No diagnosis but need input, please!

[karim]

Hello all-

My name is Kari...I've been creeping around this forum for the past 4 days and have been wanting to post but felt as if I would be wasting your time since I've no diagnosis yet...I'll go ahead with my story anyway and see if I can bore yet another person with it ;-) (I do want to include everything in case it may be key in CD, so will warn you now I was born with the gift of gab and this may be long!)

Anyhow, I'll be 24 tomorrow and the last 5 years have been hell. Three weeks before my daughter was born in September of 2005, I could have sworn I was about to have her on the toilet. The pains in my stomach were unbearable...to the point of vomiting and nearly passing out. Ended up going to the ER and of course admitted to the Labor and Delivery ward. They checked me out and told me it was just Braxton Hicks contractions and sent me home. Of course, that didn't explain the D or other symptoms...but they're the doctors, right? Who am I to argue. Still, I knew something was wrong. We live with our bodies on a daily basis and I just knew. Fast foward to 3 months later, November 31, 2005; at this point I have a beautiful 2 month old baby girl, Chloe...but still have the same stomach issues. I've had every stool test available and have tried every OTC gas/diarrhea/bloating medicine there is available. The sleep deprivation of a newborn followed by the fatigue from whatever this is have me down and depressed. Another trip to the ER with horrid pains. Doctor said it's my gall bladder so they keep me there and take it out the next day. I was so hopeful and excited that this would fix the problem...but that would be too easy, wouldn't it? I went back to the surgeon a couple of weeks later to have my stitches removed and I tell him at that point that I'm still having the chronic D, nausea/vomiting, lightheadedness and fatigue. He then reccommended a colonoscopy and we went through with that. All the subsequent bloodwork and tests were normal. He did mention that I had quite a bit of mucous in the lining of my intestine...but didn't follow up on that or even explain what that was attributed to. My view is "why mention it, if it's not relevant?"...he referred me on to the GI specialist...not much worth telling here. I got the IBS diagnosis after waiting in the waiting room for 2 hours and seeing the doctor for only 5 minutes. He gives me a script for Simethicone...yea, the same thing I give my 3 month old for gas. I was appalled. So I wrote the whole thing off until February of this year I had the worst "flare" I've ever had. None of this had ever gone away, mind you. I just learned to deal with it. Went in to my GP after this "flare" and she started me on Welchol (a med used to treat high cholesterol with a side effect of hardening stools) and an anti-depressant, Lexapro. Something about trying to balance the serotonin in my gut...whatever...Same problems have continued on for this long and the last week I have been in so much pain and been so miserable that I'm praying for God to just take me out. I returned to the doctor last Tuesday (5/18/10) and she just switches my anti-depressant to Zoloft and reccommends I see a psychologist, that its probably all in my head due to being stressed out. I practically have to beg for a repeat colonoscopy which she finally grants. I've yet to hear back from the office, though. I've left at least 5 messages.

I'm at the end of my rope. The only thing that has gotten me through the last 4 days is this forum...makes my complaints feel valid. I feel 98% sure that I suffer from CD and only wish those we call "Doctors" would do what they are supposed to do and pursue this until it is fixed. Any advice would be helpful, I've run out of people to talk to. Not much family support, unfortunately. My mother thinks I'm exaggerating and when the episode in February occured (I was visiting her at the time) she even shushed me because my "vomiting and crying was too loud and she didn't want to hear it". It's so hard not having that one person who is supposed to be there for you when you're sick...Even after that, I still want my mommy just to care when I've been in the bathroom 18 out of 24 hours a day...

Help...

Kari

 

[Cat-a-Tonic]

Hi Kari, welcome to the forum and I feel your pain! I also am not yet diagnosed and your story is somewhat similar to mine (I also had a normal colonoscopy, and normal biopsies and normal blood tests - now I'm trying to figure out what to do next). I've found this forum to be very supportive and informative, even for those of us who don't have a formal diagnosis yet.

