Difficult Diagnosis Anyone?

[JMitch]

:sign0144:

Happy Holidays All!

Has anyone else experienced an issue with being diagnosed?

In a nutshell, I have all the traditional symptoms of Crohn's with the most serious problem--I cannot hold my bowels because of the severe urgency, excrutiating pain and diarrhea. I've had my share of public accidents. I am 24. I also have mouth ulcers and have been diagnosed with Iritis, which the Opthamologist said is secondary to Crohn's with the symptoms I told him. I had pretty much had all tests possible (Blood Tests, IBD Serology, CT and MRI Enterography of Abdomen, Upper and Lower Scope w/ biopsies, Pill Cam). The CT and MRI Enterography showed mild thickening of the terminal illeum consistent with Crohn's. The Colonoscopy showed inflammation and an apthous ulcer (doctor said the prep caused it). The Upper EGD showed inflammation in the stomch, the Duodenum and I was diagnosed with Barrets Esophagus because of many ulcers. The Pill Cam showed bilious fluid in the stomach, but nothing else. The IBD Serology test was consistent with Crohn's. Doctors at UCLA and USC medical centers both say because the biopsies are normal, I do not have Crohns and stated I have IBS. I asked about all the findings on the tests and they said that it is not HARD proof. Just because I have inflammation everywhere does not mean I have Crohn's. One doctor went as far as referring me to a Psychologist for BioFeedback (counseling).

My son has begun to experience diarrhea for a couple months now and I explained that to them. They said because he is young, its probably some type of food allergy.

If any one has experienced this or something similar to this, please explain what they did to become diagnosed. I know this can be difficult and a long process (it has been 4 years), Im just to the point I don't care what I have just so that it can be found and treated.

Thanks in advance.

 

[imisspopcorn]

:welcome: ....There are few people here who do not have a diagnosis yet...Pewpewlasers is one of many who just started a thread very similar to this one....I have never had positive biopsies because my disease was inaccessible during colonoscopy...However, I did have a positive CT scan, Sm. bowel follow through , and family history for Crohn's...

The Biofeedback referral would be very insulting!!!! How may different GI doctors have you consulted?? Don't give up until you find an answer!!! In the mean time maybe give the biofeedback a try...It may help you to have proof that it is not all in your head.

Have you been given any medications to see if you respond to treatment? Maybe a trial steroid pack would help? Initially before I could get into the GI, my GP did give me a dose pack of Prednisone. Since I responded positively to the steroid, it is what helped confirm the diagnosis....

Good luck, and I hope you find some answers and relief from your pain.

 

[JMitch]

It was very frustrating! I asked the doctor his logic behind his referral and asked him if he thought I went out and had accidents for the heck of it. He didnt take it too lightly, but I think they take for granted they dont have problems. I dont think anyone without issues will ever know what Crohns and UC patients deal with.

Thanks.

 

[Tan]

Welcome JMitch, Im sorry your having such a rough time trying to get diagnosed... I personally didn't have this issue but I know many others on the forum have. Also my cousins misses has a similar story to you where she has done all the test to still not be diagnosed after 4 years. It would be extremely frustrating!!
I too didn't have a positive biopsies from my colonoscopy but they found ulcers in the part they could get too and then confirmed with a small bowel follow thru.

I can totally relate to doctors making out its all in your head, I keep getting are you sure your not depressed and bring all these symptoms on maybe we should put you on drugs to correct that. My god I think if they don't have answers then the first thing they turn to is your making it up! As soon as my GP said that I made them refer me to a GI and then I got answers very quickly.

As IMP said have you tried any Pred as this is such a magic drug and if you improve on it quickly then it might give them some answers.

Good luck I hope you get diagnosed soon.

 

[tamesis]

Hi JMitch, welcome!

I am currently experiencing the same thing, however only for 3 months so far, not 4 years. I can only imagine how frustrating things must be for you, i know i am struggling with dealing with things already, i can't imagine if this were going on for that long. I went to the emergency this morning with extreme pain, and got a lecture about narcotic use (i don't have any pain control at home, and am certainly not overusing narcotics, considering i don't have any!) And a couple prescriptions for IBS for things we have already tried.

It is a very frustrating situation to feel like nobody is taking you seriously, and to be completely helpless to make things better. i don't have any suggestions for you for how to get thigs going, as i have yet to figure it out myself, but hope that things get figured out soon.

 

[beth]

Hmmm, it's all very well the docs not treating you until they figure out, slowly what's wrong, but ISTM that giving you a pred taper would at least give them a data point, and might help your symptoms.
Maybe you could suggest it, or change docs because it doesn't sound the current one is doing anything to help you.

