Ulcerative Colitis

I figured I had better do some damage control before the rumor mill gets people confused about my diagnosis. I just want to make sure that accurate information is out there. I don't want anyone freaking out or worrying too much, or what have you, so after a lot of thought I figured I had better get it out in the open a little. Anyone heard of Ulcerative Colitis? I hadn't until I found out I had it. And who knows maybe this could get people who have not had colonoscopies done and should a little incentive to GET TESTED! (This is where things may get a little yucky, so If you have a weak stomach or potty talk is just too much info. for you, you may want to stop reading about here.) I had some digestive problems for the last few years, and recently had diarrhea for 2 months with blood and mucus and no end in sight. I'm very slow to go to the doctor, but with our trip coming up, I knew I had to get that resolved. No one should be in Europe with diarrhea. Sorry this is so gross. But it is what it is. I don't want to skimp on the syptoms and risk someone experiencing anything similar any doubt in getting checked out ASAP. What finally convinced me was a girl on Oprah who came on the show to thank her for a show she did with Doctor Oz which convinced her to get checked out after having bloody diarrhea, and it turned out she had colon cancer.
Anyways, got the colonoscopy and they found a few polyps but they were not cancerous. After hearing that I thought I was in the clear, but after my follow up visit my world changed a whole lot. I learned that I had moderate Ulcerative Colitis (moderate means it has affected about half of my colon) with low grade dysplasia. Ulcerative Colitis is a chronic autoimmune disease where for some reason the body attacks it's own tissues. It causes inflammation and ulcers in the lining of the colon, causing it not to work correctly. The low-grade dysplasia means that the cells in the diseased areas are beginning to become abnormal it is not cancerous but can often become cancerous. So they have to watch things very carefully. My doctor was very concerned that dysplasia was present after only approx. 2 years (we're guessing) of having UC. They generally do not expect dysplasia until you have had UC for at least 8 yrs. So due to the speed at which the cells are becoming abnormal they will do another test in 6 mos. to see if it has progressed to high-grade dysplasia at which point they will likely remove my colon, or the portion that is affected. Fortunately, I guess the treatment of UC has changed dramatically in the past 5 years. It used to be that once any dysplasia is discovered at all they would remove your colon due to the cancer risk. Now they will just watch very carefully to stay ahead of abnormal cell development and wait until high-grade dysplasia is detected. It also used to mean that if your entire colon was removed you had to deal with a colostomy bag for the rest of your life. However now about 70% of people have had success with a new procedure that fashions a sort of mini colon out of your lower small intestine meaning after 2 months with a bag allowing things to heal you can have this procedure done, and just have watery bowel movements about 6 times a day. Unpleasant yes, but it definitely beats the bag! So I am very grateful that treatment options have improved so much recently, and I'm grateful that only half of my colon has been affected. The disease starts near the rectum and then progresses upward, there are not patches of the disease here and there. Also on a positive note UC can be cured by removal of the colon granted enough is taken and any areas of cancer have not spread to other organs. The only part that still freaks me out a bit is that my doctor said it is not feasible to test every area of the colon they can only take samples in a grid type pattern, there can still be areas of high-grade dysplasia or cancer in-between the areas they take samples from. He said he sampled and sampled until he was worn out from sampling during my colonoscopy and I remember waking up to a counter top full of 20-30 bottles that I didn't remember being there when I went under. From the research I have done people with UC have very good chances of survival and early cancer detection due to close observation. Typical symptoms of UC are abdominal cramps, headache, fatigue, joint pain, diarrhea, dehydration, excessive weight loss and malnutrition. Unfortunately I have not experienced excessive weight loss. It would be my luck not to have the only symptom that I would actually like to have. It has been pretty overwhelming dealing with such news at 32 (it is typically found between 50-70), but I am truly grateful that things were discovered relatively early (not early in life but early in the disease). They have me on about 4800 mg of Asacol (an anti-inflammatory medication) a day, and a slew of supplements, and I am feeling pretty much back to normal. So I have about 4 mos. before my next colonoscopy to check the dysplasia. Then I will continue to have annual colonoscopies. We are starting to get used to the idea more everyday. It doesn't mean I don't have my moments of WHY ME, but things could always be worse. I was given some pretty incredible promises through one of the most amazing answers to prayer I have ever experienced. I was having a particularly low couple of days and spending way too much time on the computer researching the disease (I think the Lord made my computer get a virus just to make me chill out a bit, there's some scary info out there meant for doctors eyes only)(am I using parenthesis enough by the way? Sorry I'll stop). After a lot of prayer, I kept getting the impression repeatedly that I really needed to read my scriptures. So I finally did and after randomly opening the book and glancing through 2 or 3 verses I just could not believe what I was reading. I have never had the scriptures seem as though what I was reading was written so precisely just for me in a place I never would have expected. In Alma 24:14 it reads: "And the great God has had mercy on us, and made these things known unto us that we might not perish; yea, and he has made thing things known unto us beforehand, because he loveth our souls as well as he loveth our children; therefore, in his mercy he doth visit us by his angels, that the plan of salvation might be made known unto us as well as unto future generations." I just knew that those words were coming directly from the mouth of the Lord to me, and that I will be okay, this was not going to end my life, and take me away from my children. My biggest concern was the thought of not being able to see my kids grow up, or maybe see my grandkids. I hate feeling so down sometimes because I know there are people out there who are way more entitled to tears than I am right now, and they are so strong in the face of things so much scarier! It is just inspiring. Hayley, Travis, Tara, you know who you are. So for now it is mostly the uncertainty of how fast the dysplasia is progressing that freaks me out from time to time. Symptoms are pretty much in check. I do however hold out the hope that low-grade dysplasia can be very difficult to diagnose during an active phase of the disease and it takes very experienced pathologist to determine indefinite to low-grade or high grade dysplasia. Many pathologists differ in their diagnosis of the samples, so maybe I am indefinite! I never wished to be considered indefinite before, and negative would be even better. So in your prayers remember to pray that I will be negative(sorry just trying to find some bit of humor, and double sorry for the parenthesis again)! I am the eternal optimist.