Misdiagnosed :(

[SunshineSmile]

Did a pill cam about a month ago from a doctor where I live and he said i had ulcers and crohn's disease in my small intestine. he even prescribed meds. then went to the mayo clinic did a bunch of tests and did ANOTHER pill cam and the doctor just called today and told me my pill cam was normal.... so now i'm back to the beginning again. It's good i guess that he ruled crohn's out now, and that i'm at the best place for getting help, but it's just mind boggling to hear from one doctor that you have severe case of crohn's (with pictures to prove) and then all of sudden I don't and everything's normal, but my pain and everything has worsened... makes no sense. But the mayo clinic doctor said that they are just gonna have to kinda start over and investigate more. Starting with more blood work... so we'll see what he decides to do after this. this is crazy been undiagnosed for 8 years and then was falsely diagnosed and now back to being undiagnosed! I don't like this game. I'm in good hands at least now.

Had to vent sorry for writing so much if anyone reads this. it's just frustrating and confusing.

 

[happy]

Hi SunshineSmile,
I have been following your story...
I am so sorry that you didn't get answers today that would have started treatment and the road to recovery.

It is good that the doctor is continuing the search for a diagnosis, but I understand your frustration. Was he able to give you any medication to help with the symptoms that you have now, or does he still want to wait until more testing is done?

 

[SunshineSmile]

Thank you. I really appreciate the response! He will not give me anything for my pain... so that is a big down fall I've just been suffering and no one will give me anything. I just use over the counter meds and that does not work. I just hope some blood tests will show something.. *hoping!*

Just wondering what is causing me all this pain and symptoms if it never shows up. It's hard because when my first pill cam showed something i was so relieved that i wasn't 'crazy'. and now i did this 2nd pill cam and it's normal, so someone really messed up with the test the first time or something because that's impossible. i had a diagnosis at the tip of my fingers! and now i'm back to the beginning, but it's good that i'm at the mayo clinic. they specialize in the 'weird and wacky' that no one else can figure out. so I have faith in them. just frustrating to go through for so long.

 

[Denise]

Sorry Sunshine that you are still on the journey to find answers. You are at a good place and I hope that they investigate you well and find the answers you deserve.

I am in a sort of similar situation. Dx as IBS for 10 years, then "most likely" CD but still unsure. So awaiting more tests. I understand your frustration as that is where I am now too.

I wish you all the luck.

 

[SunshineSmile]

Thanks Denise, I hope you get things sorted out as well! It is very frustrating. Good luck through all your upcoming tests!

 

[Droopy Drawers]

Hi, Sunshine.
Sorry for your troubles.

I'm in the same boat, as they can't sort out my tummy woes either.
You are in the best possible place, so just hang in there.

It seems every Doc I see contradicts what another Doc has said.
To say it's frustrating would be an under statement.
Keeping good thoughts for you & hope they give you some relief soon.

 

[SunshineSmile]

Droopy Drawers, Thank you for your thoughts <3 I'll keep you in my thoughts as well. Being undiagnosed is such a position to be in... I feel like every doctor has something new to say or contradicts another... I know how I feel and I know I don't feel "normal". It's just weird that the tests come back positive for crohn's and then a month later it's normal with a different doctor... someone seriously mixed up something, cuz that's impossible. and now i'm still undiagnosed. very hard to take in. But you know how I feel. I hope you get answers soon too!!!

 

[Droopy Drawers]

I would just love to round up all the Docs I've seen over the years & lock them up in a room together & tell them that nobody leaves until they come up with an accurate dx.

That for me runs a close second to winning the lottery ! :lol:

 

[Slugger]

Misdiagnosed

Ugh... this is too familiar.

When my physician called me up to tell me the results of a lower GI (barium enima) he told me there were no strictures and wanted to treat me with asulfadine and Malox.

I made an appointment with another doctor. When I picked up the radiographs, I held them up to the sun in the parking lot. I was blown away!

I'm lucky. I am a doctor. I taught diagnosis and treatment planning. I can read radiographs.

May have saved my life because I ended up in the hospital that day and a right hemicolectomy.

Slugger

 

[SunshineSmile]

Droopy, totally agree!! haha! Goodness gracious!