As for what your doctor told you, you're definitely NOT crazy and it's NOT all in your head. Keep calling your doctor (and start looking for a new one if your current doc thinks it's psychosomatic!). If the colonoscopy came back normal, I would think that either you'd want to have a new doctor perform a colonoscopy, or maybe have another test like CT scan done? I'm still a relative newbie to all this, so I'm sure others on the forum will have better advice for you than I'm able to give. But keep your chin up, you're not alone, and you're definitely not crazy. Hugs!

 

[MapleLeafGirl]

That sounds awful!! Keep pushing! It is not in your head! I am very sorry your mother isn't being more supportive and understanding. We will all be thinking of you and hoping you finally get some answers!

 

[karim]

Thank you ladies. Im throwing the towel in and heading to the er today. maybe a different doctor will figure something out. Not sure where else to turn.

 

[Cat-a-Tonic]

Good luck and let us know how it goes at the ER. Hopefully they take you a lot more seriously than your regular doc!

 

[crohnicaly stinky]

Kari, sorry for what you are going through. It is not in your head, you just havn't found the right doctor yet.

Many people find diet can relieve symptoms, even if food may not be the initial cause. I know for me eating very sugary foods when I am having a flare upsets my gut, like klondike bars which I had one last week and paid dealry for it. There is a food and diet section here and you might try some of the suggestions, you never know, you might get lucky! hang in there!

 

[Regular Joe]

Hi Kari,

Most of here who have a CD diagnosis went through months and years of what you're going through right now. If we have a diagnosis, I can almost guarantee you we went through a long hard time of being undiagnosed. I don't know a Crohn's patient who hasn't gone undiagnosed for a year, except me at 11 months of undiagnosed Crohn's Disease.

Six of those months were totally wasted by visiting an "expert" GI who deferred me to his Nurse Practitioner. My case was too complicated for a CNP, and I should have been dealing directly with that GI. The CNP pulled the last straw when my flare was causing pain like yours. She told me that she wouldn't prescribe "narcotic drugs" for pain.

This was a Certified Nurse Practioner (CNP) under the direction of an internationally noted Cleveland GI doctor who has authored publications that deal specifically with Crohn's Disease. She thought I was "drug seeking" when the reality was I had undiagnosed Crohn's Disease. The GI merely "supervised" my colonoscopy and had 2 assistants actually perform the procedure. Inflammation was found in the same location it is today. Yet nothing was prescribed and I had no diagnosis, and I was suffering from many of the same dibilitating symptoms you are experiencing.

There are people in this forum who have gone 3 years or more before getting diagnosed correctly - I was lucky to be diagnosed in 11 months, which really was only now about 6 months with the right GI doctor. My girlfriend suffered undiagnosed for 18 months. There are so many GI doctors in Cleveland that work with Crohn's patients. My first choice was one of the absolute top 2 GI's in Cleveland, and my first choice was wasted time.

I went with my girlfriend to her GI appointment. I wore a tie and a sportcoat. I wanted this "new" GI to know that she had someone beside her that was serious about how well she was treated. She introduced me to him, and there was an immediate connection - he looked at me and I looked at him and we were on the same page. You can sense these things if you understand how interpersonal communication works.

She told him that I suspected I had Crohn's disesease. He looked at me and said "I'm sorry to hear that." Empathy was there, and it was my girlfriend's appointment. I asked him if he was accepting new patients. He smiled and "Sure set something up with the girls before you leave." This was the other GI who I considered the "number 2" choice.

He knew when he first met me that I had a "case" of something in my bowel, and he was interested. He's a very inquisitive GI. He's also a professional GI who authored pioneering genetic research that identifies the inherited DNA coding of Crohn's. He headed the GI department for years at the Cleveland Clinic and is the most respected GI in Cleveland as near as I can tell. All of my other specialists know and respect him, even with some of them working at the "competing" hospital, University Hospitals. While the Neurologist, one of my personal favorites who also is with the Cleveland Clinic says "You have Dr. ___? Let me tell you, he's the top cookie here."

What I'm saying is my diagnosis was fumbled even at the top level at University Hospitals by a CNP. I lost 6 months. I got the diagnosis from a Cleveland Clinic GI who personally performed my next colonoscopy. My girlfriend was stunned because he never performed a colonoscopy with her. She told me he must have a profound interest in my case to be as closely involved as he is, with his caliber being at such a high level in the GI community at large. I won't mention his name, but you can google to find out about him, or give me a private message and I'll give you his name and number.

