Got my test results

[allieinwonder]

We were finally able to track down my test results.

Well....I am shaking my head, because I really feel like I am going in circles.

This is the results:
"Diagnose: exclusion of chronic inflammatory disease

EVALUATION: Crohn's disease or UC can be ruled out.
Acid reflux doesn't cause inflammation in the esophagus.
Use of PPI or antacid on demand is sufficient."

After reading the results, I realize why they are saying this is whats wrong. My doctor here in Germany wrote this for the GI before he made the diagnosis:

"Chronic abdominal pain for years, questions of crohn's disease or UC remain unchecked. Pain relief when eating, getting worse last year. Sometimes Gastric Reflux. Weight loss of 7kg in 2 months."

The bolded is the OPPOSITE of my symptoms. My pain gets much worse after I eat. I have only had heartburn once in my life, and it was when I was a kid.
The weight loss was within a week, when this flare started. I lost 12 pounds in a week. (My wii fit even shows it....).

I am so mad I could spit nails.

My husband and I have talked about this at length, and I think I am going to make an appointment, explain that I was diagnosed with IBS at 17, and see if they can give me a prescription for it and see if it helps. If it does, great, maybe my IBS got to the severe point most people's do not get to. If not, I go to the military hospital 4 hours away and demand they figure this out.

The day they tell me I have acid reflux, is the day I can't keep anything down digestive wise. Before I even tried to eat today I had bad D several times, then ate lunch and had bad D very shortly after. *sigh*

Thanks for listening to my vent.

 

[littlemissh]

What tests are they referring to?

 

[allieinwonder]

I had a colonoscopy/upper endoscopy

Later in the test results it says nothing was found in my esophagus, stomach, or colon.

 

[Grumbletum]

Oh nooooooo! After having to wait so long for the results too. Definitely push for another appointment, especially in light of the confusion over your symptoms. Best of luck.

 

[littlemissh]

A very definitive statement about ruling out crohns...have you had any small bowel investigations? Fingers crossed it isn't though!

 

[allieinwonder]

No, I haven't had small bowel investigations. It fits though, because I don't usually have as much D as most I see with these symptoms...they said if the test results were like this I would go to the military hospital for a second opinion and more tests, such as exploratory surgery (my general doc said they wouldn't even try the pill cam ).

The reason why I don't think its IBS is because I have some symptoms that don't match up. The weight loss and constant in one spot pain being some of them. This past year it has gotten so much worse, and they had never done any tests to confirm the IBS before anyways. But them saying "take an antacid and you will be fine" just doesn't fit at all! They actually ruled out acid reflux problems twice now already, once when this started at 15, then at the beginning of this flare back in September.

 

[Cat-a-Tonic]

Hi Alisa,

First of all, you don't lose weight with IBS (not to mention that with the amount of pain you're in, IBS sounds really unlikely). Here's the Rome III diagnostic guidelines for IBS, you can see the exclusions at the bottom clearly say that weight loss is NOT a part of IBS.

http://www.helpforibs.com/footer/rome_guidelines.asp

I've had to show these guidelines to doctors in the past who have said that I probably have IBS. I've experienced weight loss as well and have occassional small amounts of blood in my stool, and when I'm flaring I do sometimes have to suddenly wake up and run to the bathroom to have diarrhea. So I do fit some of the exclusionary criteria, meaning it's not IBS. (I actually once had an urgent care doc tell me I've got IBS, and when I started to tell him about the Rome III criteria, he suddenly had attitude and was like, "I'm not a gastro doc, I don't know that stuff!" and then he just walked out of the room. What a jerk!)

I really feel for you, as you know I've also had normal test results from every single test I've had (and there have been a lot). I know how frustrating it is. It's okay to feel frustrated and angry, but the important thing now is to not give up. Call the hospital that did the tests and tell them about the things they got wrong. Make sure they get that corrected. And make sure the military hospital knows that too.

Something that might help is to ask for a trial of prednisone, if you're comfortable with doing that. Asking for pred was what really changed things for me. I was on 10 mg of pred for 5 days, not enough to cause side effects or require a taper. Just a short burst of a low dose of pred. I was warned by my docs that it likely wouldn't do anything because they said I likely don't have IBD - pred only works if there is something autoimmune ther for it to work on. Well, pred worked wonderfully for me! My symptoms disappeared, I had energy and appetite, and I felt like a million bucks. I literally felt like dancing & singing, I felt so good and I hadn't felt that way in so long! No pain, no diarrhea, I could eat and clean my house and I wasn't exhausted (I did experience some insomnia, but I didn't even mind it because I felt so good otherwise). And at the end of the 5 days, my symptoms returned with a vengeance. So because of that, my docs started looking more closely at whether this could be IBD. That led my GI to try me on Entocort, which also works well for me, and that's where I'm at now.

Anyway, whatever you end up doing, I really hope you get out of this diagnostic limbo soon. And feel free to vent to me anytime, PM me if you like, I know what you're going through and I really feel for you. I wish you luck, and let us know if you get anywhere with the military hospital. Keep us posted!

 

[allieinwonder]

Thank you so much for you insight cat. I know it can be a long hard road, but when something like this comes up where they say it isn't what I think it is...I just don't even want to continue, but I know that I need to.

Thats a great idea with trying to modify the results/diagnostics because of the wrong information. I didn't even think of that. I plan on explaining to my GP that it isn't correct, and has been ruled out before, and hopefully it will get me somewhere. I don't know if I will be able to get the entire thing changed though, since it was an outpatient referal to a German doctor, and the results took a month to get. I might be better off not wasting my time because of how slow things seem to run here. Either way it looks like the biopsies came back normal and they didn't see anything on site.