Slugger, wow that's amazing! Good thing you are a doctor so you could figure it out yourself. Goodness, seriously so lucky! But that worries me... what if I do have crohn's, but they mixed up the results or something crazy weird... ugh i'm completely overwhelmed and confused.

i don't know what to believe, but the mayo clinic is the mayo clinic.. they are the best.. so i can't really doubt them. i guess when they get through all these other tests for other things i'll find the real problem.

 

[Droopy Drawers]

when I rang to book my latest test they asked the date of my last sonogram.
I gave her the date & she said it showed I had gall stones.
I challenged her answer & told her my Gastro, Pcp & a surgeon all told me the gb was empty.
Then she slaps me on hold, only to come back on the line 10 minutes later to tell me there was a typo in the report & my gb was clear.

I had a brilliant tech who let me watch ( sounds morbid, but hey, it's my guts & I want to see what's going on in there ) & my gb was pristine.

For all I know it was the cleaning Lady who answered the phone to book my appt. :rof:

One thing I have learned is to speak up for myself.
Doesn't hurt to keep your sense of humor in good working order either.
That has helped me through some of the worst times.

 

[Slugger]

Hi SunshineSmiles!

I have some comments...

First, Crohn's cannot be definitively diagnosed without a biopsy. I don't recall did you have a biopsy?

Second, if your doctors are unable (or unwilling) to make a diagnosis, ask them what their differential diagnoses are. Then ask them how they are going to diagnose your case and what their treatment plan is.

Third, Mayo isn't the last word. Frankly, I'm not impressed. My experience with Mayo is that their reputation is based on a few physicians. Most patients see residents and inexperienced physicians. Ask about your doctor. If he/she is not a 10 out of 10 tell them you want to see another doctor.

The squeaky wheel gets the grease.

Slugger

 

[SunshineSmile]

Droopy Drawers, that's crazy!!!! Good thing you challenged her! haha I try to keep a sense of humor too! it's the best thing to help when your under rough waters.

Slugger, Thank you for your comments! They only took biopsies of the first 3 ft of my small intestine and last 3 feet of my large intestine, but the pill cam i had first done a month ago showed crohn's in the middle of my small intestine, and that's why he made me do another pill cam, which showed nothing? so weird... sketchy situation. Someone's being a little fishy here. lol :/ don't like it. I'll have to ask my doctor at the mayo what he is thinking it is, but for the most part I think he is just as confused as me right now. but the next step is more blood work...

I'm thinking I may call the mayo clinic and ask to talk to my doctor's nurse practitioner and tell her my concerns, but I just don't want them to think I'm nagging or being impatient. I would be very nice, I'm not a mean person at all, I just am concerned, ya know?! Hmm I'll have to think about it. I understand what you said about the squeaky wheel gets the grease though! very true! Just don't want anyone there getting upset at me for questioning...

 

[flowergirl]

have you thought of going to UF instead of mayo? i saw a good dr there, john valentine. he's a crohn's guy, but also ibd. i think gainesville is closer to you than jax.

 

[flowergirl]

oh, and don't ever feel like you can't ask questions. if they get upset or make you feel like you're "naggin" them, then see another dr. don't ever feel like you're inconveniencing people when you are SICK.

 

[ormsklad]

I feel sorry for you as this has happened to me I have seen three gastros who all told me it was IBS and I asked my gp to send me to another which I had to go private for and after he had done all the scopes and pillcam and MRI I have small bowel crohns why not ask for an MRI of for abdo? Hope you feel better sson

 

[SunshineSmile]

Yeah I actually just talked to the mayo clinic and it didn't really make me feel any better. I guess I'm just going to trust them. He said they are gonna order the blood tests to be done shortly. And then we will go from there. And he said he will get the to route of all this. Just to be patient... So I'm trying. Its just frustrating. But they know that. And they are trying to get things done too. So just gotta hang in there..

 

[Crohn's Mom]

Sunshine...I just want to say..don't ever be worried or scared of calling and asking questions to them! Especially to the Nurse Practitioner The one Gab has there is amazing, and I talk to her a hundred times more than I talk to the doctor! I even have her email and we communicate through that a lot. It's your body, and your health, and you have every right to ask ANY AND EVERY question you want, and twice if needed!

