I've found a good scale for rating symptoms.

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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/11/2009 12:27 AM (GMT -7)   
It's actually for fibromyalgia and chronic fatigue patients, but I think it might translate pretty well to our Crohn's experience too.

http://www.cfidsselfhelp.org/cfs-fibromyalgia-rating-scale

The good thing about this scale is that we can actually *rate* our fatigue and give doctors an indication of whether & how much it's governing our lives.

Hope you find it helpful,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 8/11/2009 4:28 AM (GMT -7)   
To see it like that makes things quite easy. Though it shows me to be worse off than I would ever be able to desrcribe or admit to. I always tend to underrate my fatigue/pain, especially since I "look so good" compared to what I was when I was on death's door....

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.
Fibromyalgia (allergic to Lyrica)

Tried: Pentasa, Cholestyramine, Asacol, Humira

Presently taking: now on Remicade, Imuran, probiotics, calcium, B12, nortryptiline.
For asthma I take Advair 250, singulair


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/11/2009 4:35 AM (GMT -7)   
Yep, same. I think I'm sitting at about 25 or 30 atm, was down at about 5 a fortnight ago.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 8/11/2009 7:01 AM (GMT -7)   
I printed this to take to the docs with me. my only problem with the list is the combination of the work hours with the symptoms. I am stubborn enough to work more despite the symptoms. i think I fall anywhere in the 50-80 range depending on the day and time of day. even with that range, this gives me a great tool to describe life to someone who doesn't live with the disease
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....


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/11/2009 4:27 PM (GMT -7)   
I think the point of this scale is that with illnesses like CFS, you *can't* push through the fatigue. If you push too hard, the fatigue is likely to get so bad that you will spend days / weeks paying for it, and may be bed / chair ridden and struggling to move at all. (I've been there; it's not fun).

I'm glad you liked the scale. I'm planning to try to use it with my drs too.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/11/2009 8:00 PM (GMT -7)   
Thanks Ivy, I love this scale and will show this to Gastro on next visit.
Jo

granna
Regular Member


Date Joined Nov 2007
Total Posts : 41
   Posted 8/11/2009 8:20 PM (GMT -7)   
Thanks Ivy, going to take this with me to my next appt. Now, who can come up with one for this blasted nausea that never leaves me, just sometimes gets worse?! Could it be the Imuran?
Granna

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/11/2009 9:58 PM (GMT -7)   
Me too. Thanks! I bookmarked it and will print it before my next doc appt. It's a great way to explain where I'm at. I don't like the pain scales because they leave things out. This really covers more aspects of life - or at least includes them in the rating.
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/12/2009 5:56 AM (GMT 0)   
I like this! I think I'll follow everyone else's example and take a copy to the doctor.
I'm actually between 40-60 right now. It's odd..some times I have so little energy I can barely speak, and then a few hours later I'm on a cleaning frenzy or hyper at work.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 5 mg, pentasa 2 pills 4x a day, omeprazole in the morning, and a women's multivitamin. I'm also trying a B vitamin complex, but it doesn't seem to be working so I'm considering the shots.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Wild_Swan
Regular Member


Date Joined Apr 2007
Total Posts : 89
   Posted 8/13/2009 11:31 PM (GMT -7)   
this is great - i never fully explain fatigue to my dr - yet if i think about it its the first symptom i get of a flare - so its prob really important i explain it - though looking at this - i think i may be worse than i let on a lot of the time (& my test results were worse than i realised too)
 
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 8/14/2009 3:49 AM (GMT -7)   
Granna,

Yes, Imuran can cause nausea. Be sure to mention this to your doctor. When I was on Imuran a few years ago, one thing that helped with the nausea was to take it with dinner instead of earlier in the day. Somehow, taking it later in the day seemed to make it not so hard on my stomach.

Good luck,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, intermittant pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, homeopathy.


Kriss
Regular Member


Date Joined Mar 2005
Total Posts : 357
   Posted 8/14/2009 4:57 AM (GMT -7)   
This was really good! Not like that 1-5 smiley face stuff... I'm somewhere between a 30-40 mostly...
32 year old female... diagnosed with Crohn's at age 16, then with proctitis in 2005... right hemi-coloctomy April 2001 (removed 12 inches)... currently taking 100mg 6MP, Canasa, acidolpholus, Protonix, B12 injections once a month, 20mg Prednisone, Bentyl and Percoset as needed... just started Remicade


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 8/14/2009 7:18 AM (GMT -7)   
That's a great resource.  Thanks for sharing.   tongue
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort

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