Confusion / Potential Misdiagnosis

[Connor]

I'd just like some input from the CD community here because after years of dealing with this, I am still confused by my diagnosis.

In 2013 I suddenly stopped being able to eat gluten, wheat, dairy and a host of other things. I'm guessing this was the beginning of leaky gut. It happened after a food poisoning incident. Then the watery diarrhea started that didn't go away for almost 6 months, which included rectal bleeding, likely from fissures.

In 2015 I finally got my first colonoscopy. The report said that there were patches of inflammation at various parts in my colon, and there was cecum involvement. At the time the terminal ileum showed that it was in the clear.

A few weeks later I had my first ever flare, it was life threatening and severe. I had thrombosed hemorrhoids and eventually a rectal prolapse. Still, I managed to keep my bowel, mostly out of stubbornness. Around the same time the colonoscopy biopsy report came back and they decided, based on the histology, that it was UC. So that was my dx. Before the histology report came in, the GI who did the scope wrote that he believed I had patchy Crohn's-colitis.

It's now 2017 and I've had two more major flares since then. They happen cyclically, for 3-4 months every year, then they mysteriously stop and I return to health. My bowel heals (mostly, aside from scarring), and life returns to normal. Then the cycle repeats again, at some point.

My flares are always in 3 distinct areas. The last 12 inches of descending colon, a piece of the transverse colon, and a piece of the cecum. This year, I could swear there was inflammation further up, but I'm not sure. I'm scheduled for a colonoscopy again in 2018 to re-assess.

This year, I had a stricture that made it hell to pass stool. This is atypical of UC, as is the patchy presentation, as are the thrombosed hemorrhoids and rectal prolapse in the first year. My course of therapy, including biologics, has all focused on UC, but nothing has actually worked.

I've tried discussing this with various doctors but they won't listen. In the Canadian medical system, it's really hard to get re-diagnosed.

My concern is that maybe my treatment plan would be different if I actually had Crohn's. Maybe instead of a colectomy, they could remove those inflamed patches and I could be OK. I am very concerned that if I just let them proceed with colectomy, I could find out down the road that I actually have Crohn's instead. What a nightmare that would be.

Can anyone shed light on this? I know nobody can give me a real diagnosis here. I'm just asking for some wisdom sharing and personal experience. I'm just not sure what to do going forward. Right now I'm doing AMAT as I was diagnosed with MAP a couple of months ago, but I still need to continue my investigation in the meantime.

Thank you!!

 

[Scipio]

None of us can do a diagnosis over the internet even if we were doctors (which I am not), But I do tend agree with you that this might be Crohn's instead of UC, primarily based on its patchy behavior. UC typically starts at the rectum and progresses upstream in a continuous fashion. Crohn's can start anywhere and spread in any direction and is very often patchy.

Can you get a second opinion, preferably from a gastro that specializes in IBD? There are some excellent IBD docs at Mt. Sinai in Toronto.

 

[ronroush7]

I agree about a second diagnosis.

 

[Jabee]

I agree as well. I also think it would be good to get your small intestine imaged if you could. An endoscopy would see down to the end of the duodenum. A barium swallow with small bowel follow through can see if there are and strictures in your entire small intestine. An MRE or CTE would also show some of what might be happening in your jejunum and ileum. More imaging might lead to a re-diagnosis. The presence of a stricture as well as the patchy inflammation do sound like crohn’s.

 

[Scipio]

Capsule camera endoscopy is another good way to get a look at the small bowel. That's how my Crohn's was finally diagnosed.

 

[Layla]

As someone who started with an UC diagnosis (Pan colitis) which turned out to be CD around 20 years later I concur with the others. I also declined to have my colon removed all those years ago and and very happy I did as the disease has moved to the TI and further up causing strictures ec. My colon currently has no sign of disease:ybatty:

With strictures a pill cam may not be the way to go as they can get stuck, for me an MRE clearly showed thickening in the small bowel.

Hope you manage to get a second opinion!

 

[Guerrero]

Mre could help understand if it's crohn's or not.

Also dont worry you got the bad medications they are almost all the same between crohn's and UC

 

[Heffalumpen]

I agree with all the above as well. Sounds very much like CD. I know what you mean about the health system being difficult to convince once you have a diagnosis. The Norwegian and Canadian systems are very similar in function. I have not had any issues so far in terms of my CD. But for other issues I have ended up suffering for years due to doctors making up their minds and not listening to reason after that. What I have decided is to use private clinics for second opinions when I am in doubt. They cost more, but they will listen to you, because that is what you pay them for.

I recommend the MRE. I already know the state of my colon, and my doctor said the MRE is the best way to check everything above the terminal ileum.

I feel for your struggle, my worst fear is also unnecessary surgery. I hope you get the help you need soon.