I'm new here...Still undiagnosed, here is my story.

[a1000lies]

I'm new here...Still undiagnosed (UPDATE DIAGNOSES CONFIRMED)

Hi, I'm Patrick.. I'm 28 years old and still dealing with what I believe to be Crohn's disease and have been undiagnosed after sudden illness after I turned 19.

It all started at 19 (2003) when I was at the gym and i felt like I had a stomach virus. I went home and waited a few days and the symptoms never subsided like they normally would have. I couldn't eat, I had terrible cramping pain in my abdomen, no energy, i felt weak, and run down. I couldn't even pass gas without being on the toilet because clear mucus would always be coming out. I went to the local GI and was put through a battery of tests (endoscopy, colonoscopy, barium xray, blood tests) and everything had come up negative and the doctor just passed it off as having IBS. Since then I always get these "flare ups" that last for days to even weeks where the burning pain is so bad in my abdomen I curl up into a ball in bed for days. Even on my good days I still feel a mild "stinging pain" if i put any pressure around my belly button.

Recently, over the past two years started getting a lot of staph infections out of nowhere (usually single boils) and I've been getting canker sores now, especially toward the back of the throat and soft pallet. This past September I had got a terrible "flare up" where I had canker sores, a 103 fever, extreme abdominal swelling and pain, horrible d, burning sensation in my anus when passing stool and rushed myself to the ER. They did a CTscan and said my ileum and colon were highly inflamed and that it could just be a bad infection.

The next day I went to the GI doctor and he scheduled another colonoscopy for three weeks later and ended up CLEAN again. He said "you just had a bad infection, I don't see evidence of crohns" and pretty much told me to stop worrying and to go home. Since then I've had two more "infections" with canker sores, low grade fever, and extreme abdominal pain that last 1-3 days and it's almost unbearable.

I don't understand what is happening to me and I'm just so frusrtated and afraid at this point. I haven't been the same in 10 years. I feel like this CANT be IBS... IBS doesn't do this, certainly not this level of inflammation if any at all. I need help, I need to try something else or see another doctor but none of them around here take Medicaid.

I'm going back tomorrow to request a pill-cam. I'm just hoping and praying he just doesn't continue writing me off like this. I can take pain, but this stuff is crazy .

 

[Suvii]

:welcome:

Wow, you're having tough times! :confused2: I can only imagine what it feels like to be sick but not have a solid diagnosis that explains why you're so sick.

Hopefully you can find a good doctor who's able to find a diagnosis for you.

Are you eating any kind of medication at this point?

:hug:

 

[a1000lies]

Hey thanks a lot for the reply! I am on nothing now, I was given cipro and flagyl in late sept after that initial infection but nothing since. This is driving me nuts!
- I read your story, my heart goes out to you.. Rough stuff, you're strong. I really hope you can stay healthy!

 

[tclark]

Damn brother, your having a hell of at time. Sorry to hear. Your Crohn's, from what I gather, is, no offense, too severe for Cipro and Flagyl. Not to call your doctor's out here but they're batshit crazy if thats what they are putting you on. My first GI put me on every med he could think of at first and nothing worked (6MP, Cip, Flagyl) and refused to acknowledge anything when I told him I felt no improvement. Have you talked to your docs about surgery?

 

[Suvii]

Sounds awful! What if you march into emergency and just refuse to leave before you get some answers?

 

[Crohn's 35]

:welcome: 1000lies to the forum. I agree you are sounding much like crohns symptoms I get cankers all the time. My initial early pre- diagnosis was pain in the belly button area. I had diahreah and mysterious flu's constantly. The Ileum is the most common area for crohns. Just to warn you Pill cams are extremely costly and some insurances refuse it because of the cost and not a good source because they take 30,000 to 70,000 pictures, so rather than looking at all of them the machine automatically skips them. Also if you are narrowed you run the risk of it getting stuck and they surgically have to remove it. Best option in my opinion is a colonoscopy, you get the results right away and they take biopsies, a pill cam doenst do that. Let us know how you keep on. :hang:

 

[xJillx]

Hi Patrick and welcome! We are in the same boat, my friend. I am being told I have IBS and my first colonoscopy that showed inflammation & ulcerations in my TI and rectum was just an infection. But, like you, I know what I deal with each day is not IBS. And I must say, your symptoms (mouth ulcers, fevers, etc.) sure do sound like Crohn's. So, all I can say is don't give up. Remember, you are your best advocate.

