Confusing Things going on - need advice!
Hey everyone,
So I wanted to write here after I found another very informative post a while back about colonoscopy coming back clean when searching for IBD. I want to tell everyone a little about whats going on and see what you that have been diagnosis thing/feel about my situation.
For the past 5 years I have gradually got worse (so since mid 20s) with diarrhea and horrible pains that come and go. A few years ago I ended up in the emergency room a couple times and the ER doctors said it was Gastritis. It happens every 6 months or so, and in between the ER visits is about 1-2 weeks of painful stool passings, and sometimes I cant even leave my house because I need to be around the toilet. First the doctors did the tests for IBD, my Calprotectin came back over 300 (when I wasn't even having a "flare" up feeling because they took so long to get me in), along with Vitamin Deficiencies and my symptoms of pains, etc. So they sent me in for a Colonoscopy, which revealed no IBD traits in lower Intestine, but they found 4 massive hemorrhoids, which they had to do surgery on. I was OK for about a few weeks, then past winter ended up in the emergency room again, and then again a few weeks ago. They did an Ultrasound a few days ago and found a massive stone in my gallbladder. I meet with the doctor this week. The thing is, the colonoscopy was negative for Chrons. But 3 of 4 other tests have shown some things towards this, such as high inflammation in my stool. Now I have stones and have to have surgery on my Gallbladder. The doctor keeps hinting at IBD, and the ultrasound doctor yesterday said "I thnk its a couple things going on" when I told him "Finally, I am relieved to know its just Gallbladder!", then he continued in a concerning tone "Have you had a colonoscopy?" and I told them yes, it was negative for IBD stuff, and he goes "Hmm. Well we need to look at something else but there is too much air in the Ultrasound to see what we need to see. So first we need to take care of the gallbladder problem now."
So what in the heck is going on! My sister has IBS, and I told my doctor "I want to get with a dietician, maybe its just IBS" but he said he doesn't thing it is and thinks its inflammatory due to the tests and symptoms.
Does any of this sound familiar to you that have been diagnosed? I am just frustrated because its been album 5 years since these episodes started and now they keep finding different stuff wrong, and now I have to have another surgery! Any help or advice would be greatly appreciated, because they keep 'hiding' this other diagnosis until further testing, and now, after another surgery.
Also, I just noticed some of my words were autocorrected to the wrong spellings/words. Super sorry about that!
I can so relate to this. It is certainly so frustrating when you can't get answers! Especially when you show signs of one thing, yet your tests come out negative.
Have your doctors mentioned doing a pill cam? It may be that you have something going on in your small intestine rather than your large intestine. A colonoscopy only shows the large intestine.
I would keep pushing for tests until you get answers. Here is an article that you may find helpful. It goes over diagnostic testing for IBD. https://inflammatoryboweldisease.net/diagnostic-tests-and-procedures/
I hope this helps some! Reach out if you need anything, we are here to support you.
Always dancing,
Elizabeth (team member)
Great, SladerT! Please keep us informed if you wish! Looks like you and your health team are on the right path.
Warmly - Meagan, InflammatoryBowelDisease.net Team Member
At this point now that we are back on the IBD route for diagnosis I think the pill cam is a great suggestion. I hope they do it here where I live!
That is so frustrating, yet unfortunately so common in the IBD community! I wish that you were able to get a proper diagnosis, but I would highly recommend going for a second opinion at another GI, as sometimes things get overlooked so a fresh set of eyes is valuable.
And, I second Elizabeth's suggested link, as there are more ways to test/diagnose that you may not have yet tried 😀
Stay well!
--Julie (Team Member)
Best of luck with your second opinion! Just keep pushing to get a proper diagnosis and make sure they go through your medical chart in great detail just in case something was missed.
Keep us posted!--Julie (Team Member)
Thanks Julie!
Hey everyone. So its been about half a year now and since then I had my gallbladder out due to an almost 3cm size stone (made entirely of livery/bile stuff). I felt much better after the surgery... but the bowel issues continued off and on and started getting bad again over the past couple months. I assumed maybe its from having no gallbladder now and just not processing fats, but even on low fat diet i was having same issues starting up again. Well, during a "good couple days" as I like to call it, I went to my (now new) doctor to see if I could get off these stomach pills I am on for my GERD since that seems better overall... she said no due to my history of stomach issues and then saw that my other doctor never followed up with my possible Crohns issues when my Inflammation was high in my stool test. So she wanted me to do another test. I was like "sure! It will be normal anyhow I bet since the gallbladder is out. And I am feeling good this week. Bring it on!" Well, long story short; it was high for CalProtectin again and this was even during a 'good couple days'. So now here we go again... now to a specialists to figure this all out. Just wanted to update here because I am back with doctors thinking its IBD of sorts and I am once again feeling lost and confused and with no diagnosis just constant problems and inflammation tests showing inflammation in stool.
Can anyone tell me what all they had to go through to get the diagnosis? My lower colonoscopy was clean last year and my upper was too. But the doctor said that these don't see much of the bowel actually so it could be somewhere else in there.
Also what is the pain like overall for you? Ever since my gallbladder has been out, a sharp and hard pain that comes and goes mainly in the mornings feels like a heart attack but lower and to the right. This coupled with pains in the middle, left side and bottom of my bowels which is pretty constant with sometimes going to the bathroom upwards of 10-15 times a day. Other issues I have are joint pains; mainly wrists, shoulders and knees. Headaches and eye aches that come about once a week usually. Overall fatigue, but this is a bit better since the gallbladder surgery. And my stool problems are obviously from a malabsorption because it has all the signs of this with every time I go to the restroom.
I just want this to all be finalized and figured out because the unknown is killing me. I want to figure out how to treat this!
Thanks to anyone for their input and knowledge/experiences!
