Could this be crohn's? Is there more testing I should try getting?

[yp390]

Long story short:
About ten years ago I started getting constipation with bloating and abdominal pain. Was pretty much tested with all the tests; blood tests, allergy, x rays, mri, ultrasound, colonoscopy, endoscopy. Everything came back negative. Never had bleeding or fever.

For eight years, I continued on with abdominal bloating or distension which is there pretty much all the time from the time I wake up till when I go to sleep. After eating its worse, but it's pretty much always there with varying degrees. Continued on with varying levels of constipation from mild or none to more. Pain in the abdominal area. All in all, pretty much hell.

Recently, I felt it got worse. The bloating and pain got worse. I felt the bloating was spreading to higher up in my abdomen, and lasting for much longer. Its under my ribs also, which has kept me up at night. Never in eight years did the bloating and pain keep me up, even though I have had plenty of pain. I also started getting lots of burping, which I didn't have in eight years of ibs. I decided to go to both my primary care doctor and gastro. I had a hydrogen methane glucose breath test which came back negative. I had blood tests which were all normal besides for b12 which was a bit low. Something like 265. Then I got a ct scan which showed swollen lymph nodes in my small intestines. Went for colonoscopy and endoscopy which both came back negative.

(A side note. Lately, my bones have been cracking/popping all over. Not sure if this is connected in anyway.)

So my question is: Can this still be crohns which wasn't detected in my small intestines since the scopes cant reach most of the small intestines.
On one hand: I have no bleeding, or diarrhea. However, some inflammation was spotted on ct scan. I also have a bit low b12. And my symptoms don't seem to be regular IBS.

What do you think? Is it worth getting the pill cam test? Are there other tests that I could be missing that could possibly pick up on this?

 

[Trysha]

Might be worth getting the pill cam...have you discussed this with the GI?
Also has anyone suggested a dexa scan to check the bones for osteoporosis.
Have they ruled out gallbladder problems?
Tests can be expensive in the USA.....do you have insurance coverage for tests
Feel better soon
Trysha

 

[ronroush7]

I don't know but you might ask about an enterography.

 

[Fosterfamily2303]

My first thought is gastritis because of bloating and burping and then IBS with contsipation . But then you also have information in colon . Have they did biopsys when Endo and colonscopy done ? Have they ever tested blood SED or CRP? Those are information markers

 

[eleanor_rigby]

I'm also thinking pill cam

I've also had Crohn's probably 10-12 years and have never experienced bleeding or diarrhea

 

[yp390]

Might be worth getting the pill cam...have you discussed this with the GI?
Also has anyone suggested a dexa scan to check the bones for osteoporosis.
Have they ruled out gallbladder problems?
Tests can be expensive in the USA.....do you have insurance coverage for tests
Feel better soon
Trysha

I am going to make an appointment with my primary care to discuss the pill cam and other stuff. I don't care for my gi. He doesn't seem to care to much and just thinks it's ibs. I need to find another gi.

What makes you think it's osteoporosis? The bone cracking/popping that I have is not actually breaking the bone, it just makes noises of cracking/popping.

I am not sure if they ruled out gallbladder problems. The ct scan came saying the gallbladder looks normal. Are there any other tests for gallbladder problems?

I have insurance, but it's not the best plan. The ct scan cost me $500 copay and the colonoscopy/endoscopy cost me $1000 copay. I am willing to spend up to another $1500 in copays this year (unless the doctors suspect something serious and I need more testing than that.) Less that four months till 2017, and I can get a better plan which will have much lower copays.

 

[yp390]

I don't know but you might ask about an enterography.

Is this the same thing as the ct scan that I had? I had a ct scan of abdomen and pelvis.
I needed to drink two bottles of this white stuff before the ct scan, and then they put some dye in me right before the scan.
All that came up was swollen lymph nodes in the small intestine.

Was this the same test that you are referring to?

 

[yp390]

My first thought is gastritis because of bloating and burping and then IBS with contsipation . But then you also have information in colon . Have they did biopsys when Endo and colonscopy done ? Have they ever tested blood SED or CRP? Those are information markers

I have thought about gastritis, but the stomach looked normal in the endoscopy. The gi did take a biopsy fo the stomach to test for h pylori, so will see, although I personally doubt it.
I also, don't have nausea or vomiting and no blood in the stool to my knowledge.

