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Diagnosed, undiagnosed, diagnosed, undiagnosed....

Hi everyone

I wish there was a forum for Undiagnosed-Diagnosed-Undiagnosed-Diagnosed-Undiagnosed......you get the picture.

I will be on the Undiagnosed section more often, so I wanted to introduce myself. Here is my phantom IBD story. It is a bit long but then every Undiagnosed story is.

I have been ill since I was about 13, and I finally found a doctor who has taken me seriously 28 years later!!! (Do the maths!). Take home message: never give up.

For most of that time it was possibly: tuberculosis, helicobacter, psychological, migraine, lactose intolerance, addisons disease, gastritis, viral infections - no-one suspected anything else.

Cue to 2011 and I was pregnant with my second child. I got so ill, pain, diarrhea, nausea, lack of appetite. I kept going to the doctor saying how ill I felt, but the doctors and midwives said it was normal in pregnancy. :confused2: Things got worse after the birth, I was in bed most of the time and lost so much weight. When the D went up to 30x day and my fever hit 39 the GP sent me to the ER. I was also getting small amounts of blood in my stool too. They sent me back home after checking for sepsis.

I did have a follow-up at the hospital, and the doctor suspected colitis, so I had a colonoscopy: moderate colitis (ulcers, redness, swelling) looks like Crohns.

But the GI at the hospital said I did not look like a Crohns/IBD patient!!!! :ybatty: so he sent me back home. No medicines, nothing, apart from an appointment with a psychiatrist. The other doctor shrugged his shoulders and said there was nothing he could do, even though he did not agree.

At that point I had a lead (Crohns) so that is when I found this forum. I had to help myself. For a year I played with diet and did get slightly better. But then I arranged to see the doctor who did the colonoscopy - even though I was not supposed to see him - and he said the results were not normal and that I should try mesalazine/5-ASA. They did help very slowly - it took about 1.5 years to start feeling normal-ish again.

I got to see the same doctor at a different hospital. Every time I went to see him he would make a diagnosis based on how I was at the time. So some days there was nothing wrong, other days I had IBS, other days I had IBD. Very frustrating he did not look at my records. A second colonoscopy this year also showed (mild) inflammation but he disregarded it and said he sees something similar if someone drinks 18 cups of coffee a day. I don't by the way, no coffee, never.

But finally I have found a doctor who listened to the whole story, set up a pillcam and MRI to get all angles covered.

She thinks I have IBD (Crohns) based on my medical history, but she does not want to give a definite diagnosis. The MRI showed a small amount of inflammation near the rectum. I also have a strange something there that needs to be removed by surgery (she has never seen a lump like that before).

So now I am taking 5-ASA oral and suppositories and I am beginning to feel quite good - bad days are maybe 2 or 3 days a month. I do have to keep to a strict diet - the doc told me that was very important.

So I am being treated for IBD even though I don't have an official diagnosis. It has it's advantages to be undiagnosed: I don't have to claim it on any paperwork!

Wow that was a long story.
I will see you in this forum.


Super Moderator
My goodness, you have really been through it with bad doctors! I knew some of your story but not the whole thing, thank you for posting it. I'm very glad to hear that you finally have a good doctor now! Welcome to the undiagnosed club, I hope you can get some definitive answers out of the pillcam and MRI and don't have to be undiagnosed for much longer. And congrats on being promoted to forum monitor! :) I know you'll do great!

I'm undiagnosed myself and am also on oral 5-ASA (Lialda), and I also take suppositories for my rectal issues, although mine are steroid suppositories and not 5-ASA. (I have had recurrent internal hemorrhoids this year which bleed a ton, hence the steroid suppositories.) My doctors fortunately are good, both my GI and GP think it's IBD, we're just not sure which one as it hasn't shown itself definitively on any tests yet. I've been ill for 6 years now and I've learned that I just have to be patient. I have an aunt whose story sounds similar to yours - she was ill for something like 30 years as well before she finally got a diagnosis of Crohn's a few years ago. It's just ridiculous to me that people can be in diagnostic limbo for that many years! I'm glad that you haven't given up, though, and I'm glad to hear that you're having mostly good days lately.
Oh wow! Many ((((hugs))))!

I was told I also don't "look" like a crohns patient. My inflammation levels don't even show up in my blood, but my CT scan says different. I hope you can get answers soon, really sucks not knowing what's going on :(
I am so sorry you are going through this. I went through the yes you do, no its all in your head, yes you do, nope nothings wrong with you at all. Finally again, I got sick enough and was given a yes. My lab work, colonoscopies are always negative. Always found on small bowel series and most recently- CT scan.

All my Drs though have said all your results can be negative or normal and you can still have CD. Go figure.

You are your own best advocate- don't think your a pain in the a$$, fight for the care you
know you need!

I hope you feel better soon!

Heej Butter,

I see you come from the Netherlands, me too! Which hospital do you go to? If I hear your story I think it would maybe be good for you to go to an academic hospital ( I go to the AMC, amsterdam)

Have you ever had a calprotectine test?

Hope you will find something soon!

xx Maud