Hang in there sweetie...I know this has to be soo hard
I feel bad for you. I'm kinda wishing you had the same doc there as Gab so that I could re-assure you more that he does know his stuff; but I do know that they're partners so hopefully he is just as good. From the sound of things they have done so far, and so fast, it seems he is really trying to figure you out and help. I hope you get some answers soon!

 

[xJillx]

Our stories are very similar, so I know exactly what you are going through. It is so confusing and frustrating. I had a colonoscopy in July 2010 that showed inflammation & ulcerations in my TI and rectum. I was diagnosed with Crohn's and started Lialda. Symptoms persisted, so I switched doctors. With this GI, all tests have been almost normal. I have had CT scans, lots of blood work, MRI's, pill cam, a few flex sigs, and another colonoscopy. Only some mild/possible inflammation in my rectum was seen on one scope. So, my GI has retracted my diagnosis, suggesting I had an infection when I had the first colonoscopy. But I am still sick.

So, questions I have asked myself and you should ask - If you were on medication, couldn't that be the reason why this most recent pill cam looked normal? What are your symptoms and what other illnesses could be the cause?

It does sound like you are in good hands at the Mayo Clinic. I sure hope you get answers soon.

 

[SunshineSmile]

Crohn's mom, thank you, Yeah it's just really hard, of course you know that. I just don't know what direction I will be going now with all this. I just don't understand... but I know the mayo clinic will do the best they can. and hopefully get to the bottom of this soon. I just think it's weird how my pill cam came back abnormal with my first doctor and then now is absolutely normal with the mayo clinic. Hopefully the mayo clinic is right, which i'm sure they are. they are good at what they do. just crazy that this all happened.

Jill, wow our stories are VERY similar! Goodness, sometimes I just don't understand doctors... how can every doctor I've seen give me different answers. Doesn't make sense. I wasn't on any medication through any tests, because they won't give me any meds for my pain and symptoms. and I have no idea what this could be now... My grandma had Addison's Disease, but I don't think that can cause GI symptoms but maybe? Not sure. I am very curious to know when we get to the bottom of all this, what it may be. I will be gong to a local lab near my house to get my blood work done that he ordered and to get my directions for more stool tests on monday. So after those 2 things, maybe he will have more of a direction that he's going. I hope you get things figured out soon too Jill!!

Thanks again!

 

[sunflower]

If you were on treatment, especially prednisone, it can reduce the inflammation and close the ulcers and you can "look" fine. Also, as far as I know, the pill cam is not 100% accurate. It cannot look at all of your intestines. As it goes through, it turns and may not "look" at a spot that has inflammation or an ulcer. I think that is hogwash to totally discount what the other physician saw. Does he think the previous doctor just photoshopped your pics or something??

I had a doctor do that to me once, too. I had been on IV steroids in the hospital for several weeks, plus oral prednisone when I was out. He did a scopy and the gene test (I forget what it is called) and said I didn't have Crohn's. I told him that I didn't think he could UN diagnose me that easily when I had been being treated for this for several years, and had repeated biopsies that showed granulomas, ulcers and other fine things that go along with Crohn's. He said he was smarter than the other doctors and said I had ischemic bowel.

I told him that I was a better patient than that, and promptly sought another doctor. I am much happier now. And guess what? I do still have Crohn's. My biopsies a year later were positive again.

I know Mayo has a great reputation, but I distrust doctors that will not take in account what another doctor found. Were there biopsies?? And what did they say?? This is a hard disease to diagnose. In my opnion he should be trying to resolve WHY there were differnces, and not just ignoring the differences.

As an aside, I highly recommend keeping a copy of all your medical tests and the results. You can get a copy of your pill cam footage, the colonsocopy picutres, xrays, blood work, everything. I don't normally keep copies of my colonoscopies but may now since my prervious experience made me nervous. I am not a doctor, but I look at everything, anyway. As a matter of fact, I have a place on my back xray that I have some serious questions about and will bring them up when I see the proper doctor!

I am not sure why it is so hard to get second opinions on xrays. They are just as subjective as any other medical decision. Not all radiologists are trained in seeing the finer details with the lesser known diseases. I need to do that with my back xray.

Do not be afraid to speak up. Let them know that you disagree, and feel they should take the earlier findings more seriously and if they won't they need to give you an explanation. An ulcer without a biopsy is not a full dianosis, but is should not be thrown out the window, either.

