I am a mother of two great girls 10 and 5 years old. I have recently been diagnosed with Ulcerative Colitis. August 2012. So confused by all of this…. Wish so badly there was a miracle cure and my girls did not have to watch me suffer. I push through every day with a positive attitude and a smile when in all reality I am scared to death inside. Have a wonderful man and an amazing support system. My family has been incredible. I just want to get into remission and move on from this already :)
I started with severe abdominal pain and for years thought it was completely normal to have to run the bathroom shortly after a meal. Found blood in my stool late July early August . Had my first colonoscopy in August only to learn that my entire colon is inflamed and in horrible shape. I have had major hair loss. I only have about 25% of my volume left…. Hair is still falling out fast am afraid I will be bald in a few months. I am tired all of the time and have been losing weight like crazy. I think I have gotten a handle on the weight loss as I am eating as often as my body will allow. I am still having 3-8 loose watery movements a day. My Dr started me on Lialda 2 pills daily, two weeks ago I started Prednisone 40mg. It is not working , the lialda is coming out in chunks most of the time and I feel good due to the Prednisone a few hours out of the day. SO when feeling good I tend to over do it and pay later with fatigue to follow that night as well as horrible cramping , loose bloody watery stools and sadness. I feel like I should be improving. I feel as if the prednisone gives me a false sense of feeling better a few hours a day when my energy level is through the roof. I see my Dr tomorrow and have to tell him the Pred is not working, Am worried about what the next step may be for me. 10/10/2012 Dr appointment will hopefully leave me feeling better rather then stuck in this horrible cycle of a terrible UC flare that just seems to be stubborn.
I just would like any info on if anyone has had a similar experience with the Prednisone not working . It has been two weeks and the Dr said he was almost certain I would find relief within a few days of starting the meds. I feel lost , like a few days turns into a few weeks and will turn into a few months. I am just worried about what may be next for me. The Dr said he did not want me on the Pred for longer then 6 weeks. That in 6 weeks he wanted me weened off.
Any advice would be amazing….
I am so happy I found this site.
Ulcerative colitis truly is a lonely disease.
Alone on the throne that is.
It is hard for people to understand what someone with UC is going through. I am very lucky that I have such a loving support team . LOL I thouhgt for a minute that when I said I was feeling ok that they believed me. It took my 5 year old asking and me responding with ” Mommy is feeling good” to her response that made me realize I was fooling no one. Her response was ” Then why do you look so icky” I have definitely had to realize they are here for me and its ok to admit I am not doing so well on the days that are really rough. Just have always hated needing anything from anyone and this I have found is truly a disease in which you are quickly humbled. I have found that if I need help I am going to ask and that it does not make me weak. Just would really like remission…. Thanks in advance for any and all advice you all may have… .
Where I’d like to be in 1 year:
Healthy!! Active like I was months ago and playing in the sand with my beautiful family or swimming in our pool!! Enjoying the life again that we have created :)
Lialda 1.2 mg x2
I also Have IC ( Bladder Disease)
written by Tamby
submitted in the colitis venting area