I will always be clueless about my Crohn's!

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SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/14/2009 4:43 PM (GMT -7)   
I have been in the worst flare since my Sept 07 resection this past week,
Why do I let myself get to this point????
I just keep plodding along, self-medicating with pred tapers, thinking - ok Im feeling better, lets start tapering the pred down again
This time I managed to stay out of hospital with the help of my GP who told me to up my pred to 40mg. The 40mg took 3 days to kick in and give me relief from the excrutiating cramps and D and could finally tolerate a mush diet and now am on light diet.
I look back at my diary and see all the small pred taper bursts Ive done this year and think - what am I doing to myself - stupid, stupid woman!
I have been waiting on Humira approval and when I made my Gastr appt. for next week, she informs me she hasn't done the paperwork as she thought I was only considering it - huh?? Why would she have me do chest xrays and TB tests just to consider it ???
So now Im back to getting approval and tapering down the pred to a level where I am not in agony.
Not really asking for anything but happy to rant this out at everyone.
I do know that I should have on my gravestone "The Plodder" as I will just plod through this disease and be happy with short bursts of wellness.
Ok ranting done, thank you to anyone who could be bothered reading my venting lol.
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/14/2009 4:48 PM (GMT -7)   
(((Jo)))

Can you get a new gastro? That really isn't good enough (btw, are you keeping a symptoms diary? If you give her a week's worth or more at your next appt, that might help speed up the approval process)

No time to write more, sorry. And I'm not ignoring your email - Yahoo isn't letting me replly this week and I don't have time to wrangle with it just now; am overloaded with appts this week.

Keep hanging in there, and I'm so sorry you're suffering so much.

i, zooming off to another appt.
Co-Moderator Crohn's Forum.

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


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 10/14/2009 8:47 PM (GMT -7)   
Hi SydneyJo,
Im really sorry you are going through this. It does get tiring just plodding along, I sure know what you mean. I agree with Ivy that its not good enough you need to be firm with your doc or go to another one, I had wonderful supportive doctors that acted immediately when I was unwell but unfortunately for me nothing really worked. I hope you find some relief soon, just know we are here for you. take care of yourself and listen to your body and get all the rest you need
((((((((((((hugs)))))))))))))))

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/15/2009 1:22 PM (GMT -7)   
Thank you Ivy and Andorable :)
I stick with this ninny Gastro because she doesnt charge me - so I clearly get what I pay for - nothing. My GP compansates for the Gastro's lack of caring and is on the ball with all our meds - so I have one good Dr. to help with the CD.
I was just angry with myself playing Dr. with my meds and doing myself more damage than good.
Thanks for your replies and kind words.
Hope you are both doing well.
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone


macracer
New Member


Date Joined Sep 2006
Total Posts : 3
   Posted 10/15/2009 4:22 PM (GMT -7)   
 
Sydney Jo
 
You are a trooper hang in there. My son 24 is on Remicade 5 mg every 6 weeks which worries us with the long term side affects. Hope Humira works for you. We have talked of changing but it could be a disaster if he has a blockage or bad flare up. He has only had one in 10 years with Crohns no surgery yet.
 
Rick Grow

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/15/2009 9:58 PM (GMT -7)   
Thanks Rick.
I think everyone with this disease is a 'trooper'. I am just getting really angry with myself for becoming the 'plodder' and self medicating with the pred bursts all the time and happy to plod along this road till when - till last week when I felt like ripping my bowel out!
I hope the Remicade works well for your son - I too am scared of taking either Remicade or Humira because of the side-effects, I guess thats why I haven't pushed my gastro for the approval on it. Now Im more scared of not taking it because of the damage Im doing to my bowel by self-medicating.
darned if I do, darned if I dont.
Thanks again
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 10/16/2009 9:50 AM (GMT -7)   
Just wanting to send love and support your way. This sounds miserable...I know I wanted to get off of pred (have been for about a week). You never know how it will go do you?
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 10/16/2009 6:59 PM (GMT -7)   
SydneyJo,
I hope your feeling better, just wanted to add that the pred side affects are just as bad if not worse than taking remicade or humira, every drug we put in our body obviously isnt great but I truely believe that it may be worth a go for you if you are suffering like this. I was on remicade for about 18 months then built the antibodies so they tried me on humira unfortunately they didnt work for me but at least I can now say we literally tried every drug going before they had to give me an ileostomy. Ultimately it has to be your decision but it has helped a lot of people, Take care and hope your going well, keep us posted :-)
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