When you said "But then you also have information in the colon", what did you mean? Did you mean to say inflammation? They did do biopsies in small intestines, stomach and colon and I am waiting on results. Should be another week or so. But from the report the biopsy in the stomach is for h pylori, the biopsy in the small intestines is for celiac and I am not sure what the biopsy in the colon is for?

I am not sure if I got blood sed or crp tests. I got a bunch of blood tests, but don't see that among them. I will ask my primary care next week if I was tested for that. Thing is, they have found some inflammation in the lymph nodes of the small intestine, so not sure if that test will help with anything.

 

[Fosterfamily2303]

I have thought about gastritis, but the stomach looked normal in the endoscopy. The gi did take a biopsy fo the stomach to test for h pylori, so will see, although I personally doubt it.

I also, don't have nausea or vomiting and no blood in the stool to my knowledge.



When you said "But then you also have information in the colon", what did you mean? Did you mean to say inflammation? They did do biopsies in small intestines, stomach and colon and I am waiting on results. Should be another week or so. But from the report the biopsy in the stomach is for h pylori, the biopsy in the small intestines is for celiac and I am not sure what the biopsy in the colon is for?



I am not sure if I got blood sed or crp tests. I got a bunch of blood tests, but don't see that among them. I will ask my primary care next week if I was tested for that. Thing is, they have found some inflammation in the lymph nodes of the small intestine, so not sure if that test will help with anything.

Yes it was meant to say inflammation . Stupid auto correct lol. The lymph node thing can be from infection (such as h. Pylori or the stomach flu ) , it can also be from a cancer or from IBD (UC or Crohns ). Have you found any certain food to make pain worse ?? My colonscopy looked "normal " but biopsy showed it was active . Also I had surgery to look for Endo and the GYN found active disease on my outside of colon vs inside . The outside of your colon is to be pink and mine is white . They think my sister has IBD now too. She is also constipated and ha stomach pain and nausea when she eats . She found beef , salad and popcorn, corn makes it worse (just like me). She has lost about 20 lbs on a few months though . I haven't lost weight but have direhha a lot . Once bleeding the rest not .

I would still do the SED and CRP blood work .

 

[yp390]

Yes it was meant to say inflammation . Stupid auto correct lol. The lymph node thing can be from infection (such as h. Pylori or the stomach flu ) , it can also be from a cancer or from IBD (UC or Crohns ). Have you found any certain food to make pain worse ?? My colonscopy looked "normal " but biopsy showed it was active . Also I had surgery to look for Endo and the GYN found active disease on my outside of colon vs inside . The outside of your colon is to be pink and mine is white . They think my sister has IBD now too. She is also constipated and ha stomach pain and nausea when she eats . She found beef , salad and popcorn, corn makes it worse (just like me). She has lost about 20 lbs on a few months though . I haven't lost weight but have direhha a lot . Once bleeding the rest not .

I would still do the SED and CRP blood work .

Well, I'm waiting for biopsy results on h pylori. I don't think I have the stomach flu. This has been going on for a few months now (in addition to years of stomach issues). I have not found certain foods to make it worse. Everything is bad. Only difference I find is solid foods vs liquid. Liquid is better. Like yogurt. But regardless, I have been waking up totally bloated and in pain. Well after eating.

What is endo? Is it Endometriosis? I am a male, so don't think that could be an possibility.

I will ask my doctor about SED and CRP.

 

[Fosterfamily2303]

Well, I'm waiting for biopsy results on h pylori. I don't think I have the stomach flu. This has been going on for a few months now (in addition to years of stomach issues). I have not found certain foods to make it worse. Everything is bad. Only difference I find is solid foods vs liquid. Liquid is better. Like yogurt. But regardless, I have been waking up totally bloated and in pain. Well after eating.



What is endo? Is it Endometriosis? I am a male, so don't think that could be an possibility.



I will ask my doctor about SED and CRP.

Yes on Endo. That has nothing to do with IBD. That's when they were not sure what was going on with me and assumed women issues lol . I had everything thrown at me . Endo, cyst, IBS , gastritis , GERD etc. it wasn't until the GYN found the transverse colon white, and the following day is when I had recital bleeding. After that a colonoscopy was done again but with biopsy and that's when I got my IBD dx. You can ask for a HIDA scan . That checks the gallbladder (that's what dx mine as not working correctly ). You can also ask for an ERCP (that looks Into the stomach , Intestine, and ducts of the gallbladder, pancreas , and liver. (But warning this gave me pancreatitis which is SO painful ).

