Advocacy for newbies

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hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 2/12/2009 7:38 AM (GMT -7)   
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?
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


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 2/12/2009 8:13 AM (GMT -7)   

that was so nice of you to do! 

 I am not sure what I would say to someone newly diagnosed since I am less than 2 years that I have known. I would let them know the first year is tough, getting used to these meds and finding the right one is a long hard road. I think the first year was a big blur and I have no idea how I made it through it! So, you speaking with her was a really big help.

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

 

 


chico41
Regular Member


Date Joined Jan 2006
Total Posts : 135
   Posted 2/12/2009 11:41 AM (GMT -7)   
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...... yeah

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 2/12/2009 12:06 PM (GMT -7)   

Chico.....your doctors "eat more fiber" comment really made me laugh.  I can do you one better....the first time I was in the hospital for this darn disease was last September...I went in through the Emergency Room with a major obstruction that cleared before they cut into me so....the first doctor to see me the next day was the surgeon...She suggested no surgery and that I should get to my regular gastro PDQ.  She signs off on my release.

  Then later the hospital assigned gastro comes in (I live an hour away from my reg gastro and his hospital) and he suggests no surgery and that i should see my regular gastro PDQ....and he then signs off on my release

then the hospital assigned primary physician (who is the one who has the final word on my release)comes in...and get this....he says my tests show some issues with my blood and that I should stay in the hospital for a few days....I asked him why.....he says:  "So that we can get this crohns thing taken care of and cured.....get you all better!"  I laughed and told him it was not cureable....he gave me a blank look and said he would have to talk to the gastro about that....I said just get me an AMA form and I would leave......he left, the nurse said he called the gastro, got all red while talking to him, she could hear the guy yelling at him over the phone,  and then came in and told me: "We suggest no surgery at this time but you should see your owm gastro PDQ."

I said thanks and ...then I know i shouldn't have ...but I asked " Did they write your cure for crohns up in the journal...or is it just a very well kept secret?"  He just got beet red and left....yes I was mean, but I was also the one in the bed with the disease....

 


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


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/12/2009 12:23 PM (GMT -7)   
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!!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 2/12/2009 3:40 PM (GMT -7)   
Im always talking to people, and people are talking to me.   I swear my mom must have "MY DAUGHTER HAS CROHNS" tattooed on her head, because just about every day shes telling me how this or that person from her work wants to talk to me about Crohns.  Likewise with my bestfriend who is a school teacher, shes noticing a lot of her kids have it, or parents, and shes always like "I told them you would talk to them, hope you dont mind"  Of course I dont mind, I love meeting new Crohnies. :)

Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Humira (bi-weekly)
 

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/12/2009 4:29 PM (GMT -7)   
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
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 2/12/2009 5:03 PM (GMT -7)   
Valerie, I am almost at the opposite end of the spectrum from you. Around here, everyone knows someone with a friend or a relative with Crohns. yeah World capital of Crohn's supposedly (sharing the honour with Tel Aviv).
But I have never - EVER - been asked if I will talk to anyone who has it, however well I explain symptoms, drugs, causes, whatever....
idea Must be my shambling gait, beetling brow and drippy nose, what do you think folks ? smilewinkgrin
Spencer, any advocacy group would need a few written ground rules I think, just to help avoid brain fog problems and save people from getting out of their depth. A list of simple caveats would be a must ! yeah

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 2/12/2009 5:11 PM (GMT -7)   

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.


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


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 2/12/2009 6:00 PM (GMT -7)   
yeah Yes, I think it would be like taking complaints by phone...until they've said what's on their mind three times, they're not really destressed enough to listen. It's a magical tactic, to let people vent !
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