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From Pancolitis to No Colon and an Ileostomy

Faith with ileostomy

That’s me!

Meet Faith:

Hi, I’m Faith. I’m currently living back in my small hometown, and I recently graduated from college. I have a lot of time to fill my days with random stuff– reading, shows, music, & hanging out with people.

Some more about me:

I don’t have my colon and when I was young I was given the nickname “Frogger” because I would toot when I laughed. I like to try cooking different foods as for a while I led a vegetarian diet. I enjoy sewing (most experience making quilts), and I also just like to be outside doing whatever (in the ideal world– gardening or biking).

Current Symptoms:

Mucus

From Pancolitis to an Ileostomy

I was diagnosed with Ulcerative Colitis this past summer in August (2012). My symptoms of mucus, blood, cramps, and urgency started in July (2012). They progressed after I started taking the antibiotics, cipro and flagyl. I wound up with the C. Diff. infection. I was given more flagyl. I couldn’t keep anything down and became very dehydrated and was hospitalized for my first time. In the hospital I had a sigmoidoscopy and was told I had UC. I started on Asacol along with Presnisone, vancomycin, and stomach acid pills. I found myself in remission– no more blood in my stool. Then in November another flare-up began and I lost even more weight than my first run around the block with this disease. I was hospitalized again and had another sigmoidosocpy. I definitely had pancolitis. This time the Presnisone was not successful at stopping my inflammation. I had my first blood transfusions, because I became anemic. I was put on TPN as I was quite malnourished because everything I consumed hurt me and came out right away. I was in the hospital for a 11 days and transferred to another hospital to have an emergency surgery- the surgery to remove my entire colon, since I had signs of toxic megacolon developing. Basically, I had the choice of removing my colon and getting an ileostomy or death. Of course I chose to live an alternative life than continue to suffer and die.

I felt so relieved after this surgery and happy that I could begin recovering. I want people to know that having an ileostomy or ostomy is NOT the end of the world. I feel so great now and feel like I was given a new life.

My life has changed from this disease by learning more about myself and what I want out of life. I think the disease really teaches you to appreciate the days you feel good and not take for granted things like eating and not feeling fatigued.

I would like to hear from people who have had the J-pouch surgery done, like how long their recovery was, how long it took them to feel comfortable going out of their butt again, and what complications I might face down the road…I want to know anything about people’s experience with the J-pouch.

I am going through the 3-stage surgery process. My first surgery just got rid of my colon, because it was so toxic and had barely any lining left. My second surgery will be removing my rectum and making the J-pouch. My third surgery will be taking down my ileostomy.

p.s. I have been open to everyone about my ileostomy, even though it is easy to hide from people, because I want people to know what this disease is and all that it entails.

Medications:

I am weaned off Presnisone! I take an iron supplement and a daily multi-vitamin.

written by Faith

submitted in the colitis venting area