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Crohn's Disease Forum » Your Story » Growing concern for my 19yr old daughter


05-20-2014, 09:55 PM   #1
jones0898
 
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Growing concern for my 19yr old daughter

Well, I guess you could say that this is for my daughter and not myself. She has had a extremely difficult time with her health in the past year. She has had symptoms of severe abdominal cramping (especially in the morning time), gas pains, hair loss, and weight loss of 20-22 pounds since last June. She has had all the tests for a variety of possibilities with test such as helicobacter pylori antibody, Tsh High sensitivity, C-Reactive Protein, Celiac disease antibody, and other basic tests.

She had a CT scan which showed abnormal thickening to the transverse colon and then today had an upper endoscopy and colonoscopy which came back normal and that, according to the doctors, rules out Crohn's disease and ulcerative colitis which runs in both sides of the family. This was extremely disappointing and heartbreaking for not only myself, however, more so for my daughter. She is not a very tall women (5 foot exactly) and only weighs 78 pounds. I would appreciate any outside advice for us in this difficult time, but more for her piece of mind. Her sadness of not having an answer today broke my heart and I almost started to cry with her. Thank you ahead of time for any and all information, advice and both that is given and hopefully we will have some sort of an answer soon.

Tina

05-20-2014, 11:31 PM   #2
lilriv
 
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Oh, goodness... I unfortunately know how disheartening that must have been to find out that they have no answers for her - yet. I am an 18, almost 19 year old, and I know exactly how it feels to not know what is happening to your body. All I can say is be persistent. It took half a year until I was diagnosed with Crohn's disease, and it was the most painful experience of my life thus far. I went to several doctors who kept telling me I only have an external cut, but I finally got a colonoscopy and was disagnosed on 10/15/13. As I said, be persistent. Unfortunately, there are a lot of doctors who do not give their patients the peace of mind that they deserve, and misdiagnosis is definitely a possibility. I know this is probably not what you wanted to hear, but know that she is not alone. I spent half a year not knowing, but when you finally do know, it is a weight lifted off of your shoulder. She is in my thoughts.

Lil
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05-23-2014, 05:03 PM   #3
DustyKat
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Hi jones0898 and

I am so very sorry to hear about your daughter and all she is going through.

You are not alone here in finding many people that have great difficulty in getting a diagnosis of IBD. And all the while the suffering continues.

With such a strong family history and your daughterís symptoms you are right to be concerned mum.

Scopes only reach so far and in doing so leave a good 90% of the small bowel untouched, with this in mind I personally do not think the doctors can confidently say that she does not have Crohnís.

Was the CT just a Ďnormalí scan. By that I mean was it an enterogram? This type of scan, done either by CT or MRI, is very specific to the small bowel and will give greater clarity to any issues that may be present over a normal scan. If she hasnít had this done then if possible request one (I am not sure where you are at doctors).

A pillcam is another option. That is a camera that is swallowed in a capsule and takes pictures of the small bowel as it makes it journey through the bowel. You wear a recording device and the information is stored there. I would have the CTE/MRE done first to rule out any strictures (narrowing) so the pill doesnít get stuck.

Both of these tests were specifically designed to visualise the small bowel as there is no other method of doing it short of surgery.

It is not uncommon to have normal blood results with Crohnís and still have the disease. Again, if possible, request the following tests:

CBC and CMP: These will give you good baseline readings

CRP and ESR: Serum inflammation markers. I know CRP has already been done but it wonít hurt to repeat it.

Faecal Calprotectin: This is a stool inflammatory marker. It is specific to bowel, unlike the serum (blood) markers that canít distinguish where in the body inflammation is present.

Iron Stores and Folate: This will give an indication if there is an anaemia present and what type. Also an elevation in Ferritin can in some cases be a back door indicator of inflammation where other serum markers fail.

B12, Vitamin D, Magnesium and Zinc: Deficiencies in one or more of these can also give clues to malabsorption and deficiencies are not uncommon in Crohnís.

It may be a good idea to start a diary if you havenít already done so. It helps to keep all your observations together and it is harder for doctors to refute evidence that is in black and white. And if you are anything like me, when you live this day in and day out what was abnormal slowly becomes normal without you realising it. The disease can be really insidious like that. Here is the link:

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

*I want you to take note of Other Symptoms and see if any of those ring a bell too.

Last but not least, do you have photos that show the weight loss? If so take them along to any appointments as well and ask them to explain the change.
My daughter went undiagnosed for 18 months and it was awful, as you well know . It wasnít until some time after her diagnosis that I was going through her school photos and the change was dramatic. I sort of saw it at the time but again, when you are looking at them everyday it isnít as confronting.

Good luck mum. I hope with all my heart that you soon have solid answers for your daughter and she finds long and lasting relief.

Dusty. xxx
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05-24-2014, 04:10 PM   #4
my little penguin
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Since your in Ohio - have you gotten a second opinion at the Cleveland clinic?

even if they just review her records.

good luck
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05-25-2014, 06:02 PM   #5
jones0898
 
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After a disastrous result of the colonoscopy and upper endoscopy (results normal for both), I am going to ask my daughter's primary doctor to gives us a referral to the Cleveland Clinic after her 3 to 5 hospital stay next week. They are going to have someone in Endocrinology come over and run a series of tests to check her hormone levels. I will never trust the doctors at MetroHealth hospital of the GI department again. All they seem to get done saying is that they think that she has an eating disorder and nothing else is possible. However, I see her eat every day and she does not fit to what is seen with someone that is dealing with an eating disorder. She may not have Ulcerative Colitis or Crohn's disease, but there is something going on with her body and it is not psychologically based completely. Thanks for all the support!!
05-25-2014, 06:26 PM   #6
xmdmom
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I'm sorry your daughters been having such a rough time. I am an endocrinologist by training and can't imagine what series of tests they would be checking. Hyperthyroidism, diabetes and adrenal insufficiency are the hormonal problems that cause weight loss and they can be screened for with one fasting a.m. blood sample (for TSH, blood sugar and cortisol/ACTH).

While usually Crohns show's up on upper or lower endoscopy, it is a sneaky disease and sometimes it only is apparent in the small intestine where neither upper or lower scope can find it. Dustykat's email has a lot of good information about tests that can be helpful.

Hope you get some answers at the Cleveland Clinic.
05-26-2014, 05:31 AM   #7
DustyKat
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Unfortunately the peak age for Crohnís to show itself is 14-24. As a result it is not uncommon when young women present with weight loss for them to labeled with a eating disorder. The problem is in doing so is what you are experiencing now, an unacceptable delay in receiving an accurate diagnosis.

Do many people with Crohnís have a troubled relationship with food? Undoubtedly, and why wouldnít they but it is not an eating disorder of the manner that doctors automatically turn to.

Dusty. xxx
05-26-2014, 10:05 AM   #8
my little penguin
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Hope you get answers at the Cleveland clinic
Sorry to hear about the "eating disorder"
That ranks up there with it "IBS"....
Ask to have her biopsies slides sent over ( you would have to call pathology for this).
Medical records can send copies if all doctors notes progress reports etc...
Scope reports and cd images( radiology) of any mre or cte done .
The folks at Cleveland clinic can tell you what they need .
It takes a awhile to get all the paperwork together a few weeks so you may want to start this week . Plus it can be two to three months to get in ( at least in ped Gi ) not sure on the adult front .

Add any growth charts you have from the ped as well as their medical records - might help ...
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