Were any of you with a Crohn's diagnosis originally diagnosed with UC?

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MarjieKay
Veteran Member


Date Joined Jun 2017
Total Posts : 611
   Posted 8/16/2017 7:25 AM (GMT -7)   
I am just curious and trying to learn what I can.

I was diagnosed with UC officially in 2016 (but first flare was actually 2008) and I am trying to learn anything I can about it. My aunt has Crohn's, but she was never diagnosed with UC at all.

I am also trying to learn about the MAP virus. One thing I read is that those diagnosed with UC have it morph into Crohn's often at about the 10 year mark. I am approaching 10 years myself and have become curious about this. I do have a friend who had this scenario play out......so I wonder how often it happens?

Thanks, MK
F, 51
2008 acute proctitis, 2016 chronic UC
*Currently in remission verified by scope*
Meds: mesalamine (both ends)
Anti-inflammatory diet (IBD-AID from U of Mass)

Extras: Ginger tea, Advanced gut health probiotics, Primadophilis Reuteri, Digestive enzymes, Vitamins D, C & K, fish oil, cal/mag, Benefiber, raw potato starch, homemade kefir (water and milk both).

Post Edited (MarjieKay) : 8/16/2017 10:08:26 AM (GMT-6)


aimz
Regular Member


Date Joined Feb 2013
Total Posts : 152
   Posted 8/16/2017 7:45 AM (GMT -7)   
Hi MarjieKay. I was diagnosed initially with UC, and took oral/rectal meds and numerous courses of steroids for three years, when I flared massively (no oral meds worked) and was hospitalised. At this point I was diagnosed with Crohn's, and have been on remicade since (the success of which is dwindling..).

I had various tests during my initial diagnosis to rule out Crohn's, leading to the UC diagnosis. Apparently now my small intestine is affected and the inflammation in my large intestine is too deep to be UC, hence the new dx!

I have read a little about the MAP virus, but understand that it is not an indicator or cause of Crohn's, though I'm sure that could change in time, as most things do!
32y/o female
May 2016 DX changed to Crohn's Disease

Symptoms 11 yrs, Dx Jan 2014 UC 15cm, extended to 21cm Feb 2016, 40cm April 2016

Four tapered course of Prednisolone (Sept 14, Aug 15, Nov 15, April 16).
Currently using:

Infliximab Infusions 8-weekly

Hospitalised 1wk April 16
Acidophilus 20billion - 1 capsule daily

Fistulectomy Jan13

MarjieKay
Veteran Member


Date Joined Jun 2017
Total Posts : 611
   Posted 8/16/2017 9:08 AM (GMT -7)   
Thanks for responding aimz, so from original UC dx to the new one 3 years elapsed?

My doctor also ran a Promethius test recently to differentiate from crohn's (due to familial history) and it came back pointing to UC. Was that also a test you had run?

She also intended to do a small bowel biopsy during my scope last month, but couldn't do it for some reason. I see her for the report tomorrow and need to find out why.

I used to believe MAP was behind the diseases, but have since changed my mind. I found out that 46% of healthy, non-IBD controls test positive for it.....so that kind of shoots that theory to bits for me.

Even if MAP was behind our getting sick, it seems there is immune system involvement that allows it to happen. But like you said, who knows what science will turn up next?
F, 51
2008 acute proctitis, 2016 chronic UC
*Currently in remission verified by scope*
Meds: mesalamine (both ends)
Anti-inflammatory diet (IBD-AID from U of Mass)

Extras: Ginger tea, Advanced gut health probiotics, Primadophilis Reuteri, Digestive enzymes, Vitamins D, C & K, fish oil, cal/mag, Benefiber, raw potato starch, homemade kefir (water and milk both).

MarjieKay
Veteran Member


Date Joined Jun 2017
Total Posts : 611
   Posted 8/16/2017 9:11 AM (GMT -7)   
OOPS, that was 47% of healthy controls.....also, here is the whole study. It was interesting to me that only 17% of the IBD patients tested MAP positive.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0002537#s4

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 868
   Posted 8/16/2017 9:37 AM (GMT -7)   
I was diagnosed with a parasite, then "it's all in your head", then IBS, UC, PG now CD. I was 9 years into my UC diagnosis when it became fistuizing CD. Sucks more than I ever imagined.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3296
   Posted 8/16/2017 11:20 AM (GMT -7)   
I was originally diagnosed with UC and put on mesalamine. Two years later, and 10 months of prednisone, I suddenly got an abscess that turned into a fistula and my diagnosis was switched to Crohn's. It's fairly common, actually.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1633
   Posted 8/16/2017 5:28 PM (GMT -7)   
MAP is bacteria, not a virus.