I know without a doubt, I'm in good hands, and this GI has his career rooted in Crohn's Disease research and treatment. Yet, he has a genuine interest in me as a patient. He returns calls and talks with me personally, and he never is short with me, even though I ask so many questions (like how long this post is getting). He takes notes and listens, sometimes with that "quizzical" look and I can see his "gears" grinding in his head. He dioagnosed the Crohn's Disease so quickly because he believes something else is adding to my symptoms, and he's motivated by curiosity to find out what that is.

Now about the ER. God help you, Kari. My cardiologist, also an expert at the Cleveland Clinic lauighed and said out loud "You can't trust anything that comes out of an ER". So PLEASE don't rely on the ER to give you anything but lightweight treatment, unless you get admitted. And if you get admitted, INSIST on being treated by the best GI who is NOT AN INTERN.

You don't need a greenhorn or a "general" ER doctor because you've been suffering undiagnosed for too long. You need an expert GI that you can trust. You need a doctor who's interested in you and your case. You need to be able to make eye contact and be able to trust the man or woman, and they are taking you seriously. You need empathy and understanding. You know that you can "pick up" on the non-verbal cues within 3 minutes. If the GI doesn't "feel right" or "doesn't fit", you'll probably know it at the gut level (no pun intended), so pass on every single one until you find the right GI. Get referrals from people who are satisfied in your region. If need be, travel to a larger city with a hospital having experts.

I'm sorry for going on so long, but getting a diagnosis is not a matter of "shooting straight in the dark." It's finding the right GI who thoroughly understands this disease that will help you. Don't suffer in vain. If it means waiting a month with painful symptoms, we all know what you're going through. Some of us are going through the same thing right now. You'd be better served by sitting down and thoroughly calculating your attempts at finding a good specialist with satisfied patients, rather than taking random shots in hopes of landing a good physician. Don't stop until you find a doctor that "feels right" to you.

Good luck...please keep with us and keep us posted.

 

[Arin B]

"Most of here who have a CD diagnosis went through months and years of what you're going through right now. If we have a diagnosis, I can almost guarantee you we went through a long hard time of being undiagnosed"

Me too, Kari! So sorry that you're going through so much. I can totally relate. I've had serious CD symptoms for a couple years now and have JUST gotten positive results back. My recommendation is to keep trying doctors. While I was massively ill, all my scopes and bloodwork were coming back normal .. was given anti depressants and such but stayed sick. I eventually saw a rheumatologist. He could tell that I was sick and did a more in depth blood panel with me.. and it came out positive for Crohns! After being sick for that long, sometimes you just need a diagnosis. The mental hardship of being told that it's "psychological" is overwhelming.

The test that my rheumy ran was for Auto Immune Inflammatory Bowel Disease Differentiation Panel (IgG and IgA). I think it's a fairly new test in IBD diagnosis, but you might see if you can find a good doctor who's privy to it. I feel a million times better and hope you can too, soon!

 

[Trev]

hi Kari, welcome, i know what you are going through, i was so excited when i was told i had crohns, sounds silly but at least i knew what was wrong with me and it wasnt in my head. i remember many nights rolled up on the hospital floor for 2 hours at a time in pain while the docs watched to see if i was really in pain or just wanting drugs, after they would say oh you are getting some colour back now, well if i was so white wouldnt that be a clue.
just keep pushing the docs for more test, they will find the problem. good luck.

