Help For My 21 Year Old Daughter

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Aug 15, 2012
Messages
12
Hi everyone
I am writing this in sheer desperation, as I am at my wits end not knowing what to do or how to help my 21 year old daughter, I will start out from today and go back in time, my daughter just returnedd from a weekend ski with her friends, I think they ate cheese, eggs, salads, meats while there, everything was home cooked,. Today 15/8/12 my daughter mentioned that she was having stomach pains and that her stools were green but normal, she has started taking vitamin D 100IU as she is low, she usually takes it before going to bed even though they say to take it after dinner, but did not take it while on her holiday instead I gave her Centrum Advance _ organge coloured, multivitamin, so I cant see why her stools have turned green, she eats mixed salads with a mayonase dressing quite a bit, and has had it before too, but that has never given her green stools, however when she said that she felt like going to the toilet when she had the pain, but instead sent out some gas and said that the pain went, it looks like it comes and goes and it is almost 5 days for today in having green stools and I dont know what the cause is she is refusing to go and discuss about her stools with the docotr so I am looking for any advise.
It all began on May 14th 2012

Well she used to get stich like pains on left side of stomach since 2010 did a abdominal ultrasound in Sept 2010, everything was reported as normal. She has had yearly normal blood test since 2008, she was stated as anemic and I thought it was low in iron but the docotr said that her iron is on normal to barder line 7-8 australian standard but hera
29th May ’12, had severe bloated feeling, cramps/pain above naval and bottom of chest (in between stomach and bottom of chest), she had the same episode on 14th May ’12 but was with friends she also had her periods but said that that was not the same pain she get when she has her monthlies which is on the lower abdoment, it was the bloated, crampy, gassy feeling,pain her friends found her coiled in the ladies room and gave her panadol rapid after four hours the pain left, only to come back the next day but she did not mention it to me until the 29th of July where she was asked by another doctor to go to emergency,after 4 hours waiting to see a doctor, said IBS and sent home no treatment, or blood test done until I went to my GP the next day as the pains were still there, she gave her a boscopan injection and 2 gavascons and the pain, cramp and bloating were relieved, she wanted her to get another CT scan, she had barium oral contrast she needed to drink the liquid a certain amount in one hour and another amount in the next hour, instead she took 45 mts to drink the first lot and another 45 for the next lot, this time they said there were patchy calcification in liver everything else seemed normal/clear and normal like bowels, pelvis, bladder, uterus , rectum normal , kidneys, pancreas, adrenals lungs spleen kidneys and no free fluid was see,no lymphadenopathy seen. Did another MRI ( post contrast) for further evaluation MRI on 19/6/12,mentioned that calcifications are better seen on SCans than MRI and everything conlusion ws normal study. (Note she had to do MRI 8 hrs fasting, but as we went about half hour late they asked her to eat something and 3 hours later was the MRI, could her eating have hindered MRI .

She lost weight since she had her braces, more than 10kls since her braces as she had difficulty eating properly, but now she is ok, and have meals but not at the correct time, skips breakfast most days but will have lunch and dinner, and noticed yellow tinge on skin but when asked family they said no, they did a full blood test on her but did not test for magnesium is there any other blood tesst that you can recommend,her vitamin D is 29nmol/L low she was taking Loraclear with 10 mg Loratadine since dec 2010 on and off for relief of hayfever, but reading the box now says that if you have liver problems to avoid taking it,she also take a naprogelsoc for period pain and ibuforen 1 with 1 panadol for headaches.
I Have provided results for bloods test (Australian standards) below that was taken on 1/6/12 Note Docotor said slighly anemic, never explained it, I thpought it was it was iron deficinecy, but this GP said iron is in normal range to boarderline but still slighly anemic,even though iron level is at 7or 8, because her or ferratin is low, but her and thats why the docotor said she is anemic due to her *MCH 26.7pg, *MCHC-21.1g/dl, (.3-.5) low and I really dont know what to do or how to rectify the matter.She had hematuria around 2010 too, and a couple of years ago she had bright red blood in toilet the doctor did an internal and said it was a small tear so did not send for any other studies, but it was really bad as I got a shock, and she said she had it once after that but did not tell me on the day only after a couple of days as she said I would have taken her to the doctors, she did mention though that she strained a bit.
I am worried as my Father In Law had bowel cancer in his 70s and is ok at present now 77, and my mother in laws step brother toohad it, and he did not survive

