I am 41 yrs old and live in the south; close to New Orleans, LA. I am married and have an 8yr old son; who is everything to me. I was diagnosed with UC in 1994.
Some more about me:
My favorite thing to do is read. I read everything and everywhere. It’s the perfect place for me to escape my own mind for a little while and it relaxes me. I love board games and video games that the whole family can play together. I love spending time with my son. I love the internet. I also love coloring…always had since i was a kid, especially when i am sick in bed. I have a whole bunch of scrap-booking stuff and pictures, all ready to be put together, i just get so overwhelmed when i think of starting. I have 9 years to catch up on. I love watching tv and listening to music.
I am currently in a flare (since late October). Last scope was last month. My entire colon is inflamed, I have proctitis, a fissure and hemorrhoids. Having terrible stomach cramps, diarrhea, gas, nausea, lots of blood (mostly from the fissure). I am exhausted and have very little energy. It takes all i have to make it to work everyday, by the weekend all i want to do is rest, but then nothing else gets done I and i miss out doing things with my family. . Oh and I also have migraines. When I am down with my UC those migraines love to pop up.
I have had symptoms of UC since high school. When I went to my doctor at the time with blood in stool, he actually thought it was my fault (or my boyfriends/now husband) and that i had a tear which was causing the blood. We were 16 and definitely weren’t doing anything that would cause a tear. No tests, no nothing. Especially no dx. I never went to him again. In my early 20’s I started having symptoms again but much worse. I was pointed to a gastroenterologist and given a dx of Ulcerative Colitis immediately following a colonoscopy, even though she told me before the scope that she was pretty sure I had UC. Since then, I have seen quite a few different GI’s (including one who made me cry by refusing to believe i was taking my meds as directed and told me i could die) until I finally found the right one a couple of years ago. I travel an hour to see him and it is so worth it.
Stress plays a major part of my flare-ups. This recent one I have been dealing with layoffs at a state run hospital I work in. The lay-offs happen about every 4-6 months and finally in the coming months, we will be bought out by the private sector. Everyone will be laid off and we will all have to reapply with the new company for our jobs, knowing they will not need all of us. I am on intermittent FMLA, which means my job stays safe when I have to be out due to UC issues. When we are all let go, I will lose my insurance. Then I will have to try and find a job in my little southern town where it wont matter if I have to excuse myself to the bathroom suddenly at any time. That rules out a lot of jobs.
Of course there are always other stressors including several family members who are very sick, etc. There always seems to be something to worry about and I am definitely a worrier.
My diet is a big issue right now also, I weigh more now than I did during my pregnancy. It seems the only things I can eat that do not hurt my tummy are fattening. I try to exercise but don’t usually have the energy.
Sulfa drugs were quickly ruled out when I broke out in a rash. There have been so many meds since I have been dx’d, I feel like a guinea pig. Asacol worked for a very long time, until it didn’t anymore. I remember trying 6MP which made my liver levels out of whack. I took steroids off and on for years. I am now on Lialda, max dosage. My latest flare started last October but I tried to self treat with retention enemas, suppositories, etc. that have usually helped me cut a flare if I caught it early. Earlier this year I gave up and went to my doctor. After the colonoscopy, he came into the room and was talking about options…surgery, biologic drugs, etc. I think I went home and cried the entire weekend, then I started scouring the internet for answers and info on these “options”. I didn’t like what I found…..surgery doesn’t seem to be a cure all and comes with its own complications. The biologics scared the crap out of me, especially when I told my sister that it listed a slim chance of lymphoma….what are the odds that a lady in her church took humira and got lymphoma and died. I went to my next appt armed with all this info and practically begged him to put me back on steroids. I hate them and their side effects but at least one of the side effects of steroids is not death. He agreed and so here I am, armed with prednisone, canasa suppositories and nitroglycerin cream. That cream worked wonders on the fissure but still having UC issues. I’m afraid maybe he didn’t starts the steroids at a high enough dose (we went with 20 a day until i see him again next week). I’m afraid of higher dosage, I already feel moody, psychotic, and you know, all the other things that come along with steroids. I just yelled at my son. I never yell at my son, I feel terrible.
written by Lisa
submitted in the colitis venting area