I am SO frustrated.

[allieinwonder]

Well, my colonoscopy was this morning. They found nothing. The doc came in afterwards and said they took pictures of my stomach and said everything looked normal....I told him there has got to be a reason for all of my symptoms and he said they took samples and are going to run tests, but from what he saw nothing is wrong.

I just don't get it. I was really hoping that a colonoscopy would how exactly what was wrong. After years of not figuring out what is wrong, tests that show nothing...I feel like my body is making all of this up or something. Because every time I try another test and pursue this I get let down....

What is the next step? I have had a colonoscopy, CT scan, blood tests, ultrasound...the pain in my left upper quadrant is still there, I passed out about a week ago in public, I have had massive weight loss...something has got to be wrong right?

I am really hoping those biopsies show something....

Any advice? Anyone else go through this? I have heard this stuff is hard to diagnose, but OMG why does it have to be this hard???

 

[Nica]

Have they tested you for celiacs? Or maybe gastropareithsis?( I know I spelled that wrong) Its where the stomach does not empty right, or at all, at times.

 

[Rebecca85]

Endoscopy or pill cam in case you have a problem the other end to the colonoscopy?

 

[CDDad]

Maybe IBS - Irritable bowel syndrome.
All the symptoms without the same obvious markers as Crohn's or other IBD.

https://health.google.com/health/ref/Irritable+bowel+syndrome

 

[Cat-a-Tonic]

I would say it's not IBS, as you don't experience unintentional weight loss with IBS.

I really feel for you, I've been through the same things and I'm still not diagnosed. I've had colonoscopy, endoscopy, CT scan, MRI, pill cam, many many stool & blood tests - all came back normal. Fortunately, I've got a good GI who knows that my pain is real, that I've likely got something like Crohn's or maybe microscopic colitis, and he's now trying to get me into remission medically (currently on Entocort). I know that having normal test results can be so, so frustrating and you can feel like giving up - but please, don't give up. Keep fighting for answers, have more tests, ask more questions. You deserve to have some relief and some answers, but sometimes it takes awhile to get there. I know it's frustrating, believe me I know! Just do what you can and don't give up. Good luck, I hope you get some answers soon.

 

[Jessica]

I was going to suggest you talking to Cat, but looks like she's already explained her story.

I seem to be reading more and more stories similar to yours. Bottom line, don't give up. Don't ever give up. <3

 

[NatalieMT]

I feel for you because it is really frustrating when you know something is wrong with your body yet getting a proper diagnosis proves very elusive. I was diagnosed with Crohn's via colonoscopy, then I had a normal colonoscopy which threw up a lot of confusion and more recently I had a pillcam which did show changes in my small bowel. It seems sometimes finding Crohn's is like a needle in a haystack and you can get a lot of terrible pain and symptoms from limited inflammation. Throughout the whole saga my CPR has always been relatively normal. Which again is bizarre! Maybe push for the pillcam? As it visualises all the places a colonoscopy cannot.

I know it's hard but you just have to hang on it there, if the doctor you are currently seeing isn't helpful and/or sympathetic find someone new. First GI I had was completely useless, I have a new consultant now and he's been absolutely fantastic. I can't fault him at all, he's provided me with a lot of medication to relieve all my symptoms and I feel so much better compared with this time last year.

 

[ant]

Did you GI take biopsies from different parts of your colon to test for Microspcopic Colitis (MC). It is called "microscipic" because no obvious damage is visible, except when the tissue is examined under a microscope. Several biopsies need to be taken from different parts of the colon since the damage is patchy.

Best of luck with finding a diagnosis, Ant

 

[allieinwonder]

Thank you guys so much for the replies. I have to say, without this forum I would be so lost. Knowing that so many other people stuggle to figure this out

I was diagnosed with IBS when I was 17 (21 now), but things just don't add up right with that diagnosis. First, the guy didn't even touch me when he diagnosed me (which I have seen that story here in other places), and there are other symptoms I'm having that just doesn't add up to IBS. I have a constant pain in my upper left quadrant...I mean, it comes and goes, gets worse when I eats, and I have been on tramadol for the pain since the second flare of it (which started in September, first flare of this pain was June - July and they blamed it on a hernia and I had surgery in a place completely different than where my pain is). Other symptoms that make me feel like its not IBS is weight loss, hair loss, general weakness (I have passed out twice since September). I also get very painful mouth ulcers, which can last for weeks (I have been on liquid diets before because of the pain). Since my colonoscopy yesterday the pain has come back, so I know it wasn't just a sight blockage in my colon (which my GI here suggested after the colonoscopy).

