Advocacy for newbies

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.

Any thoughts?

My hat is off to you HSspencer.  newbies need to hear what we have been threrw and what works and what does not work for us.  we are all different, so they should  keep a diary as what goes on in there lives.  Like Stress and Diet.  i know for Me that stress triggers my c/d.  Diet also a big thing.  i was admitted to the hospital a couple of weeks ago due to and bowel  obstruction.  surgeon came in and told me to eat more fiber.  i laughed at him.  Fiber is a no no for most of us that have chrohns.  especially for me because they took out my  large intestine, due to it being full of ulcers.  i too tell ppl about this Great site.  i have learned so much on here.  THanks to all of YOU......

I too have friends of a friend etc always ask if newly diagnosed folks with Crohns can call me. I of course, always say yes. I too just tell them what it has been like for me and give tips of things I have learned thru my 30+ years with this DD. And of course, I always recommend this site to them.

I really like my current GI alot. He seems to really do alot of research and enjoys talking about the details of the disease with me. We are always together for at least 45 min to an hour each visit. Most of it talking about the disease, treatments, things in the pipeline etc. I think we spend about 15-20 of that time talking about my Crohns, which seems sufficient for me.

I loved your hospital story too:) At my hospital I always get a staff primary doc, and a staff GI. Its an HMO so I rarely get to see my GI when I am hospitalized. But I have been pretty lucky so far, but there is always the bad ones in there once in awhile.

I agree too, I wish there was more information or places people could go that would help educate them more about Crohns. Some of the stuff I have had to learn on my own, and I think I could have prevented some problems if I had been better educated about Crohns. Good thoughts!!

I just "found out" I have Crohn's, and I really must say that people around you guys are lucky to know people with the disease! I don't know anyone who has it, and very few people who even know what it is! It makes it tough! I've had to do a lot of reading and trying to understand things on my own, but it definitely makes it easier to have someone to talk to who is going through, or has gone through, a similar situation. It's great that you guys are so helpful to others - I hope that some day I can do the same thing once I learn a bit more!

snohare....I could not agree more.   the idea would be ...at least in my mind to provide information....and suggest questions that should be asked of the doctors, nurses, care centers, employers and insurance companies.

Also if there ever was such a program...the folks involved would have to be trained to listen more than they advise.