She gets highly stressed and I am a stress head as well, I have given all the results as I dont know what else to do and feel so helpless, They did a Coeliac Disease serology (serium) – normal 2.53,for 2012 results as per 1/6/12,).
Were they looking for Crohn's disease or is there any other test that she needs to do
She gets really cramppy during her monthlies and I dont want to give her any ibuforen tablets so I gave her panadol but she was in sever pain, spoke to the doctor she said that Ibuforen is better than Panadol, and now reading about crohn's disease noticed that Ibuforen is not good and she used to take them for headaches period pains, etc, and she is someone that gets highly stressed out.
Plese any information you can provide will be useful, someone mentioned about bile in the stools why is that and how can I help her.

Can anyone give my a list of things that she needs to eat if she has crohn's diease, what other test could she do and what are the other symptoms to look out for, I thought the stomach cramps gassy bloated feeling was due to the calcificatin but the doctor said it has nothing to do with it . I am at a loss, please any information is useful
Sorry about this as i dont know what else to do and I am looking for answers.
Wish you all good health
God Bless you
Heather
 
Last edited by a moderator:
Heather - there is a book called Eating Right with a Bad Gut, check that out! Crohns patients will tell you that it varies with each person on what you can eat and not eat. My best friend during Crohns is oatmeal.
 
Hi

It hard being the mum. Has your daughter been to a gi? We have good gi in Dandenong, I think seeing gi would be good starting point.

If her has anemia and it not iron related has she had b12 and folate tested?
 
Hi Heather (h gower) and :welcome:

I am so very sorry to hear about your daughter...:hug:...I know how hard it is to see your child suffering and feel so powerless to do anything. :(

Since your daughter is undiagnosed and is having gastrointestinal issues then if it all possible it would be better to steer clear of all NSAID's, unfortunately that includes Ibuprofen and Naprogesic, due to the gastrointestinal side effects that they can cause.

For some people blood tests and standard scans don't tell the whole picture. I have been once bitten twice shy by the those issues myself with my daughter and I now live by the rule that if the blood tests/scans don't match what I am seeing in front of me then I don't believe them and push for further intervention. I no more what to put my child through invasive tests than fly to the moon but I have reached a point that I would rather a normal scope etc than do nothing and be left wondering.

Now the questions! :lol:

Has your daughter had inflammatory markers done (blood) CRP & ESR?

Has she had a faecal test done called Faecal Calprotectin (tests for inflammation specific to the bowel)?

Is she seeing a gastroenterologist?
If not have her referred. Another parent here, Catherine, is from Melbourne so she may have a recommendation, although her daughter may be seeing a paediatrician.

Do you or does she keep a diary of symptoms?
If not then it may be a good idea to start one. It makes it hard for doctors to refute hard evidence. :wink: Have a look at the suggestions we have in the wiki...

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

Issues with Vit D and Folate can have the potential to be traced to Crohn's and if it is located in the terminal ileum isn't always easily visualised with scanning or X-Rays. If these symptoms continue to persist then perhaps it is time for something more invasive like scoping, both colonoscopy and endoscopy. Scoping still remains the gold standard for a diagnosis of IBD. Bear in mind that scoping still leaves most of the small bowel untouched so a pill cam and/or enterogram may be needed.

Good luck! Welcome aboard and I hope you have solid answers and relief for you daughter, bless her.

