My wife called me from her office this week and asked if I would be willing to talk with
"a friend of a friend" whose son (26 years old) had just been dx'd with crohns. I said sure and then last night she brought home the phone number of the mother and asked me to call her.
We talked for a long time and I gave my opinions and made it very clear that I was only human, not a doctor, and could be way wrong in my thoughts. She told me that her son had lots of bleeding, painful movements and stomach pain/nausea issues. she said the her son's gastro put him on pred for about six weeks and asacol. they also tried to do a colonoscopy but there was so much inflamation and ulceration that they only got a little way in before stopping.
I suggested the following:
If they only got a little way into the large colon how can the doc be sure it is crohns and not UC? So he should just ask how the dx was arrived at and what it was based on.
Ask about Canasa suppositories (I forgot to suggest anti-b's) to help with the ulcerated areas close to the rectum.
the gastro suggested remicade...i suggested that her son study the issues very closely and then decide. he should also ask the doctor about other drugs such as humira
I suggested that he get a clear picture from his insurance company on what is covered as it concerns the associated costs of the colonoscopy and the remicade infusions
i suggested that he take charge of his treatments and course of actions by educating himself as much as possible
Then I told her she and he should look to this site for some more help and support....I told her to not dwell on any of the real negative posts but rather use this site for gathering of information.
I talked to her about being supportive without being over bearing and also told her that before we did much more talking i wanted to be sure her son was aware of it was okay with her discussing his issues. We left it there...I may hear from her or him...i may not.
Not sure if I missed anything....but...and this is a big BUT...it made me wonder if CCFA or any other group had set up an advocacy group or program....it seems to me that with such an increase in this disease that it sure would be helpful for newbies to have someone or someplace of a consistent nature to talk to about what they face....it sure would have saved me a lot of heart ache and time if ten years ago I had someone other than the doctor to talk to.
when you think about it.....if you go to the doctor every month (I think I see mine 8 times a year) and if he spends 30 minutes with you (that seems like a lot) then you really are only getting his attention 1/700th percent of the time you havethe disease (30 minutes out of 1,824 per month) Can we really expect the doctor to get it right every time? to tell us all of our options? to keep us fully informed? To actually weight the options? I don't think so. That is why some sort of advocacy group or hotline would be IMO a big help.
dx IBS 1999 UC 2000 CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
Crohns is currently active and has been since April of 2005
52 yrs old