hello I'm new to this stuff

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Jefferlee
New Member


Date Joined Mar 2009
Total Posts : 9
   Posted 3/3/2009 5:03 PM (GMT -6)   
I'm new to this whole talking to other people with the same disease as me. I was diagnosed in March 2008 with UC. It's been one of the toughest things I've ever had to go through. my doctor started me off with asacol and prednisone in the beginning to get it under control. I was officially off the prednisone in about August 2008. I was symptom free till about the beginning of January. Then it all went back down hill. Now I'm in lots of pain and tomorrow am going in for a colonoscopy. I've been laying in bed for the past 4 days now because I dont feel like doing anything else, what with having to use the restroom almost every 20mins. I'm very lucky to have a boyfriend who has supported me through my weight gain and loss and everything in between. I would appreciate any information from anyone. I tried asking my doctor if there was a natural path I could take and he wouldn't even think about it. I was reading up on the "sunflower seed and spinach diet" and that sounds like something I would LOVE to try. I guess after tomorrow I'll be up for trying anything. Thanks for taking the time to read.

-Jen
19 year old Female
Diagnosed with UC March 2008
current meds: Asacol and azothiaprene


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 3/3/2009 6:45 PM (GMT -6)   
Welcome to the forums, and welcome to the journey of trying alot of wierd things, lol.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/3/2009 8:05 PM (GMT -6)   

Hope your colonoscopy goes well.  The prep is always worse than the actual test.  Have you ever tried rectal meds?  Enemas or suppositories?  They can really work to get you over the hump and start feeling better faster.

BTW  - Welcome!


Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/3/2009 8:46 PM (GMT -6)   
How disappointed you must be to finally be off prednisone and flaring so bad again already.

Find a naturopathic doctor. You don't need your doctor's permission! He or she might be able to help you.

Otherwise, if you are feeling so bad so long, so often, you might be headed for surgery. That's not necessarily a bad thing, you'll learn here. You certainly don't want to have to take courses of prednisone two or three times a year, ugh. You have a long life ahead of you and I would not wish the long struggle with this on anyone.

Keep in touch ~
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


meikaidi
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 3/3/2009 9:29 PM (GMT -6)   
I tried acupuncture and it seemed to help but was too expensive because my insurance does not cover it for this particular disease. So, you may want to give that a try. I've had friends try it for other reasons and swear by it!

Also, others use Probiotics to keep their colons healthy. I have recently started them and show a vast improvement in symptoms such as gas, urgency, etc.

Jefferlee
New Member


Date Joined Mar 2009
Total Posts : 9
   Posted 3/3/2009 9:34 PM (GMT -6)   
yeah, I just got done with my first dose of the MOVIprep. I have the hardest time keeping it down. they even suggested a pill for nausea and it didn't work..... :( my Mom tried to tell me it was all in my head. but I know it wasnt. It worked though drinking through a straw so I didn't have the taste on my lips..... I just want to get this over with!! :(
19 year old Female
Diagnosed with UC March 2008
current meds: Asacol and azothiaprene


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 3/3/2009 10:05 PM (GMT -6)   
Chug with a straw and finish off with a little 7up or something. I usually just swish it and spit it out.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/3/2009 10:28 PM (GMT -6)   
The most important thing is to have a GI that is open to anything that may help (that's why I'm now on GI#4 who is open minded and encourgaing to doing what ever it takes to feel better, naturals and what ever eles it might be)...my GI is one of the top lead researchers for crohn's and colitis in Canada, I have found from experiance that the ones that are involved with the research aspect as well, are generally the ones that are more open minded to any route that may help.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 3/3/2009 10:57 PM (GMT -6)   

A good thought for you from me. 19 years old is too young to be saddled with a disease. You should be enjoying life.

With God's help this flare will go and not appear again .


Jefferlee
New Member


Date Joined Mar 2009
Total Posts : 9
   Posted 3/4/2009 12:13 AM (GMT -6)   
thanks everyone. :) I've been keeping a positive outlook on everything thats going on with me. it is tough only being 19. especially with so many adventures all my friends are wanting me to go on with them. stressing over this doesn't help anything. and I am a stress out kinda person. I get it from my mom. hah!
19 year old Female
Diagnosed with UC March 2008
current meds: Asacol and azothiaprene


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/4/2009 11:31 AM (GMT -6)   
How'd the rest of the prep and the colonoscopy go?  What did the doctor say?

Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


Jefferlee
New Member


Date Joined Mar 2009
Total Posts : 9
   Posted 3/4/2009 1:35 PM (GMT -6)   
the rest of the prep was awful. I couldn't keep it down for the life of me. so its only on my left side, which is where its been all along. good to know its not getting wrose. but i'm being put on different medications. I dont exactly remember. I'm just glad its over and done with. but now I have really bad hiccups. lol!!!
19 year old Female
Diagnosed with UC March 2008
current meds: Asacol and azothiaprene


UChick
Regular Member


Date Joined Jun 2006
Total Posts : 176
   Posted 3/4/2009 11:04 PM (GMT -6)   
Hi,

Welcome to the forum.

Ah, I remember colonoscopies. I couldn't stand that Ginger-Lemon stuff I had to drink the night before- ugh! Give me Barium for an endoscope (or whatever it's called) any day! lol

Don't let your GI dissuade you from trying something that could be beneficial to you. I'm not into the natural route, but it works for a lot of people on this forum.

You and your doctor will eventually find the right combination of treatment and hopefully it will keep you in remission longer than a few months. It took about a year and 2 hospital stays to find the right combination of meds for me.

Ask your doctor about Remicade. I feel that it jump started me into remission even though my GI thinks it's the Azathioprine that did the trick 6 1/2 years ago.

UChick
Age 18
Diagnosed September '01 : Remission since July '02
Asacol- 4 pills 3xday
Azathioprine- 125mg 1xmorning
Centrium A-Z multi-vitamin
Took Remicade 3 times, BIG FAN!!!!
Have Taken: Prednisone, Flagyl, Zantac (for acid reflex)


Jefferlee
New Member


Date Joined Mar 2009
Total Posts : 9
   Posted 3/6/2009 1:58 AM (GMT -6)   
my doctor put me on enimas? I dunno. I still havent gotten them yet. and I'm on 40mg prednisone again :( that part made me so upset. I HATE prednisone with such a passion. it works......... but for everything else.... its awful :( and I totally agree with you the stuff for the endoscopy is SOOOOOO much easier.
19 year old Female
Diagnosed with UC March 2008
current meds: Asacol and azothiaprene


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/6/2009 9:21 AM (GMT -6)   
The enemas are not fun, but they work well. Imagine getting the medicine right on the inflammation, you can't beat that and you don't have to put the medicine into your whole system. Hopefully you can get through this flare soon.

You are a stress out kind of person, I am just the opposite, reckless and cavalier. I get that from my mother!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   

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