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Crohn's Disease Forum » Tests for IBD » Angry and perplexed over tests


10-20-2017, 01:43 PM   #1
Tincan
 
Join Date: Oct 2017
Location: California
Angry and perplexed over tests

Hi, everyone. Starting in june I got chronic gut pain and a slew of other symptoms. I went to the emergency room three times. 1st time they gave me an ultrasound and found nothing. Second time they did nothing and told me it was all in my head(really pissed me off). Third time I got a ct scan, and they said it was likely crohns. I had distention in my small bowel and possible distention in large bowel. I started a low fiber diet and it seemed to be the only thing to help.

I started to see a nurse practitioner at a gastroenterology office. After telling her my history and symptoms, she thought it was most likely Crohn's. I got a colonoscopy, which came up with nothing. Then I got a ton of blood work, nothing. Just a few days ago I went to get an MRI, thinking this'll finally help. It came up with nothing. I am extremely confused. I even went through the hassle of getting my ct scan pics and reports from before so they could compare the test results.
I already have an extremely limited diet having possible celiac disease(can't eat wheat or things that touched wheat without strong reaction and celiac like symptoms), and being a vegetarian/part vegan. (The NP thought it was probably celiac, too). I was able to get a handle on that diet but the low fiber pushes it over the edge and I know i'm suffering from malnutrition.
The chronic pain has limited my life. I'm a student and am only taking 6 credits right now and searching for a job, but have a really limited selection due to pain and anxiety. I have to eat low fiber so I can keep functioning otherwise the pain would overwhelm me.

I'm wondering if i'm doing something wrong. Am I supposed to get off the low fiber before these tests so that they become more obvious? My NP didn't tell me to do that. Do they only show up when I am intensely sick? I was really bad obviously when visiting the ER and got the CT scan. Are there other tests that work better? Really confused and angry because this is holding back my life and i'm still stuck in the diagnosis stage. Is there any advice people have? Thank you for taking the time to read.
10-20-2017, 04:31 PM   #2
ronroush7
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Hi. I would keep pushing until I got results .
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10-20-2017, 06:35 PM   #3
MaryCherub
 
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It took four years (of tests and doctors) for me to get a proper and final diagnoses.

Sorry but just keep pushing on until you get one.

Either that or give up and suffer in silence

Not much choice really......

10-20-2017, 06:51 PM   #4
MaryCherub
 
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I have to eat low fiber so I can keep functioning otherwise the pain would overwhelm me.

Have you tried juicing?

There is limited or no fibre in juice; depending on how much you strain it.

You can live solely on it for a few days - I went 22 days straight once.

It can help to reduce the pain (especially carrot juice)

It can give you an energy boost

And best of all, it allows you to quickly and easily absorb much needed nutrition, that otherwise you may be missing out on.

Most people with IBD have trouble absorbing adequate nutrients from solid food and also manmade supplement tablets.

Think of juice as natures supplement pill!

All you need is a decent juicer. Perhaps you could borrow some money to purchase one, or pay it off in installments.

I brought my first juicer when I was on unemployment benefits and paid it off over several months, so where there is a determination there is a way to manage the cost.

Maybe even the student canteen would get one? I asked the student body group in my college to purchase a juicer and a blender; and they did.

Anyway juicing is just a suggestion, as it has been pretty much a life saver for me, since I was diagnosed with IBD.

Good luck with finding your results.
10-20-2017, 08:54 PM   #5
Tincan
 
Join Date: Oct 2017
Location: California
Hi ron roush and mary cherub. Yeah, I'll keep definitely keep going. Sorry it took you so long mary.



Have you tried juicing?

There is limited or no fibre in juice; depending on how much you strain it.

You can live solely on it for a few days - I went 22 days straight once.

It can help to reduce the pain (especially carrot juice)

It can give you an energy boost

And best of all, it allows you to quickly and easily absorb much needed nutrition, that otherwise you may be missing out on.