 

[karim]

Thank you all so very much...your words mean the world to me as I've just gotten back from the ER with devastating results...meaning NO RESULTS. I'm so livid right now...I went in and told them everything. My mistake? Telling them I had taken Lortab for the pain the last few days...Their take? I'm having withdrawls and they referred me to Behavioral Health. They said that its not my bowels, it's my stress...and that these "withdrawls" will last for weeks. I was practically begging them to admit me but based on their bloodwork (no special labs, just your basic cbc) there was no reason to keep me there. OF COURSE there will be no reason on a regular blood count. I mean, I was in tears the whole time, balled up on the bed shaking in so much pain. I did get firm with the physician telling him that of course I'm stressed out, I'm in a LOT of pain (Also that two close relatives have Crohn's)!!! They gave me fluids to rehydrate me and a Tylenol...then this little pill that dissolves under your tongue that's supposed to "stop abdominal cramping and pain" (why haven't I ever heard of such a drug? Would have FOUND a way to get my hands on it, if I'd of known...) Well, there is no such drug because it didn't do shat...I'm so conflicted right now. My head is pounding (need I mention the cramping, or is that an "understood" around here?) and I just want to sleep but it never comes easy. The poor nurse waited for the doctor to leave then apologized and told me she would be back...sweet thing came back with a list of GI's in town. So tomorrow my day will be spent dialing all the numbers she gave me.

I want to say thanks again for the posts you all have left here. I was ready to go into hiding for a few weeks until I read them all. What great support! I will press on. I KNOW there is something wrong with my body, I've KNOWN my whole adult life, and I REFUSE to live the rest of my life in pain. I've got people who count on me and trust, I'm not worth much more than a pile of poo right now...definitely pun intended...thanks everyone!

 

[DustyKat]

Hi Kari,

I can't give you much advice but I can give you a big (((HUG))). Roo had similar experiences and a lengthy diagnosis period.How sad and lonely for you that you don't have much family support. It breaks my heart to read that when I'm the mum of a daughter with CD. You will be in my thoughts along with those of my daughter.

Lots of love.

 

[Dexky]

Hi Kari, good luck and maybe get your mother to peruse this forum for a while. It has really opened my eyes.
Mark

 

[karim]

DustyKat- God bless you! I felt those wonderful Hugs from all the way over here- and boy did I need them!! Can I adopt you as my online mum? I promise to remember every birthday/holiday etc. I think I'm a good daughter!

Mark- thanks...but she's in denial. Honestly it seems that if something takes away from her problems and her time to focus on herself, her newest husband and my 5 year old sister, than its not worth it to her. I've learned to live with it for the most part...but I'm pretty sure no matter how old you are, you still want your mommy! Maybe this is a woman thing...I'm not sure. This is another reason I am eager for the dx to come; I want to be able to show all the doubters that something really is going on and I'm so not making this up! On that note- WHY of all things would I pick this to be my problem if I just wanted to exaggerate or craved attention?! If I could choose, I'd pick something much less painful to complain about...and to the doctors yesterday at the ER- If you really thought I was in there for drugs...If I can put THAT good of a show on JUST because I want some sort of pain medicine, then dam* it, I earned it! If I was faking it, WHY would I be begging you for a colonoscopy? WHO enjoys getting a camera stuck up their arse?! Common sense, people, common sense...

 

[DustyKat]

:mademyday: oooooh, I'd love to be your online mum! I wouldn't even get angry if you didn't remember one date. Lol.

Another big (((((HUG))))) coming your way.

 

[karim]

YAY!! Mum!! When is your birthday? Mine is today!!! So happy to have you

 

[Cat-a-Tonic]

Happy birthday Kari! I know the disappointment of not getting a diagnosis, don't give up. I know it's frustrating but keep hanging in there. Do something lovely for yourself on your birthday.

 

[karim]

Cat- Today I'm working on finding a good GI in my area...but hoping I can get some rest in as once again, I was up all night with nasty pains. In fact...that sounds delightful right now...a nap! I think I shall! Thanks for the birthday wishes!

Kari xx

Everyone else- I have to thank you all once again for making my day/week/month/year/decade!! I have not been this happy while in this much pain EVER before! It's an odd combination but feels like just what I needed to push through the last 2 weeks. You are all so fabulous

 

[DustyKat]

:bdayparty:

A GREAT BIG HAPPY BIRTHDAY TO YOU KARI!!!!

EXTRA SPECIAL ((((((((((HUGS)))))))))) COMING YOUR WAY. I WISH MORE THAN ANYTHING YOU FIND THE ANSWERS YOU ARE SEEKING.

LOTS OF LOVE.

