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Crohn's Disease Forum » Your Story » Which tests should still be considered - for Crohns dx


08-27-2016, 02:35 PM   #1
SBee
 
Join Date: Aug 2016
Which tests should still be considered - for Crohns dx

Hi everybody-

So thankful for this helpful forum.
I have been working with my doctor to help diagnose my ongoing symptoms, I feel like unless I ask for another test I won't find any more answers.
Here are the symptoms I have been feeling for about 18 months:

- Dull ache right side below ribcage
- Above hip dull ache, sometimes wraps to lower back
- Abdominal bloating (more on right side), sometimes feels like something is bumping against things inside me on the right side, when I am hunched over.
- Uncomfortable sleeping on my right side, feels like pressure smooshing my rib cage.
- I have been battling constipation most of my life - can be extreme even though i only basically eat fruit, veggies, grains, and plant-based protein.
Also more recently feeling gas pains. The only time I feel near normal is when I have as little food as possible in my system.

I have had an abdominal ultrasound last week - normal (second one in 18 months)
I had a normal colonoscopy a few months ago with the exception of seeing a few diverticula (no diverticulitis)
I had a normal upper endoscopy about 5 years ago to investigate heart burn which i don't have much anymore.

My dr is now saying they think it's all stemming from by constipation. I think there are too many issues, and its nearly constant, though some symptoms ebb and flow in severity.

What other tests should i be investigating? Will Crohns show on a colonoscopy? Any help or insights much appreciated.
Thank you for reading my post!
08-27-2016, 03:26 PM   #2
ronroush7
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I might suggest an enterography. I hope you get some answers soon.
08-27-2016, 05:10 PM   #3
DustyKat
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Location: New South Wales, Australia
Scoping with biopsies remains the gold standard for a diagnosis of IBD. That said, that is only applicable where a scope can reach, which means most of the small bowel remains untouched. Imaging is the only way to obtain an idea of what may be going there so…ultrasound, which you have already had but in my personal opinion whilst I think they are very useful test I do feel that unless you are targeting a specific area there is too much room for things to be missed. You would then move onto scans, CT is faster but involves radiation, MRI is slower but no radiation. As Ron has suggested, enetrograghy, it is a CT or MRI but the method of prep allows for enhanced viewing of the small bowel.

If you have active IBD or have had previous evidence of chronic inflammation, scarring, etc, then it would be evident on visual scoping. Some inflammation is not evident to the naked eye, microscopic, hence the need to have biopsies done when scoped. Since at this point all areas that have been scoped appear to normal other things you could have done that may indicate an issue with the small bowel would be blood tests to look for deficiencies that suggest issues with absorption and inflammatory markers:
  • Iron studies
  • B12
  • Vit D
  • Magnesium
  • Zinc
  • CRP and ESR, these are the inflammatory markers

Since serum (blood) inflammatory markers will indicate inflammation present anywhere in the body I suggest you have a Faecal Caprotectin done. It is a simple stool test that tests for inflammatory markers in the bowel only.
You could also have an ASCA blood test done if indicated. It isn’t highly accurate, about 70%, but may give an idea if you have immune proteins present in the blood that point to a person’s likelihood of having or having the potential of Crohn’s or UC.

We also have an undiagnosed sub forum that you may like to read through:
http://www.crohnsforum.com/forumdisplay.php?f=75

Unfortunately for some a diagnosis of any sort remains elusive for years and it is not that uncommon.

I hope you soon get solid answers and find a positive way forward. Good luck!
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Mum of 2 kids with Crohn's.
08-27-2016, 06:00 PM   #4
Julia S
 
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Location: São Paulo, Brazil

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Hi there! Recently diagnosed myself and I agree with everything said above. I would only add one thing: the test that finally gave me my diagnosis was a capsule endoscopy. The procedure is very simple: you swallow a vitamin pill sized camera that takes around 2-5 pictures per second of your GI tract and sends them wirelessly to a recorder you wear around your waist for the duration of the exam (usually 8-10 hours as that is how long the camera´s battery lasts). This was the exam that made it clear I had inflammation in my small bowel, but in a region not accessible by colonoscopy or endoscopy which showed healthy mucosa. You could also have a DBE (double ballon endoscopy) if your doctor feels the need for biopsies. There are upper and lower DBEs and they can reach much farther into the small bowels than a normal endoscopy and can be very useful. And, don´t hesitate to switch doctors if yours isn´t being helpful. I had to go through more than one doctor myself.
08-27-2016, 07:59 PM   #5
MissLeopard83
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Hi everybody-

