I Just Want to Know What is Wrong - Undiagnosed

[Imageek]

Hello,

I'm a 29 year old guy from the USA and I've had a pretty rough year. I'm still in the process of trying to figure our what is going on with my body, but so far there haven't been many answers.

I first had significant GI issues back when I was about 22, right after college and right before getting married. At the time I would get nauseous whenever I ate, have frequent diarrhea and abdominal pain. I ended up losing 4 pants sizes and about 50 pounds, which meant I looked great for my wedding. At the time I went to our family doctor and they gave me Nexium and told me I must have reflux and that was it. I took that for awhile and quit because I saw no improvement.

I eventually figured out certain foods bother me and stopped eating them. This helped a lot. Specifically my body appears to hate onions, especially raw, and garlic. I cut those out and felt mostly better. Every so often I would have the symptoms return, but they would usually go away.

Then this past winter things started getting worse. I had abdominal pain constantly and it simply would not go away. I would often have diarrhea one day and be completely constipated the next. It was pretty awful.

I once again went to the doctor and they started testing. I had blood work for food allergies and it was all negative, no allergies. They did an ultra sound of my Gall bladder they found something weird on my gall bladder so I had to do an MRI. The MRI found that the growth was just fatty tissue and was fine. Next they did an Endoscopy and checked for Celiacs. I was negative for that too. They said I definitely had GERD and also had some gastritis. They started me on 40mg of Omeprazole.

After that test, they sent me for a thing called a HIDA scan, because they thought some of the pain might still be my Gall bladder. But all is well there and they said it is functioning at about 80% which is really good.

I also went to see a dermatologist and was diagnosed with some Psoriasis. I have it in smallish patches on my feet. The dermatologist said it was not related to any of my GI issues.

Next up I had a full colonoscopy, which also found nothing. They took two biopsies but they were normal. They said there was mild inflammation, but nothing to be worried about.

I was given some Bently to take, which I sometimes use, but really doesn't seem to help a lot. At that point I tried to go back to life as usual.

Then my wife and I went to Bolivia for 3 weeks on a Mission trip. While there I was incredibly cautious. I drank all bottles water and only ate cooked things and I didn't get sick. We left about 20 days after my colonoscopy. The gastro doctor said I was fine to travel.

However, about a week after we got home things started getting bad again, that was last week. I've had very violent diarrhea for about 7 days now. It's almost completely water at times and often contains mucus and or blood. I've had days with 7 or 8 bowel movements and they are often quite urgent. I also have abdominal pain that seems to linger and sometimes becomes worse.

The Gastroenterologist sent me to the ER a few days ago to get fluids and tests. They were convinced I must have a parasite from my trip. I has blood work, gave a stool sample and had a CT with no contrast. Nothing was found, everything was normal. The ER doctor was really surprised that everything was normal on the CT because of my abdominal pain. He thought I likely had Crohn's and that something would show on the CT.

I am next scheduled for a flexible flexible sigmoidoscopy to see if they can find the cause of the diarrhea or bleeding.

Overall I am just really frustrated. I thought for sure I had crohn's, but as of now they really have no idea what is going on. I was told I might have IBS, but they weren't really solid on the diagnosis. Until they can actually name the problem, they can't treat it.

Anyone had a similar experience? How did you finally get diagnosed?

 

[InkyStinky]

Hi there! So sorry to hear of your struggles!!!

Are you finding your way around the forum? There is an "Undiagnosed Club" here: http://www.crohnsforum.com/forumdisplay.php?f=75

I hope that you can get some answers soon!

 

[araceli]

Hello and welcome. Sorry you are having a rough time. Looks like your Doctor are on top of it and doing all the test necessary. Some in here have been diagnosed with colo/endoscopy, fecal calprotectin test, pill camera, ct scan etc etc. I hope you get better soon. Good luck with the sigmoidoscopy. Let us know how it goes.

