Hello, my name is Alysia and well my life consists of A LOT of Pink, small toys to step on in the middle of the night, and diapers! I am 25 and the mother of two beautiful girls. Sophie is three years old, and Scarlett is eight months old. When I am not changing diapers, and having tea parties I am doing part time book keeping for a local church. My family and I live near the beach which we visit a lot during the summer season. We try to get the kids out often so we usually attend places like the beach, or the park, I am a huge fan of Disneyland myself, and I love love love snowboarding!! We also like to go bike riding, and taking our newly adopted dog on walks. We are a very family oriented group so we also spend a lot of time with our extended family and my In -Laws. I try my best to stay positive and look at my glass half full because we never know when we could use a good drink!
My current UC symptoms have actually started to die down a bit, thank goodness! I am still going about 2-3 daily. I have semi bloody stool and mucus when I go. I continue to have moderate to severe cramping in my abdomen which I have pretty much just gotten used to at this point. In the past couple weeks has it only been this easy going I would say.
I was finally “properly” diagnosed after my Colonoscopy in June of 2012. Before that I was experiencing symptoms of a Colitis flare up right before I found out I was pregnant with my second child. I was experiencing severe bloody, loose, and mucus stool. I can’t even really call it “stool”. Not to be graphic but it was more like soup! I thought that I may have gotten food poisoning from somewhere because the smell was so fowl, and I actually pooped myself a few times. I was so embarrassed to go ANYWHERE!! To add insult to injury I was vomiting as well due to my pregnancy. Believe it or not the ER did not catch that I was pregnant at the time of my visit, and pretty much told me that I may or may not have IBS. They prescribed me Flagyl and Cirprofloxacin. So I start taking these new meds and about a few weeks later I find out that I am pregnant. The symptoms were calming down a little bit thanks to the medication and my very bland diet. Once I found out I was pregnant I just thought it was the baby throwing my body of whack and didn’t think much more of it.
I want to say that I was about three or four months pregnant when the symptoms came back!! All I could think about was “ARE YOU SERIOUS” and was super pissed at my body. I had just started a new full time job while my boyfriend went to school. So with a three person family to support I literally could not afford to be sick at all. I ended up at the ER once again. They told me that I was extremely dehydrated and the placentia was low. However they did not tell me that I had any other issues and merely gave some medicine for my nausea I was experiencing, and sent me on my merry way. For the remainder of my pregnancy things perked up. It was smooth sailing from 6 months of pregnancy until Easter of 2012.
My In-laws and my family went to Disneyland on Easter 2012. It was a great day; we had park food which is not great but not that offensive in my opinion. That night when we got home I was experiencing some heart burn but nothing else. At around 5am is when the “Shit Storm” hit me, literally!!! I was up vomiting out of both ends quite violently I might add for a few hours. It was the beginning of my flare up I think. I have been flared up ever since that morning. I went through diagnosis of IBS, Giardia, and I think the Flu before I was diagnosed properly. I had to go to Urgent care about five times before I even got a referral to see a Gastroenterologist. Meanwhile at home I am practically bed ridden when not on the toilet. I was still eating a lot of food because I was trying to keep my nutrition up so I could nurse my youngest. So I was on the toilet, in bed, or nursing. What A Grand Life It Was!!! Everyone is telling me that I am not getting enough Fiber. Fiber , fiber, fiber. I swear if I hear that word again it will be too damn soon! I was going to the bathroom on average 9-11 times a day. I was so angry to be 25 years old pooping myself!! Again embarrassed and in terror of going ANYWHERE! UC has taken a huge toll on my life, my stress level and my overall state of being.
After my colonoscopy my Doctor said my entire colon was severely inflamed. The pictures he gave me were super gross! He gave me a Prednisone taper starting at 40mg for 7 days. Ya know standard procedure it seems. That didn’t work. He then gave me another prednisone taper at 40mg for 10 days at a time tapering down to one for 10 days. That didn’t work. I then tried Colozal and Prednisone. The Colozal I found out increases Migraine activity if you are already prone to migraines. So here I am swelling up like the girl from Willy Wonka due to the prednisone, my body aches, and I am having debilitating migraines due to the Colozal. My life is grand. I am still going to the bathroom on average 3-6 times a day. Finally the doctor gave my 6MP which I am reluctantly taking because I cannot nurse so I am told while on this medication, I am also doctoring that with Apriso, and another Prednsione taper.
So here I am today functioning to the best of my ability but still in a lot of pain, and still very nervous when I leave to go out in public. I live in complete fear of pooping myself in public. I really need some therapy over this. Believe it or not, that was my story in a Nut Shell.
Where I’d like to be in 1 year:
In a year I would like to be mainly out of pain physically, and emotionally. I would like to have regular bowels again, and not constantly be worried if I am going to poop myself in public. I plan on having an established therapist to talk to and a more concrete support system, and not in the Brown and Red zone.
Colozal- The WORST. woke up with migraines everyday, and insomnia
Prednisone- Terrible. swelling, body aches, and insomnia
6MP- Awful. Cannot nurse while taking this medication. Super sad :(
Lialda- received the prescription but could not afford to fill it. $700 with coupon card. Blue Shield insurance can suck it!
written by Aly
submitted in the colitis venting area