crohn's or not crohn's????? immensely frustrated!!!!

Hi,

out of complete desperation, i'm turning to web forums for answers. This has been going on for far too long and i don't know what to do.
I've always had abdominal pain and bowel problems for as long as i can remember and severe lactose intolerance but it wasn't until i turned 19 that my health declined significantly. the levels of bilirubin in my blood and urine were ridiculously high and my skin turned yellow and so did the whites of my eyes, i could not eat at all, i experienced severed nausea and vomiting, intense abdominal pain, lost 10kgs, had the worst migraine in the world and constant diarrhea with a bit of blood and loads of mucus. The gastroenterologist did a colonoscopy/gastroscopy with biopsies and told me everything looked normal and that i may just have Gilbert's Syndrome. I changed my diet, did intense liver detoxing and just like that after months of suffering the symptoms just disappeared and i felt great for months. the symptoms tend to disappear and come back every couple of months. But just two months ago, my symptoms got significantly worst, again could not eat without pain or vomiting, the pain is pretty much there all the time, just more intense after food. severe diarrhea, sometimes alternating with constipation and now pain in my knee and elbow, even thigh or calf sometimes. Saw another gastroenterologist who did another colonoscopy and gastroscopy with biopsies and detected microscopic focal active colitis. my blood tests were all normal, he put me on antibiotics which did not help, then recently on prednisolone. although this made me feel horrible at first, it massively reduced the vomiting allowing me to eat and get my strength back. the pain though still there and still bad, has decreased compared to a few weeks ago. he ordered a calprotectin test as he suspected crohn's and the test came negative. he's not too sure if pathology may have screwed up my test, so he wants me off the pred to see how sick i get and if i'm back to my initial state, then do it again. i'm also booked in for a small bowel series test and a pill cam.
I had hoped that by now, he would have figured out what's wrong with me, i'm tired of feeling this horrible and doing all this costly tests and procedures. It's been 3 years of absolute struggle.

is there anyone who has gone through a similar ordeal? has anyone ever had crohn's even though the calprotectin test came back negative?? i'm really disheartened!

oh!!! the gastroenterologist gave me the impression that since the calprotectin results were negative, it completely rules out crohn's, well IBD in general, though like i said, he's not sure if pathology may have messed up my test.
Thank you for your encouragement and advice . it's so hard to be left in the dark and everytime i come close to a diagnosis i hit a brick wall, treatment is delayed and life stalls.
he ordered a CT scan a month ago and blood tests and all came back normal, so i assume everything must be ok with my liver and pancreas, at least nothing of concern to him.
Gilbert syndrome to put it plainly is a weak functioning liver unable to do its day to day work without extra help. i'm sure i don't have this condition because i stayed on the same treatment and diet for months and still fell ill again and there is no mention of relapses like i've been experiencing for 3 years.

viennaman said...
Hope you feel better soon!

Thank you!

Sorry that your small bowel series took so long. Sounds awful. I personally hated that test more than any other I've done (except maybe HIDA - that wasn't much fun either). I don't remember how long it took for the barium to pass through me, but I do remember that I had heavy white stool for quite a few days after the test.

I've never suffered from vomiting from Crohn's but nausea - sure. Usually for me that's related to being so constipated that there's too much pressure on my upper GI to eat.

Thanks for the answers and the support guys!! Im getting more out of this forum than from the gastroenterologist. I really hope that my small bowel series results bring out some answers as to what's wrong with me or maybe the pillcam endoscopy. I'm fully off pred now and back to severe nausea and a bit of vomiting. Not cool :(

Hopefully the pill cam will find something... It's possible. I have heard of people being diagnosed with Crohn's after a pill cam, where all other tests failed to find anything.

I think it's wrong of your gastroenterologist to be impatient. Just because he can't find out what's going on doesn't mean that there isn't something going on. If he makes you feel that bad, I'd definitely seek out a new gastro. Even if, ultimately, there is nothing which can be done, it's still a lot better to have a nice doctor who is sympathetic than a horrible one who isn't.

hi

so got the results of my pillcam today. sadly they didn't get to see much of my small bowel due to the little camera staying in my stomach for 5 hours. my doctor tells me i may have gastroparesis and gave me a referral for a gastric emptying study.
gastroparesis does explain the nausea, vomitting, abdominal pain, bloating, weight loss and malnutrition but it doesn't explain the frequent bowel movements, the joint pain, etc....and just the fact that symptoms come up and stay for a few months and then disappear.
should i still pursue the possibility of crohn's? my gastroenterologist seemed pretty excited at finding this and seems intent on pursuing gastroparesis and treating me for it and ignoring the bowel movements. has anyone ever had both conditions?

Thanks

I also have the joint pain, mine was low vit d and calcium, I have freg diaherra. Weight loss and gain.My eyes are bloodshot. Im tired all the time and moody. I eat and I have to have a bathroom, and the abdominal pain is unbearable, I have had these symptoms for 19 years and the only relaef I was getting was immodium, but I was up to nine or more a day and that was not working I am to young to be incontinent, Maybe once he treats gastroparesis the other will go away.

dusty1999 said...
I also have the joint pain, mine was low vit d and calcium, I have freg diaherra. Weight loss and gain.My eyes are bloodshot. Im tired all the time and moody. I eat and I have to have a bathroom, and the abdominal pain is unbearable, I have had these symptoms for 19 years and the only relaef I was getting was immodium, but I was up to nine or more a day and that was not working I am to young to be incontinent, Maybe once he treats gastroparesis the other will go away.

I'm sorry you went through this much! I know how you feel. Immodium is my best friend as well :)
But most of my symptoms are not related to the gastroparesis, such as skin rashes, joint pain, itchy eyes, bloody stool, severe diarrhea for months that then switches to severe constipation, increased liver enzymes and such, but most of all the atrocious abdominal pain after food or during bowel movements. Have you ever noticed the difference when taking steroids and not taking it? Mine helped with the nausea and vomiting but didn't reduce the pain as much. However since the nausea and vomiting stopped and I could eat again and regain strength, my general sense of well being improved which baffled my doc. What were the benefits of taking steroids for you? I'm just trying to figure out whether to entirely give up the possibility of IBD.