 

[Hedgehog]

Hi Kari,
I really really relate to what you're saying. It took me three years to get diagnosed and I had loads of tests. I had docs saying I was neurotic and my family at times believed them and at one point called in the psychiatrist! Grrrr that makes me so mad now. It was the loneliest place to be and I know how you feel. You are so vulnerable because you're physically ill and it's difficult to fight your corner.
In the end I got angry with the GI and he sent me for a pillcam endoscopy. The Crohn's was found in the small bowel. Can you see of you can get this done?
Keep on keeping one. Don't doubt yourself. Let us know how you get on.
Love Gail
x

 

[karim]

Mum- THANK YOU SO MUCH!!! You are so warm and welcoming...don't think I've ever felt love radiate from my laptop before, but sure did today! (Could be the 90 degree heat but I will just pretend its from my new adoptive mum )

Gail- I cannot even begin to describe how relieving it is to hear you and others tell me you have gone through this same thing. I am so happy to have found you all! Sometimes I start to doubt my own sanity when so many are doubting it for me...Luckily my current boyfriend is still being supportive. I was so worried when the doctors told me that for the hundredth time it was in my head that he would start to doubt me as well. I showed him this forum lastnight and he's happy I found some people who understand. He was like me at first "wow, that guy just said the same thing you have been saying for a long time" and "Isn't that a side effect that you have had?". I believe he is finally starting to really understand what I'm going through and although he can't relate on a personal level, he is glad I've found a new "home" with you guys.

Love you all for everything you have done! (Quickest this gal has EVER fallen in love lol)

 

[DustyKat]

Sent you a PM

 

[dreamintwilight]

Hey, Kari! Glad I finally saw this thread and had a chance to hear your story. Welcome officially!

Whenever I hear stories like yours I feel grateful that my own diagnosis came so easily (though I suffered for 6 months without seeking any help!). It baffles me how a known disease in the medical world is overlooked by so many doctors. I don't GET it!?

Thank goodness for that nurse in the ER who gave you that list of GI docs. Have you been able to get any appointments with any of them?

I am so glad you found the forum. It has been a great help to me! Don't give up Keep us updated on your progress!

 

[karim]

Thanks again for all the kind responses...to know others have experiences the same trials make it worth the pain and time it is taking to get the diagnosis and treatments that are going to make me healthy again someday! I LONG for that day! Cannot remember the last time I woke up ready to defeat the day and feeling GOOD!

Thank you all!!

Kari xoxoxo

 

[Manzyb]

Hey Kari! Welcome!

Sorry that you are having such a rough time. ER docs can be such an ass.

It took me a couple of years to get diagnosed, also. I started getting sick when I was 12. I kept going to the GP and he kept saying it was IBS, or you're making it up, they even one time told my mother that I was bulemic. SERIOUSLY?? I got the bolemia diagnosis at 14. Then they said I was making excuses not to go to school. My mom, thank god, believed me that there was something wrong. I had lost 15 pounds in 4 days, went back to the doc, and then he referred me to a GI. Saw the GI that same day, and then was diagnosed with Crohn's the next morning after my colonoscopy. It was a long hard road, and it seemed never-ending!

I really hope that you can get into see a good GI. I absolutely love my doctor and was so fortunate that he happened to be the one I was referred to.

For now, I hope that you find the support and compassion that you really need right now through this forum. It's amazing, and I am addicted to it. It really does make you feel like you are not alone and there ARE people who understand what you are going through.

(((HUGS!)) And happy belated birthday! I hope you had a good one

 

[Astra]

Hi Kari
and welcome

belated Happy Birthday sweetie!
I'll be ya Mum too!

ha ha ha sorry to laugh lovie, but all this is SO BLOODY FAMILIAR!!!!
Did you know? I'm mad, mental, neurotic, depressed, a loony, in need of a lobotomy, and did you know? I've been on so many anti depressants, that I became immune to them!
and guess what? I was a Crohnie all along!! what a surprise! I knew that!! DUH
hope you find the strength to fight this, find the courage to kick their arses and don't take no for an answer, you defo sound like a Crohnie to me! Just wish you had the dosh to go private, then slap them with the bill!
we're here for you and you'll make loads of new friends!
hang on in there
lotsa luv
Joan xxx