I don't wanna scare you have they looked into the lymph nodes being inflamed ? There lots of cancers that can cause that . I would find another doctor !!!

 

[ronroush7]

I agree with you about a second opinion. The enterography is a digital imaging test where you have to drink contrast.

 

[Clash]

I wouldn't opt for the MRE first since you've already had a CT scan, they're similar. A pill cam would be a good option as it could look at the rest of the small intestine.

Did you say you had been tested for SIBO? That's another option.

Hope you find some answers soon.

 

[ronroush7]

Is this the same thing as the ct scan that I had? I had a ct scan of abdomen and pelvis.
I needed to drink two bottles of this white stuff before the ct scan, and then they put some dye in me right before the scan.
All that came up was swollen lymph nodes in the small intestine.

Was this the same test that you are referring to?

I think it is very similar.

 

[yp390]

I wouldn't opt for the MRE first since you've already had a CT scan, they're similar. A pill cam would be a good option as it could look at the rest of the small intestine.

Did you say you had been tested for SIBO? That's another option.

Hope you find some answers soon.

I had the hydrogen methane breath test with glucose (not lactulose) for sibo. It came back negative. My doctor still wanted to try rifaximin, but was denied by insurance. He gave me another antibiotic which was ineffective.

 

[yp390]

Yes on Endo. That has nothing to do with IBD. That's when they were not sure what was going on with me and assumed women issues lol . I had everything thrown at me . Endo, cyst, IBS , gastritis , GERD etc. it wasn't until the GYN found the transverse colon white, and the following day is when I had recital bleeding. After that a colonoscopy was done again but with biopsy and that's when I got my IBD dx. You can ask for a HIDA scan . That checks the gallbladder (that's what dx mine as not working correctly ). You can also ask for an ERCP (that looks Into the stomach , Intestine, and ducts of the gallbladder, pancreas , and liver. (But warning this gave me pancreatitis which is SO painful ).

I don't wanna scare you have they looked into the lymph nodes being inflamed ? There lots of cancers that can cause that . I would find another doctor !!!

I am going to meet with my primary care again, and he may want to do more testing on the lymph nodes. I think both my pcp and the gi were not too worried about the lymph nodes based on their size. I also have a friend who is a radiologist. I am picking up my ct scan today to show him and see what he thinks. When I spoke to him, he wasn't too concerned about anything dangerous with the lymph nodes. He says he sees them all the time and are rarely something dangerous.

But again, it's very possible by pcp will want to do more testing on that.

 

[yp390]

So the biopsies came back negative for microscopic inflammation in the colon and the duodenum. And no h pylori in the stomach.

What's next?

Do I push for the pill cam?
Push endoscopy?
Faecal calprotectin test?
Sed rate and crp blood test?
Leave it where it is and continue living this hell?

Get a doc to prescribe some crohns meds and see if it makes a difference? (
Doubt anyone would do that.)

My doc just wants to put me on nortriptyline for ibs.
:sign0085::sign0085::sign0085::sign0085::sign0085:

 

[kenvh]

So the biopsies came back negative for microscopic inflammation in the colon and the duodenum. And no h pylori in the stomach.

What's next?

Do I push for the pill cam?
Push endoscopy?
Faecal calprotectin test?
Sed rate and crp blood test?
Leave it where it is and continue living this hell?

Get a doc to prescribe some crohns meds and see if it makes a difference? (
Doubt anyone would do that.)

My doc just wants to put me on nortriptyline for ibs.
:sign0085::sign0085::sign0085::sign0085::sign0085:

How did it went?
I got same thing as u: I got a scan that says I have multiple lymph nodes swollen. how did it go for u now these days? any news?

 

[eastman18]

CRP, ESR, Calprotectin and colonoscopy can rule out Crohn's in 99% of the cases. Do calprotectin test and CRP + ESR

 

[kenvh]

Calprotectin tests always positive. Ultrasound showed inflammation too. Crp negative. I dont believe in crp. Too many people with crohn and normal crp levels. Crp is useless in some. Did have mri yesterday. Maybe that will say more.