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Ulcerative Colitis
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Posted 5/6/2010 12:54 AM (GMT 0)
I'm starting a flare again. My last remi infusion was March 22. I have been having increased burning and bms for the past week. Been to bathroom at least 20 times today. I see a little blood. Just feel bad. I can't seem to ever get well.

My husband and I want a baby, but looks like that is out with all my problems. I hear some people go into remission when pregnant but I don't know if I want to risk it. First came down with uc when pregnant with my son 14 1/2 years ago.

It seems that I am gonna have another summer shut in the house near a toilet. I hate what this disease has done to my life.

I'm fat (thanks to pred), have no energy and feel bad ALL the time, and most of all NO ONE understands. I'm so tired of hearing "if you would just eat better you wouldn't have a problem." Some people are stupid...
Posted 5/6/2010 1:28 AM (GMT 0)
I'm sorry to hear...I've definitely had my share of those days...It's been so long since I've been in remission I can't remember the last time I was and what it feels like. How many remicade infusions have you had? I just finished my second last week and have been put back on 6mp along with it for a few months and I think it's starting to work :crosses fingers:
Posted 5/6/2010 1:30 AM (GMT 0)
and like you, I'm sick of all the "should you be eating that" or "diet is key to make your problems go away"...I don't even respond or tell them to go google my disease then get back to me
Posted 5/6/2010 2:23 AM (GMT 0)

blksteeda said...
I'm sorry to hear...I've definitely had my share of those days...It's been so long since I've been in remission I can't remember the last time I was and what it feels like. How many remicade infusions have you had? I just finished my second last week and have been put back on 6mp along with it for a few months and I think it's starting to work :crosses fingers:


I've had 6 infusions. The first 3 worked great. I could go places and do things and virtually had no problems. After the 4th infusion I started getting my symptoms back. My GI upped me to a double dose. The 5th helped but not as good as the first three and my 6th one hasn't seem to help at all. I'm just really discouraged. I thought after the first few I had finally found my miracle drug. I guess I will keep looking. LOL

Honestly, surgery is probably next for me. I've been fighting this for over 14 years and it's time for relief. I have spent my college and young adult years in misery. I have missed out on so much. It just looks like I'm gonna miss out on giving my husband a baby too. ):
Posted 5/6/2010 11:28 AM (GMT 0)
my GI mentioned the possibility of surgery to me if the Remicade doesn't work as I've tried virtually all drugs over the years. I'm only on the 5mg/kg dose right now. My sister had the surgery 17 years ago and has never seen a doctor since regarding her J Pouch and has had no issues what so ever. Her UC was so severe that her colon fell apart in the surgeons hands. I am no where near that state yet and hope to never be as bad as she was. Surgery may be the option for you to get your quality of life back. It may be a rough 6-8 months if you decide for surgery but I've heard so many say they wish they had done it sooner...I've thought about it alot over the years.
Posted 5/6/2010 1:14 PM (GMT 0)
     I think you should look into surgery too MacGirl.  I certainly am.  Just tired of battling this disease for almost twelve years.  Yesterday was a "good" day.  When I have days like that.....only one potty trip, able to go to the Jersey shore and the boardwalk, breathe in the nice ocean breeze...ah, life is great!  However, today, numerous potty trips, urgency, pressure in the rectum, but no blood, thank God.  Today just crosses out yesterday.  Goes to prove I cannot make long term plans to be anywhere in the mornings because I never know from day to day how I am going to feel.  I even had my Humira injection yesterday and am on 10 mgm of prednisone.

     Remicade failed after my 3rd infusion.  My GI doctor tried to get me on that for two years...said it would be my "miracle" drug.  Well, I gave it a shot.  I am sort of disappointed in my doctor now.  Either he is embarrassed because he RAVED so much about the Remicade or he just doesn't know what to do with me.  He is on hospital rounds this week and I had to call his office twice.  His nurse is a doll and she is just relaying his messages to me.  He never called me at all himself.  He is in for a big surprise because I have an appointment with a colorectal surgeon next Tuesday, a day before I see my GI doctor. 

     Do you have terrible pressure in your rectum, like it never is completely empty?

Posted 5/6/2010 1:18 PM (GMT 0)
Surgery for UC gave me my life back! Don't look at it as a negative, it's a positive. I allowed UC to dominate my life for 2 years. I lost so much in those years of trying to gain remission. I had jpouch surgery 9 years ago and I have been catching up ever since. I have not cancelled any vacations or social engagements since surgery. I can now make a commitment and keep it. I am med-free and eat whatever I want. Honestly, you will shocked at how much better you feel post surgery and like the rest of us who opted for surgery, you'll wonder why you didn't choose it earlier.

Sue
Posted 5/6/2010 2:38 PM (GMT 0)
"if you would just eat better you wouldn't have a problem."

OMG...one of my biggest pet peeves. I hate when people try to tell me how to manage my disease. I feel like they compare it to indigestion or something else miniscule.
Posted 5/6/2010 3:23 PM (GMT 0)
Just because you have a colectomy doesn't mean you can't have a baby!!! I do believe it lowers your fertility a bit, but it certainly doesn't render you sterile or unable to carry a baby! If you think you want a j-pouch, go to www.jpouch.org, and I bet you'll find some women over there who've had babies w/ a j-pouch. And if you think you want a permanent ostomy, maybe go visit the ostomies forum on healing well.
Posted 5/6/2010 11:05 PM (GMT 0)
Thanks everyone for the encouragement and tips. I just feel so terrible sometimes and it helps to hear from people who know what I am going through.
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