I am rambling again, aren't I? I hate doctors that think that the only thing you can us to diagnose from is what they see today. Autoimmunes are sneaky like that - - here today, gone tomorrow.

Good luck and hopelull he will be able to get it all together fo you.

 

[dannysmom]

Oh Sunshine! Thanks for posting this update. (You can ignore my question in the undiagnosed forum.) How frustrating!!! We went through a similar situation with my son - received a diagnosis and then taken away - it tears at your heart for sure. I hope the Mayo doctors can help figure this out. Have you ever been given some Crohn's medication to see if it helps? (prednisone or pentasa?) Please keep posting and let us know what tests your doctors are doing.

 

[SunshineSmile]

Sunflower, thank you SO much for all the information! You a lot of great points! I think that the guy who did my first pill cam made a mistake, because he threw away the pictures and video from the pill cam, so that was sketchy in itself, you know? So... I think this pill cam actually showed the truth. but it is hard to trust doctors... you never know! But hopefully they can get a lead on which direction to go now since the GI route is kinda done with since i've been through every test... but apparently there are a lot of different diseases and such that can cause GI distress. So, I'm getting blood work done, and we'll see what the mayo doctors think we should start checking from there! I'll keep you posted! Thanks again!!

Dannysmom, gosh I know it's very heartbreaking for sure. I had a relief that I finally knew what was going on, and now no one does again! gosh... but at least i'm at the best place for help. they will help me more than anyone else could of. And no they won't give me ANYTHING for my pain it's terrible. They don't want to try things and then have my test results for other things come back false because I was on meds. it's frustrating.. because all i have to make me feel better in the slightest bit is my heating pad and my Emetrol nausea syrup... it's tough. But i'm hanging in there!! I hope your son is doing better!!

 

[Denise]

Sunshine, your doc threw away your pill cam pics and video??? I'm pretty sure that is not legally allowed. I know that in Canada that results need to be kept for at least 10 years in a secure place. I'm sure that the US must be similar.

 

[Slugger]

Sunshine,

I want to apologize for my comment about Mayo and don't want to undermine your trust there. I was referring to a Mayo Hosptial here in California.

As for destroying or throwing out the photos and videos, your doctors shouldn't have. Physicians must keep patient records for six years after the last visit; however, records for children must be kept for not less than one year after the child's 18th birthday.

 

[kiny]

So... I think this pill cam actually showed the truth.

Well, would be easy if pill cams were able to show the truth, they show part of the picture. I just want to say that you can have inflammation, infections and crohn's while at the same time your mucosa looks completely normal. Crohn's is not just superficial inflammation in most people, it happens in deeper layers. Good luck.

 

[sunflower]

Well keep trying. They are some of the best, but still have the right to another opnion after that.

I have serviously thought about taking all my problems and just showing up at the clinic and waiting. They say you will be seen if you do that. You just have to wait. I don't know if I could een carry all the xrays and labs that have been done over the years, but maybe they start at square one without a diagnosis. I wold like that VERY much! Just see what they can come up with. Kind of a scary proposition, though. Maybe I will if have to go back on disability for a while. Tummy is acting up pretty bad.

 

[Slugger]

@kiny, You are correct pill cam is nothing more than a way to take a look and it's not perfect at doing that. No doctor can make a definitive diagnosis without a biopsy.

@sunflower, I learned a long time ago to listen to my instinct. I think you should too. There really is no downside to showing up at the clinic, except burning a lot of time. Grab a good book and go! The most important thing is to take control. Yes, it is scary but you have to do it. Don't wait until you have to go back on disability.

 

[kss]

And even if you have a biopsy sometimes false negatives happen. Here's my favorite example: Teen diagnoses her own disease in science class

And if you feel like you have have something to add to the "What Was Your Crohn's Misdiagnosed As?" then please do.

 

[SunshineSmile]

Thank you sooooo much everyone! I really hope that I really don't have Crohn's because if I do and they miss it, then that would not be good at all... but i'm going through a "fat diet" stool test to see how much fat my body is actually absorbing because i've lost a lot of weight. and also my mayo clinic doctor is doing a lot of blood tests and will be testing for addison's as well because my grandma had addison's.