Crohn's Disease Forum » Support Forum » Undiagnosed Club » PLEASE HELP ME. How do I get my GI to take me seriously when I'm so ill?

08-06-2013, 03:58 AM   #1
Join Date: Aug 2013
PLEASE HELP ME. How do I get my GI to take me seriously when I'm so ill?

I'm going to call my GI today try to get an appointment (big step for a 19 year old with panic attacks), but I can never seem to get him to take me seriously or diagnose me with anything. I was wondering if anyone could give me some advice on this matter?

My backstory:
I've had stomach problems as long as I can remember. The first time I acknowledged it as more than "tummy pain", however, was when I was twelve and had been diagnosed with mesenteric adenitis six times in as many months. My PCP was concerned with the size of my lymph nodes in the abdomen. At the time, I was having chronic constipation on and off, nausea, and severe pain in my LRQ. I was also generally ill extremely frequently. I had symptoms associated with Celiac, so she referred me to a GI, but told me to go gluten free in the mean time.

I didn't get in to see the GI for several months. In the mean time, going GF did help immensely. To this day, I'm GF, and even if I'm cross contaminated I get extremely ill. Being GF (on the doctor's advice!) before I saw the GI began our relationship of him not taking me seriously though, because there was no evidence of gluten damage when he did an endoscopy/colonoscopy and therefore told me I should be fine eating gluten. What he did find however, were several sores and ulcers from my throat all the way down to my anus. He biopsied these and had me tested for food allergies. I'm allergic to egg, crab, orange and pineapple.

I'm now 19 (it's been seven years). Since then, I'm mostly okay except for my "episodes". The episodes themselves have intensified in severity. In these episodes, I'll have severe cramping in my lower abdomen with the sharpest pain being in my LRQ. I'll have nausea, absolutely no appetite and an inability to keep food down anyway, diarrhea with some blood in the stool and a lot of blood in the toilet bowl, fever, fatigue, chills, etc. This most recent time, I lost 10 pounds in 3 days and that is fairly normal for these episodes. It's really, really miserable. Worse than kidney stones I've had that I needed surgery for. I've given up going every time this happens, but I did go to the ER for the pain last night. The ER doc was concerned with how swollen my lymph nodes in the abdomen were, but was very busy so didn't pursue it further. He gave me antibiotics, 600m ibuprofen, and zofran with instructions to follow up with the GI.

Here's why I think testing for crohn's is important:
-I have all of the symptoms: severe abdominal pain (usually cramping) that "flares" up, fever, fatigue, loss of appetite, diarrhea, blood stool, weight loss.
-My aunt and grandmother have crohn's. In my aunt's case, all tests for crohn's came back negative MULTIPLE times before she had one come back positive. Afterwards, the GI who diagnosed her was surprised how much damage had gone undetected.
-My symptoms closely mimic my aunt's
-Mesenteric adenitis is not supposed to happen as frequently at my age, let alone happening on a near bi-monthly basis

I just don't want the GI to think I'm jumping to conclusions, trying to diagnose myself, etc. On the other hand, I've lost 50 pounds in 4 months and am a bit concerned by that and the pain level. Help please?
08-06-2013, 04:17 AM   #2
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bozzylozzy's Avatar
Join Date: Oct 2011
Location: Sheffield, UK
Hi doctorriversong and welcome to the forum

Im sorry to hear that you have all these symptoms that you are suffering with
When you say that he found ulcers/sores all throughout your digestive tract - did he not test for IBD??? Or was it just allergies?

If he didnt test for IBD.. I would ask him to do so.. and if not.. you should seek a 2nd opinion.
I know it must be hard to put your foot down with this due to panic attacks.. but you have to be your own advocate. Is there anyone who could attend your appointments with you? Such as your parents or friends?

You should have your vitamin levels checked - especially iron - because of the blood in your stools.. plus your B12 and vitamin D.
I really wish I could help you more.. but you clearly have something going on.. and your symptoms sound Crohn's to me.. although of course I hope it isnt.

Please keep us updated xxx

Another note: ibuprofen is a big no no for those with IBD.. especially as you already have bleeding. It may be worthwhile speaking to your GP in the meantime.x
Grumbling Appendix removed OCT'11
Chiari Malformation diagnosed JUNE'12 (surgery 5th July)

Alternating diagnosis of:
Seronegative Inflammatory Arthritis / SAPHO syndrome

Vitamin B12 injections
(Previously Prednisolone.. worked a treat!)

Watch out.. there's a blonde about!
08-06-2013, 04:25 AM   #3
Join Date: Aug 2013
He didn't test for IBD when he found the ulcers/sores. He just assumed they were allergies, so when they found allergies he assumed that it would be fine and never did a follow up endoscopy/colonoscopy.

I'm hoping my mom will be able to go with me if she gets out of work early enough whenever my appointment is. But goodness, it's all very scary especially because one time I was in the hospital for my seizures, I was emotionally abused by a doctor.

I know that my iron flips back and forth between being normal and JUST under normal that the doctor isn't concerned enough for supplements. B12 I don't THINK I've had a problem with? Or at least not one they felt was bad enough for treatment. My D is very very low. My PCP actually prescribed the vitamin D supplements I take because I needed such a high dose.

Thank you so much for the response and for welcoming me!
08-06-2013, 04:35 AM   #4
Forum Monitor
bozzylozzy's Avatar
Join Date: Oct 2011
Location: Sheffield, UK
Oh dear.. you havent had a tood time with doctors have you

It will be so good if your mum can join you.. a lot of people on here (myself included) doubt themselves. And having somebody there with you will help to ground your thoughts and back you up if the doctor isn't being fair to you.

How long have you been gluten free and allergy food free?
Given your family history along with your symptoms.. you need to have IBD investigated. I too have known IBD sufferers to have normal biopsy results time to time. So you need another scope..

Big hugs to you xx
08-06-2013, 05:34 AM   #5
embersglow1's Avatar
Join Date: Aug 2013
Location: Appleton, Wisconsin
That sounds so terrible!
It can be hard to stand your ground, but try!

It sounds like you have your symptoms and disease progression orgabized well in your thoughts... maybe get it all down on paper and walk into the doc office nice and prepared!

I walked into my firat GI appt after my colonoscopy with all my meds, my planner and my food journal and I think my GI about fell off her chair! Its hard to dispute what you've got right in front of them!

I as well have anxiety and sadly not much support during this tough time.
Stay strong and be brave!

Good luck
08-06-2013, 06:14 AM   #6
Thunderstorm's Avatar
Join Date: Aug 2013
Location: UK

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Hey doctorriversong, good luck with your appointment whenever it is. I second writing it all down, and giving your Mom a copy too so she can speak up if you find yourself lost for words/struggling to say what you mean. My GI actually took my bit of paper to read thoroughly and kept it!

I'm 23 (but seem younger as I am shy/anxious) and I always take my Mum with me to important medical appointments as i feel they are more likely to take my issues seriously as she is more confident and, i guess, has more authority than me.

Best of luck.

Crohn's Disease Forum » Support Forum » Undiagnosed Club » PLEASE HELP ME. How do I get my GI to take me seriously when I'm so ill?
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