Hello

[hleeann]

Hi everyone,
I am new to the forum and I've been reading some of the posts. I have found some very good information and I am glad to read the posts from people who really know. I have received all but the final diagnosis--all tests pointing to Crohn's but waiting (and waiting) to get into see a gastroenterologist for the official version.

I have had symptoms over the past few years that led me on a medical maze through all kinds of doctor's offices--a neurologist, a rheumatologist, a physiatrist, and now the GI doc.

I have had symptoms for a long time--just not feeling well. I think the docs thought I was crazy because they couldn't find anything specific for so long. I was wondering if anyone else had had this kind of problem getting a diagnosis. I've been "dismissed" from so many doctors that I began to think I was crazy. I am wondering if anyone has had related problems that don't seem to logically connect to Chron's.

About 10 years ago, I began having severe problems with my back (I'm now 42 so I was pretty young to have so many degenerative problems). I've had a spinal fusion and several rounds of various therapies for my many disk problems (currently 8 bulging disks and lots of physical therapy).

Then about 3 years ago I had a weird illness while I was studying in England for the summer. I got these big red and purple knots and bumps all over my legs. The British doctor told me it was Erythema Nodosum.

Two years ago, I had pancreatitis--twice within about two weeks. Again, no real source for the problem, so they blamed it on a gallstone and took out my gallbladder.

I've had moderate and progressively severe RLS which is enough to drive anyone crazy.

Since then, I have had many episodes of severe abdominal pain and the diahrrea is horrible. I always had trouble with constipation until about two years ago when the diarhhea wouldn't stop. To Doc told me I had IBS and dismissed the concerns. Since then, I've taken Zantac and Protonix everyday for my stomach pain and I've worried that taking that medicine masked some of the symptoms. Likewise, some of the pain medicine I take for my back (and RLS) has probably also masked some of the symptoms.

I had severe joint pain that the docs had said was just arthritis probably. For a while, the docs thought I had Lupus (they're still not sure) and we chased that possiblity. I had given up because no one could figure out the cause of the stomach distress--I even cried when the first colonoscopy came back normal. The doc said, "Usually people are happy when I tell them nothing's wrong." But I knew something was wrong and they couldn't find it. Then a couple of weeks ago, I had some kinds of tests that the rheumatologist ordered to check for lupus and other autoimmune problems (a full panel of just about everything I think) but some tests showed a sort of IBD. Given my symptoms, she has "unofficially" diagnosed Chrons but wants a GI to confirm.

Anyway, I am interested in finding out if anyone else had had weird kinds of seemingly unrelated problems like erythema nodosem or pancreatitis that your doctors somehow tied to Crohns. They all seem like unrelated issues, but when I look at the big picture, it seems like they all were pointing to a direction that something was very wrong and I'm just now putting the pieces together.

While I haven't actually seen the GI doc to confirm the diagnosis (and may not get to for several months), I know that Crohns is likely the answer given my other doc's opinion. It's the only thing that explains the severity and type of the GI symptoms and all the tests point to it now. I'm just curious why it didn't show up in some of the earlier tests because I've been having the problems for so long.

I'm having a hard time coping with the work issue. Generally, I don't miss work, but as this disease has gotten worse, there are days I simply can't go because I'm running back and forth from the bathroom. In the last year, I've missed no telling how many days. How do you all cope with work when you're having a flare-up? Do you find the boss is empathetic or has it caused real problems? I'm just tired now of having everyone ask "Are you feeling better?" when I get to work instead of "How are you today?" I feel like such a loser sometimes.

Anyway, thanks for reading. I'd love to hear if anyone has some similar issues with related health problems and work issue.

I look forward to learning more.
Lee Ann
:depressed:

 

[GoJohnnyGo]

Hey Lee Ann, welcome.

I don't know if this really helps or not, but being depressed given your circumstances is perfectly normal.

Having a confirmed diagnosis is probably not the greatest news to hear -- but on the other hand, it at least gives you an opportunity to plan a counter-attack. And THAT beats ambiguity every time.

Yeah, the workplace dynamics are a tricky bit of business. I absolutely HATE being the designated Office Sickly Person. You want to pull your weight. This coming from a person who went 10 years without a sick day (while occasionally having mild symptoms which I sloughed off).

Whatever happens in your journey, you can share it here. Every symptom (specifically related or not) crops up and is discussed.

You're more than welcome to hop aboard.

 

[soupdragon69]

Hi Lee Ann,

Welcome to the forum!

You are definately not on your own here with any of the things you describe. Many on here have gone through years of tests etc before a final diagnoses if Inflammatory Bowel Disease including several scopes! Crohns in particular is difficult to assess and pin down as it "waxes and wanes" or peaks and troughs and can be anywhere from mouth to anus.

The nodosum is linked to Crohns and so are gall stones and kidney stones too. Other skin problems like certain types of dermatitis and another one that causes boils/abcesses can be linked also (I found out when diagnosed after my crohns diagnoses).Pancreatitis can be linked too you will find. Your previous history is one to flag up when they are looking at meds for you too down the line.

Good to see you here. Keep posting. Looking forward to seeing you around! Hope you get a diagnosis confirmed (not that anyone wants crohns) and treatment started soon. You need the relief and peace of mind!

 

[hleeann]

Thanks for the kind words

Thanks for the kind words everyone. I feel like I have gotten more good information from your posts than I have gotten from all of the doctors put together. I think I'm most grateful just to communicate via the form and hear people say "It's not all in your head." After a while of doctors telling you there's nothing wrong, you start to wonder

Thanks for the encouragement. I look forward to learning more about this illness and how to cope with it.

 

[jed]

hey Lee Ann,

haven't had a chance to read your first post yet, but welcome to the forums!

(i like to read first posts properly, not in the mad rush at work)

 

[jed]

holy crap, read your story now, you've really had some fun haven't you? wow!

i think you'll find a lot of people here have been through the crazy diagnosis track you've been down. its never easy, but finally having a name to a disease you can combat is a great thing.

hope your diagnosis come back clean for crohns (which of course will still leave you wondering what it is), but if it is crohns then you can at least start been treated and get some normalcy back into your life.

welcome,
Jed.