 

[janelowe]

My story is similar to yours and there is a tendency to diagnose IBS as a "catch all". After a colonoscopy/gastroscopy the surgeon said that he wanted to see me as there was inflammation evident during the procedure. In the follow-up the surgeon changed his mind and said that the biopsies were clear and it must be IBS. The abdominal pain experienced during a flare is often unbelievably intense and feels as if there is a blockage. I wonder if this is common with IBS or more of a Crohn's symptom?

 

[Imageek]

Thanks for the replies.

My flexible sigmoidoscopy went fine. They found some hemorrhoids, but said they didn't need any work and shouldn't be bleeding. Other than that, they ruled out anything related to my time in Bolivia. They also took a bunch of biopsies.

The most encouraging thing is that I had a different doctor this time and he informed me that last time there was inflammation in my small intestines that they could see during the full colonoscopy. This doctor thought it was worth worrying about given my symptoms and has prescribed some blood tests for crohn's disease.

I am going to get the blood work either today or tomorrow. The crazy thing is that even though I have had all these tests, no one has ever done the Crohn's blood work on me. I asked why and they said it was because it is expensive.

I'm not sure if the inflammation they saw during the full colonoscopy and blood work will be enough to diagnose me. They say the blood work and biopsies will take about a week to come back.

janelowe,

You might want to talk to a second doctor. At least in my case that seems to have made a big difference. I'm still not diagnosed with anything other than IBS, but things are moving forward.

I wasn't even trying to get another doctor, mine was just unavailable when I needed to have the procedure done. That really may end up being a blessing for me.

Whatever I have, it definitely can get quite painful at times. So I understand how frustrating it can be to be in pain and not feel like they are taking it seriously. The other doctor thought it was "no big deal" but this one things differently.

 

[Imageek]

I went and had some blood taken for my test. I should hear back in about a week. The specific blood test I had was Prometheus ibd sgi Diagnostic Test

It really was fairly simple and only took a few minutes. Hopefully this helps me get some answers.

 

[Imageek]

Still waiting for a final word from the doctor, but my test apparently came back as "pattern not consistent with IBD."

So I'm not sure what that will mean for me. Anyone else ever have the test come back this way but still have crohn's??

 

[nativesith]

I went through that for years. Almost the same situation in fact. I am still undiagnosed. Went through test like scopes only to find a bit of inflammation. MRIs,CTs,Xrays all for nothing.
Then I met a young man who went through this. He said he has shingles. Abdominal pain with a rash....and it is not related?! That is what I was told. I think the rash is the key to this all. I just got Elavil yesterday and I can feel the pain decreasing and I had the best night sleep I had in years last night.
Shingles attacks the nerves. It inflames them , makes it push against organs like the stomach , gallbladder and pancreas.
That young man saved my life. He said after two weeks the pain should totally disappear.Try it...Elavil.

 

[2thFairy]

Still waiting for a final word from the doctor, but my test apparently came back as "pattern not consistent with IBD."

So I'm not sure what that will mean for me. Anyone else ever have the test come back this way but still have crohn's??

Yes. Unfortunately, the Promethius test you had is not all that reliable. Many false positives and false negatives.

 

[Imageek]

Glad to hear you are getting to the bottom of it.

In my case I don't have any rash. I have a little bit of psoriasis on my ankles, but no other skin issues.

At this point I have to wait for the doctor to review everything and make a diagnosis. I may end up switching GI doctors. I really don't feel my current one is taking me seriously. For example he saw inflamation at my terminal ileium but though it was "no big deal".

We will see soon.

 

[2thFairy]

To be fair, I had inflammation of the terminal ileum at the time of my colectomy (with no colitis nearby), yet still do not have Crohn's disease. It is possible.

 

[Imageek]

I understand that I may not have crohns or IBD. I guess the frustrating part was the doctors dismissive approach. It just felt like with all my symtpoms he did the colonoscopy, saw the inflamation and thought no further action was required. Basically they sent me home with no follow up plan.

The only reason i received any further testing was that I ended up in the ER. If not for that I think the doctor was mostly done with me despite symptoms.

But like I said at this point I just have to try and be patient and wait. I do think a second opinion is definitely a possible next step.

