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.
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.
I know you'll do great!
