Misdiagnosis?

Hey everyone,

Just thought I'd introduce myself and see if I can get some opinions. I'm 23 years old, female and my new GI says he doesn't believe I have crohn's and that it's IBS. My old GI has since retired and has been around in the business for over 40 years. This new GI is a lot younger and seems to be learning still. Apparently all his patients who were referred to him seem to have the same opinion on him as I do (according to my doctor, who believes I also have crohns). He sort of seems a bit blase about things and I feel as though I am telling him what he should believe is wrong and have to prod him for answers.

My previous GI was 99.9% sure that I had crohn's based on my symptoms, blood tests, i have the genetic markers and my biopsies taken from a colonoscopy and gastroscopy showed some suspicious cells. They weren't abnormal enough to be considered abnormal but they weren't "normal".

I have been trialling being off my medication (salofalk granules). I was meant to do it for a month, but cos this new GI has convinced me otherwise that there is nothing wrong it's been 3 months. Since then the D has come back once a month and my ribs on the right hand side are starting to feel tender to the touch again. I have always been in somewhat sort of denial and have said it's IBS but I just don't know who to believe!

Do I listen to the new GI who I have seen twice within six months. Or the old GI who has years of experience on this new guy and who treated me for 2 years?

I also suffer from fructose malabsorption but I have that under complete control. This new GI seemed to keep focusing on that more so than anything else which really frustrated me.

Would someone with IBS have suspicious cells on their biopsies? My doctor and old GI said that someone with IBS would be all clear, but I just don't know? I know crohn's can take a long time to show up. I do have C sometimes which has been the way ever since I was little anyway. Either way whatever goes on with my bowels it's never without some sort of struggle!

I have been tending to get pains/aches in my right wrist and sometimes my fingers too. Also my liver enzymes a couple of years back when I was getting diagnosed had been slightly elevated 3 times.

Would you think it's safe to stay off medication even with mild crohns??

I'd really appreciate your opinions!

Thanks :yfrown:

I'm only just learning about this disease too so I'm afraid I can't help except to hope that you get sorted soon.
If your GP believes you have Crohn's could you not be refered to another specialist? Just a thought.
I'm still not diagnosed but the docs believe that I have Crohn's. It is so frustrating to be without a full diagnosis.
Hang in there and keep pushing for answers
Sam

I wouldn't presume to advise you on your meds but I will comment on how tough it must have been to be so near an answer and have your GI retire w/o a definite dx. Now it seems you're back to square one. It's like a demented game of Life and you landed on the "GI retired go back ten spaces" square. Sorry, it just seems all too common among the users here to struggle with getting a dx. If the new GI assumes he knows better than the guy with 40 yrs, maybe you should seek a new, new GI.

Anyway, good luck and welcome.

Hi Kiki Welcome to the forum! I wish I had a buck for every misdiagnosis, and Gi's should know by now IBS is a condition and IBD is a disease. You don't have diseased tissues and biopies with IBS. Lower right Quadrant area is the most common of Crohn's. Also in most cases, doctors believe that most times blood is apparently the major part of diagnosis.

I am not sure what country you are from but most times in the US you can get quick referrals. In Canada takes you longer and that is where I am. I too am in the midst of a continuous flare and only on Pentasa and natural stuff until my Gp refers me to another Gi here. My present Gi with whom I have an appt but not til Sept and he has told me he is on his way to retirement. Practicing almost 50 years.

If you do in fact have Crohns, you should be on some kind of medication or see a naturalpath, either way, there is no cure and flares are going to be iminent, throughout your life. If you can see another GI , go for it, this is not a game of what doc knows what, it is about you getting a proper dx and or doc to treat you.

What country you from and others can come on here and help you, we are not doctor but most of us have been thru what you are going through :hang:

Welcome aboard!!

Thanks for the quick responses! i'm from Australia. It really does feel as though I have gone back to square one again. I'm meant to be seeing the new GI in a few weeks time. I asked him the last time I saw him, if he could ring my old GI and talk to him about the test results. But I really doubt he ended up ringing him. I'm not even sure If I will bother going back. The only reason I would is to see if he contacted him and to tell him what my regular doctor thinks. It's a bit hard to know what to think.

It's like I think why take the medication if I don't need it? But then on the other hand I think why would I have been put on it in the first place if it were IBS? It's also hard when other blood tests come back negative like inflammation marker ones but the old GI said it doesn't mean that Crohn's isn't there because it is so hard to diagnose. I also think I forget that everyone presents differently too. It can take time for it to show up. I haven't had the Pillcam test done, or barium. But I don't know if there is any point in doing it. Maybe I should think about seeing a new GI, my doctor said to only see a new one if things get worse, but I think it would help to have someone else to talk to about things.

Hi Kiki and :welcome:

Where in Australia are you?

You're old GI sounds like he is on the money with much of what he says. There is a thread on here about the very fact that inflammation markers are normal when people are in very obvious flare let alone anything less, it was certainly case with Roo.

