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Undiagnosed - need some advice

So I've had some problems with my tummy for the past 6 months or so.

It started of with the occasional loose stool, and a loss of apetite. Didn't lose any weight but I had serious trouble eating when even the tiniest bit stressed. Eating in public was a nightmare. I suspected IBS because my mom and brother had been diagnosed with it.

I soon got better and stopped thinking about it, but one evening I noticed blood in my stool, clear red. Went to a doctor, he suspected IBS as well but made sure to test faecal calprotectin. Test showed 600 and soon I was getting my first colonoscopy. I received the biopsy results in the beginning of August. I had an inflammation in my large bowel and rectum. Because the inflammation was so mild they couldn't give me a diagnosis, but it's either UC or Crohns Colitis, most likely Crohn's because there are 'patches' of inflammation.

My GI has chosen not to put me on any medication because I was such a mild case. He said that it was a standard procedure. I feel like I can live a normal life without it. But I am somewhat scared since I have heard Crohn's disease should not be left untreated. Should I get a new doctor, or see how things develop? I am not too keen to get on Prednisone, but on the other hand I am afraid that going untreated could screw me over in the future.

Currently I don't have that many symptoms, I haven't lost any weight. And my stool is mostly fine. Very rarely get the D, but there is mucus every single time. Blood several times a week (blood levels are fine though) I usually get somewhat bloated and gassy in the evening. The only thing really annoying is the nausea. I get nauseous between breakfast and lunch almost every day. Omeprazol gives me some relief.

I really don't know what to do. I thought the colonoscopy results would clear things up but I feel like I am in the same situation as before. :sign0085:
 
I'm undiagnosed and I am a weird case.

Maybe you should try to refer to another GI. I think you have evidence of Crohn's Disease but I'm no expert. If that's Crohn not treating it at all appears risky to me. Scaring and fibrosis may occur and it may worsens. Crohn's medications have side effects though. That's just some thoughts, I'm new to IBD so that may be crap.

Wish the best for you, hoping you'll have the answers you're looking for. =)
 
Get another doctor. Your body could be doing invisible damage that you are not aware of. Please keep in touch. I am no expert myself
 
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Thanks guys, I will book an appointment with my current GI to let him know about my concerns, if that doesn't work out it looks I will have to swap him out.

I was looking through my patient journal and I am not actually undiagnosed. They've labeled me with "Unclassified Colitis" and "Indeterminate Colitis"
 
Again I'm no expert and I'm new to IBD-world, but well, I believe Indeterminate Colitis is considered IBD, it's a form of chronic colonic / small bowel inflammation which cannot be classified as Crohn's or UC or other forms of IBD. It can evolve or be diagnosed with subsequents flares / exams as Crohn's or UC or it can remain indeterminate colitis.
 
Also new to IBD and just wanted to let you know that in my case colonoscopy and biopsies came back negative, but was found to have Crohns in the beginning to mid ileum. Not very common, but still Crohns. Just mentioning this because many GIs feel that a colonoscopy is the gold standard for diagnosing Crohns and when that doesn´t show anything, many dismiss a Crohns diagnosis. In any case, whatever it is you have, frequent bloody stools seems serious enough to warrant some sort of treatment.
 
Also new to IBD and just wanted to let you know that in my case colonoscopy and biopsies came back negative, but was found to have Crohns in the beginning to mid ileum. Not very common, but still Crohns. Just mentioning this because many GIs feel that a colonoscopy is the gold standard for diagnosing Crohns and when that doesn´t show anything, many dismiss a Crohns diagnosis. In any case, whatever it is you have, frequent bloody stools seems serious enough to warrant some sort of treatment.
Yes.
 
Doc just put me on Pentasa 4g a day. Reasoning behind it was that if the treatment is successful it would be leaning towards UC, otherwise we will be looking at pred, but seeing the side effects i'm hoping Pentasa will be sufficient alone. Hopefully I won't notice any side effects.
 
Hi i was diagnosed with ulcerative colitis over ten years ago i kept getting abscesses and had a fistula put in and now they want to put in a seton don't know what to expect im nervous and after that they want to put a camera or some sort down my throat and do a colonoscopy to see if i have crohns feeling nervous and scared
 
Nbca, when you were diagnosed did you not have a colonoscopy/endoscopy? Its pretty standard practice. Don´t worry about the scopes!
 
Update: I've been taking Pentasa for almost two weeks now, and I am feeling better. Stools are free from mucus and blood, and my apetite is better, but I still have problems with nausea and bloating, sometimes to the point where I need to lay down. Is this normal or could it be something else? I've been reading up online and my symptoms kinda sound like it could be SIBO, do you guys have any experience with it? Anyways, I have a follow up on friday and I'll ask about it then.
 
Hi julia s i had an colonoscopy done and i go next month for both endoscopy /colonoscopy and i just had anal fistula surgery on 10/12
 
Was diagnosed with ulcerative colitis over ten years ago now they wanna see if i have crohns because I have abscesses all the time and fistulas
 
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