I am glad you are having a pill cam done; hopefully, this will provide some answers. If not, keep trying to find another GI who will listen. I wish you luck, and I hope you can figure out what is going on with your health soon.

 

[a1000lies]

Hey thank all of you so much for listening and replying, it really does help

So today I went in to seem my GI and he declined doing the pill-cam because my insurance probably won't cover it (as pen said) unfortunately and prescribed me antibiotics. He did tell me that he knows now that I am not crazy and that he believes something more is wrong now...which is good news I guess? He told me that the next time I get any sores and feel an attack coming on to call him immediately so he can do a barium x-ray to see whats going on. He said that I must not be active each time he's looked at me so the plan at this point is to just wait to get really sick again

So it looks like a waiting game for it to flare up real bad again and call him or march into the ER to have that test done again so they can see the disease in action. He mentioned this could still be something infectious but I doubt it...Isn't the fact that if I get this barium xray and it shows inflamation of any kind that just points to crohns? Not another illness? I feel like if hes looking for infection he should be doing blood tests or stool tests, not just looking for inflammation. I've read a lot of stories of yours and others on here and I've seen a lot of people mention blood tests for crohn's and hes never mentioned any of this to me.

-Jill, thats crazy.. I thought that ulcerations and inflammation is what crohns DOES. I wonder why they retracted the crohns for you. You must be sick and tired of being screwed with by now.

-and is it normal for a crohns to get attacks that only last 1-2 days?

 

[a1000lies]

*UPDATE*
After researching on the internet and reading stories on forums I came across sacroiliitis. I was diagnosed by my orthopedic with sacroiliitis about 2 years ago but wasn't really explained about what it was or what the cause was and never followed through. I always figured it would work itself out.. I can never sleep at night, I'm always so uncomfortable no matter how I lay down. So this together with the fact I had also been seen this year for the swelling of my eyes two different times I knew I must have Crohns or Celiacs since I have all these IBD symptoms.
I went back to the Doctor today (who thinks im crazy) and told him about those two things that I had never mentioned and he stopped writing on his pad and said "oh... you know these are manifestations of Crohns right?" so I said "WELL WHY THE HELL DO YOU THINK I JUST SHOWED UP AND ASKED TO SPEAK WITH YOU ABOUT THIS?!" lol.. so fortunately and unfortunately he told me he no longer thinks I'm crazy and prescribed me Lialda and said "ok looks like we are going to start treating you for Crohns.".

Hearing those words were so bittersweet because I've hoped for an answer to my misery for almost 10 years now. I can finally say I know what is wrong with me and I can work towards controlling it. I'm just so friggin scared, mad, and upset at the same time. I was hoping it wouldn't come down to having this awful disease. I'm also worried about the sacroiliitis. Does having sacroiliitis mean I definitely have ankylosing spondylitis?? I'm really worried about the treatments, the risks, and the progress of having Crohn's and possibly having ankylosing spondylitis. Any thoughts or advice would be awesome guys.

 

[Suvii]

Well that must a relief to finally get a diagnosis! Of course nobody wants to be sick, but if you've had symptoms for so long now that diagnosis probably let's you to calm down in some way.

It's unfortenate that in many cases it can take years before diagnosis, not every case is so obvious.

Hopefully you can now start a new life knowing what you have. You know it's not the end of the world and your symptoms are taking care of now on. I'm wishing you the best luck and hoping your quality of life will get a lot better! :thumright:

:hang:

 

[David]

Greetings and welcome I'm so sorry you've been going through so much

I just read the entire thread and I sit here with my face all scrunched up.

*takes a deep breath*

I think you should get a second opinion from another GI. I'm not saying you don't have Crohn's Disease, but if you have good insurance, based upon everything you said in this thread, I think having another GI look over everything could be useful and you might end up liking the new doctor more.

 

[crushingcrohns]

Hey thank all of you so much for listening and replying, it really does help

So today I went in to seem my GI and he declined doing the pill-cam because my insurance probably won't cover it (as pen said) unfortunately and prescribed me antibiotics. He did tell me that he knows now that I am not crazy and that he believes something more is wrong now...which is good news I guess? He told me that the next time I get any sores and feel an attack coming on to call him immediately so he can do a barium x-ray to see whats going on. He said that I must not be active each time he's looked at me so the plan at this point is to just wait to get really sick again

So it looks like a waiting game for it to flare up real bad again and call him or march into the ER to have that test done again so they can see the disease in action. He mentioned this could still be something infectious but I doubt it...Isn't the fact that if I get this barium xray and it shows inflamation of any kind that just points to crohns? Not another illness? I feel like if hes looking for infection he should be doing blood tests or stool tests, not just looking for inflammation. I've read a lot of stories of yours and others on here and I've seen a lot of people mention blood tests for crohn's and hes never mentioned any of this to me.