I agree with you guys, I think the pill cam is what I am going to ask for next. From my research here crohns can affect other parts than your colon, correct? And I have a hunch its my small intestine.

What really sucks about all of this is I am here in Germany with the US Army, and things work really slow. It will probably be another month before the next test due to the referral process. I wish I was back in the states; my GI there believed something was wrong and was going to get me the tests within a week (he said I couldn't wait longer than a few weeks because he was afraid I was going to get worse), and he even called my parents once I got here telling me to not give up.

I'm hoping the biopsies show something he couldn't see!

 

[carrollco]

I have had irritable bowel since I was 32. I went out to eat, had a salad with bleu cheese, and when I got home all hell broke loose. They did all kinds of tests on me and told me it was anxiety with IB.

IB has followed me for over twenty years. I had a colonoscopy four years ago and everyone told me it was great-- no problem-- just IB.

This last time, I just couldn't take it anymore. With spit and fury I attacked my doc and she sent me to a GI. They did a colonoscopy and they found Crohn's.

The reason I say all this is, is it possible to have had Crohn's all these years and no one found evidence of it? Maybe Crohn's comes and goes with the ulcers and maybe some of us don't get bad ulcers and they heal quick so when you have a colonoscopy they don't show.

Eh, I don't know. The only thing I do know is that I passed all my tests for years then they discovered I had Crohn's.

 

[allieinwonder]

I think I am in the same boat as you carrollco. There are certain foods that mess me up like that too...coffee (I am allergic to caffeine to being with, this just adds onto it), certain veggies and fruits (chipotle...bad idea), etc. I can see why it would be IB, and thats why when my first GI diagnosed me with it 4 years ago I believed him and just went on. But the new symptoms that have put me in the ER three times makes me think it is crohns in the fact that IB is rarely that severe. This was my first colonoscopy, and I still have the pain in my abdomen...so I'm thinking the inflammation/ulcers is in a different place than where the colonoscopy looked. Maybe it is in my small intestine?

Part of me at the moment wants to give up and just assume its IBS. The other part says all of this fits into something more, and I don't want to live my life with an untreated disease if my gut (no pun intended) feelings are correct. I have thought it was crohns since it started, and I don't want to stop now if it is. If its IBS in the end, I will be grateful, but I don't want to leave the what-if if it is something more. I don't want to continue to live my life in pain and discomfort and not know why or it be written off as something else.

With your question carrollco...I think its possible. Just in the fact that I have seen stories like ours on here and elsewhere where the person has symptoms for years upon years and is diagnosed finally in the end. I just wish this was easier!!

 

[braveheart]

they took pictures of my stomach and said everything looked normal....

Have they tested just your stomach?
I think you should have the small intestine, ileum and colon tested too.

 

[allieinwonder]

I believe they tested my stomach and my large intestine with the colonoscopy, but I'm not quite sure. I agree, I need to get my small intestine tested as well...

 

[Rebecca85]

Did they pass a tube down your throat as well? Otherwise there's no way they can test your stomach with a colonoscopy! Since that goes up the other end to your stomach.

 

[allieinwonder]

They were suppose to do an upper endoscopy at the same time, but I don't think they did. There was a language barrier, and even though he spoke english he didn't want to talk to me about all of it because I was only referenced there for the test (the army docs will do treatment after the diagnosis...). So I am waiting to see what the results are when the GI sends them back to the army clinic. Fun stuff!

 

[Tacykakes]

Oh am I ever in your boat. I had a surgeon see my on my last 10 day stay in a hospital which DID NOT help my current pain sickness and attacks. She saw the inflammation in my ileum just past where a scope goes and said I need a new doctor who will actually treat the Crohns as it is...

I know it is tough in your situation but try a new doc when you can and insist on a pill cam. The results may take a while as I am waiting on mine but it can see that weird area that cant be seen with a scope.

I got your back!

 

[pais16]

Sounds like you need a small bowel series- its likely confined to the small intestine, which is rare. My SO has stricturing small bowel CD and we have been told his type accounts for only about 10-15% of all CD cases. His recent surgery showed the first 12 and last 4 1/2 feet of his small bowel were completely unaffected, the 6-7 feet in between were severely diseased. He went undiagnosed for at least 15 yrs. When his symptoms first began in his mid 20's, he was diagnosed and treated for stomach ulcers. We now know it was the CD. He lived underweight and in almost constant pain (and denial) till he was 40 and first hospitalized for a blockage. Once he had his first small bowel follow through we were told he could never have the pill cam as it would get stuck in one of the strictures and likely have to be surgically retrieved- so I would insist on the series before the cam. If no strictures- then the cam is the way to go. Good luck and I hope you have an answer soon!