Today I saw my GI with the results of a capsule endoscopy and he said he thinks I have Crohn’s. I am a 24yr old female, 130lbs 5'6'', who has been struggling with severe abdominal pain for about 21months now – 2 surgeries, 9 doctors, and an ER visit later, I still had no answers. My abdominal pain developed over a matter of a few weeks and got steadily worse over the last 21months. I feel ill most of the time (empty tummy or full, it doesn’t matter). I have a great deal of tenderness in my abdomen, along with a palpable mass which doctors seem to brush off…although it freaks me out! I had surgery for endometriosis – they found some, but the doctor said it probably wasn’t causing the pain. I then had surgery to fix a trocar hernia as a result of the previous surgery – again, not the cause of the pain. Other symptoms include: nausea, dizziness, severe pain under ribs and ribs themselves are always very tender to the touch (particularly lower right ribs), sharp stabbing pains in abdomen, shooting pains in extremities (particularly right forearm – often causing me to drop what I am holding) not brought on by movement, fatigue (but not to where I am bedbound – I just am much more tired than I’ve ever been), extremely tired/sore muscles for no reason, the feeling of not recovering well after run/exercise, and "tired" breathing (sore behind sternum and it wears me out to breath). I also have some extra weird ones like ringing in my left ear and random muscles spasms – mainly to where my right foot kicks out. Any pressure on my abdomen is difficult to handle: seatbelts hurt, cat on tummy hurts, laying on my stomach feels like I am laying on a ball. I have passed out from severe pain and the ER sent me home with Vicodin and a diagnosis of a ruptured ovarian cyst – even though my pain was under my ribs and not in my pelvis. I have had 2 CT scans, a chest X-ray, pulmonary function testing, 2EKGs, 2 pelvic ultrasounds, a HIDA scan (test for kidney stones), a colonoscopy (hate the prep work for that one), an upper endoscopy, and as I mentioned before, a capsule endoscopy. CT scans, X-ray, ultrasounds, EKGs, HIDA scan, pulmonary testing, and upper endoscopy all normal. Colonoscopy showed a benign polyp and the photos showed little red pinpricks everywhere – but the GI said it’s probably from the preparation awfulness. The capsule endoscopy showed an “abnormal section in the lower small bowel” – which is why he is now treating me for Crohn’s (I have not yet started the medication, and I forget the name). I also had a weakly positive ANA, which was shrugged off by a rheumatologist, protein and blood (not visible) in my urine and treated for a UTI, and I’m anemic. My cortisol levels were above average, but again shrugged off as well as a “abnormal kidney function” result about a year ago, also shrugged off. I have no loss of apatite/weight and no vomiting, despite the nausea. Occasional diarrhea, but usually just loose stool – sometimes thin strands and often containing quite undigested food and what looks like coffee grounds.
Phew…sorry for the long “introduction to me” – but has anyone had a similar experience? I don’t feel like I fit into most categories and certainly have had little answers to direct my way. We shall see how I do with the Crohn's medication - will I start feeling better soon?
Phew…sorry for the long “introduction to me” – but has anyone had a similar experience? I don’t feel like I fit into most categories and certainly have had little answers to direct my way. We shall see how I do with the Crohn's medication - will I start feeling better soon?
