My name is Natalie. I live in Ohio and I am married with 3 beautiful kids. I was diagnosed with U.C. while 6 months pregnant with my second baby and 20 years old. I have been living with this disease for 7 years now. The doc says I have an unusually severe version and I still have rough days despite having 3 surgeries, but the point is to adapt and educate yourself as much as possible. I mostly kept this to myself, but have decided to take this step to let it all out and finally stop hiding from U.C.’s ugly face. I can’t control this disease or diagnosis, I haven’t inflicted this either; I refuse to let u.c. run my life.
My Colitis Symptoms:
Despite having 3 surgeries and “pouchitis” as a result of those surgeries, I still have frequent flares. I was unsure if it was even possible to still have u.c. since i have NO large intestine, but apparently it is very possible. I have all the symptoms I had before my surgeries HOWEVER it is an entirely different level of symptoms. I can tolerate my symptoms now. I can live my life- it’s just a hassle. On a good day I might only go to the bathroom 7-8 times, but a regular day is about up to 12 times.
I am constantly dehydrated and drink water as if I had a leak somewhere. Drinking water is a very important part of my maintenance.
When I was diagnosed with U.C. I was 6mo pregnant. I was in shock. I didn’t fully understand the diagnosis or how severe it was for me. I was underweight, losing weight, my baby was under weight and my ob wouldn’t listen to me that something was wrong. I didn’t have hemorrhoids like she was insisting. By the time I got to my family doctor my hemoglobin level 4.9. Being pregnant, the docs were concerned my baby was even alive, let alone how i was walking around. In one hours time I went to the hospital and it had dropped to 4.7. Once I realized i had to go to the bathroom- it was a race for time.
Weeks in the hospital, 6 transfusions, and 27 pills later i made it home. I finished my pregnancy and had a massive little boy. The doc said my symptoms should greatly decrease within 2 weeks after I gave birth, since pregnancy increases the symptoms. Unfortunately, my symptoms quickly worsened.
3 Remicade treatments later, a crazy amount of steroids and meds and my doctor decided surgery was my only choice. I had lost a lot of continence and I was literally sleeping on the floor in the bathroom. I had a nurse coming in around the clock and with a newborn and 15month old I was really struggling.
The prep for the surgery was awful. I still, to this day, cannot tolerate anything of the orange flavor. I actually messed up and thought I only had to prep 2 days before the surgery, opposed to 1 wk before. Well, I had pizza the day I Was supposed to start my clear diet. I was not about to tell me doctor to put off the surgery. I needed this and I was willing to reap the consequences. I vomited and was in the bathroom the same amount as I was without the prep so that didn’t change any.
From the moment I gave birth to my son, to barely under 6months later, just days before the surgery date I had lost 79 lbs. I was sick and looked emaciated.
The big day came and went. I was able to deal with the pain, but I had some difficulties during surgery and ended up in the PICU for a few days. I was supposed to be getting up and walking around in just one day. It was crazy. I also had the ostomy now and learning to care for that was terrible. I didn’t care about the messiness, but the way my stoma came out it constantly leaked on my stomach and burnt my skin all the time.
3 months later I had my ostomy reversed. I had never been soooo happy! I was a different person. I loved it. I still had a certain pain in my stomach though. IT was very strange. I had to take Zantac every time it happened. Within 10 minutes it would normally disappear. However, it was a severe pain. 14 months following my ileostomy reversal surgery I was at school and got the same pain. I passed out in class and was rushed to the ER. I had a full bowel obstruction because I had overgrown scar tissue. It was definitely a shock. The pain is gone now, most of the time.
I still have serious issues. I still can’t eat a lot of fiber, sugar, chocolate, no caffeine. The surgeon says I still have a very sensitive stomach and to be careful. I work out all the time and try to eat the best. Sadly, I put on a lot of weight following my third surgery.
Where I’d like to be in 1 year:
In one year I would like to manage my amount of bathroom trips by being much more conscience of what i am eating. I know that what I am eating has a great impact on my body and sometimes I don’t realize how much I am attacking an already sensitive part of my body.
I would also like to have lost 40 lbs at the least.
I currently take 8 Lomotil pills per day
I’ll be quite onest and say that I don’t remember all of the meds that I have taken for this. I do know I have taken several, a lot of steroid meds, and I have taken the Remicade treatments a few times before having my first surgery.
written by Natalie
submitted in the colitis venting area