Dusty. xxx
 
Silly question. Does she drink grape juice? Causes green stools and blueberries as well. Even though it may not be that, just thought I'd tell you in case... She should start taking probiotic multienzyme formula with her meals. It helps me immensely. My crohn's is much better now since.:)
 
Hi as far as I know she did not have grape juice she says it is back to normal now, I pray that everything will be OK, she does not eat proper meals and I wonder if this contributes to it all.
I just hope that all onthis forum would find answers and can come back to their normal selves.
Regards
Heather
 
Hi Catherin and Dusty,
My daughters Vitmin D is low , folate and B12 normal, so is the iron and ferrtin, thats why I am not sure , anyway, the doctor I am seeing said that if she gets it as bad as she did on the 14th and 29th May she will refer her to the gastroenterologist?
No, the docotr did not mention this about faecal test (Faecal Calprotectin) (tests for inflammation specific to the bowel)? can I get the ones they sell in the pharmacy over the counter Bowel screening, for $ 20 and send it for testing or does the doctor have to give the referral.
On Thursday she said her stools have come back to normal, I hope she is telling me the truth as she knows I am worried about her,
I am not too sure of the CRP and ESR because the doctor said everything else was normal I hope she did those test too, will find out the next time I am there, I hope you
Regards
Heather

r for an otr is
 
We got a referral from gp. I have had the test done twice using Dorevitch who quoted $55 but charged $40 both times. The other lab Melbourne is quoting $75.

Our gp had not heard of test, just took the name of test gi had order for Sarah on my request.

There is long wait to get into gi.
 
Hi as far as I know she did not have grape juice she says it is back to normal now, I pray that everything will be OK, she does not eat proper meals and I wonder if this contributes to it all.
I just hope that all onthis forum would find answers and can come back to their normal selves.
Regards
Heather

Hi again,
When I get an intestinal flu bug or tummy flu days later the stool is green for days. Many have had that. So maybe that was it. Let's hope so.:heart:
 
Hi ther
Just a quick note to see if anyone knows if you take centrum advance can you also take vitamin D1000IU and Omega 3 capsule together and can it be done beofere bedtime any advise
Thanks and God Bless
Heather
 
Vitamin A interferes with vitamin D metabolism, you should split them. Omega 3 can take whenever.

When they supplement animals that are low on vitamin A and D with normal amount of vitamin A and D, the animals recovers. But when you give that same animal normal vitamin D but overdose it on vitamin A, you get too little vitamin D, because the vitamin A is interfering with the vitamin D absorption.

You have to keep those 2 vitamins split somehow.
 
Hi Heather,

My son takes 1000 IUs of liquid Vit D, one Calcium +D pill and one capsule of Krill Oil all just before bed. He takes a second capsule of Krill Oil in the morning. We initially started him on one Krill Oil per day (recommended dosage is 2-3/day) but when we added the second capsule, taken at the same time, he found he would have looser BMs. We tried splitting the capsules (morning and night) and this solved the problem.

If there are any issues with taking these supplements together, I'm not aware of them.

:)
 
Hi Heather,

Sorry for the delay in replying. How is your daughter doing?

The faecal calprotectin test is one that would need to be ordered by the doctor.

Dusty. xxx
 
Hi Heather,

Sorry for the delay in replying. How is your daughter doing?

The faecal calprotectin test is one that would need to be ordered by the doctor.

Dusty. xxx

tHANKS DUSTY, sHE SAYS HER STOOLS HAVE COME BACK TO NORMAL EVEN THOUGH SHE DOES NOT EMPTY HER BOWEL EVERYDAY AND GETS UPSET WHEN I ASK HER ABOUT IT, I HAVE ASKED HER TO STAY AWAY FORM ALL SOFT DRINKS TO TRY TO STOP THE BLOATING, GASSY, CRAMPY FEELING SHE HAD PREVISOULY SO FAR SEEMS TO BE DOING GOOD, BUT I JUST WORRY THAT SHE MIGHT NOT TELL ME EVERYTHING KNOWING HOW MUCH I GET WORRIED WHAT IS GOOD FOR HER TO TAKE WHEN SHE HAS REALLY BAD PERIOD PAINS AS I TRY TO AVOID IBUFOREN, AND NAPROGELSICS HOPE I SPELT CORRETLY, AND GIVE HER PANADOL BUT IT DOES NOT SEEM TO GIVE HER ANY RELIEF I HAVE HEARD OF PRIMROSE OIL, DOES ANYOE KNOW ANYTHING ABOUT IT
cHEERS
HEATHER
 
Hi Heather,
We used to tell our patients to take evening primrose oil for breast pain not for period pain though it might help for that as well. She can try drinking red raspberry herbal tea. That can help with cramps as it helps the uterus work more efficiently.
 