 

[2thFairy]

A second opinion is always a good thing, I agree! You've had many of the first line tests, so you might want to ask about having a capsule endoscopy next. That will check out your entire small intestinal tract. You might have trouble convincing your insurance company to pay for it, however.

 

[Ronald]

Definitely come join us in the undiagnosed club and have a rant here and there. Symptoms of IBD aren't always 'consistent with IBD'. Some people don't even have symptoms and are diagnosed unexpectedly!

 

[Imageek]

The Doctor's office finally called with results today. It wasn't all that helpful.

For the Prometheus blood test, they said it was marked "Inconsistent with IDB". When I asked about the specific individual tests they said they didn't know how to read them since they were just an assistant. So I asked to have a copy mailed to me, which apparently will take awhile and requires various release forms to be signed.

They also said that I must not have Crohn's since the blood test was negative. I am not sure if that was the assistant's words or the actual Doctor. That is somewhat troubling because I don't think the blood test is considered definitive.

As for my sigmoidoscopy, they said results are normal on the biopsies. However, they did say there was a lot of inflammation in the rectal area. No possible cause was able to be provided. Biopsies there show no signs of anything, they checked for microscopic colitis and did not find it.

They also said they want me to eat a normal diet again and see what happens. I had been on a no lactose low fiber diet and they want me to just eat "normally". I suppose that means eating cheese and beans and such again. It's a little worrisome that their recommendation is to just try eating stuff and see if I get diarrhea or how the pain increases and such.

Finally, they told me I need to come in for another office visit which I get to schedule soon.

 

[Imageek]

I scheduled my next GI visit for 9/16 which is a long way off but is the soonest I can be seen. I am still trying to get them to mail me the full blood test report, but so far haven't gotten anywhere with that.

I was doing better for awhile, but symptoms have started to come back a bit. I go through these phases where I start feeling better and then it comes back. I had a few good days in a row.

I am not experiencing diarrhea anywhere near as bad as before. However, I often will be constipated for awhile and then have a somewhat powerful bowel movement. Usually after this bowel movement I feel kind of unwell for awhile.

For example last night I had a pretty awful bowel movement where nothing was formed and it felt like everything in me was just coming out. When I woke up the next day I almost felt like I had a cold. I was somewhat achy and tired. I also had a below normal temperature of 96.0 F and was feeling pretty cold.I just felt unwell all day.

Then tonight I went over a friend's for dinner. Overall they did a good job preparing food that wouldn't bother me. However, I did eat an entire cob of corn. A few hours later the left sided pain set in and the general stomach pain. It wasn't really that awful of a pain, but it still isn't what I would call normal.

My theory at this point is that whatever is going on is caused by fiber. It seems like when I eat things high in fiber I feel the pain more. Tonight it almost felt like there was a very slight swelling where the pain came from. It was hard to see, but it could just barely be felt.

At this point I am trying to keep a diary of everything I eat and drink as well as bowel movements and symptoms. I am hoping that will help.

I am also looking for another GI doctor to visit in addition to this one. I would like to get someone else to review all my results to see what they think.

 

[Imageek]

So I finally got my hands on a copy of my Prometheus IBD sgi Diagnostic results and it is certainly confusing.

As I said before it is "inconsistent with IBD". However, in the genetics category I have all the markers. I have the ANTG16L1, ECM1, and NKX2-3 variants but I do not have the STAT3 variant. Apparently this is completely opposite of normal.

None of my serology or inflammation results were outside the normal range though. I'm not sure exactly what normal values are for these tests, but most of mine seem somewhere between normal and Crohn's.

I am trying to figure out how to interpret them since the doctor couldn't do it over the phone. I have a follow up on 9/16 with my current doctor and a second opinion appointment on 9/17. I plan to discuss the results more there.

Anyone know how to read this thing? I found the wiki page but I am still a bit confused.

 

[Imageek]

I had a pretty good follow up with my current GI today. I wrote up about 4 pages of symptoms, observations and questions and took that in and gave it to him during my appointment. He was really happy about it and took the time to read and discuss the entire thing with me.