-Jill, thats crazy.. I thought that ulcerations and inflammation is what crohns DOES. I wonder why they retracted the crohns for you. You must be sick and tired of being screwed with by now.

-and is it normal for a crohns to get attacks that only last 1-2 days?

THanks for sharing your story. You are right, the dr can do blood tests as well as stool testing to determine different things that could indicate IBD also to see how much healthy bacteria resides in your gut too. All those simple lab tests can certainly say something about what is going on.
Is your pain/problem in the lower abdomen area or higher? I believe that the barium x-ray allows the doctor to see mostly the upper gi. A colonoscopy is what you really need to rule out Crohns or UC. & to answer your question about the X-ray showing inflammation.... no, that is not an absolute answer that point to Crohn's. It depends on the location, the symptoms you experience.. There are many digestive diseases and conditions. I actually define a whole bunch of them on my blog - link is below if interested.

If someone is sick with an attack for 2 days..... NO, it's not Crohn's. More like a stomach bug.

Hope that you are feeling better and have more answers by now

 

[crushingcrohns]

Damn brother, your having a hell of at time. Sorry to hear. Your Crohn's, from what I gather, is, no offense, too severe for Cipro and Flagyl. Not to call your doctor's out here but they're batshit crazy if thats what they are putting you on. My first GI put me on every med he could think of at first and nothing worked (6MP, Cip, Flagyl) and refused to acknowledge anything when I told him I felt no improvement. Have you talked to your docs about surgery?

Usually the 1st thing the doctors load you up on is Prednisone (toxic stuff)... It will relieve the inflammation very quickly and then maybe the cipro and flagyl can work while slowly tapering off Prednisone.
Batshit crazy LOL love it. there are VERY few doctors I like and because of many different factors, I have very little trust in what they say. If a doctor tells you something... research it for yourself. Never take someone's word for it without finding further knowledge. Just because they have a medical degree doesn't mean they know everything.

 

[crushingcrohns]

*UPDATE*
After researching on the internet and reading stories on forums I came across sacroiliitis. I was diagnosed by my orthopedic with sacroiliitis about 2 years ago but wasn't really explained about what it was or what the cause was and never followed through. I always figured it would work itself out.. I can never sleep at night, I'm always so uncomfortable no matter how I lay down. So this together with the fact I had also been seen this year for the swelling of my eyes two different times I knew I must have Crohns or Celiacs since I have all these IBD symptoms.
I went back to the Doctor today (who thinks im crazy) and told him about those two things that I had never mentioned and he stopped writing on his pad and said "oh... you know these are manifestations of Crohns right?" so I said "WELL WHY THE HELL DO YOU THINK I JUST SHOWED UP AND ASKED TO SPEAK WITH YOU ABOUT THIS?!" lol.. so fortunately and unfortunately he told me he no longer thinks I'm crazy and prescribed me Lialda and said "ok looks like we are going to start treating you for Crohns.".

Hearing those words were so bittersweet because I've hoped for an answer to my misery for almost 10 years now. I can finally say I know what is wrong with me and I can work towards controlling it. I'm just so friggin scared, mad, and upset at the same time. I was hoping it wouldn't come down to having this awful disease. I'm also worried about the sacroiliitis. Does having sacroiliitis mean I definitely have ankylosing spondylitis?? I'm really worried about the treatments, the risks, and the progress of having Crohn's and possibly having ankylosing spondylitis. Any thoughts or advice would be awesome guys.

Have you been seeing the same doctor right along for the GI problems? If so, he sounds like an asshole and I wouldn't trust that mans word if someone paid me to. Yes, you are experiencing symptoms that point to Crohn's, but does he have labs, scope results ... anything else to be able to make a diagnosis besides what you have verbally told him?
The doctor didn't take you seriously and blew you off as "crazy". Oh man, that alone would make me find a new doctor. That's not only rude, but it's unprofessional. You deserve quality care not just nonchalant guesses of what he is going to treat you for. It's ludicrous.
Do research on gi doctors in your area and ask around about who's good, who isn't and just listen to what people say about the treatment and if they are satsfied or not. when you hear something positive about a doctor from more than 1 person that's a good sign. Make an appointment and fire your current GI.

