suggestion for my next educational forum

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Regular Member

Date Joined Aug 2009
Total Posts : 31
   Posted 9/1/2009 7:42 PM (GMT -7)   

As you all know I have Crohn's with permanent ostomy but if you didn't there it is! I may have no colon but I have a tattoo of a semi-colon!

I work for my doctors and I am in charge of the next patient education event which will be somewhere in the northwest suburbs of Chicago. So here's my question:

If you had to sit through 2 lectures by top doctors that were 20 minutes long followed by a Q & A what topics would you most be interested in?

This is what we have done in the past:

Relationships, intimacy, and fertiliy in IBD (we had a sex therapist and a well known IBD doctor speak about reproduction)

The IBD Survival Education Event for Patients, Families, and Friends: included new treatments, clinical trials, how to make the most out of your doctor's visit.

Thank you for your help! I want people to come out int he dead of winter to this event so your input is really helpful!

I thought something about surgery would be interesting!
Crohn's disease, currently no medications, 2 surgeries, ostomy since 2004

Veteran Member

Date Joined Sep 2005
Total Posts : 517
   Posted 9/1/2009 9:50 PM (GMT -7)   
good question. some of the people here obviously have so much experience they can probably advise some primarys. The amazing thing about questions is that if you can formulate the question thats the first step in figuring out the answer. Anyways I will hafta get back to you. Top doctors huh, right

Regular Member

Date Joined Aug 2009
Total Posts : 31
   Posted 9/1/2009 10:21 PM (GMT -7)   
Yep top doctors....Since I started over the past year they have had: Marla Dubinsky, David Rubin, Russell Cohen. They have also bought in Marci Riess the founder of the IBD Support Foundation ( who is also a licensed therapist and Crohn's patient too.

I am thinking of a surgery topic or nutrition. I think bringing in Tracie Dalessandro the fellow Crohn's patient, registered dietitian, and author of "What to Eat with IBD" would make for an excellent presentation.
Crohn's disease, currently no medications, 2 surgeries, ostomy since 2004

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 9/2/2009 6:31 AM (GMT -7)   

I was going to suggest diet and Crohns. Alot of GI's are telling patients that diet has nothing to do with Crohns, but many here can testify to the fact that there are alot of things we just cannot eat.

Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Jan 2006
Total Posts : 3141
   Posted 9/2/2009 7:33 AM (GMT -7)   
I agree with Nanners. The ed event here on diet and what each vitamin and mineral impacts was sooo helpful. Although diet is different for everyone, an education on differing food options (we had a fantastic dietician) is useful. I also have always wanted someone to spell out what B12, D, folic acid, calcium deficiency symptoms were and how to maintain balance with supplements and more importantly food alternatives.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 9/2/2009 5:23 PM (GMT -7)   
Diet! I just moved and my new GI credits my diet to my remission over my medication.
27 Year old married female.  Graduated law school this year and waiting for results of the bar exam.  Start a new job sometime in September.  Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

Veteran Member

Date Joined Sep 2005
Total Posts : 517
   Posted 9/10/2009 6:02 PM (GMT -7)   
Here is my question for the top doctor:

1. Several opioid peptides are produced from milk and wheat protein digestion. Increased µ-opioid receptor (MOR) expression is seen on T cells that induce the inflammation associated with Crohn’s disease and ulcerative colitis.

Recent work in understanding the different result from digesting different casein has indicated higher disease (not neceassarly crohns) in particular casein variants. Proteins in bovine milk are a common source of bioactive peptides. The peptides are released by the digestion of caseins and whey proteins. In vitro the bioactive peptide beta-casomorphin 7 (BCM-7) is yielded by the successive gastrointestinal proteolytic digestion of bovine beta-casein variants A1 and B, but this was not seen in variant A2. In hydrolysed milk with variant A1 of beta-casein, BCM-7 level is 4-fold higher than in A2 milk.

Since there is increased µ-opioid receptor (MOR) expression, generally for crohns, does this indicate a problem with the mechanism of digestion of protein, particularly, casein in crohns patients, more specifically, can the increase be related to the known differences in casein variants.

2. If so, what should the prescribed medication be? An opoid antagonist such as cyprodime? Or a narcotic such as codeine, or narcotic-like drug such as lomotil?

3. Or is this question irrelevant.. as there is no relationship between protein digestion and inflammation in crohns.
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