We discussed all of my various test results and he referred to me as the "million dollar patient" due to the number of tests I have had so far(it really isn't that much). I think he was just trying to break the ice. I was pleased with the discussion.

As of now, he thinks it is likely some form of IBS and admitted he simply does not know the cause of it. He does not think it is structural and thinks there is absolutely no way it is Crohn's due to the negative prometheus test.

He prescribed me 10mg of Elavil to take daily before bed in hopes that it will make the pain go away. I plan on starting it on Friday since it makes people really tired at first.

The Elavil is supposed to help with IBS. Apparently in some cases of IBS, the issue is due to receptors in the gut not communicating well with the brain and causing pain. I am supposed to try it for 3 months to see if there is any improvement.

I also have a follow up tomorrow with a completely different GI doctor at a different practice. I want to see if he has any ideas and agrees with the diagnosis. I am currently sitting here waiting for 43 pages of medical records I scanned in to print out so that I can give them to him.

I'm curious if anyone else has had success with the Evavil. I am also curious to see what this new doctor things about my symptoms. I realize I've probably been a little overly critical of my current GI. It is just really frustrating to not know what is wrong. Today I felt like he really listened and discussed things with my wife and I. I was really happy about that.

 

[gotumtum]

Hey Imageek

I would ask if you can have an MRE or capsule endoscopy to check your small intestine. I am pretty sure it is possible to have negative blood tests, negative fecal calprotectin, negative colonoscopy, and biopsies and still have inflammation in the small intestine - Best of luck with the second opinion and do come and visit us in the undiagnosed club support thread - there are a few of us on there all sharing ideas and cheering each other up!

 

[UnXmas]

I know your frustration; I'm diagnosed now, but I have a couple of different illnesses, which took years to diagnose.

I take Elavil (called Amitriptyline here). I take it in high doses as an antidepressant, and it means I sleep very well. It's not helped with my digestive problems, but pain is not an issue for me. It could well help you control diarrhoea, as it is constipating (again, not an issue for me, as I have an ileostomy). This forum has a support group for this med here: http://www.crohnsforum.com/showthread.php?t=47926 . What dose are you taking?

It's not uncommon to have symptoms that are far more severe than test results suggest, and unfortunately, doctors often go by the tests only. However, I must say I'm surprised that they couldn't find anything when you had the episode of very severe, bloody diarrhoea. Blood is never part of "IBS". Have those symptoms resolved now? Do you think it's possible that episode was a separate problem from your long-standing but not quite so severe symptoms?

I'm glad it seems like you've now found an understanding doctor. A doctor who admits he doesn't know is often a very good thing!

I'm not sure how reliable the Crohn's blood tests are, however, with all the tests you've had, I think Crohn's is unlikely (just my opinion - not impossible, but unlikely). But that does not mean I think there's nothing seriously wrong or that you have "just" IBS; from your posts, I think you perhaps have something wrong that is not as well known as Crohn's, and harder to diagnose. Again, just my opinion, because scopes and biopsies will pick up most cases of IBD. What have your other blood tests shown? Any deficiencies or markers of inflammation or infection?

One piece of advice I would give is not to get too hung up on test results. Don't put too much effort into trying to interpret them yourself - that's the doctors' job. If a doctor has seen your results and isn't concerned, and doesn't come up with a diagnosis, you telling him that by your own interpretation they're not normal is very unlikely to change his mind. A good doctor should try to help you with your symptoms regardless of results, and/or arrange further testing if you feel it may yield a diagnosis. If a doctor isn't doing these things, see another doctor (though hopefully with your current one you won't need to), but don't stress yourself by trying to convince an unconcerned doctor that he's missing something - it's probably not worth the effort. You know something is obviously very wrong; you need doctors who accept that without you having prove it with test results.

Similarly, don't get too fixated on getting a diagnosis. As you know, this can be far from straightforward. Keep seeking answers, but don't let the illness/diagnosis dominate your thoughts or your life.

 

[abudman]

just wondering if anyone has developed a bloodclot. i got one and they think it came from my crohns. it is in the portal vein feeding the liver.