I think it's important to have a GI you are comfortable with and can trust and why wait till things get things worse, better to do it when you're not at the end of you're tether. Hang in there.

Take care,
Dusty

I'm from Melbourne. I see you're an Aussie too! Thanks for the info about the inflammation markers. It's almost like Crohn's is based a lot on opinion too. I definitely don't want to wait for things to get worse. I read stories about people who are fine one minute then the next they end up in hospital. I don't want to do that to myself. Maybe I should get back on the medication sooner rather than later.

hi Kiki and welcome

first of all, the inflammation marker result can't be relied on, by itself. right now i have a very active, angry area of Crohn's inflammation which chucks out mucous and blood on a daily basis - yet my inflammation marker from only last week was 'normal'.

i would go along with what others have said - get a different consultant. also, how long ago were the scope tests? and are they the only test procedures you've had?

Hi, thanks for the welcomes
I had the scope tests done just over 2 years ago, back in April 08. Apart from those two scope tests, i had also CT scan but that came back as normal too. How reliable are other tests, such as the Pillcam?

i've never had a pill cam done, but i know others here have - i'm sure we have a thread on it somewhere... if you click Search above and type in Pill Cam i think you'll probably find at least one discussion on it.

i would actually suggest that you try and get another colonoscopy done, maybe an endoscopy too if you're having symptoms in your upper stomach area. 2 years is a long time in terms of inflammation, and things may have changed now and be more apparent.

but i'd still recommend you try and change GI's first.

Thanks for the advice. I will definitely look into another GI. It would be good to have another opinion on all of this stomach business! Knowing my body, nothing would show up still! Not that I want it to, but it would help provide some answers so as not think this is all in my head!

lol i've been told that too - active imagination.. turned out to be Crohn's.

keep us posted how you get on, maybe someone in Oz here could recommend a good GI to you

I would agree with dingbat on having another scope done to see. I would also have blood test done again and have him review the previous blood tests that indicated the CD to your previous GI.

Hi KIki,

It is really frustrating to get a proper diagnosis. I am of the opinion that people know their own bodies and if their body is telling them something is wrong, then there probably is. Obviously your last GI saw a test that came back positive for Crohn's or I dont think he would have diagnosed you with it. The medication he put you on for Crohn's.....did it help?

I agree with the others, get a new GI doctor and a new set of tests done, then you will have peace of mind as to what is wrong. Good luck and I hope you find a suitable doctor

Wendy

Hi Kiki
and welcome

sorry you're going thro this, it is soooo bloody frustrating! I was told I had IBS for 15 years! If I knew then what I know now, I would have done something about it sooner, you're at a much more advantage than me, there was no computers and internet and forums then! I have learned so much over the years about IBD and IBS, and was always convinced IBS doesn't exist, but it does, but I didn't have it! I have strictures from years of inflammation, It is a functional disorder, not a disease. Crohns causes strictures and inflammation, there is sometimes bleeding and weight loss, and other manifestations such as joint pain, mouth ulcers and styes. You don't get any of these with IBS!
If I were you, I'd get a second opinion, and do not accept a dx of IBS,
I have a thread on here somewhere 'Does IBS really exist?' it is very interesting and debateable!
glad you found us, lots of support and friends here for you
lotsa luv
Joan xxx

thank u all so much for your opinions and advice. i really appreciate it. it's nice being able to come on here and speak to people who understand! i'm still deciding whether or not to go back to my new GI one more time and just see what he has to say this time, then i will probably look for somewhere else to go to i think. still haven't got back on the meds just yet...so do you think if it were IBS then there wouldn't have been any suspicious cells and it would've been all clear like the doctors said? i reckon the new GI will say everyone has some sort of inconclusive cells! ahhh i just don't knooow. you're all right when you say it's bloody frustrating!

also i think the medication has helped as when i went off it the D once a month came back as did the rib cage pain more often. but it could just be coincidence?

i was also wondering, does anyone else get pains in their wrist and elbows sometimes? i get it every now and then, just in my right arm and the rib tenderness?

Yes, my wrists hurt for weeks, thought it was from hauling wood, but it was lasting way too long. Joint pain is famous in Crohn's disease. Can't say my elbows bothered me but every other joint known to man has. :hang:

ok well i'm off to the GI on Monday (the one who doesn't think i have crohns) just to see what he has to say again. i have something i wanted to ask you all though. how do you know when there is definitely blood in your bm? this morning i went to the toilet and i think what i saw was pretty much blood. it was only a little bit, and it was bright red.

i had eaten strawberries the night before and like a sip of tomato soup, but i've eaten those things before and i haven't had any problems after eating it before. it was a brighter colour than tomato but not as dark as a strawberry. it was very much a bright red blood colour. as grosse as this may sound, just to be sure i sort of wiped a bit of it and it went onto the toilet paper and looked like blood. i'm still off my medication so maybe it means it's time to go back on it? could it be a fissure maybe? i didn't have blood when i wiped though.

how can you tell the difference? i really don't think it was the food. i wouldn't have thought the strawberry could make a streaky blood type look.. i would have thought it would look more like food rather than blood?

