Crohn's Disease Forum » Support Forum » Undiagnosed Club » Negative test results...can a capsule endoscopy still show Crohnís?Advice appreciated


08-26-2018, 06:42 AM   #1
BeckyyL
 
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Negative test results...can a capsule endoscopy still show Crohnís?Advice appreciated

Hi Everyone!

I am in the undiagnosed club and have been for 2 years now. Being this sick for 2 years is so tiring, so Iím hoping some of you have some insight for me. Iím 23 years old and have been having pretty bad symptoms for a little over 2 years now. I have always had a weak stomach as a kid but it tapered off as I got older.
In April 2016, I got really sick with what was thought to be a stomach virus. I was throwing up bile, was going to the bathroom all day, and had bad urgency issues. While it was horrible, it only lasted 2 days. Fast forward to June 2016, I started getting diarrhea...at first I was going about 4-5 times a day. But after a while, it got worse and I was going 8-10 times a day. It wasnít always watery but it was usually very soft. It was so hard for me to go to school and work going to the bathroom this much, so thatís when I started taking Imodium. The Imodium wasnít really helping and I didnít know what else to do.
Then I started getting stomach cramps almost every time I ate. I would eat something, the cramps would come, and I would immediately have to go to the bathroom. Before I knew it, I had lost 15 pounds in only a couple of months. I was getting worried because every food I thought was safe, began giving me a problem...even just white rice. I was losing my appetite and slowly began getting scared to eat. I am still to this day scared to eat out with friends because I have to go to the bathroom almost every time...unless I donít eat. I also began feeling tired all the time and completely drained. I had a few episodes where I would get super dizzy, weak, faint, pale and tired. I would have horrible stomach cramps and would have to lay down until it passed. It would only last for a few hours...the most it ever lasted was a day...but it has happened multiple times. On a few occasions, I also threw up after eating. It didnít happen often, but enough that it was noticeable. So I decided to make an appointment with my GP who immediately referred me to a gastroenterologist.
At my first appointment I went over my symptoms and my doctor immediately scheduled a colonoscopy because he thought I had Crohnís disease or Ulcerative Colitis, and a blood test for celiacís disease. At this point my weight loss was getting worse and I had lost a total of 30 pounds. My colonoscopy plus biopsies and blood test came back completely normal, so my GI said I had IBS, gave me a prescription for Imodium and sent me on my way. I went back because it wasnít helping, so he switched me to Viberzi. After that medicine failed, I was losing hope. I also tried Bentyl, and hyosciamine, which did not work out for me. They made the cramps worse, and made me feel dizzy, and out of it. I also had blurry vision to the point where I couldnít read a book because everything blurred together. This GI told me that I had IBS and I pretty much just had to deal with it. I was getting frustrated and still felt so sick, so I decided to get a second opinion.
My friend who has severe crohnís disease (she has been in remission for 10 years!) recommended I go to her GI. Her Crohnís was very severe but she said I have a lot of the same symptoms she did before she was diagnosed. My first appointment with her was great. She scheduled a lactose and fructose intolerance test which both came back positive...I was finally feeling hopeful. I went on the low fodmap diet thinking my symptoms would disappear...but that was far from the truth.
The diarrhea and stomach pain was still horrible and now I was getting a constant feeling of having to go to the bathroom. No matter how many times I went, I never felt like I was finished going. And everytime I went, I had horrible cramps, like I was pooping out glass (sorry! TMI) I was also pooping out a lot of mucus and some blood, even without a bowel movement. I know I do have hemorrhoids, so the blood might be from that, but the mucus is still a mystery to me. Sometimes I would think I had to go to the bathroom, but when I was done, it was just mucus. There is also always undigested food in my BMís. I started getting really depressed because I wasnít feeling any better but I wasnít getting any answers.
My GI then prescribed me Colestipol and scheduled more blood tests and some stool samples...Calprotectin, a few for parasites, and some to rule out an infection. Those tests all came back negative,(not sure what the exact number were) and the Colestipol wasnít working as good as I hoped it would. Then she prescribed me Lomotil, which I read good reviews about, so I was hopeful. (I am still taking Lomotil by the way) While it does help a little, I still donít feel great and the side effects are pretty bad. It makes me feel so nauseous, almost to the point where I feel like I have to throw up. It also makes me super tired...like I can sleep for 11 hours straight and still be tired the next day, which definitely isnít good since Iím starting nursing school in a few days.
I begged for more tests, because I was feeling so sick and I needed answers. So she scheduled a sigmoidoscopy...and what do you know...that test and biopsies for that also came back completely normal. I was at a loss. Still feeling completely horrible, tired, weak, and in need of answers.
As a last ditch effort my GI said we could try the pill cam...and thatís where Iím at now. I just scheduled that for October, pending insurance approval. So as of right now Iím still diagnosed with IBS, but I think itís more than that. Not a single day goes by that I donít have cramps, or nausea, or pain, or fatigue. I feel sick everyday, and that seems unusual for IBS. My 30 pound weight loss is also a big reason for thinking itís something other than IBS. My GI said she is looking for Crohnís and Celiac with the pill cam.
For a while, she was a little weary about a Crohnís diagnosis, since my Calprotectin was low, but I heard that is not always a reliable test. Sheís back on thinking it might be Crohnís, since I still have symptoms, so I guess weíll see after I get approval. Iím just really looking for something to validate how bad I feel all the time! So thatís my story, sorry itís so long! Iím just looking for some answers. Any advice on what you guys think it is, or what else I can do, would be super helpful! I am starting nursing school on Monday and I am super nervous about it because of how horrible Iíve been feeling. Any insight is appreciated! Thanks for listening!

