I am 31 years old, mommy of two lovely girls. Diagnosed about 6+ yrs ago. I love cooking and spending time with my babies, boyfriend and family. Going to the beach is cool…assuming there is a toilet nearby ;) I live near Detroit, MI with my boyfriend, two daughters, dog and three cats.
I am currently in a flare. Just left hospital last week..severely dehydrated and anemic. Pooping like crazy, lots of bleeding too. Now that I am home, my symptoms have improved a bit, not as much frequency, but man, when I have to go! It’s like, right now. I am so tired and achy all the time. My joints and muscles are constantly on fire, sore, stiff, fatigued. Everything I do feels like a big chore. Simple things just take the wind out of me. I have difficulty sleeping, partly because I am so sore, but also because I am getting up 5 or so times in the night for the toilet. Yay!
It’s difficult to remember what my life was like before this f’d up disease changed my world. People have said that I used to be a free spirit, so carefree and upbeat. I’d like to think I am still that person, but feeling crappy all of the time makes it difficult. Although I haven’t lost my sense of humor. Laughter gets me through the day, at times. But depression eventually sets in and it can be easy to develop a ‘woe is me’ attitude. Why is this happening to me? What have I done wrong? When is it going to end?
I feel anxious, irritated and unsettled most of the time. Anxious about where the nearest bathroom is…will there be a line? Will there be that idiot who makes a smirky comment at my explosive BM? So embarrassing. So the best solution during a flare? Stay home, with the safety of your toilet and a change of clothes nearby.
SO it all seemed to begin in 2006, just after my second daughter was born. I had a pretty enjoyable pregnancy, felt a bit more tired than the first time around, but managed just fine. I suffered from extremely painful hemorrhoids after the baby was born and eventually had a hemorrhoidectomy since I couldn’t sit n my bottom. It was so painful. Add to that the chronic diarrhea, and voila! I got a blood infection. I was in ICU for about a week, getting blood transfusions, IV antibiotics and god knows what else…it was awful. And they told me I have UC…I had no idea what that meant. I eventually got better, and…
I’ve pretty much had a flare every year to year and a half since then. Since 2006. Some have been short and easily controlled. Others have left me bed ridden for months, unable to walk, take care of myself, my children. Absolutely devastating being a formerly active Mommy of two wonderful loving girls, and not being able to pick them up for a cuddle. :( Now that the kids are older, they’ve come to understand what ‘Mommy is sick” means. They take good care of me. I’m so fortunate to be surrounded by so much love…including my wonderful boyfriend, who is so understanding, patient and sweet about it all. I’m not sure he knew what he was getting into when we started dating almost two yrs ago, but he’s really been supportive, and I am so grateful to have him in my life.
The thing I worry about the most in the future is being in the same boat I’ve been in…or worse! Colon cancer? Toxic mega colon? Yanking my colon out? I’ve always tried to avoid taking medications…Prednisone is evil evil evil. Asacol comes out the same way it went in. Colazol doesn’t help much either. Imuran made me deathly ill (bed ridden 5 months.) C-diff was pretty bad…both times! Vancomyacin helped with that eventually, but I took it for months and it made me so nauseous. I have been to chiropractors, acupuncturists, yoga, naturopaths…and have found that holistic healing is the best route. But this flare came out of nowhere land and I am a bit confused about it. Maybe I was becoming too lax on all of my diet and supplement needs.
I’m also worried my kids are going to inherit this nightmare disease. I wouldn’t wish this on anyone.
I want to ask the UC ladies out there…does anyone have issues with their periods? Has your cycle changed? I’m wondering if UC has an effect on this area as well.
Where I’d like to be in 1 year:
In a year, I’d like to be able to take the dog for a walk and not be worried I’m gonna poop on someones lawn, or pass out from exhaustion. I’d like to be able to go on field trips with my kids, on the bus! And not have to starve myself for 24 hours in advance to avoid poopong my pants. I’d like to go on that planned trip to the Philippines with my boyfriend, that we had to cancel because of this flare up.
I haven’t had much luck with meds.
Prednisone- nasty mood swings. Severe swelling of body, mostly legs, feet ankles. I have stretch marks on my feet to prove it.
Asacol- ends up in the toilet.
Colazol- not much improvement.
Imuran- horrifying to even think about.
I have had the most scary, frustrating side effects from so many of these medications, and to me…it’s just not worth it.
submitted in the colitis venting area