 

[Crohn's 35]

Hi JMitch, welcome to the forum. Yes, having a full diagnosis can take a long time. I was dx 1993 when technology wasnt as good as today. I had CT scans, barium follow throughs and was inflammed in the Ileum and even the surgeon (who did the exlporatory surgery and took out my appendix only that was microscopically leaking) and the Gi I was seeing were fighting amongst each other saying to the Gi I didnt have anything and it was all in my mind. A teaching doctor did the scope from one end to the other and a barium follow through (while I was awake ugh) but found it and turns out the person doing the test had Crohns too.

I was so much in pain and lost 40 lbs in two months and had emerency surgery with another surgeon who did it laproscopically. My Gp who was caught in the middle of all this quit after I was leaving the whole area.

So ego's do come in to play or they ignore the signs and therefore I would seek a second opinion. Crohns is hereditary so dont take no for a answer. Yes I saw a counsellor and did nothing. Keep us informed ok, we are here to answer your questions and give you our expericences.

 

[forum contributor]

:welcome: JM!

A lot of people on here aren't diagnosed or are still working hard to get there. It sometimes takes a long time and can be a tough and trying road.

I wish you the best!

 

[Peaches]

:sign0144:

I also have mouth ulcers and have been diagnosed with Iritis, which the Opthamologist said is secondary to Crohn's with the symptoms I told him. The CT and MRI Enterography showed mild thickening of the terminal illeum consistent with Crohn's. The Colonoscopy showed inflammation and an apthous ulcer (doctor said the prep caused it). The Upper EGD showed inflammation in the stomch, the Duodenum and I was diagnosed with Barrets Esophagus because of many ulcers. The IBD Serology test was consistent with Crohn's.

I asked about all the findings on the tests and they said that it is not HARD proof. Just because I have inflammation everywhere does not mean I have Crohn's. One doctor went as far as referring me to a Psychologist for BioFeedback (counseling).

:welcome: JMitch. I feel for you.....trying to get diagnosed with obvious symptoms can be very frustrating. I have singled out everything that to me was seemingly obvious (once all compiled) in a CD or UC diagnosis. At the bare minimum, it would be enough evidence to suggest a course of Prednisone or even adding Asacol or Pentasa (one of the beginning drugs) to see if you at least had a response to them. The fact that you have mouth ulcers as well as uveitis on top of the obvious intestinal issues sort of floors me as to why they wouldn't at least give you steroids to see what your response would be. For me....I would say thank you very much, gather all of my medical records and tests up and walk myself to another GI who specializes in IBD for a whatever number opinion. I would not settle for the answer you have been given. I might even ASK for a steroid taper at this point. I wish you lots of luck and hope that you find a really great doctor. I also hope beyond hope that your son does not have this disease. Please let us know if we can help in any other way.

 

[parkinglothero]

My heart goes out to your son.

 

[maximus]

Im new to this site, and newer to the land of the computer. But recently Ive come accross several people in the real world who are ngative on the IBD pannel like me, and still quite sick. I had a clean c. scope, at the begining of the crohns illness.. After havng two pain free weaks, I told them I was better, but they went ahead.

And saw nothing. Many complaints later, they said they were going to treat me for suspecting of crohns, mostly in the small intestine. And they started asacol. It helps some but not enough.

In 2007 I tested mildly positive for "S. cerevsia iga" a rhuemtologist tested me after having iritis, joint pain, fibromyalgia, and other immune stuff. I was tested for tons of stuff, this was the only clue. S. cerevisia, low whitecount, with a high monocite. and a high CRP high sens test. Over and over.

""This year my GI did some test, Ibd pannel had "high values but was negative", but my S cerevisia Iga was twice over positive, and my S. cevisia Igg was now positive as well.""

If they didnt see that and I didnt keep calling them, they would have left to me to suffer, badly. My GI wated to look for it, my nurse said mt tset were negative, WRONG, LIE. I got my records and saw the posotive, called the doc.

She acted lie it wasnt impotant??? She was the one who wanted to look for this anti body.

I recently had a bad week, bad. The med arent working as well. I told the GI office this was something that was getting worse and worse. I called and complained this week. And they dont care.

I discovered some exercise is not good for the guts. For me anyways. That and bad food put me in hell for over a week. Importantly, Pollution is a major factor in this disease, and they dont normaly test or treat for that.

 

[maximus]

P.S. People can pass it too their kids, genetics are a factor, living near pollution is a serious prob as well. Either could be the major culprit, Id seriously look into the latter.

Get away from any pollution.

 

[pewpewlasers]

Oh, yeah I can relate. My GI thinks that I am stressed and just need time to myself. LOL. He has blamed everything on IBS even though whenever I am in the ER they say its most likely Crohn's. I keep telling my GI that I'm not stressed. He asked me if I felt ill while out with friends. What a tool...of course I do. It doesn't matter where I am or what I am doing.
My tests have been questionable. He said there is no significant inflammation in my scopes and when I had the small bowel follow through he said it was normal. However, the same day I had the small bowel follow through, I ended up getting admitted to the hospital because I was in so much pain. They found dialation when they xrayed me. I just think he isn't even looking.

