Home – Living with UC

 

Here I am at VM.  I stayed 5 days.

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

17 Responses to “Home – Living with UC”

  1. D.A. Clements Says:

    Carmen,

    Hang in there. I know it’s hard. Our thoughts are with you!

    Best,
    D.A.

  2. Kathy Wong Says:

    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

  3. bellyluv0sofine Says:

    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!

  4. 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.

  5. 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

  6. Linda P Says:

    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

  7. 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!

  8. bellyluv0sofine Says:

    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

  9. bellyluv0sofine Says:

    Linda P: “Thai Guy on monitor patrol!! ” i don’t get it it, sweetie!!

  10. hey sis just want you to know i love you and i am praying for you !!!

  11. 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?!

  12. I just read your column and been very sick . I was just diagnosed with uc myself on 12/17/09. I would like to know if you’ve has surgery yet. If so I hope everything went well. Please reply . MerryChristmas

  13. Wade,
    I had two surgeries over one year ago. The first in July of 2008 where I was given a temporary ileostomy and then take-down in November 2009. Its been over a year and I feel completely healed and healthy. But I know it is very scary when you are sick and fact the unknown. I learned an awful lot during this time. Feel free to read my blog and there is alot of information out there. I hope you get well soon and don’t have to take too much awful medicine. Doctors know alot more about uc know than they did twenty years ago. Ask lots of questions and remain open and positive. That was the best thing for me. Now, over one year later, its a minor blip on my life’s screen of events. Ciao~

    • i was wondering how was the surgery? im scared of it, i was diagnosed with uc 3 years ago now and the past couple months i have been very sick, meds not working, they just started that remicade transfusion today, but they said it can take months to take effect..im at the point where im constantly in pain, tired, nauseated, hard to focus……is the surgery hard to recover from?

      • Recovery from surgery really depends alot upon your own personal state of health and attitude. I had my first surgery in July of 2008. I was 49 years old and in good physical health. The doctors and nurses assured me I was a good candidate. I was scared, frightened, anxious and experience many of the symptoms you describe. Many of those are because your body is starving and lacking in vital nutrients, minerals, vitamins and all the good stuff. This makes you not feel good. You won’t feel good until you are better: either medication stabilizes or you have your colon removed. I had the disease for over twenty years. I maintained with many meds but in the end they recomended colon removal and, for me it was the right thing to do. I would suggest that first you trust yourself, listen to your doctors. Don’t be swayed new-fangled woo-woo stuff that could be very dangerous. My opinion is that science based medicine is the best. But, also that one’s own personal attitude of willingness and openess and fearlessness helps too. Ask the hard questions. Don’t let anybody intimidate you. Be polite, but keep asking. You do want your caretakers on your side so you want them to trust you. But you have to trust them to, so it’s okay to push on things you are unclear about. It is their job to take care of you and get you healthy. I am going on my third year in recovery and I am strong and healthy and thankful every day. The quality of my life is a precious and special thing. Being in partnership with others who literally have your life in your hands is one of the best things you can do for yourself. I wish you the best in health, wellness and spirit.

  14. i had the surgery in 1985 ,only 1 thing that is sort of a problem is going to the bathroom many times a day (at least 12) i always search the mens room where ever i go,but the disease is GONE after 7 years of hell with uc.everyone who has uc hang in there you can be healthy again.. ghod bless you all.

  15. I know that colitis is a serious disese. My uncle also suffers from this disease. I wish you all the best and if I find out some tips that can help, asking my uncle, I will post them here.

    Be well!

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