Hard to tell, when you eat something red it is a challenge. Bright red is closer to the butt area, dark blood is the one to worry about. You could have a fissure, hemmies. If there is no blood on the paper, chances are it could of been the food. I ate tomatoes the other day , it was red. Ask your doctor on Monday, let us know what he says. Try not to worry ok?

yeh it's hard not to worry! it's just that tomatoes and stuff don't usually do that to me. plus i didn't even have a whole bowl of soup. it was literaly less than a teaspoon! but i will just wait it out and see. thanks for the reply

Hiya Kiki

try not to worry, I know that's hard but worrying will exacerbate your symptoms.
from what I've learnt, bright red blood on paper or in the bowl is usually a sign of a tear, hemmoroid or fissure, but dark browny red blood is coming from inside, usually old blood.
not sure about tomatoes or strawberries tho, I've never seen colour in my poo!
beetroots defo make your wee and poo red tho!
hope you find answers soon
lotsa luv
Joan xxx

Hi

Hello everyone,
My daugter aged 16 has just been diagnosed with Crohn's disease she had her appendix removed at Easter and despite her inflamed appendix being removed she has continued to have tummy pain and vomiting. She had a colonoscopy and Crohn's was confirmed. A real shock but at least we know whats wrong all this smack bang in the middle of GCSEs - she was taken 2 in hospital and did 2 of her exams there and was put on a six week diet of alicalm milkshake.She is still determined to do 4 A levels in September!

They found a 2mm sticture affecting 12cm of her small bowel and put her on Azrioprine she started to eat again - and vomit again. She still has anemia. She is back on the "milkshakes" and I think surgery may be necessary???? She has never had diarrhea.

I just wanted to say hello to everyone out there as I have a feeling I will want reasurance and advice. Would love to hear positive things. D xxxx I have posted in the new members forum but it seems to have disappeared!

Hi Dallies welcome to the forum!!! Parents of children with Crohns is always welcomed. Perhaps you should post on a yourstory thread so everyone can see and meet you to give YOU support and help regarding your daughter.

The appendix removal is a very familiar and popular way to find the dx of Crohns. Your daughter is at a tender age. She cant live on milkshakes so if that is her only way of controlling it , perhaps a laproscopic type surgery would be ideal in her case. Laproscopy is done very quick, heals fast and gets her on her way to healing and a normal life. She may have to be on something after the surgery to keep it at bay, there are many ways to go for meds or LDN. When someone vomits or bowels are not moving it is usually scarring or heavily disease and is obstructing. This must be overwhelming for you and your daughter, hope she gets relief soon.

:hang:

yeh im not really sure what to think of it, because it hasn't happened again within the past couple of days and i've still been eating strawberries and tomatoes...maybe it was just a fissure? i'll talk to the GI tomorrow anywho. still think i need to hunt down a new one!

soo just got back from the GI a couple of hours ago. he's now just leaning toward crohn''s more. i asked him if he rang my old GI (like i asked him to last time) and he's like oh i ran into him and yeh nothing is set in concrete but he seems to think crohn's is what it is.

i have a feeling he never actually got in contact with him at all. bit of a coincidence that he happened to "run into him" ....hmmm who knows. i'm going to go back on my medication anyway, he said i may aswell try going back on it. he's still not 100% certain but based on all the tests i've had and my symptoms it seems to be crohn's. he did say that my old GI was seeing me longer than he has been so least he admits to that sort of thing where my old one probably knows more about me.

ohhh it's just very frustrating!!!

Hey Kiki, did you have any tests or just a consult? What did he think about your "blood"/ tomato or strawberry question?

What drugs are you on now Kiki? Did he add any more? Hang in there, we know it is frustrating... some still arent even diagnosed yet or had a year like me to find out!

We are here for you.

Penny

heyy, at the moment i am on salofalk granules just once a day. it was just a consult haven't had any more tests done. i asked about the pill cam test but he said even that isn't that accurate and can miss parts. i still think he probably thinks it's IBS. I mentioned to him about the blood and he said it would just look like blood, bright, red...blood and that it could be from a tear/fissure. i also asked about the biopsies and if someone with IBS would suspicious cells and he said most probably not. so again i guess that leans more towards crohn's. i'm not going back there til the end of the year if i even do go back that is.

i'm kind of blocked up atm which isn't helping my appetite and i'm tired and just feel blah. also the fact that my sister's best friend just passed away from a rare cancer isn't making matters any better!

i'm still not sure whether to seek another opinion or not?? maybe it's best to trust the doctor who saw me for two years?

Hi KiKi! I can certainly understand your frustration with your diagnosis. I personally would look for a second opinion from another specialist. It took me 14 years to find the cause of my problems, and several doctors to get there! I finally found one that found my symptoms odd and from there he sent me off for various testing. Right now I'm on 25 pills a day and my Crohn's is "mild". I'd hate to see it get severe! Hang in there. Good luck with your journey to find an answer, I know it gets annoying but once you have an answer you can feel somewhat relieved!