There is nothing like the feeling of knowing you are in good hands. Being confident that you've been told the correct diagnosis and are getting treated properly. It will give you peace of mind. You need that so you can finally rest.
:hang:

 

[a1000lies]

Thanks for the input! I haven't been on in a while being so busy lately.. I should be getting a barium small bowel series soon but I'm looking into trying to find another GI since this one really isn't working out so well with me. I hope to have an answer soon because this is so unbearable sometimes... The help and kind words really do help so much. Thank you!

 

[Catherine]

Early in Sarah illness she had severe stomach pain which last 24 hours around her belly button. As time when on attacks become close together eg every two months, then monthly, weekly, by the time of dx they were constant.


At the time of dx my daughter had mild chronic crohn's. She gi believes she had crohn for least 2 and 3/4 years before dx.

 

[Dazzafarr]

Hello,
I know how u feel. I got told IBS etc.
Now it's anxiety/depression.
I would suggest you get a bone density test.
Generally if you have a GI you may come accross osteopenia
This is due to your stomach stopping calcium + vitamin D from being absorbed.
If you come back with low bone density they have to investigate.
Ps- IBS doesn't cause osteopenia.

 

[Leebie3]

1000lies... WOW! Your story is SO similar to mine as far as the symptoms not matching the diagnosis.. I wish you the very best of luck and I hope *I* get a diagnosis soon too so I can start treatment.

 

[a1000lies]

So I've got a few updates so far..

On my own free will I decided to make an appointment with a Rheumatologist to hopefully get some answers and the first thing he had done amongst a battery of other things was get my vitamin D levels (funny Dazzafarr mentions that!). Apparently my levels were the lowest he had seen in his career and told me it was a 5 (good levels are from 20-30)! After getting these tests he did xrays of my back which came back good for ankylosing spondolosis which is great, and then he sent me back to the GI to get a small bowel series. I just got out of that today so I guess I have to wait a few days for the results.. I'll see if I can't post one of the pictures they grabbed during one of the fluoroscope parts of the test.

- Maybe this will work?

 

[David]

That's great! I'm glad you are making some progress And yes, 5 is crazy low for vitamin D. I personally think people should aim for 50+ though.

Cool picture! Please keep us updated.

 

[a1000lies]

Hey Leebie and Catherine, thanks so much for posting I read both your stories its just crazy how things always seem to go with diagnosing bowel disorders. They either think you are crazy and blow you off or jump right to IBS. I've heard way to many stories on here of people hanging around for 10 years being called crazy before they get dx'd its so unfair. I hope your daughter hangs in there Catherine that is absolutely terrible, and I hope you get a DX soon Leebie (hopefully it won't end up really being crohn's though).

 

[Catherine]

Hi a1000lies

Sarah going great. Her vit D is 50 and her GI is having her supplement with calcuim and vit D tablet.

Looks like you are starting to get some answers, yourself.

 

[a1000lies]

Got the news today. GI says crohns of the ilium. He wants to talk about treatment options on monday. Meh

 

[Dazzafarr]

Hey Pat

Burning in the anus could be anal fissures.
Try baby wipes for a while after you pass stools.
Ask the GI to have a pillcam done.
They can't see the ileum through scope.
When a doctor says everything's fine....
Tell the doctor - search further.
I don't know how many times I got told bs
From doctors /
Anxiety
Depression
Get some rest
More excercise
You stress to much
Osteopenia is normal
-Hang in there mate

 

[Dazzafarr]

Sorry, ignore my last post. Didn't see you updated lol.
Congrats!!! I'm trying to push for what u had done.
GI tried to convince me not to do it... Work that out....
Anyway, congrats and happy beginnings

 

[David]

Hi Patrick. Bummer on the diagnosis But at least you know what's going on now and can begin a proper treatment regimen and move towards feeling better.

Let us know how we can help.

 

[dannysmom]

Hi a1000lies! I am happy you have a diagnosis ... and it is Crohn's as you thought! Thanks for posting. My son (undiagnosed) also has a lot of pain in the bottom of his spine - which I forget to tell the doctors given he has so many symptoms - so your note about sacroilitis is helpful. We are from Long Island too! Good luck with your treatment and please let us know how it goes!