Most people with IBD have trouble absorbing adequate nutrients from solid food and also manmade supplement tablets.

Think of juice as natures supplement pill!

All you need is a decent juicer. Perhaps you could borrow some money to purchase one, or pay it off in installments.

I brought my first juicer when I was on unemployment benefits and paid it off over several months, so where there is a determination there is a way to manage the cost.

Maybe even the student canteen would get one? I asked the student body group in my college to purchase a juicer and a blender; and they did.

Anyway juicing is just a suggestion, as it has been pretty much a life saver for me, since I was diagnosed with IBD.

Good luck with finding your results.
I actually got one a month ago. It was pretty pricey. I haven't tried it much yet because the first time I used it, it tore up my insides pretty badly and felt awful for a week. It didn't do it the second time, but it may just have been a particular fruit I used(I threw a bunch of fruit in since I was excited). I'll definitely be trying. Thank you for the replies.
10-21-2017, 12:44 AM   #6
MaryCherub
 
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but it may just have been a particular fruit I used (I threw a bunch of fruit in since I was excited). I'll definitely be trying.

Start off gently and slowly

Small glass

Sieve fibre out

Mono (don't mix too much)

Dilute with water if you need to

Avoid fruit (maybe an apple to sweeten if needed)

Stick with vegetables mainly

Nothing too detoxing (avoid beetroot and wheatgrass in the early stages)

Avoid strong juices like pineapple

Stick with something plain like carrot

Otherwise try 12 hours on water first

I have never had problem with it
10-23-2017, 03:58 AM   #7
Guerrero
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Hi, everyone. Starting in june I got chronic gut pain and a slew of other symptoms. I went to the emergency room three times. 1st time they gave me an ultrasound and found nothing. Second time they did nothing and told me it was all in my head(really pissed me off). Third time I got a ct scan, and they said it was likely crohns. I had distention in my small bowel and possible distention in large bowel. I started a low fiber diet and it seemed to be the only thing to help.

I started to see a nurse practitioner at a gastroenterology office. After telling her my history and symptoms, she thought it was most likely Crohn's. I got a colonoscopy, which came up with nothing. Then I got a ton of blood work, nothing. Just a few days ago I went to get an MRI, thinking this'll finally help. It came up with nothing. I am extremely confused. I even went through the hassle of getting my ct scan pics and reports from before so they could compare the test results.
I already have an extremely limited diet having possible celiac disease(can't eat wheat or things that touched wheat without strong reaction and celiac like symptoms), and being a vegetarian/part vegan. (The NP thought it was probably celiac, too). I was able to get a handle on that diet but the low fiber pushes it over the edge and I know i'm suffering from malnutrition.
The chronic pain has limited my life. I'm a student and am only taking 6 credits right now and searching for a job, but have a really limited selection due to pain and anxiety. I have to eat low fiber so I can keep functioning otherwise the pain would overwhelm me.

I'm wondering if i'm doing something wrong. Am I supposed to get off the low fiber before these tests so that they become more obvious? My NP didn't tell me to do that. Do they only show up when I am intensely sick? I was really bad obviously when visiting the ER and got the CT scan. Are there other tests that work better? Really confused and angry because this is holding back my life and i'm still stuck in the diagnosis stage. Is there any advice people have? Thank you for taking the time to read.
Have you been really tested for celiac disease?
Crohn's disease should be confirmed by endoscopic results. If you colonscopy and MRI were negative then you may not have CD.

Calprotectin a stool test is a good indicator of inflammation in your bowel, so if it is strongly positive it indicates it may be Celiac or Crohn's disease.
10-23-2017, 06:49 AM   #8
valleysangel92
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Hello

Have you had proper testing for Coeliac diease? many of the symptoms can be the same as those for Crohns, so it would be really helpful to know if this is present. If you are going to have testing for coeliac, you will need to be eating gluten in order for the results to be accurate.