Becky
08-26-2018, 08:43 PM   #2
Jabee
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A capsule endoscopy can definitely help with a diagnosis; with a colonoscopy only the colon and a small bit of the end of the small intestine can be visualized. Have you had an upper endoscopy? That can only go as far as the duodťnum leaving the jejunum and ileum completely un-visualized. Another good way to diagnose intestinal inflammation is an MR Enterography (basically an MRI with contrast). Both the capsule endoscopy and MRE are valuable tools in diagnosing crohnís of the small intestine. I hope you get some answers soon.
02-09-2019, 12:21 PM   #3
Cable
 
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Location: Miami, Florida
Hi, I know this is an old post but have you gotten any update? How did you capsule go?

Also, just a side note has your GI mentioned anything about your gallbladder? Cramping, pain, vomiting bile, and mucusy stools can all be signs of either a low functioning gallbladder (biliary dyskinesia) or gallstones.

That being said a capsule endoscopy is a good idea, I had one and got SOMEWHAT diagnosed though all my bloodwork and biopsies came back negative for Crohn's. I had some patchy ulcerations in my jejunum but my GI said other things could cause that yet he still diagnosed me with Crohn's. I'm going to another GI soon for a second opinion.

Hope you're doing well.
02-09-2019, 08:17 PM   #4
Merv S
 
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As Cable wrote, bile salts contamination is a possibility, however, if the gall bladder was involved, the pain that you would experience from cholecystitis would be some different from what you have described.

It is a little surprising that your GI hasn't investigated the possibility of a bacterial infection. Has a trial with Flagyl ( Metronidazole) or any other antibiotic ever been mentioned?

Mind you, the jury is out as to what role bacteria, viruses, or more recently canvassed, fungal agents might have upon the gut. There is a mass of information out there in Google Land, but none of it is conclusive.

I agree that capsule endoscopy is worth a try. As Jabee mentioned, a gastroscopy is probably worth consideration. I was diagnosed years ago with Short Barrett's syndrome in my oesophagus, which according to my GI was Crohn's related. All that amounts to is a change in the cellular lining structure of the' food tube' which can, under some circumstances, morph into Ca. Having said that, I am asymptomatic!

It would be nice to know how you are going. Hoping that things are more positive for you.
Merv
02-25-2019, 11:42 AM   #5
MissLeopard83
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One thing that came to mind is the feeling of pain that you experience during eating. I've been following this young lady's story on YouTube who, for a long time, appeared to have IBD or Celiac but it actually was Median Arcuate Ligament Syndrome (MALS). The celiac artery near the spine becomes compressed and causes pain and problems with digestion. A surgeon can go in laparoscopically and make small cuts around the ligament to relieve the compression and it, very often, causes the patient to feel MUCH better. Sometimes, there can be scarring, however, of the artery if the compression has occurred for too long so it might be a good idea to get a consultation. A Google search will bring up information on MALS and how it is diagnosed. The girl I follow was diagnosed thru a CT scan with contrast. She had so many tests, like you, but she finally got the diagnosis. Hope this helps!
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Chronic gastritis, mild hiatal hernia, diverticulosis, ASCA-IgG positive, low IgA levels, non-Celiac gluten sensitivity; currently undergoing more diagnostic testing by GI doctor
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