New here, not yet diagnosed

[vexom]

Hello. First, I'm glad I found this place to learn more about Crohn's, which I may have but have not yet been diagnosed with. A place to read others stories and share my own will be very useful.

My story: I'm 29 and have had progressively worsening diarrhea for a while now, to the point that it has been years since I remember my last fully solid bm, and I often wake up between 1-2 times a week in the middle of the night with diarrhea. I have recently discovered that this is extremely intensified when I eat spicy food, and is often followed by burning. In addition, I have frequent abdominal pain, feeling like I have to go when I don't, and overall lack of energy, significantly less than a few years back. I spend a crazy amount of time in the bathroom, and it is impacting every aspect of my life. I have not had significant wait loss but I do yo-yo significantly in weight (15 pounds up and down with little explanation) and I have had no major rectal bleeding other than a few occasions where I wipe a little pink. After years of dealing with it, it finally got bad enough and my wife pushed me hard enough to get checked out.

My doctor referred me to a specialist and the specialist did not suspect IBS largely do to it waking me in my sleep, she said that is not normal for IBS. Unfortunately, the many tests I have had (including a colonoscopy, fecal studies, etc) have not shown any abnormalities (other than a benign polyp that was removed) to indicated an IBD. That is until my most recent bloodwork where they did an Inflam Bowel Disease Panel which showed slightly elevated levels of IgA. Here are the numbers, which I am still having a hard time understanding, but the doctor says this is not by itself enough to diagnose me with an IBD.

ANCA, Atypical <1:20
S cerevisiaeIgA 26.3
S cerevisiaeIgG 16.2

The next step is a capsule​ ​endoscopy, I guess to see if they can detect anything visually that they could not find in a colonoscopy. Unfortunately, it takes 14 days to get approved by insurance and then I can schedule it. So, it looks like I'm in for a long wait. Despite my hesitation in going initially, at this point I just want to know what I have so I can get on with my life.

I would be interested in hearing from anybody with similar stories or any suggestions for what I can do while I wait or to speed up getting an official diagnosis.

Thanks!

 

[StarGirrrrl]

It may be the disease now is progressing perhaps and starting to show up on tests. Whereas before it may have been mild and undetectable.

I'd say the IgA might be an indicator of something wrong, but nowhere near enough evidence right now to diagnose IBD. It might end up being part of the puzzle though so don't be discouraged.

It can be a tricky disease to find and many GI's are reluctant to diagnose (for some unknown reason) even with a ton of evidence!

In the meantime don't be shy about phoning to chase insurance approvals or test appointments, see if there is a cancellation list you can go on etc.

How long ago was your colonoscopy? A repeat of that along with other tests you've had before may be an idea also.

 

[buttER]

Hi there
I go with StarGirrrl, these things can be a nightmare to be diagnosed. Even WHEN the evidence seems to be there some doctors are reluctant to treat.

My blood tests have always been normal, and I had 2 normal colonoscopies before one showed inflammation. I had been ill for more than 30 years! I would have periods of 6 months to a year where I would feel really ill and then I would feel a bit better for a while, only for it to start again. The last flare was the worst, it's a shame it had to get so bad before inflammation was found.

It's great if you can get the pill cam, it makes sense to get everything checked out. My experience has been that doctors are happy just to do the colonoscopy and ignore the rest.

My advice to you would be to try and work out what is making you feel worse - you already mentioned spicy food. In my case it was spicy, and gluten, and since then also dairy, and sugar. Plus high fibre. And different kinds of vegetables are also not good. It sounds so extreme but I prefer to avoid those things than to spend most of my time in the toilet and I hate that feeling.

I wish you luck.