New to forum...not to UC

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kris2336
Regular Member


Date Joined Sep 2007
Total Posts : 28
   Posted 9/29/2007 5:51 PM (GMT -7)   
Hi -
 
I was really happy to find this board today.
 
I am 40 years old and was diagnosed with UC about 11 years ago.  My first few flares were horrible, then I got it under control (relatively) until I got pregnant with my daughter, who is now 6 years old.  I went on Pred during the pregnancy and through breastfeeding, though at much higher doses since my wacky hormones seemed to make me less responsive to the meds.  As a result I went through major mood swings, osteopenia, etc.  After I quit breastfeeding (about 11 months after she was born), I slowly got myself back in shape. 
 
The last 4 years or so have been pretty good.  Although I still have about 3 flares per year, they have been pretty low-level and I have been able to get them under control with cortenemas rather than Prednisone.  I had gotten pretty cocky that I could handle this thing.
 
Until now...I am now in the middle of another major flare...my worst in years.  Major pain, can't sleep, countless trips to the bathroom -- I forgot how horrible this can be.  I am now back on Prednisone which scares me to death.  They are also talking Remicade, which is new to me.  My liver didn't do well with Imuran in the past, so that's not an option.
 
Anyway, I am already a mess emotionally and needed something new...so I looked for support groups and found this board.  If anyone has any helpful advice on how to try to retain some sort of normalcy with your kid during a bad flare, info on Remicade, etc., I would love it.  I am also curious about anyone's experience with accupuncture.  I want to explore some less toxic routes to go with all this crap I'm putting in my body.
 
Thanks for listening -
 
Kris2336
 
Prednisone - 40 MG
Colazol
Cortenemas 2/day
And massive doses of Calcium!

 
 
 


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 9/29/2007 6:06 PM (GMT -7)   
Hi Kris, Welcome! I don't have much insight to your requests, as I'm fairly new to UC. The board was a blessing and also a scare, at first, but the more you read, the more you'll be able to decipher it for you. Just keep hangin' around as there's a lot of great folks on here with lots of experience and wisdom.
AlabamaBabs
Pancolitis diagnosed 5/07 
started on 2 Lialda/day and increased to 4 Lialda/day since 8/01/07
40 mg. Prednisone for two weeks starting 9/16/07 and tapering by 5mg per week started 9/28/07
Activia yogurt; multi-vitamin; extra calcium supplement; omega 3's


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 9/29/2007 7:05 PM (GMT -7)   
Hi Kris - welcome as well. I'm fairly new here. I found this forum around the time my husband was admitted to the hospital on Mothers' Day with a really bad painful flare. He seems to be heading towards a remission but still has a ways to go but it is looking much better than it was for quite awhile.

I am no expert - I have been "going to school" here getting alot of very helpful and useful information to use in conjunction with his ongoing care.

We head to the Mayo Clinic tomorrow to hopefully get some additional information, 2nd opinion, validation of what he is currently on for meds, get some answers to various things I have for questions from here and see if there is something new or improved they can come up with for him.

At first there was so much info I was reading here and forgetting most of what I read. I started taking notes and putting them in order for their subject matter. Important threads I would cut and paste and put in a word format and print off and categorize. I know alot of the info is out there in other formats but I find there is so much more here with the way people respond to various questions.

Seeing the various diagnosis and the medications members of this forum have in their signature line also helps when you have specific questions you might want to ask another person.

Hopefully this will be a good resource for you and you will find some help here.

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg

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