Could it be Crohn's?

Hi everyone,

I am now 20 and I have suffering with bowel problems for almost 18 years, I had an ileostomy when I was a baby and now I don't know what to do, my symptoms would be constipation predominant with diarrhoea depending on what I eat, spicy food, milk and coffee are a no no, as they will either make me constipated or I'll end up with diarrhoea, I know everyone will think IBS, but the only red flag symptom of Crohn's that I have is weight loss, I was 9 stone 4 oz and now I am 8 stone 12 oz, as far as I know, there's no way I would lose 4 pounds in that short amount of time, I do get mouth ulcers every month, so I'm not sure, I have a doctor's appointment booked so that should help, I have stomach pain which has lasted for near 3 days now and has not gone and I didn't really eat yesterday at college as my stomach was too painful, I was near crying from the pain it was that bad .

Why did you have an ileostomy as a baby? Have you had a colonoscopy or any imaging done?

nogutsnoglory said:

Why did you have an ileostomy as a baby? Have you had a colonoscopy or any imaging done?

Click to expand...

I had the ileostomy reversed though and had parts of my bowel removed, my sister had necrotising enterocolitis, but my mum's not sure what I had, I have had an X Ray once of my bowels but there was nothing that stuck out, just that I had impacted faeces.

Can you get a copy of your medical records, or ask your doctor to look at your records to find out what happened when you were a baby? You wouldn't have had an ileostomy unless something was very wrong.

There's no way we can tell you if you have Crohn's from the information you've posted here. There are so many causes of digestive problems, and yours don't really provide a reason to suspect Crohn's any more then many other conditions.
Is there a particular reason you think you may have Crohn's?

You'll need to speak to your doctor and probably have some tests done.

Have your symptoms got a lot worse lately, or is there any other reason you're seeking a diagnosis now after having symptoms do long? How long have you been losing weight for?

Have doctors or others dismissed you as having IBS in the past? An awful lot of us have been through that. It's awful when you know something's wrong but get dismissed with a stress-related diagnosis like IBS. You may have to prepare yourself for being treated that way. If that does happen, there are many of us here who understand and will support you as much as possible. Remember you can always seek a second opinion if you don't get on well with the first doctor you see.

When you see your doctor, I would emphasise your weight loss, as you're correct that that means you cannot meet the criteria for an IBS diagnosis.

Also talk with the doctor about the ileostomy you had. Even though it was so long ago, you must have had something very wrong with your digestive system, which gives your doctor another reason to take you seriously. Even if whatever was wrong with you entirely resolved years ago, just the fact that you had a surgery like that (and another surgery to reverse it) means it's possible you could have adhesions (scar tissue from the surgeries affecting your digestive system). Your current symptoms may very well not be from that, but the fact that that's a possibility should prompt your doctor to start considering things besides IBS. If you had a significant amount of bowel removed, that might be something your doctor will want to consider also.

Try not to worry. A lot of people post here when they don't have a diagnosis. If it helps you, keep posting here, whatever you end up being diagnosed with.

Obviously something was very wrong to necessitate am ileostomy and give your life of troubles gi wise I think it's with fully investigating.