I understand with the "not a GI thing". My GP here told me a lot about what might be going on, but then when I asked a specific question she got confused since she doesn't know much about it.

I have had three of the symptoms that say it isn't IBS: blood in stool, pain that interferes with sleep, and unintentional weight loss.

I would love to try a short trial of a crohn's med, and I asked my doctor about this last week. She absolutely refused. She said if I don't have an IBD, it would create more issues, and she said she didn't want to risk it. It wasn't a very helpful visit, because she turned down that and the pill cam, saying the only other thing they will do is exploratory abdominal surgery. I'm thinking about going to a different GP next time I go, but I don't know how much it will help.

 

[littlemissh]

I don't understand why they haven't done a small bowel follow through or MRI small bowel or radiolabelled White cell scan. They are low radiation, low risk procedures. And much cheaper and easily available compared to a pillcam. I know how frustrated you must be. It took 15 months of tests (with 3-4 months where I seemed better) and 20 kg weight loss for me. Though having said that, they never dismissed me , they just kept on looking

 

[allieinwonder]

Yeah, I am pushing for something that sees my small bowel to be done. Everything you have listed has not been tested yet, but I had had many many many different tests. I'll definitely ask about those as well. I'm not too keen about the surgery idea....

I was dismissed by my doctor at 19. So thats why I have taken so long to try and get a dx. He said IBS, I went home and took the meds as prescribed, and my throat closed up on me. I researched online and figured out I was allergic. I went in and told him and he called me a liar, got very angry, shoved another prescription in my face and stormed off. So, I completely gave up and tried the probiotics and diet. Here the doctors seem the same way, in the fact I am always being rushed. I found a GREAT GI back in the states before I left, who believed me and wanted to run a ton of tests, but we moved to Germany with the Army too fast for it to happen.

 

[Mayflower537]

I don't know if I missed it or not, but why would exploratory abdominal surgery be done before a pill cam study? I didn't see where your small intestine has been scoped or anything...there's lots of places that Crohns can be.

There is a blood test here in the US called the Prometheus IBD Serology. I know that a lot of GIs are on the fence about it or even think it's voodoo science. But it showed positive for Crohn's for me (others on here as well) and that at least made my GI scope me through and through so I feel like if there is any disease it's just not findable at the present time. I don't know if that is available to you in Germany but maybe there is something similar?

I'm in the IBS camp for now, although I have bled - there were internal hemorrhoids to explain that. I assume that nothing of the sort showed up for you during your colonoscopy?

I am taking an antibiotic called Xifaxan (aka Rifamaxin). This is my 2nd round and it helped a bit when I took it a few months ago. So my GI is putting me on it again to see if it helps. Other than that I take Librax to help with any cramping. Works pretty well for me.

It is frustrating to not have concrete answers, and no matter the outcome I hope you get some soon.

 

[allieinwonder]

My GP on base just said no pill cam. Very blunt, and wouldn't give me an explanation. I am going back now that I have the test results and if I see the same person I am going to ask why.

I had extensive blood tests before I left the states, and all of them came back normal. I don't know if it was the Prometheus IBD test though, and I doubt it was. I had blood tests at my last appointment here to test thyroid function because of my constant fatigue. I think I am going to ask about that test as well then. Anything to get me answers at this point would be nice.

I do have an external hemorrhoid. I have had it for years, but in the past few months it has gotten worse. My GP examined it during my last appointment and she didn't seem very concerned about it. I have had the bright red blood from that as well as dark blood (black tarry stools) that indicates something else.

Thank you for your suggestions!

 

[Cat-a-Tonic]

Your GP sounds awful. I would definitely get a new GP, one that is more open to tests rather than surgery. Personally, I would do everything in my power to have every test possible before I'd let them slice me open! Don't let your doc bully you, find a new doc who will listen and who will do more tests and/or let you try pred. I don't suppose you have the option to come back to the US for a visit, and have your good GI run a battery of tests while you're here?

 

[allieinwonder]

I'm coming back at the end of the month actually, to get my pets (finally!!!). But the insurance I'm on with the military (tricare) is a kind of health care that I'm not allowed to see doctors that are not military without a referral. I saw my GI there a week before coming here, and the switch over when I got here made it look like I had gone to my GI on bad insurance...I was charged $225 for them to say it is probably an IBD ~.~. I would LOVE to try and do some things over there while I am visiting, but I don't have that kind of money...

 

[Cat-a-Tonic]

You could always rack up a big doctor bill here and then apply for financial assistance, ha ha. I did that because I had a $4000 deductible on my insurance last year and I maxed it out and then some. I ended up applying for financial aid through the hospital, and I got approved and I now have a zero balance.

Seriously though, that sucks that you can't see your GI here (although it's good that you get your pets - I feel like my dog & cat have been pretty therapeutic for me). At the least, if it were me I would start looking for a new GP and see what the military hospital can do. Maybe call or write the military hospital in advance of driving all that way so they can know what your situation is.

 

[allieinwonder]

Thats exactly what I plan on doing.

I wish I could do the whole financial assistance thing...or just get switched back to tricare standard (what I was on before, paid for everything, any doctor, civilian, except for 15%)..but for a week it wouldn't work. I plan on going back to the states alone in the fall to finish my last semester of college (woot!), and I am already concerned with the fact healthcare might be a little complicated.

Now more waiting for the next appointment..I'm always waiting for something with this lol.