Home – Living with UC
I am using this blog to tell my story and experience as 49 year old woman diagnosed with ulcerative colitis. I will undergo surgery to remove my large intestine, the lower colon. I hope to share my experience so that others can learn and I can glean from their experiences as well.
Ulcerative Colitis — that’s me, or at least UC has ruled my life the last six weeks or so. You may be familiar with this disease, and here I share just another twisted perspective that may enlighten (or not). For the more then ten years my UC has lain a quiet sleeping giant in the bowels of my body, kept tightly on its leash of remission. Occassionally the ugly beast raised its giant angry head, rattled my innards, shaking me with senselsess in pain and discomfort. Steriods brought put the beast, temporarily back into its deep slumber and I would carry on with my fun life until the next bout.
This Mother’s day 2008 brought me down to the ground as UC beast flared up and roaring fully charging ahead. First, I tried diet management until I could see the doc. He began treatment with increased dose of Prednisone and increasing. After several weeks, I am wracked with pain, losing weight and weakening steadily. Antibiotics help. We start to taper the preds, increase the therapy drug Azathioprine. I am not confident.
June 4, flexible sigmoidoscopy procedure reveals precancerous cells, dysplasia and polyps. Surgery is highly recommended. Like an old car losing its muffler, the doc says “your colon is shot”. This is devastating news for me. Continuing , the flare hangs hold of my innards, my body and the core of my very being. I rock and tremor with pain, tears, depression, anemia and dehydration. It is hard for me to grasp that my my body is not working for me. Sick is a foriegn world to me.
June 18, am admitted to hospital. I remain five days on colon rest and fluids. I learn about illness. My body battles the inflammation, fever, low blood pressures, and high blood sugar levels. I am so tired. I am so sick. However, I am under terrific care of the many well trained experts here at Virgina Mason Hospital in Seattle.
I’m released Sunday, in spite of the fever, and I am try to build up strength in every way to prepare for surgery. I leave hopeful, inspired and ready to tackle the beast that resides within me. I hope to share with you, my family, my friends and those who cope with this condition as well.
I continue with updates
June 29, 2008 at 8:50 pm
Carmen,
Hang in there. I know it’s hard. Our thoughts are with you!
Best,
D.A.
July 6, 2008 at 12:40 pm
You’re one tough cookie, Carmen! I am sorry you’re having to go through all of this, and I wish you lots of love and strength. I can identify partly with what you’re going through, the whole surgery and chronic illness drama. In fact, I’m taking the exact same medications you are. I’m glad to hear that you’re receiving care at Virginia Mason, which is also where my doctors are at. They’re awesome! If you need anything, a helping hand or a listening ear, let me know
Kathy
July 6, 2008 at 6:36 pm
Hi there Kathy,
Thank you so much! I know you have been through alot too! What is it that you have and did you have to go to surgery? Yes, VM is very good!
July 16, 2008 at 9:49 pm
Carmen, thanks SO much for this! I’ve had this delightful disease for 8 yrs, and not far behind you to the table. This is a horrible disease that completely takes over lives. I wish there were move people like you to speak honestly about it. I am still trying to be that way. Much better than I used to. It helps to be able to see that others are dealing with it to. Just wanted to wish you luck, and thank you for your honesty.
July 17, 2008 at 2:57 am
Carmen:
I just got Tad’s e-mail. You probably don’t remember me, but I remember Tad talking about in glowing terms before I retired to Thailand. You have a good style in writing, and hang in there. I know it is difficult, but that is the job.I will be monitoring your web page and will stay in touch.
Vince
Chaingrai, Thailand
July 21, 2008 at 9:34 pm
Wow bellyluv, you have a Thai Guy on monitor patrol!! Now aren’t you special?
You and your belly dance group were fabulous at Medfest. I hope that you have some pic’s to share with all of us.
I’ll be staying in touch~ thanks for the wings.
ox,
Linda
July 22, 2008 at 12:03 am
Gees Carmen, this is so intense! I know you well enough to know the pain must be terrifically bad. Thank you so much for giving us a forum to learn your story. Take care of yourself!!! I’m thinking about you, only good, healthy thoughts. Love to you!
July 22, 2008 at 11:48 am
Dana, Dana! Crazy isn’t it???? Lets get together and do something fun! Drink wine, make jewelry, dance! Did you hear that piece on NPR about the sculptor Calder? He was a jeweler first!! Like you. Hugs. Carmen
July 22, 2008 at 11:49 am
Linda P: “Thai Guy on monitor patrol!! ” i don’t get it it, sweetie!!
July 23, 2008 at 5:31 pm
hey sis just want you to know i love you and i am praying for you !!!
July 28, 2008 at 9:09 pm
i didn’t hear the peice on npr but i do have a big book of Calder’s jewelry. it’s very fun stuff, super modern. I’ll show you next time you come by. I stopped by your house today with Tip. Are you home? Did you have surgery?!