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comedybob
Regular Member


Date Joined Jan 2010
Total Posts : 244
   Posted 8/22/2017 12:02 PM (GMT -7)   
I have been a member here for a few years, now. I know we all have theories or ideas of the causes(s) of crohns. My position, and I've voiced this before, is that it is more than one disease. In the 30's, when Crohn laid claim to it, Crohns' Disease was basically described as inflammation of the digestive tract, anywhere from the mouth to the anus. IMHO, this mindset is partially responsible for delaying advancements in understanding, and treatment of this DD. In my sons case, I remember, just prior to his getting really sick, him having absolutely rancid gas. I know the smell of an anaerobic bacteria. It didn't occur to me, until much later, that the smell was a new bacteria setting up house in his intestinal tract. I mentioned the smell during his admittance to hospital. According to his GI, all Crohns' was autoimmune, the information regarding his gas was irrelevant. But, was it? Has anyone bothered to look back and see if this is a common occurrence prior to diagnosis? I wonder how many other symptoms are overlooked or ignored, not noted, and not being used to show patterns in patients? And that is my rant for the season. Thank you for reading

Post Edited (comedybob) : 8/22/2017 1:06:34 PM (GMT-6)


NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 8/22/2017 12:44 PM (GMT -7)   
It was never a problem for me before diagnosis or even after it. It's certainly likely that your boy's microbiome was altered, but what's not possible to prove is what came first: the Crohn's or the altered microbiome. Don't forget, there is a genetic basis to Crohn's. It may be triggered by an infection in some people, but in people without the genetic susceptibility no amount of MAP, etc. in the intestines is gonna trigger Crohn's.
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)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15326
   Posted 8/22/2017 1:16 PM (GMT -7)   
I did not have the issue you noticed with your son either, not before or after the dx. I stopped years ago trying to figure out the why's or how's it simply stressed me out too much. There are various AI's that run in my family so I finally let it go at that.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 999
   Posted 8/22/2017 2:24 PM (GMT -7)   
I get what you mentioned during some flares but definitely not all so I don't think its an accurate indicator of cause. It's always worth while to document symptoms. I like to remain neutral and not take sides in the debate on the cause. There is still so much to learn.

comedybob
Regular Member


Date Joined Jan 2010
Total Posts : 244
   Posted 8/23/2017 5:30 AM (GMT -7)   
I just think that we should lose the catch all "Crohn's Disease". If doctors had to try to determine what was causing the inflammation instead of saying " Oh, you have Crohn's Disease, here's your immuran and Pred." maybe they'd be more invested, that's all.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 8/23/2017 5:45 AM (GMT -7)   
IBS is a good example of a catch-all diagnosis; Crohn's isn't. It is a specific type of intestinal inflammation, with unique characteristics at the macroscopic and microscopic level. The causes/triggers may be a mystery, but the actual presentation is fairly clear-cut.

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 999
   Posted 8/23/2017 8:01 AM (GMT -7)   
I agree with, NCOT. Also most infections are usually ruled out during the diagnosis period through stool cultures and looking at blood work.

I can say I used to feel the same way especially early in my diagnosis but I realized that that is asking way way too much from any doctor not actively involved in research. I am pretty confident most of the GIs I've come across would love to be able to tell me why I have Crohns. First, there just aren't enough answers from research yet for them to go on. It would be irresponsible in many cases to start guessing, in my opinion. Given the complexity of crohns it would be very difficult for them to come to any reasonable conclusion especially within the general time limits that appointments are constrained to. That is really where researchers are and there are tons of them working on these questions of reasons for inflammation and hopefully when there are more pieces of the puzzle put together, our Doctors will be able to come to better conclusions.
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