I have crohns disease, I was diagnosed by pathology after having parts of my colon and small intestine removed 10 years ago.. I have been having issues with crohns flaring up, restroom trips 7-8 times a day, pain in the abdomen, nausea, weight loss and just no appetite. Ive been to the ER and my blood test results always come back perfectly fine. I don't get it. I had a CT done and it showed slight inflammation. Another factor is everytime I go to the ER for this they find something else thats wrong(example, ovarian cysts) and assume its just that flaring it up at the moment and it will stop when whatever else is wrong heals. I just moved back to CA waiting for my insurance so I can get to a new specialist but they seem to be taking their sweet time no matter how persistent I am. Anyways, I feel like my crohns is flaring (I've been dealing with it for 10 years, i feel like i know my body) but test results say otherwise... Has anyone else had this issue and had it pan out in a positive way? ie figuring out what the heck is going on haha.
Has this happened to anyone else?
- Thread starter Jess72707
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Hi Jess. I have had a severe Crohn's flare with normal blood test results. The last time that happened, I almost died. Like you, I don't understand how to advocate for timely care when the threshold for conducting a colonoscopy (with my GI) involves abnormal blood test results. Wishing you a speedy resolution of your insurance issues and effective treatment.
I had one doctor on the east coast that was very receptive to how I felt I was doing and treated on bloodtests(or not) PLUS what I thought was going on.. The ER just probably isn't the place to keep going to, hopefully insurance does go through, thank you! Well wishes to u.
I haven't in about a year and those came back normal but a few hiccups. They base everything off of those results plus the blood tests.
Anna's Bandit
Member
Jess : You need a new scope, last year is LAST year.
I will tell you what I had done recently.....blood tests, stool sample tests, CT Scan with contrast and endoscopy/ colonoscopy with biopsies. Some people get an MRI. Some people get the camera pill. And I agree, the ER is not going to help you. You need a Specialist. Hope your insurance gets all straightened out. Take Care.
I will tell you what I had done recently.....blood tests, stool sample tests, CT Scan with contrast and endoscopy/ colonoscopy with biopsies. Some people get an MRI. Some people get the camera pill. And I agree, the ER is not going to help you. You need a Specialist. Hope your insurance gets all straightened out. Take Care.
Understand: my blood work has come back clean ever time. But the CT Scan and endoscopy and colonoscopy come back saying something very different.
Honestly you are your best Dr sometimes.. Hope you can get your insurance sorted quickly. Up hear in canada, its not the insurance that is the challange it is the long wait to see a specialist.
Honestly you are your best Dr sometimes.. Hope you can get your insurance sorted quickly. Up hear in canada, its not the insurance that is the challange it is the long wait to see a specialist.
Jess : You need a new scope, last year is LAST year.
I will tell you what I had done recently.....blood tests, stool sample tests, CT Scan with contrast and endoscopy/ colonoscopy with biopsies. Some people get an MRI. Some people get the camera pill. And I agree, the ER is not going to help you. You need a Specialist. Hope your insurance gets all straightened out. Take Care.
I agree, you need a specialist. Best of luck.
Anna's Bandit
Member
My last post sounds a bit harsh ? Sorry if it sounded that way.
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Jess, when I flare my symptoms are like the ones you shared but my bloods are usually normal. However, my crohns is active and severe even with normal bloods... my MRE images show something different (active crohns) Jess, are you on any medications? Us crohnies typically need to be on meds to control our flares. It sounds like you need a visit to a GI doctor.
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After my resection, I was problem free for a few years. Then I had abdominal cramps more frequently, causing me to miss work.
I finally noticed a pattern with my diet and when the cramps happened. I figured out the "trigger foods" through a (painful) process of elimination. Unfortunately no two CD patients have the same trigger foods. But I have been able to control my CD through diet (and minimal prescriptions).
My trigger foods were spicy condiments, spicy processed meats, raw nuts, tomato soup, dense chocolate desserts. Luckily not much but I sure miss pepperoni pizza.
Try staying on a bland diet for 4-5 days. If your system calms down then something in your diet is triggering it.
I finally noticed a pattern with my diet and when the cramps happened. I figured out the "trigger foods" through a (painful) process of elimination. Unfortunately no two CD patients have the same trigger foods. But I have been able to control my CD through diet (and minimal prescriptions).
My trigger foods were spicy condiments, spicy processed meats, raw nuts, tomato soup, dense chocolate desserts. Luckily not much but I sure miss pepperoni pizza.
Try staying on a bland diet for 4-5 days. If your system calms down then something in your diet is triggering it.
