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Ulcerative Colitis Personal Stories
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Snoopy Girl's Story
I am 36 yrs. old female and have been dealing with ulcerative colitis for over 10 years. It has been getting worse as I get older. I was also diagnosed in 2003 with PSC – Primary Sclerosing Cholangitis, a liver disease (auto-immune).
I had my gallbladder removed in June 2003. I also cannot eat the way I used to eat when I was in my 20’s. Not even close.
The UC is extremely annoying. My life seems to revolve around my diseases. The PSC is asymptomatic (I have no symptoms), but the UC is awful. Sometimes I find myself running to the bathroom whether I’m at home or work at least 4-5 times per day. It is mainly diarrhea and I explode. I have not had a “normal” bowel movement in a year. When I go out to eat, I make sure I know where restrooms are and prefer to be seated close by so it is convenient in case I need to make a mad dash.
Foods that aggravate my UC most are milk, ice cream, spicy foods like buffalo wings, hot sauces, and fried foods like French fries and onion rings (my favorite). I can’t eat tuna fish with mayo or else I’m in the bathroom 20 minutes later. It seems foods that aggravate my UC just run right through my body. Coffee, hot chocolate and colas don’t help either. If I drink apple cider or pomegranate juice they run right through me, and I cannot eat fresh fruit on an empty stomach ever.
UC performs no miracles for my sex life either. I constantly worry during sex I am going to get cramps and ruin everything because I have to use the bathroom. My husband is very understanding but things are not the way they used to be when we first got married 7 yrs. ago. It is because of the UC. Many times after dinner, I am in the bathroom and the last thing I want to do when I’m done is have sex. My husband has IBD so he knows what I go through. His IBD is bad too but he can control his IBD with proper diet – he chooses to eat foods he enjoys and pays for it later in the toilet.
Another major problem I am having is when I get my period. It seems my UC gets worse and I have rectal bleeding during the 5 or 6 days of my cycle. I have gone to the OB/GYN and they can’t do anything for me, and I have also gone to my hepatologist/gastroenterologist who says it is rare this occurs however, it is the hormones from my period that trigger the UC bleed. Therefore, I lose a lot of blood each month and am now anemic.
The UC has taken so much of my life away at age 36. I feel drawn out, old, and ugly inside. I never feel clean. I feel like I have to constantly clean myself and am depressed about having the disease. I hate it! I would rather be missing a limb than have to go through this on a daily basis.
I look at my healthy friends at work who can sit there and eat anything they want, they go to the malls, party, they don’t even think of restrooms and they have normal poops. When I tell them what I go through, they seem to alienate themselves and I feel like I have the plague or something. They cannot relate. No one can until they have the problem themselves.
With the PSC, it is an auto immune disease. It is not contagious – it is my body attacking my liver (bile ducts) which eventually scar up and one day I may need to have a liver transplant. When people hear I have a liver disease they automatically assume I’m a drug addict, a heavy drinker or I have hepatitis. I don’t drink alcohol, never did, and ran cross country in school and have always been athletic. I have no idea where the PSC came from. It just showed up in my blood tests in 2003 and I was in shock.
I have been taking 4 Pentasa daily (can’t take 8-15 pills per day, I get hives), I take fish oil (1,000 mgs), and milk thistle (400 mgs) for my liver. I take 1200 mgs. Of Ursodiol for my bile ducts daily. It is bear bile (bears don’t get liver disease so they derived this medication in China from bears - pretty interesting stuff).
Maybe one day they will come up with a cure. If they do, I’ll be the first one on line for clinical trials. It is an awful disease and I hate it. I am sure people reading this feel the same way. I wish I knew of a cure and I’d share it with everyone.
If you would like to write, my email is
Sincerely,
Snoopy girl
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