I agree with Kim suggestions Heather. :)

As far as medication goes has Mersyndol been tried or another medication that has some codeine added?

Dusty. xxx
 
Hi h gower!

All the diet advice in this thread is good. Everyone has different tolerances, but the golden rule is to eat low residue food (food that leaves little residue coming out), and avoid ruffage (nuts, raw carrots, seeds, etc.) Some poeple avoid fried food as well, and red meat which is hard to digest. Some prefer to eat nothing but soft, bland food. I loved rice, which may seem counter intuitive. Eating smaller amounts helps to decrease bulk and that helps too. Diet changes are not a cure or anything like that, but they can help minimize the pain. Also, some people find that avoiding dairy products helps. Dairy didn't bother me. Spicy food bothered me sometimes. Carbonated drinks sometimes bothered me too.

The other thing about diet is that everyday is different. You can watch your diet like a hawk each day and "do everything right" yet still have issues. So, avoiding everything that everyone says to avoid can be tough and may not be very practical. One good trick I used was to keep cans of Ensure around in my car, backpack, whatever, but I'm sure you could use any good protein shake. Good source of calories with little residue to irritate the bowels.
 
Hi everyone
Thanks for the feed back shall try her on red raspberry tea with regard to myrsondol for period pains doe it contain ibuforen etc as she also had an oral barium test done for a scan, when she had the stomach pains, bloating and gassy feeling, said there were patch liver calcification and reading about ibuforen etc was a bit scared in case things get worse, and panadol is gentle, I suppose hope I am right, She also has to get her wisdom tooth out an I dont know what I could use for pain other than panadol, hope it does the trick as I dont know what else I could give her.
Hope you are all in good health, she eats a bit and says she is full, but she has started drinking a bit more water.
God Bless you all
Heather
 
Hi Heather,

Mersyndol is not a NSAID (Non Steroidal Anti Inflammatory Drug) so it contains no anti inflammatories like Ibuprofen does.

Paracetamol and NSAID's are considered first line medications when it comes to pain management. For those with IBD, or other gastrointestinal issues where bleeding or stomach problems are an issues, it means that a whole class of drug has been removed, those being the NSAID's. That means you may need to move to the second line of medications more quickly.

The second line medications are simple combination analgesics like Mersyndol, Panadeine and so on. They contain Panadol and Codeine.
If there isn't a response to these drugs then normally a NSAID would be trialled along with them but since this cannot be taken with IBD you would then move to the weak opioids and the drug would prescribed would be Tramadol

Dusty. xxx
 
Hi there, I am sorry you do not yet have any definitive answers. I wanted to let you know I also have a daughter who suffers from terrible period pain...to the point she throws up. She does not have IBD so can take Ibuprofin but even that doesn't help. The ob/gyn suggested birth control pills but we decided against that. She also said that it is very important to get ahead of the pain and not wait for it to start. She is fairly regular and we are in sync so every time I get my period she starts taking the Tylenol or Ibuprofin in preparation for hers and it has helped some.

Good Luck.
 
H gower make sure you take care of yourself during all of this. It is important to make sure your child is taken care of but just remember they will be in worse shape if something happens to you. Crohns is a terrible condition but there is no cure and as long as symptoms and vitamins levels are managed there is minimal danger. I know everyone strives for the perfect combo of supplements and medications but its a long process of trial and error. I hope things go well with your child and make sure you take care of yourself for her to be strong she needs you to be strong!
 

Latest posts

Back
Top