Crohn's Disease Forum » Your Story » Clear Colonoscopy, Symptoms Persist, No Diagnosis?

02-26-2014, 02:47 PM   #1
ZoeNox's Avatar
Join Date: Feb 2014
Location: Columbia, Missouri
Clear Colonoscopy, Symptoms Persist, No Diagnosis?

I've had digestive issues off and on for years, but they were always relatively minor (diarrhea, stomach cramps, acid reflux, etc.) and I never paid them too much attention because I either thought they were connected to something else (and I'm sure sometimes they were) or I couldn't discern a pattern behind it. Then I started having increasing issues in my early 20s and they took out my gall bladder at 25. I got used to the idea that I couldn't eat fried food at all unless I wanted to spend hours in screaming agony, and that any fatty or overly-processed foods had to be eaten sparingly or I'd suffer for it. Reduced my nacho intake, changed the kind of dishes I ordered at my favorite restaurants, starting eating a lot of spinach (it's amazing on pizza, FYI)--didn't do like a complete over-haul of my diet or anything, just made some alterations that allowed me to function adequately without making a load of radical changes. A couple of times when I worried about a bladder infection, even though the symptoms weren't quite right, the tests came back negative. They looked for endometriosis, a disease all the women in my family apparently have, but the results were inconclusive. In 2011 my doctors ran a series of blood tests and told me I was remarkably healthy for an overweight woman, but that I had extremely high C-reactive protein levels that would indicate chronic inflammation, at levels higher than would be typical just by being an over weight light smoker, but then my health insurance ran out and we couldn't follow that particular rabbit down its hole.

Then 2 years ago I began a messy divorce that put me through 15 months of the highest stress I have ever experienced in my life. The anxiety caused 3 months solid of nausea, vomiting, diarrhea, lack of appetite, and fainting spells (probably because of the lack of nutrition and large amounts of adrenaline in my system). Lost 55 pounds. Didn't have health insurance then but I got free counseling services through a local shelter, got my anxiety under control, and was able to get my life back together. My tummy troubles mostly backed off, and I figured they would completely diminish over time. Then a couple of months ago things started to get worse instead. Diarrhea attacks every other day. Extreme fatigue; by early afternoon I was brain-dead and falling asleep at my desk. I kept thinking I was having random allergic reactions that didn't seem to follow a consistent exposure pattern; just randomly I would have stomach cramps, back pains, skin irritation on my arms, chest, back, and/or neck, and felt feverish. It kept going for months and I was miserable. The final straw was during the worst flare-ups, it felt like I was being kicked in the back by a child wearing steel-toed boots, going to into labor, or having sharp stabbing pains in my right abdomen (lowish, but sort of near by navel). Went to the doctor because, huzzah, finally I have health insurance again, and they tested for kidney stones. Nothing on the urine analysis. Nothing on the blood screen but slightly elevated leukocyte count. Sent me in for a CT scan - no kidney stones, but it looked like colon-wall thickening would indicate I need a colonoscopy. Great. 30 years old and I need a colonoscopy. Last week I had it and the only thing they found was one benign polyp and even though I'm supposed to be super glad nothing's wrong with my large intestine and I don't have colon cancer (to which my response was, "Wait, that was an option?! No one told me that was a concern!"), I still have to go back in five years for another colonoscopy.

So now I still have irregular stools. Usually it's diarrhea if it's abnormal, but sometimes it's constipation. Now I still have abdominal and stomach cramps that are often accompanied by horrendous back pain and occasionally still the rash/hives itching that goes away in less than an hour. I wake up in the middle of the night sometimes weirdly flushed and sweating and spend half an hour to an hour in the bathroom, and most of the time I still feel like I have to go even when nothing more is going to happen at that particular point in time. My mom doesn't have any IBD, but her father had Crohn's and colon cancer, and her mother's father died of colon cancer. My mother, her father, her sister, and I have all had our gall bladders removed because of stones. I don't really know about my dad's medical history. I'm tired all the time and spend way too much time in the bathroom, and so far the doctors haven't told me anything helpful except to increase my fiber.

Is it possible to have some sort of GI problem that in no way leaves its mark on the large intestine?
02-26-2014, 04:56 PM   #2
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Hi ZoeNox and welcome to the community. I'm so sorry to hear about your struggles, that must be so rough

1. A colonoscopy doesn't reach very far into your small intestine. It just takes a peak at the end of it. As such, it is possible to have inflammation higher up. That you've had Crohn's in your family makes me a little concerned.

2. One somewhat common indicator of small intestine Crohn's disease is fatigue that is often the result of vitamin B12 deficiency. I'd suggest getting it tested. It's not an expensive test.

3. I'd ask your GI their thoughts on a pill cam.

All my best to you.
It's good to be back
02-26-2014, 05:40 PM   #3
ZoeNox's Avatar
Join Date: Feb 2014
Location: Columbia, Missouri
Thank you for the suggestion about testing B12 levels! I looked it up and decided to tell my mother to have a look into that as well since she's been having a host of issues, a diagnosis for which none of the doctors she's seen can seem to agree. I will be calling my doctor back this week to ask for more options.
02-26-2014, 08:40 PM   #4
Forum Monitor
Join Date: Apr 2009
Given your family history and your symptoms it could very well be some form of IBD. As david said the procedure you had done does not view much of the small intestine, and often they do not go that far at all. Since you have elevated CRP levels it should be clear it is not IBS. Getting a scope of the upper GI would be the next logical step. Or the pill cam, don't know enough to comment on that route.

If your doctor is dismissive or you feel your problems are not being properly addressed I strongly urge you to find a new GI who will take better care of you.

Are you currently taking any medications?
02-26-2014, 09:27 PM   #5
Senior Member
Chickadee's Avatar
Join Date: Jun 2013

My Support Groups:
Have you had any testing done for carcinoid syndrome?
Mastocytic Enterocolitis
SIBO, Bacterial and Fungal Overgrowth of Intestines
plus a host of other diagnoses
Taking cholestyramine

Crohn's Disease Forum » Your Story » Clear Colonoscopy, Symptoms Persist, No Diagnosis?
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