Crohn's is unfortunately a difficult condition to track down, its not uncommon for people to go through months or even years of testing before getting a definitive diagnosis. Although in general a colonoscopy is considered the gold standard for testing, it will only pick up Crohns that is in the large bowel, and will not rule out Crohns further up in the digestive tract. An MRI is a good step, but again not always 100% as if the inflammation is mild then it is unlikely to show.

You could try asking for something called a capsule endoscopy. This is where you swallow a small camera in the shape of a pill, which then records images of the small intestine and allows the doctors to look for signs of inflammation.

A fecal calprotectin test will show if there is active inflammation in the digestive tract, which will allow doctors to rule out anything that doesnt cause inflammation like irritable bowel syndrome.

I would definitely look at getting definitive testing for Coeliac too.

I know this is all very frustrating, I know its no consolation but it took me 5 years to get a diagnosis, and I lost count of the amount of tests and procedures I had to go through in order to pin down what was wrong. You are not alone with this, please don't give up on finding an answer. There are lots of possibilities for what is happening and slowly one by one things will be getting ruled out.

If you need any support or advice please don't be afraid to come and ask us, we may not have all the answers but we will always try to point you in the right direction and we will do everything we can to support you.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
10-27-2017, 01:40 PM   #9
Tincan
 
Join Date: Oct 2017
Location: California
Thanks everyone for the help. I didn't get tested for celiac, that's why I said it was a probably. It may be an allergy, or very bad luck that the times I accidentally ate wheat and didn't eat it matched with some other unrelated bowel disease/condition. The reason I thought it was celiac because the symptoms matched it the most compared to other things like IBS. It also had significantly different symptoms than what I have now. I'm going to get tested for celiac too. I'm getting an upper enteroscopy and they told me to start eating wheat before I do it.
Thank you for the suggestions. I'll bring up fecal calprotein and pill cam next time I have an appointment.
10-29-2017, 07:10 AM   #10
Ste76
 
Join Date: Oct 2017
Location: Eastbourne, United Kingdom
Hi, everyone. Starting in june I got chronic gut pain and a slew of other symptoms. I went to the emergency room three times. 1st time they gave me an ultrasound and found nothing. Second time they did nothing and told me it was all in my head(really pissed me off). Third time I got a ct scan, and they said it was likely crohns. I had distention in my small bowel and possible distention in large bowel. I started a low fiber diet and it seemed to be the only thing to help.



I started to see a nurse practitioner at a gastroenterology office. After telling her my history and symptoms, she thought it was most likely Crohn's. I got a colonoscopy, which came up with nothing. Then I got a ton of blood work, nothing. Just a few days ago I went to get an MRI, thinking this'll finally help. It came up with nothing. I am extremely confused. I even went through the hassle of getting my ct scan pics and reports from before so they could compare the test results.

I already have an extremely limited diet having possible celiac disease(can't eat wheat or things that touched wheat without strong reaction and celiac like symptoms), and being a vegetarian/part vegan. (The NP thought it was probably celiac, too). I was able to get a handle on that diet but the low fiber pushes it over the edge and I know i'm suffering from malnutrition.

The chronic pain has limited my life. I'm a student and am only taking 6 credits right now and searching for a job, but have a really limited selection due to pain and anxiety. I have to eat low fiber so I can keep functioning otherwise the pain would overwhelm me.



I'm wondering if i'm doing something wrong. Am I supposed to get off the low fiber before these tests so that they become more obvious? My NP didn't tell me to do that. Do they only show up when I am intensely sick? I was really bad obviously when visiting the ER and got the CT scan. Are there other tests that work better? Really confused and angry because this is holding back my life and i'm still stuck in the diagnosis stage. Is there any advice people have? Thank you for taking the time to read.


I am 8 years trying to get diagnosed
All tests normal but how is this possible ☹️ sometimes I just want to give up
And cry to myself a lot. So hard to keep strong when nobody understands the pain we go through on a daily basis
Hope you find your answer’s Bless



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