Undiagnosed - What should be my next steps/tests?

[Birka]

Hi Everyone, I am relatively new to this forum, I believe I joined a couple years ago when I initially thought I had an IBD but back then my symptoms kind of went away for 2 years and I had a normal life, but now I'm at my worst and back to this forum.

I'll try to be brief. In 2004 I got really sick and experienced this strange type of abdominal pain for some time. I had no other intestinal symptoms - no diarrhea, just some burning pain. I assumed it was related to a car accident that I had earlier, which made my whole body kind of achy and sore for some time, so I figured my intestinal muscles were affected as well. After this episode I also started having constant fatigue and joint pains. Never felt quite the same since.

Fast forward to a couple years later where I start having right-upper quadrant pains and doctors start thinking its gallbladder and send me to do ultrasounds, HIDA scans, and upper endoscopy, CT scan, which all turn out normal. Pain at that point was fleeting, it would come and go every so often but would only be severe for a few days and then gradually disappear, so I never got around to completing all the necessary testing. As soon as I felt better I stopped going back to my GI - big mistake.

Finally, fast forward to Nov '11. I get a new type of right upper quadrant pain, which starts with fever, nausea, and mouth sores. I assume it is my liver, because the pain is right under it, and go through rigorous workup at the infectious disease specialist, an ENT to rule out other issues, and now my GI. To date no test has shown anything. All bloodwork has been good with no abnormalities but I now have the following symptoms:
- constant mouth sores; burning in the stomach/RUQ area, as well as new burning feeling in LUQ;
- feeling like something is stuck in my RUQ that prevents me from breathing fully
- some days I'm somewhat nauseous and if I eat a big meal I feel severe pain
- frozen/sort of numb feeling in RUQ, as if my innervation there is cut off
- constant gas in that area that does not seem to pass properly
- upper intestinal spasm/tightness
- constant fatigue/joint pain/foot swelling
- red, burning eyes
- depression, loss of pleasure in any activities that I used to enjoy, this includes getting out of social events
-lethargy
- severe constipation
- extremely foul breath
I finally realized that this may be related to my prior episodes of abdominal pain so I decided to pursue this with my GI specialist once again. Tests I recently had:
- Ultrasound
- HIDA Scan
-CT Scan w/ constrast
- Colonoscopy (upper endoscopy was done in 2010 with the same doctor, he did not want to repeat since it was normal then).

All of these were normal. HIDA was done to rule out gallbladder issues, al normal. CT scan was normal, colonoscopy showed nothing wrong with the exception of erythema in terminal ileum, which he biopsied. I never heard back so Im assuming it did not show anything but I have another appointment with my GI on Tuesday, so I will double-check then.

He thinks that I have IBS and on the really bad days that I had told me to take Bentyl, which helped the matters very slightly but did not do much as far as relieving my whole RUQ pain and discomfort. I went to a couple other GI's who either told me similar opinions or had no answers at all. Whenever I asked straight up whether this sounds like an IBD all the GI's that I went to said that it's not typical and most likely is not an IBD. I however think differently, given all the stuff that I read here with people having atypical symptoms and having a hard time getting diagnosed, and feeling so much pain that if I wait much longer I may end up with severe complications, as my pain is getting worse.

So, with that said, and my yet another appointment coming up on Tuesday with my GI, what tests do I ask for next? Should I ask for an MR Enterography? A small bowel series? Anything else?

Any input would be appreciated. Thanks for reading this long thing.

P.S. I heard about the PillCam test, and I am afraid to go through with it for the fear of it getting stuck in my small intestine. It does feel like I have some narrowing there, and I do not want to have surgery to remove this.

___________________________________________________________
Symptoms since '04. Waxing and waining until Nov '11, now severe and bothersome, still NO DIAGNOSIS!:yfrown:

 

[Jennifer]

Hi and welcome back to the forum!

Yes MRE, MRI, Small Bowel Follow Through and remember with the pill cam they do a dummy pill first so just in case the real pill were to get stuck they'd know if it would work or not since the dummy pill either will or wont get stuck. If the dummy pill does get stuck its made out of material that's meant to dissolve. So a pill cam is still possible. Also its been two years since your endoscopy so it may show something if you're having issues that high up. Also you said you had the tests above recently. How recent is recently? Also what about blood work? http://www.crohnsforum.com/wiki/Blood-test-codes-and-results-explained Not just those tests but what about your vitamin levels as well (some of the symptoms you mentioned like fatigue and depression can be caused by vitamin deficiencies or being on the low end of the normal range) Iron, B12, folic acid, Magnesium, Potassium, Zinc, vit A, B, C, D, E etc. http://www.crohnsforum.com/wiki/Vitamin-and-Mineral-Deficiencies

 

[Birka]

Hi Crabby, thanks for your reply. M

y imaging tests have all been done this year, most of them in May-July period. My colonoscopy was two weeks ago. As far as blood tests, I had multiple CBC, an ESR (no CRP), LFTs, U and E, Hematology Diff, and Ferritin, done earlier this year, in the midst of my worst pain, all normal. They did not do vitamin levels, except for vitamin D (showed slightly deficient), and folic acid (normal). They did all food allergy tests, some auto-immune stuff, infectious diseases, food allergy tests, all normal.

I guess I'll ask for those other vitamins as well, along with CRP and Prometheus IBD test. I will also be asking for those other imaging tests and possibly a repeat of upper endoscopy.

This is all stressful on me, as I do have a highly demanding job which does not allow for much absences or laid back schedule, and I'm studying part time for my MBA, along with a certification examination for work. All this is taking a severe toll on my health, but Im being strong and persevering. But I can only go for so long with my abdominal issues being so severe.

I will keep pushing for these other tests. Thanks again!

 

[Birka]

And I had no idea they do a dummy pill test first for PillCam. I guess I shouldn't be afraid of that one after all. Will ask my GI.

 

[StarGirrrrl]

Sometimes instead of a dummy pill they do a Barium X-Ray prior to a Pill Cam to check for narrowing.

 

[Birka]

Still don't know what to do. Had my GI appointment today, he just told me that my biopsy results from the colonoscopy came back normal - there is no sign of microscopic colitis, or anything else, just some mild inflammation in the cecum and terminal ileum. My question to him was what happens next, can we do any small bowel tests. He basically replied by saying that their office does a CamPill test but he thinks Crohn's is unlikely, so he wants to try me on the amitriptyline low-dose pills because in his view what I experience is functional. If that does not work he will consider a CamPill. At this point I will try anything, even the pills, but I have strong doubts that its functional. I think I'll be pursuing other means of getting properly tested while Im waiting for these pills to kick in. In the meantime Im in constant agony, so much pain. Just hanging in there!

 

[Jennifer]

Ya if you can find another GI that would be great. I'd walk right out the door if I were told that my symptoms were "functional" and refused to do further testing. That's outrageous. I've had to do the same thing before, keep seeing the GI I hate and do what they say while I shop for another one. This way you have a doctor just in case things get worse yet you're hopeful that you'll eventually get proper treatment. Keep hanging in there and don't give up!