologist is. I know your daughter doesn't have a firm diagnosis and to me that is another sound reason to see a gastroenterologist and not a surgeon.

Again, in my opinion I don't know why the surgeon hasn't passed you onto a gastroenterologist.

Sarah's first visit to a gastroenterologist was post diagnosis...long story! We live in the north west of the state and so chose an adult GI that was highly recommended and was closer to home but had I lived in Sydney, or close to it, I would have asked for a referral to the Sydney Children's Hospital.

Dusty. xxx
06-03-2012, 05:29 AM   #10
DustyKat
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The 5ASA's have preparations that target different areas of the bowel. 5ASA's are a more modern drug and are the metabolite of the much older drug Sulfasalazine. They are a mild drug that works topically on the bowel and yes it is used for both UC and CD as are all the other drugs.

Dusty. xxx
06-03-2012, 05:29 AM   #11
upsetmom
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A few times he mentioned that he was going to refer us but he never has i'll be asking for the referral when we go back in a few days
THANKS AGAIN
06-03-2012, 05:32 AM   #12
DustyKat
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I don't expect you to say exactly where you are but what general area are you in?
06-03-2012, 05:36 AM   #13
upsetmom
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Close to sydney
06-03-2012, 05:42 AM   #14
DustyKat
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Say no more!

Good luck hun. I hope you have solid answers and relief for your girl very soon!

Dusty.
06-03-2012, 06:50 AM   #15
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Sorry to hear your daughter is suffering! I would also hold off going to the ER if you see the doctor in 2 days. I agree with Dusty, it's worth chasing that referral - a GI specialist is much more up to date with all latest treatments and more sympathetic to what these children have to go through!! I don't see the GI very often - once every 3 months, but we have an IBD nurse on call Monday - Friday, a number for the childrens ward in case we need them and a local paediatrician that liaises with both the nurse and the GI!
Good luck with it - keep pushing, don't let them make you feel like you are over-reacting or being a pushy mom, we just want our kids to feel well!
06-03-2012, 09:40 AM   #16
Dazzafarr
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vancomycin + salazopyrin with a dose of diet:
Fish,veg,fruit following a follow up - ruling out other possible causes:
Bacterium colitis, CD etc.

Rectal bleeding is a symptom of colitis.
Always best to speak to GI when new symptoms arise.
A doctor isn't a doctor if he isn't interested.
Get a second opinion, maybe request for a referral for a decent doctor in your location.
06-03-2012, 04:17 PM   #17
my little penguin
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So Sorry you are going through this-
As others have said keep pushing- you know your kiddo best.
Even if the numbers seem ok but something feels off in your mom gut- keep at it.
DS also did pentasa for a month- no real help there.
We went on to other drugs including 6-mp.
Hope the GI can help you this week.
06-04-2012, 03:29 AM   #18
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Hi upsetmum,

And I can fully understand why you are upset. it is s hard to be suddenly faced with something like this.

I would also agree to see a paed garstroenterologist for the ongoing management. They would then refer back to a surgeon as needed.

I hope things imporve soon.
Let us knwo how you go.

Take good care,
LilyRose
06-04-2012, 05:46 AM   #19
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So sorry you have been through so much - I agree with everyone else you should get a referral to a paediatric gastroenterologist - good luck - thinking of you xx
06-04-2012, 06:21 AM   #20
upsetmom
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Hi everyone just an update on my daughter early this morning she had black bits of blood through her diarrhea. I gave her some lomotil and things seem to have settled down today. One more day till we see doc.
She has missed so much school this year she's worried she'll repeat.
thanks for all the advice

Last edited by upsetmom; 06-04-2012 at 07:00 AM.
06-04-2012, 07:03 AM   #21
Farmwife
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I just wanted to pop by and say hi.
Sorry to hear what's happening. I hope you get some answers from your doctor.

Welcome aboard.

Farmwife
06-04-2012, 08:35 AM   #22
Dazzafarr
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Upsetmom, dark colored blood usually indicates dried blood.
Hopefully the GI can help tomorrow. Goodluck!
06-05-2012, 01:03 AM   #23
upsetmom
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Hi everyone just got back from the doc.
My daughter dosn't have an infection so he has put her back on prednisole 50mg then decreasing by 10mg every 5 days and he has increased her sulfalazine to 3 twice a day.
We also got a referal to a gastroenteroligist might have to wait a few months to see him.
I hope things improve real soon.
thanks for all the advice
06-05-2012, 01:17 AM   #24
Dazzafarr
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I'm guessing by the few months that you are referring to centre of digestive diseases at five dock.
If you make a consultation you have to wait months.
If you call up and request a colonoscopy/endoscopy you get a small consultation before you get knocked out.
This saved me months of waiting! I only had to wait a few weeks
06-05-2012, 01:42 AM   #25
tots
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I am so sorry your daughter is suffering!

With the presence of dark blood- it indicates old blood- alot of times
higher up in the tract so to speak. Be the squeaky wheel! If she is
bleeding you want to see a gasrto as soon as you can wiggle your
way in!

Good Luck!
Lauren
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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
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06-05-2012, 01:42 AM   #26
upsetmom
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Aparently he works through the hospital system and he's very busy.
The secretary tried to make the appointment but the line was busy so she is going to call me back.
06-05-2012, 01:44 AM   #27
upsetmom
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We told him she has been bleeding and he said he was't concerned about the bleeding only about her pain.
06-05-2012, 02:58 AM   #28
izzi'smom
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Just wanted to say hello and welcome!! Sorry for all you are going through...hoping that you get some answers soon and that you are able to get in with another doc...it does not sound like this one is a good fit for you at all!
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06-06-2012, 06:03 AM   #29
DustyKat
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So good to hear you got a referral. If the you have a long wait for an appointment I would start hounding them to get in sooner.

I am still a little puzzled as to the quick tapers this guy does with Pred???

Good luck!

Dusty. xxx
06-06-2012, 05:51 PM   #30
Catherine
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upsetmom

Maybe a trip back to your GP to discuss the pred taper. My daughter was dx in end of January and she is still on pred 7mg per day. We have a couple of times going back to a high dose of pred due to pain. Sarah's GI doesnot want her to pain. It may help to explain to the GP how the pain gets worse when she tapers. It was our GP gave us the script for 1mg pred tablets. The GP also order blood tests for Sarah when we couldn't get back to the GI to pick them up when the GI want them the same day.
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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)
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