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:
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: