Bright Days and Dark Days

Carol in the Mountains living with ColitisIntroduction:

I am happily married and live in Florence, CO. I have no children but have two dogs Petey and Ginger who are a part of my family. Love hiking and, gardening, theatre and long walks by the Arkansas River in Canon City, CO. I was diagnosed in 2008 and have had lots of ins and outs. Bright days and dark days fill a lot of my years.. I stay pretty active and I forgot I love photography. I hope to meet some really nice people on this site. I really want to get better but if all else fails, I will get surgery. I am already pretty tired of a lot of things!!!!

Colitis Symptoms:

I am taking Asacol and Imuran and this is the second time I have been bleeding while taking this mess. This is day five. I was on remission for 5 months with these drugs until the 13th of May. No diarrhea or vomiting yet! I have lost weight on these drugs, but try to eat the foods I have been reading about when you have UC. I will go again to the doctor and he will probably put me on Remicade next and that is it!!!! I really do not want to take Remicade but what do you do!!!! My last colonoscopy which was in November was very mild. It looked so much better.

My Story:

In 2008 I had UC and have taken all kinds of drugs since then. Was in remission a couple of three months every now and then. Now taking Asacol and Imuran but am spotting since the 13th of May. Was in remission though for five months. Am confused rather maybe I am not eating right. I love my bread, but have read not to eat this nor rice or pasta. Would like to put on weight but feel the Imuran is doing that. Get so depressed by it all. Family tries to understand but it is hard for them. Husband is very supportive. Can you tell me what foods would be best to eat and how you stay strong each day. I don’t have diarrhea or vomiting right now which is good in a way. I never really ran to the bathroom after eating either. Am scared I will bleed to death or something and can’t sleep good right now. UC has changed my life so much. I am not as outgoing as I was and my mood swings are not that great at times. I feel depressed and feel like crying when my flare-ups start.

My doctor does not know anything about what to eat for this problem and even states that food will not help. My days seem bright at times and dark other days. I wish sometimes I could change my doctor but was told it is not good to do that. Doctors are not that great in Colorado concerning this. Seems like they just dish out the pills. I wonder what these drug are doing to my body. Wish we had a cure for this. It is such a struggle for me. I try to be strong but that is hard. I need all your help!!!

 

Where I’d Like to be in 1 Year:
UC free. I am tired of it all. I am 59 and feel I have years to go. I am active and hope I can do most things I love if I do have surgery. Scared of the surgery because of infections that can happen afterwards. I need to feel that someone cares about me and will be at my side if I go through this. I need your support!!!! Just listen to what I have to say and help me if you can!!!!

Colitis Medications:

I figure Asacol in a way because my colonoscopy was so mild. Have any of you taken Remicade and can tell me what maybe to expect.

written by Carol (who currently lives in Colorado)

submitted in the Colitis Venting Area




Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

5 Responses to Bright Days and Dark Days

  1. Randi
    Randi May 25, 2012 at 3:56 pm #

    Hi there! I have been on remicade for almost a year. After my first infusion I instantly felt better! It was honestly a miracle drug. I also take Imuran along with my infusions. As far as side effects go, joint pain is the only one I have. After a year the positive effects seem to be slowly wearing off. I have heard of people being on remicade their whole life and never having problems! Best of luck to you

    • Carol from Colorado
      Carol May 29, 2012 at 6:32 am #

      What do you mean about positive effects wearing off?

    • Carol from Colorado
      Carol May 29, 2012 at 6:37 am #

      My insurance told me today that I have to pay $200.00 co-pay and the cost of doing it in the hospital. Can I afford that, no! Now what do I do!!!!!

  2. Maggie May 26, 2012 at 6:07 pm #

    Hi, Carol. I feel your pain. I’m in a mild to moderate flare right now but worse a couple weeks ago when my gastro scheduled me for a sigmoid. I was feeling better by then but still bleeding, yesterday morning. Because of the procedure, I took it easy yesterday but had chores to do today, I have a 4 day weekend. This morning I almost passed out in the closet from getting up too fast, and feeling weird because of the UC–very scarey. It took me 2 tries to stand again so I wouldn’t pass out. As the day has gone on that pass-out feeling is gone. Now I’m on prednisone and DON’T want to be. I gain weight on it, all in my belly, so it seems to defeat the purpose. I try really hard to follow the scd diet but not 100% but it does help. Also using Canasa suppositories which help a lot. I take several supplements like turmeric and cayenne pepper capsules. Don’t know if these help or not but am afraid if I quit my UC will get worse. I feel lucky that I’m not in a bad flare. I went on Remicade years ago and like Randy, it cleared me right up after a 6 mo. flare but I’m not on it now. I’m trying hard to have a positive attitude, but like you feel like COL (crying out loud). I don’t want my boyfiend to know that so I put the positive attitude back and I think it helps a lot. Wishing you the best of luck!

    • Carol from Colorado
      Carol May 29, 2012 at 6:34 am #

      So the Remicade did not help you and did you get side effects?

Leave a Reply