So thankful for this helpful forum.
I have been working with my doctor to help diagnose my ongoing symptoms, I feel like unless I ask for another test I won't find any more answers.
Here are the symptoms I have been feeling for about 18 months:

- Dull ache right side below ribcage
- Above hip dull ache, sometimes wraps to lower back
- Abdominal bloating (more on right side), sometimes feels like something is bumping against things inside me on the right side, when I am hunched over.
- Uncomfortable sleeping on my right side, feels like pressure smooshing my rib cage.
- I have been battling constipation most of my life - can be extreme even though i only basically eat fruit, veggies, grains, and plant-based protein.
Also more recently feeling gas pains. The only time I feel near normal is when I have as little food as possible in my system.

I have had an abdominal ultrasound last week - normal (second one in 18 months)
I had a normal colonoscopy a few months ago with the exception of seeing a few diverticula (no diverticulitis)
I had a normal upper endoscopy about 5 years ago to investigate heart burn which i don't have much anymore.

My dr is now saying they think it's all stemming from by constipation. I think there are too many issues, and its nearly constant, though some symptoms ebb and flow in severity.

What other tests should i be investigating? Will Crohns show on a colonoscopy? Any help or insights much appreciated.
Thank you for reading my post!
I wasn't planning to post anymore, but this sounds much like what I experienced in my journey to find some answers. I had recurrent pain/pressure/fullness in my right upper abdomen which both my former and current GPs thought was related to gallbladder disease. My current one sent me for an ultrasound which was negative for stones/sludge but they found I had a fatty liver. She referred me to the GI doctor who did a HIDA scan, upper GI endoscopy, colonoscopy, SIBO breath test, and CT enterography - all of which came back negative. I got so annoyed that all these symptoms were being attributed to IBS by my GI doctor because I knew already that I was diagnosed with IBS in 2003 by a primary care doctor (saw him at a doc-in-a-box). The GI doctor made me feel as though all these symptoms were in my head.

A couple weeks ago, I went to the emergency room with sharp lower back pain on my right side. My mom thought it was a kidney stone. The ER doctor was useless - I saw him a total of 10 minutes or less the whole 6 hours I was there. He ran bloodwork and a urine sample but told me he couldn't find anything and told me to follow-up with my GP. This was after I told him I had the CTE done and it came back negative with only cysts on my kidneys. The ER doctor left me laying in that room and never once did a scan or even mention it. I never got any answers from that visit.

My GP thought that I probably had an ovarian cyst and said to mention it when I saw my GYN doctor the next week (already had the appt before the ER visit). Well, Thursday, I went to see him and mentioned the ER incident as well as some crazy bleeding I've been having since I started the DP shot for cramping and heavy periods. He performed a T.V. ultrasound and saw that my right ovary was normal and then looked at my uterus and saw that my uterine lining was too thick for someone on progesterone. He mentioned endometriosis - something I've suspected but never been tested for. Suddenly, all the symptoms made sense - horrible constipation on my cycle, abdominal pain, bloating, headaches, extreme fatigue, pain in my upper thighs coinciding with my cycles, lower back pain (including the pain that sent me to the ER), horrible cramping, nausea, etc. He prescribed surgery - operative laparoscopy, hysteroscopy with D&C - and gave me Tylenol 3 for the pain. SO much better that the ER doctor and GI doctor combined. I know that I'm not crazy and someone is doing something to give me answers without looking at me like I'm craving attention. I'm having the surgery on October 12th and I'm hopeful it will verify the diagnosis of endometriosis, but my doctor wants to rule out endometrial cancer (my grandmother had it at 67 and she's now 81) as well as uterine fibroids.

Anyway, my point is that if you are found to not have IBD like I was, look toward other specialties for a diagnosis. My GYN doctor is a lifesaver and I really appreciate him acting quickly and getting me the help I need. Endometriosis can cause all sorts of GI problems since it can create a web in your abdominal cavity and attach itself to your internal organs. I believe the cysts on my kidneys are not cysts at all but endometrial lesions - especially since they are in my pelvic region.

http://centerforendo.com/endometrios...owel-symptoms/

Hope this helps!
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Severe IBS-M with gut dysmotility and lactose intolerance; Celiac disease; unspecified joint pain and fibromyalgia
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