 

[uab grad student]

Welcome JMitch! I read your post and sympathize completely.. I had Crohn's for years, even had an anal fistula surgerically removed 4 yrs ago (more prominent in people with Crohn's) and thought I had IBS.

I think many people are initially diagnosed with IBS only b/c the doctor doesn't have concrete evidence to diagnose them with IBD. I worry that this doctor, however, is dismissing some important symptoms that could point towards Crohn's (the inflammation, ulcer, eye problems).

I think Peaches has the best idea, and that would be to find another doctor and get a 2nd opinion. I now have a good GI doctor and you would be amazed the difference it makes. I am now on Humira and Entocort and already doing better (was just diagnosed this month and just started Entocort last week, Humira this week). I was having 10-15 bowel movements a day and now I'm going 2-3 times. A great improvement!

Best of luck on finding a great doc that will listen to you intently, but make sure you do your part and make it hard for them to ignore you! You have to be your best advocate and tell them everything even if they don't ask.

 

[JMitch]

I never heard the pollution thing, but before I was discharged from the military, Crohn's was popping up like crazy with the people with whom I was stationed with in California. I know there is no definite known cause, but I thought it was rather interesting. There were a rash of discharges this past year for that (the most from any military base, because they had to investigate why to attempt to prevent it). I am the only one in my family with this, along with my son (or as far back as both grandmothers can remember).

Thanks for all the quick posts. I look forward to my new community!

 

[imisspopcorn]

Where at in California...Clusters of Crohn's disease are interesting to me.

 

[JMitch]

Edwards (the Mojave)...about an hour or so north of LA.

Literally, it was to the point of co-workers asking why I was being discharged, and their reaction was 'oh, you have it too?' I was discharged for Crohn's even though I'm still waiting.

 

[imisspopcorn]

Here in Nevada there was a big leukemia cluster near Fallon (AFB). They still haven't really said what caused it. At one point it was speculated that Tungsten in the ground water might have caused it....

 

[maximus]

To the people and Pewpewlasers

I started having problems a few years ago, cronic back pain, joint pains, and bad circulation. A few doc's thought I had ankylosing spondylititis, and then I developed iritis, and then bad fibromyalgia.

Then I started having Ibd symptoms on a daily level about a year ago. It toook me months of toruring these doc's to get them to slightly listen. Call after call, they do not care. They just want to get paid to do as little as possible.

2 Rhumetologist, 2 GI's and there cold heartless nurses, family doctors. All of them are worse than useless. ESPECIALY if there is no simple answer.
They never realy cared or tried much to find what was messing me up.

"""Ive been realy sick, and been told " you must have allot of stress, try fishing.
I about lost it, snaped. I had put up with to much, now I tell them how it is."""

Like letely when they pull the stress routine, I talk to then like they are dum kids, and say.

""Im stressed because I am very sick, and no one is doing anything, you are not listening. Im too sick to ignore it, Obviously."" So they hate me, but im not just going to crawl off to be sick and die under a rock.

Suffer with me, lol. Negative colinosope, "barely" negative ibd pannel.
But I was posotive for S. cerevisia iga in 2007. I was recently retested and Im over posotive on s. cerevisia iga and igg.

Guess what, the nurse said I was negative. I went and got my own records and I was posotive for these crohns related anti bodies. The nurses lied, more than once. A few occasions.

This had also happend to other friends and family. Do not trust these "profesionals". Ive been lied to quite a bit. And they hate when you try to use your own mind. Or know anything. Or dare to take charge of your own health/life.

And Im not bashing without reason. My mom is an RN with allot of training.

So I made and appointment with the doc, and confronted her. Finaly they put me on asacol. And my diagnosis is suspesting of crohns. The asocal made my life better at the time, 6 months ago.

But Im still pretty sick, and slowly getting worse w/ time. The G.I.s refuse to try ANYTHING ELSE. I was told unless Im massivly bleeding for a week, they can do little else. I wouldnt even have the asocal unless I became my own advocate.

Be your own medical representitives. Dont trust what your told. Look at your own test and such, look things up,and learn all you can about you situation.

 

[maximus]

JMitch, I too am the only one in my family sick, other than my kids showing sings. Its chem exposier and gene damage. Men in the millitary get sick left and right.

Fibromyalgia in men is suposed to be rare, but its far more common in former janitors, pest control workers, and U.S. soldiers. Its chemicals.

Crohns is the same, in countries without industrial pollution its almost non existant. Pollution is the biggest factor, other US bases have been said to have problems.

Ive heard of one US base where many men are getting this super rare male breast cancer????? Weird. And the cluster thing is a major breakthrough as well.

My home town is poping up with other young guys who have crohns. Some with negative IBD pannels as well, one I know is realy sick. Its only been a few months and he is realy bad.

The cluster thing is big, But dont expect any results. The government and big buissiness dont want us all to know about all the pollution out there and its effect on us all. Its all $$$$$$$$$$$$ to them.