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Crohn's or not?!?

Hi everyone :sign0144:

after reading so many of your stories, i thought i'd share mine too....as of date, i'm still undiagnosed. i'm a 22 year old female and i've been ill for 3 years now. i've always struggled a little bit with BMs but the docs always said it was IBS and told me to change my diet and have some probiotics. about 3 years ago, i started feeling extremely tired, experienced intense abdominal pain....mostly in my lower right side, started having severe nausea, vomiting and diarrhea that would alternate with constipation. i had rashes all over my body, my skin turned slightly yellow and so did the whites of my eyes. saw a GI who did a colonoscopy and told me everything was normal and that i probably have Gilbert Syndrome which is a benign condition. i discontinued my weekly visits to him and within 3 weeks, started a liver detox diet, took vitamins....(was vitamin D deficient), drank chlorophyll and what not... and all symptoms disappeared. nothing except for the occasional issues with BMs.

i was fine for 3 months and then i relapsed even though i kept up the healthy liver friendly diet, vitamins and all. I then assumed it was not Gilbert syndrome.
the pain got worse, vomiting and nausea more severe. lost 10 kgs in 2 weeks, could not keep any food down or even water. everytime i ate, if not for nausea and vomiting, i would get severe headaches and feel extremely dizzy, more after eating, diarrhea and constipation came back in full force. My BMs came with loads of mucus and only occasionally some blood . i also had terrible joint pains. went to the ER, they did a couple of blood tests, except for the bilirubin in my blood being elevated, everything else was normal.
went to see another GI specialist who also did a colonoscopy and told me he found some active colitis. blood tests normal, stool tests normal, did a barium xray..again normal, ct scans..normal..., pill cam didn't work as the pill stayed in my stomach for 5 hours and he could not get a good look of my small bowel..however he did not recommend we try again. tried so many tests and all came back normal. However, the vomiting would not abait, the diarrhea and constipation persistent and i could not get out of bed due to extreme fatigue, headaches and dizziness. he gave me some pred which initially made me really sick but helped me with the vomiting. however he discontinued due to the inconclusive results.
and then again, symptoms disappeared except for the BMs and some pain in my abdomen. i was doing well for another couple of months and i'm back to it again.
this week i haven't been to work at all. one afternoon, i felt like i needed to go to the toilet, like i was going to have diarrhea, those type of cramps. i rushed to the toilet and the pain got so intense i felt i was about to faint. no stool came out except some mucous. today is the fifth day i haven't gone :ywow:

I don't know what to do. i'm only 22 and i really want my life back. i currently work full-time but since getting so ill, i get so scared that they will make me redundant due to absenteeism. i haven't even been able to go back to uni and have had to defer again.
my boyfriend is very understanding and supportive but i can see the toll it has on him and i feel horrible causing him so much stress and worry

do you guys think it may be crohn's??? i don't know where else to look, docs are not willing to help me. they seem annoyed at me
 
You said you had active colitis, did you ever discuss that properly with your doctor? ulcerative colitis is an incurable IBD like Crohn's and can be just as serious. Or you could have Crohn's colitis which manifests in a similar way to ulcerative colitis.
 
Hi partyboy690

I did try to discuss this with the specialist but because all my tests came back normal, he told me I must have had some infection at some point which is still healing. I don't quite buy that as this is obviously a recurring problem. Im a little scared about getting another opinion as he is currently the 3rd GI specialist I have gone to and none of them are willing to help me :(
 
Well I was recently diagnosed with Crohn's disease and my blood tests came back perfectly healthy. Did you get him to do a biopsy?
 
Yep, the biopsy revealed the active colitis but now that all the tests didn't really bring conclusive results, he gave up and gave me a referral to some other GI specialist.
Up until now I had no idea you could have CD and still have normal tests results. How were you diagnosed? What helped out for you? Did a change in diet also help?
 
Yeah I had perfectly normal blood tests, white cell count was completely and utterly normal. It threw me off to be honest with you. I was diagnosed by a colonoscopy. They saw the inflammation in my terminal ileum. Really I'm not diagnosed yet, I still have to get the results of the biopsy but the doc said it was Crohn's he just wants to be 100% sure.

What helped me most was stopping smoking, stop eating processed sugars and saturated fats. But I've never been able to pinpoint anything in particular that makes me feel better, dietwise. The only thing that gets me through the day now is smoking cannabis, I wasn't prescribed it or anything but I do smoke it and I can actually function like a normal member of society. My work was really starting to be affected until I started smoking cannabis. I had lost serious amount of weight due to anorexic like eating habits. Now I just get stoned and eat all around me. I'm not gonna recommend it to you personally but for me its the best thing at the moment.

I really hope you get better soon. I'm the same age as you so I know what its like to have something like this so young. If you have active colitis then you have an inflammatory bowel disease of some sort and you should force the issue on your doctor. Colitis isn't just some little thing you can get and it goes away like the common cold. Colitis is inflammation.
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome!

Wow, it's terrible to hear how much you've been suffering, you poor thing :(

*hugs*

Throughout all of this has anyone brought up the possibility of Celiac disease?

At any point has your vitamin B12 level been tested? If so, what was the result?

In the stool tests, have they tested your fecal lactoferrin or fecal calprotectin?

Don't give up! We're here for you.
 
Hi David and thank you :)

The specialist ruled out celiac from the 'normal' colonoscopy
I wasn't tested for vitamin B12 but I did have a test for calprotectin which came back as 0.
However I was taking pred when I had the calprotectin test, I'm not sure if this may have affected the results but the doc didnt want to try it again.
I'm still sick and haven't been to work in 3 weeks. I'm not getting any treatment, no meds, so no progress at this stage. My next appointment is not till October. Don't know what to do to get back on my feet till then.
 

Catherine

Moderator
Where in Melbourne are you? General area? I am the mother of 17 year old girl dx with crohn in January of this year.

We are also from Melbourne and very happy with our GI practice.

Until 6 months prior to dx Sarah only symptom was anemia, that did not response to iron supplements.
 
Thank you David, I will look further into this!
Hi Catherine, I live in the south east suburbs, Hampton park to be exact. Was there a long wait before your daughter was diagnosed?
 

David

Co-Founder
Location
Naples, Florida
A GP could likely do the blood tests. For endoscopic evaluation of the small bowel and biopsy, it would likely need to be a GI.

IF you're going to get it done, you don't want to go gluten free prior to the testing. If I had to wait until October, I'd probably just go on the diet myself to find out. But that's just me and probably isn't the greatest idea ever. I just dislike pain and use myself as a lab rat.
 
Is it possible for celiac sufferers to have their symptoms suddenly disappear even without treatment and then come back even worst than before?
Sorry for so many questions, I seem to have very very similar symptoms to celiac but this occurrence keeps baffling me!
 

Catherine

Moderator
We live in Lysterfield, and use private adult GI in Dandenong. We spent 3 year looking for a cause of anemia. Sarah GI symptoms increased late last year. She lost 12 kg in a 3 month period and was 44kg at dx. We obtained a referral to GI after a trip to emergency on 24th December.

GP can do the blood test for Celiac.

As David said you need to be eat gluten prior to test, the recommend amount in Australia is 4 slices or more of gluten containing bread/or equivalent daily for the 6 weeks prior to testing.
 

Catherine

Moderator
Calprotectin, as there is no medicare rebate on this test make sure you get quotes.

My research shows that Melbourne is dearer than the one start G. I will posted the name when I home from work.
 
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