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Crohn's Disease Forum » Support Forum » Vent Away » My parents think I'm exaggerating or lying


01-06-2016, 01:11 AM   #1
Hamha
 
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My parents think I'm exaggerating or lying

I'm undiagnosed as of yet, but very confident that I will be receiving a Crohn's diagnosis soon as my symptoms match too perfectly to be a coincidence. Unfortunately, I had a colonoscopy and gastroscopy two weeks ago and both came back normal. Since then my mother has decided that I am exaggerating my pain for attention, and my father just goes along with her to avoid conflict. Yesterday I was curled into a ball on the floor whimpering and wishing I could die just to stop the pain, and my mother told me "get off the floor, you have chores". She seems to believe that the illness is mostly or entirely faked and often calls me a hypochondriac. I can't talk to either of my parents about my symptoms anymore, and they are expecting more from me than I can possibly manage. I'm trying to move out within the next few months but I'm too I'll to work and can't qualify for disability assistance until I have a diagnosis, which my GI is not providing (he is also refusing to send me for further testing, and due to being in Canada getting a new GI is not easy). I'm really stressed right now because I'm in the middle of one of my worst flare-ups and I desperately need support, but the people I live with are ignoring my symptoms or telling me to get over it. I just really need to vent in the hopes that someone will understand.
01-06-2016, 11:51 AM   #2
Cat-a-Tonic
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I definitely understand. My dad is clueless but supportive. My mother, on the other hand, for some reason she thinks that I have Celiac (I do not, I've been tested multiple times) and she feels that I'd magically have perfect health forever if I just gave up gluten. Um, no, my issues are more complicated than something that can be essentially cured by a special diet. I'm technically undiagnosed as well (my GI and GP both feel that it must be IBD, but I've been through a lot of testing and everything has come back normal/inconclusive). So I totally understand how frustrating it can be when you don't have answers but you KNOW something is majorly wrong, but the people who are supposed to support you instead turn their backs on you. It sucks and I'm sorry.

With regards to testing - you've mentioned a colonoscopy and upper endoscopy. What other tests, if any, have you had done? Blood tests and stool samples? What about imaging, anything like a CT scan or MRI/MRE? Pill cam? If they have only done the scopes, that means they haven't looked at the vast majority of your small inestine, and Crohn's can hide out in there sometimes. So something like MRE or pill cam is something to look into if you haven't had those done. Your GI sounds horrible if he won't do further testing, so I do hope that you can get a new, better GI soon (I don't know much about the system in Canada, sorry!). What about your GP, he/she should surely be able to do some blood work and stool samples at the very least if those haven't been done already. CRP & ESR (inflammatory markers), and vitamin levels would all be good bloodwork to have done (certain vitamins such as D, B12, iron are often low when you have IBD) and fecal calprotectin is a stool test which can check for inflammation in the digestive tract. Those would all be good things to look into while you're waiting for a new GI. Good luck! I really feel for you and I hope you can get some answers soon.
01-06-2016, 11:58 AM   #3
tots
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i am so sorry your having such a hard time. This disease is horrible, getting a Dx can be humiliating, trust me if I only wanted attention, I would come up with something other than a problem all the way up my colon!

Every test you take can be negative for CD and you can still have it. I moved to Texas in 2000, my new Dr wanted me off all meds and prove to him I have the disease. Second opinion Dr didn't look at me or my prev records- gave me a prescription for Valium. That I tore in half and handed back to him. I told I'm I was seeking medical care not drugs, those he could keep for himself!

After ten years of no real treatment- I need up in the ER with bleeding, pain and diarrhea.
Long story short a small bowel series showed the CD is the same original spot and it had jumped/spead to my lrg intestines. So going without treatment in my book didn't work!

You are your best advocate- keep going back, until you get the help you need. My best tests were a small bowel series and a CT of the entire abdomen with contrast. I drank a watery chemical and had an IV with Iodine. All these test show my CD in the same place.

I wish you the best of luck in finding out whats wrong!


Lauren
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01-06-2016, 12:14 PM   #4
my little penguin
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There are ALOT of things that can match CD on paper
My Ds is dx with crohns but according to tears this past year ( everything was fine crohns wise) but still was doubled over etc,..
Multiple hospital stays two scopes mre bloodwork
And nothing was showing
Two weeks ago final had a gastric emptying test
He has delayed gastric emptying caused by crohns
Which made him feel horrid and was making his lower Gi symptoms worse as well from a functioning standpoint .

Keep a log of symptoms and foods and bm etc....
For ds we didn't think any food was the issue since he was sick all the time
Now we know some foods ( low fat low fiber ) are much easier for him to tolerate

Have you tried boost or ensure diets to see if they help ???
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01-06-2016, 09:49 PM   #5
Hamha
 
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Thanks you guys, just knowing someone out there is on my side makes me feel better.

I'm seeing my GI on the 19th and will be arguing for fecal calprotectin and some combination of pill cam/MRE/ct scan.

I've tried a lot of diets (including gluten free in an attempt to convince my mother that it's not celiac) and none of them have quite worked. Right now I'm on low fibre and minimal raw vegetable, and it seems to be working best out of everything I've tried. Hoping to get in with a dietician soon to see if there's anything else to be tried.
01-06-2016, 10:54 PM   #6
Lady Organic
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another supporter here
good luck no the 19th, let us know how it goes.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
01-07-2016, 12:21 AM   #7
ronroush7
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Support and prayers.
01-08-2016, 03:13 PM   #8
Hamha
 
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Thanks, everyone. Any tips on how to convince my GI to order more tests if he doesn't initially want to?
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