newly diagnosed

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pattim
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/28/2008 8:21 PM (GMT -7)   
I recently underwent a voluntary screening colonscopy due to family history and was diagnosed with Crohns. What a shock. Other than on and off abdominal pain,,I have no symptoms. No diarrhea, and especially no weightloss.. I have actually gained about 7 lbs in the last 6 months. AAnd for no apparent reason. So, GI doc wants to put me on Entocort and I am thinking if I dont actually have any symptoms, should I really subject myself to this medication? He would also like to do a barium test of the small bowel to determine the extent of the disease which as far as he could tell from the colonoscopy, was in the ileum. Colon was clear. I do however, have some arthritic symptoms as well as I have sufftered from psoraisis on my face as well as a persistent painful red rash.
Any advice would be greatly appreciated!!

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 6/28/2008 8:56 PM (GMT -7)   
I also have Crohn's in the terminal ileum, with intermittent abdominal pain and occasional fevers--no diarreah. I was told that it is not unusual to have no change in bowel habits if the inflammation is only in the terminal ileum; however, if the area is narrow you are at risk for an obstruction or perforation, which means hospitalization and possibly emergency surgery. The barium test will help you determine whether the ileum is significantly narrowed.
 
I spent about six months trying dietary control but was unable to get back to feeling 100% normal unless I stayed on an exclusive liquid diet. Then the doc tried (successfully) to convince me that Entocort may be my ticket to feeling well and "possibly" avoiding obstruction/surgery a little while longer. So I just started Entocort myself a few days ago. Entocort has fewer risks/side-effects compared to other IBD treatments. So far the only issue I have noticed is some dizziness, crossing my fingers that's the worst of it.
 
Your arthritic symptoms and rash may also be helped by getting the Crohn's under control.  If obstruction is not an issue, maybe you could consider trying a dietary approach first ( if you are willing to limit your diet). There are several options--going on exclusive enteral nutrition, trying something like the Maker's Diet or Specific Carbohydrate diet, or even just eliminating gluten, which helps some people.


July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Entocort, Enteral Nutrition, Omega-3 (Flax Oil and Fish Oil), VSL#3, Vitamin E


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 6/28/2008 9:09 PM (GMT -7)   
Pattim,

Sorry to hear about your diagnosis. One positive way to look at it is at least they know, and a little bit of knowledge can go a long way. Even without a lot of symptoms, the disease can still be doing damage. as Illini said, you are at the risk for obstructions and that can lead to emergency surgery.

I also have Crohn's in my terminal ileum, about 2 feet worth that we know for sure. I get occasional blockage symptoms, and usually end up in the hospital.

Arthritis and Psoriasis are similar diseases to Crohn's. The involvement of the body's immune system is common in all these disease. In fact, some of the medications used for any of these disease can improve the others. I'm on Remicade, and it is specifically uses for Crohns, Arthritis and Psoriasis, so getting treatment now might improve things all around. Either way, getting things in check now can prevent serious issues down the road.

While a lot of us gripe about the medications and their side affects, truth be told the benefits outweigh the risks. Entecort is a pretty good drug, it doesn't have some of the bad side affects or risks, so it might be worth a try.

Also, don't forget that it never hurts to get a second opinion. With something like this, it would probably be a good idea. I got one after a big flare, and I'm glad I did, even though it just confirmed what my GI was already doing was the right path. Sometimes that little extra bit of reassurance can be a big help.
Matthew McKenna,

"I'm just along for the ride."


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/28/2008 9:12 PM (GMT -7)   
My advice is see a rhuematologist. As the arthritis, skin issues and GI are all autoimmune related I would want a rhuemy in charge of my health care.
Sj

mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 6/29/2008 12:33 AM (GMT -7)   
Good point. I see a rhuematologist, and GI, a primary care physician and whoever else I need. They all work together very well.
Matthew McKenna,

"I'm just along for the ride."


pattim
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/29/2008 4:32 AM (GMT -7)   
thank you for all the information. If I do take Entocort, is it something I will take permanently?

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 6/29/2008 6:36 AM (GMT -7)   
Hi Pattim,

I suggest you take the meds. They can help prevent damage that certainly could cause you problems. If you can prevent the damage now, maybe your disease won't progress. And yes, you will need to take meds long-term. This is a chronic disease -- you can't just take a round of meds and have it go away forever. I suggest you read as much as you can about Crohn's. www.ccfa.org and the information/references on this forum are good places to start.

Take care of yourself!

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 6/29/2008 6:39 AM (GMT -7)   
Hi Pattim,

I suggest you take the meds. They can help prevent damage that certainly could cause you problems. If you can prevent the damage now, maybe your disease won't progress. And yes, you will need to take meds long-term. This is a chronic disease -- you can't just take a round of meds and have it go away forever. I suggest you read as much as you can about Crohn's. www.ccfa.org and the Crohn's Disease Resources at the top of this forum are good places to start.

Take care of yourself!
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