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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Various symptoms and abnormal CT but not being taken seriously


06-11-2015, 04:47 PM   #1
jlrw58
 
Join Date: Jun 2015
Various symptoms and abnormal CT but not being taken seriously

Hey everyone, I'm a female in my mid 20s and dealing with stuff for the past few years. I was diagnosed with GERD and IBS a couple years ago after having a lot of nausea and abdominal pain. it seemed to get better but then this past November I lost my appetite. Since then I've gone from 145 lb to 117 lb, have stomach cramping, constipation (or more tenesmus), mucus, joint pain, eye irritation, etc. I know I don't have the classic symptoms for Crohns or UC, but I had a low IgA, which can be seen in IBD, and my CT scan showed "string-like lumen diffusely in colon with mild to moderate wall thickening." They weren't able to really see the small bowel. Radiologist read it as "pathologic processes such as UC must be considered." I am scheduled for a colonoscopy in a couple weeks, although my GI made it seem like a colonoscopy isn't really necessary.

I just feel so dismissed...it's been 7 months just to get to a colonoscopy with me being told I'm just anxious, my job is too stressful, I used to have disordered eating so I'm just anorexic, it's all in my head, etc. One doctor even told me that when I get older, I'll feel silly for worrying so much about weight loss (I'm 5'6" and was thin prior to this.) Even my husband says that if doctors aren't worried, then nothing is wrong. Now, I'm in the health field and very aware of the mind-body connection and that it is very possible that stress/anxiety are worsening things......but I'm stressed out because I constantly feel like crap. Prior to this starting, I was probably the least stressed I have been in years. I get that I don't have the classic bloody diarrhea, but still.

How do you guys deal? I'm in that weird place of hoping the colonoscopy is fine because I do NOT want to deal with IBD, but I also want it to find something to justify everything. No one understands and I'm afraid to even update my doctors or follow-up at all because I feel like I'm just bothering or annoying them.
06-12-2015, 01:45 PM   #2
UnXmas
Banned
 
Join Date: Oct 2012

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This happens all too often. The best advice I can give is to not bother with doctors who don't take you seriously. You should not need to worry that a negative test result will be taken as evidence you don't need help, or feel you have to prove to a doctor that you're ill. Only stick with doctors who try to help you regardless of negative test results.
06-13-2015, 07:26 PM   #3
Izzie
Senior Member
 
Join Date: Mar 2015

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I've had a very similar struggle with doctors for months and months, and I've come up with two strategies to deal with it:

1) Like UnXmas said - don't be afraid to switch doctors if the one you're seeing isn't hearing you out.

2) Just being very upfront with them about any mental health history. With my doctors now, I just kind of break it down for them like, look, I know I have anxiety, I've had anxiety for years, I know what anxiety feels like and this is not it. I'm not an idiot, if it was anxiety (or in your case anorexia, or stress, or whatever), I would ask you for help with that. Anxiety would not cause my abnormal test results (for me it's been testing positive for blood in the stool, anemia etc). You can't send me home with debilitating physical symptoms and dismiss them as stress-related when I'm sick enough that I can't function properly in my day to day life.

The good doctors, I've found, usually respond well to that approach. Getting emotional is not the ticket, I've realized. That just makes people go "see, stress!" It's horrible that you should even have to be strategic in how you ask questions but if you have a history of mental health issues (even if you don't, sometimes), doctors are very quick to dismiss any problems you have with "it's stress".

Seeing as you have some abnormal test results, I would challenge doctors then to explain to you why those test results are the way they are, if your problems really are just stress related.

My latest doctors have had to reluctantly agree that no, IBS and stress doesn't cause gastrointestinal bleeding to the point of anemia.

(I too have been diagnosed with GERD, and while I don't believe it is the cause for all of my symptoms, it's been a right pain in the ass on its own, so I feel your pain there.)

ETA: Also if you have a friend or family member with some spunk, bringing someone along to sort of fight on your behalf can be such a huge help. It can be so tiring to have to fight for yourself constantly, and there's strength in numbers too if someone you see a lot can be there and be like "yeah, she's really sick, I've noticed"
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