Is Crohn's always a progressive disease? Your experience? Had Prometheus test for Severity?

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champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 2/9/2010 2:39 PM (GMT -7)   

Hey all:

 

So I have not had all the horrible symptoms you have had - fistulas, strictures, resections, surgeries, etc.  With my recent flare, I've had other "extra intestinal manifestations" but they are mild in comparison - nose ulcers, hemorrhoids, joint pain, etc.  I'm going to ask my GI doc if I'm due for a colonoscopy to see if I have any intestinal scaring, etc as I've not had any indication of this before.

 

What got me thinking is everything I read about Crohn's seems to say it is progressive disease.  Do you agree? I guess that would fit with the inflammation process.    All my CRP, white blood cell count and sed rates are ALWAYS normal, even during an acute flare when I'm in severe pain and have severe symptoms.  It is weird and my GI doc is perplexed, said he has never seen it.

 

Also, I was on the Prometheus website and they have a new specific test to predict I guess how severe your CD might be ... has anyone had this test done?  Was it somewhat accurate?  Do we have any influence to turn the clock of inflammation back?

 

I've just ordered some new products which I've had luck with in the past, hoping to calm my gut down as they deal with inflammation on the cellular level ... I feel like I'm racing against time as I'm tapering off my prednisone and my bowel movements have gone from one a day to about six ... no D yet, but I'm hoping to avoid it at all costs ....

 

Anyway, would appreciate any thoughts on this random stream of thoughts above.... thanks!


44-single mom diagnosed with Crohn's 2004 via pill camera    6MP kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - now on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosed hemorrhoids (external as well as internal).
 
Fibromyaglia; migraines; herniated disks C5,6 and arthritis in neck; asthma; scolisis in back/arthritis.
 
 
 


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 2/9/2010 2:51 PM (GMT -7)   
I would not describe Crohns as a progressive disease in the sense that, say, cancer or ALS is. Instead it seems that in many patients the complications progress, from persistent damage from inflammation. However, there is a subset of Crohns patients who are basically level throughout their lives, with few or no major complications. I fit that category -- Dr. Hauauer of U of Chicago, one of the leading Crohns researchers, puts that population of "level" patients at about 20% of those with Crohns. Probably the best analogy to me is diabetes . . . depending on how well patients control their blood sugar, it can be a seriously progressive disease with all manner of complications, or one that is basically steady throughout life, with a normal life span.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 2/9/2010 4:25 PM (GMT -7)   
I think that it probably depends a lot on if you do anything to prevent it from progressing. Do you take meds? Are you careful with your diet? Do you take helpful supplements? Do you get enough sleep? Do you control stress levels? Do you abstain from alcohol? etc. etc.

My crohn's used to be severe, including fistulas, fissures, massive inflammation, acid reflux, etc. All those things healed after I started eating the Specific Carbohydrate Diet. I also take supplements (like fish oil and vitamin D), and generally just work hard at not stressing my body unnecessarily. As a result, my main complaint is really only fatigue (which might be resolved soon, since it appears my thyroid is faulty). This is a far cry from the bad shape I was in 2 years ago.
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 2/9/2010 10:24 PM (GMT -7)   
Chronic, yes; progressive, not necessarily. This is a disease that can be controlled and contained, if you're lucky--and if you manage it carefully. It doesn't go away, but it doesn't necessarily get worse over time.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/9/2010 11:41 PM (GMT -7)   
According to Dr.Kevin Rioux from the university of Alberta, in the past few yrs, advanced techniques have allowed scientists to discover at least 9 different gene clusters that contribute to the development of IBD and define the severity and behavior of the disease over time. He mentions that some of these genes encode factors involved in recognition and defense against bacteria. Mutations in immune response genes can adversely affect how the immune system reacts to harmless bacteria and this probably contribures to the development of IBD.

We also tend to have bacterial over-growth issues compared to those without an IBD so taking a good probiotic daily and indefinitely definitely has it's purpose to help keep our gut flora balanced.
 
For me, the majority of my 18 almost 19 yrs of having CD it's been more on the severe side but has also been on the moderate side, it's never really been mild in my opinion.


:)


bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/10/2010 7:14 AM (GMT -7)   
I have had the disease for almost 35 years and I don't consider it as a progressive disease. I agree with the above that state if you watch your diet, take your meds, and add in the supplements most Crohnies need I think you will have a better go of it. I had an almost 20 year remission that I think would have lasted longer if I had taken better care of myself and remembered I had a chronic disease. I have now had 2 resections because of not taking care of myself properly during that 20 years, but I have definetly learned the hard way to take better care myself now and am back in remission. But over the past 35 years my disease has stayed pretty much what is considered a mild to moderate case. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/10/2010 9:22 AM (GMT -7)   
What I have learned from being on here is that crohns is very individual disease and no one can tell how their disease is really going to end up.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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