UC doesn't change/morph into Crohn's. If a diagnosis changes from UC to Crohn's, it's because the initial diagnosis of UC was incorrect.

MarjieKay
Veteran Member


Date Joined Jun 2017
Total Posts : 611
   Posted 8/16/2017 6:54 PM (GMT -7)   
Thanks you for sharing your stories U B and scifigal.

@beave, that's what I thought. I've read a few things lately that called that into question. I guess the tendency to change and spread would account for the switch of dx. Omgosh I've no idea why I said virus as I know it's a bacteria....
F, 51
2008 acute proctitis, 2016 chronic UC
*Currently in remission verified by scope*
Meds: mesalamine (both ends)
Anti-inflammatory diet (IBD-AID from U of Mass)

Extras: Ginger tea, Advanced gut health probiotics, Primadophilis Reuteri, Digestive enzymes, Vitamins D, C & K, fish oil, cal/mag, Benefiber, raw potato starch, homemade kefir (water and milk both).

aimz
Regular Member


Date Joined Feb 2013
Total Posts : 152
   Posted 8/17/2017 12:32 AM (GMT -7)   
I think my GI always suspected Crohn's, so kept looking for it, as in 2010 I had a perianal abscsess, and in 2012 had a fistulectomy to address the resulting fistula. At the time the surgeon said there was no sign at all of IBD (I have since moved areas, and was diagnosed with UC within two months of moving - my faith in my previous care givers has all but disappeared!)

I'm not sure which tests I had to convince the GI to change the dx, but I'm glad I had them - the meds for UC weren't touching me! They have also since found another fistula, that we're just monitoring for now.. Oh the joys!

I've no family history of IBD, or indeed any other auto immune conditions. I had seriously considered MAP, but like you, read several reports that stated similar figures in non-IBD patients, and turned my back on that as a theory. I guess it's just rotten luck for some of us...
32y/o female
May 2016 DX changed to Crohn's Disease

Symptoms 11 yrs, Dx Jan 2014 UC 15cm, extended to 21cm Feb 2016, 40cm April 2016

Four tapered course of Prednisolone (Sept 14, Aug 15, Nov 15, April 16).
Currently using:

Infliximab Infusions 8-weekly

Hospitalised 1wk April 16
Acidophilus 20billion - 1 capsule daily

Fistulectomy Jan13

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10020
   Posted 8/17/2017 5:16 AM (GMT -7)   
beave said...
UC doesn't change/morph into Crohn's. If a diagnosis changes from UC to Crohn's, it's because the initial diagnosis of UC was incorrect.


Sometimes I wonder about this. I don't think anybody really knows for certain whether Crohn's is a distinct entity completely separate from UC, or whether it's on a spectrum, with UC at one end, Crohn's colitis in the middle, and small bowel Crohn's at the other end.

Even 40 years ago they were wondering about it: Overlap in the spectrum of non-specific IBD

And still are today: /www.sciencedaily.com/releases/2015/10/151018223039.htm

To (sort of) answer the original question, I think my colon was probably a 'grey' area, IBD-wise. My surgeon clearly thought so. On the other hand, I had more 'classic' Crohn's of the terminal ileum, which permanently nailed my diagnosis down as Crohn's. I wish I could uncover my medical notes from the very beginning, when I was first diagnosed: I would love to know what my first ever colonoscopy showed, but that was 17 years ago and I doubt the record of the result even exists anymore.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1633
   Posted 8/17/2017 2:16 PM (GMT -7)   
You're probably right that there is a spectrum, and that's it's a little more subtle than what I said.

Sometimes that grey area disease stays in the gray area. But to me, when it clearly turns into Crohn's, it was Crohn's all along; it just hadn't made itself clear yet.

At last year's conference they presented a case where a person had really conflicting presentation, with features clearly indicating Crohn's colitis (including fistula, skip disease, and narrowing of the colon), but biopsies that were reviewed by multiple experts kept coming back as UC. So yea, it's not always one or the other.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10020
   Posted 8/17/2017 2:50 PM (GMT -7)   
beave said...
But to me, when it clearly turns into Crohn's, it was Crohn's all along; it just hadn't made itself clear yet.


I dunno anymore. If it looked like UC, acted like UC, and biopsies showed it was UC, then how can the original diagnosis have been wrong? (If there was doubt over the initial diagnosis and biopsies were indeterminate, that's another story of course.)
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)
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