Some of you may remember a while ago I shared with you all Debbie’s Story and the response was so good I’ve had another lady, Anita, who has been so generous in sharing her story. It’s so important to show that everyone with an ostomy/IBD/any chronic illness has got to where they are in different ways and sharing experiences can be so beneficial in dealing with your own diagnosis! So, without further ado, here’s Anita’s story.
Hi everybody my name is Anita and 5 years ago I was a healthy ( or so I thought) 28 year old. It all happened so fast and unexpectedly. So here is my story of survival.
It was a typical busy day at work when out of nowhere I passed out. Of course my boss made me call a friend to bring me to a dr to get checked out. If only I knew at the time how much my life was going to change.
While at the clinic waiting on my bloodwork to come back I see nurses rushing around saying they had an emergency with a patient. All I could think was oh that poor person. I soon found out that person was me. Apparently I was severely anemic. I ended up needing 3 units of blood and my liver levels were also elevated. Of course nobody could figure out where the blood went cause I never saw any at anytime and they figured my liver levels were just high cause my body was going crazy from the loss of blood. I stayed a night in the hospital and the next day I was sent home without having any tests ran on me. I went see a family dr and of course my bloodwork was fine a week later so of course they said I was fine.
For the next 6 months, everything was great until one night I went to the bathroom and there was blood. Suddenly lots of questions were about to be answered. After a weekend of not being able to eat or drink anything I’d become really weak so my mom brought me to the E.R. At first they thought it was food poisoning until I told them enough times that wasn’t possible because I hadn’t eaten in three days! So finally my dr shows up and tells me they think I have Crohn’s.
I was admitted and they found my levels were out of whack and my liver levels were once again elevated. So the tests started and that’s when I was told I had Ulcerative Colitis. I had no clue what it was so I started looking into what it was/ The next day I was told that as well as this, I also had liver damage; my liver valves were damaged as well. Never in my life was the health of my liver questioned and my lifestyle wasn’t the kind to have caused any damage to it. I was told that I would need a new liver in the next three years and I was referred to a great liver specialist/GI up state to have both of my illnesses further looked into. My mom ran out the room in tears and all I could do was just sit there in complete disbelief of what I had just heard. Plus the U.C. to deal with also was just mind boggling.
I was diagnosed with Budd Chiari Syndrome which causes blood clots in your hepatic vein going to your liver. It’s very rare and the only cure was a transplant. I was told that my U.C. was on the back burner in terms of importance compared to my liver. If only that was true.
In the midst of going through seeing different doctors and trying different diets which wouldn’t effect an element of my health, I was told me I could no longer work and I had to go on disability and I just couldn’t accept it. I felt like my life was over as I had to move back in with my parents and leave my home and friends of 11 years behind. Granted I was only an hour away but it still wasn’t the same. After a few months my body went back to what I called normal. My U.C. was quiet and so was my liver. So I felt like I could go back to my somewhat normal life at the time.
One night I just felt so sick and could barely walk to the bathroom and I had to sit on the couch with my pj pants at my ankles cause I couldn’t stand long enough to pull them up. So at midnight I call my mom crying telling her that I needed to go to the hospital. My dad got to me first, my mom was coming in her car after she packed a bag to stay with me in the hospital. My dad had to pull my pants up for me! I was mortified and so ashamed. Finally we get to the E.R. After the dr saw me and ran bloodwork he told my mom that he was having me transferred to a better equipped hospital to handle my problems. It wasn’t far just the next town over. I was in ICU for a few nights. Before I was moved to a regular room my G.I. Dr came see me and said that if they couldn’t get my U.C. under control that surgery was going to be his only other option. I didn’t know what to think. Just the thought made me even more determined to get healthy.
After 19 days I was able to go home. It was Christmas Eve and I was determined to spend the holidays at home. When I was admitted I weighed 120lbs. I went home weighing 200lbs, 80lbs of fluid. My G.I. doctor told me he was still leaving my fluid pills on a low dose and I would have to work to get the fluid off. I was not happy at all! But I see now it was for my own good.
About a month later I was back in the hospital for five days cause of fluid build up so they had to drain me. Luckily by this time my U.C. was settled down. After they drained me it seemed like the remaining fluid was coming off quickly. I was finally feeling normal again.
My first long stay in the hospital kept on me to get back to Ochsners because my liver wasn’t in good shape. Once I was finally able to travel, I started going see a new liver doctor there. I can’t express how awesome she is! She made me feel so cared for and was ready to help me however she could. So that meant referring my to the transplant clinic.
A couple months had passed and I was back to my somewhat normal weight. I had lost ten extra pounds which I was ok with. I was feeling somewhat better and being monitored closely by my local G.I. doctor and my liver doctor at Ochsners. While this is going on that mention of surgery was still haunting me so I decide to start educating myself just in case. I joined some very helpful groups on Facebook and found some great websites on ostomies and jpouches.
On April 9th my mom took me to the E.R. cause I wasn’t feeling good and she was worried I might be dehydrated. So we had to wait on bloodwork and all that stuff. I was just ready to go home. Well finally the E.R. Dr walks in and tells me he is admitting me cause of my INR. It was 9!! The normal I think is 1.5 he was concerned about me cutting myself and bleeding out plus the other health factors. So here we go again. As the next couple days went on I was feeling worse. I didn’t even want to eat, which for me is odd cause I’m a eater.
The Saturday after I was admitted it was the 12th I felt really bad. That night I went to the bathroom and the last thing I remember is telling my mum to call a nurse because I couldn’t stop going to the bathroom. I slightly remember waking up in ICU while a nurse was putting a catheter in. I woke up slightly again laying in a bed in some type of room while my mom was talking to a nurse. Once again I woke up still groggy a day later and felt weird. I looked and there it was 27 staples down my belly and the bag. I knew what had happened. So I said o ph well to myself and went back to sleep.
I finally woke up on the 15th more alert and ready to hear what happened. My colon had a tear in it and was about to burst in me. So emergency surgery it was. As soon as they removed it, it burst still kind of in me. So they had to clean me out. They said it looked like someone had taken a cigar and burned holes all over my colon. They had told my parents I would be on the ventilator for a few days so my body could rest cause my liver had taken a serious punch from the anesthesia. My recovery after the surgery was very skeptical. Me living was very skeptical. I ended up not needing the ventilator like they thought but told my mom I would be going home with drains and tubes in me. So when she walked in that Wednesday afternoon and after days of me just laying there she was surprised to see me sitting up, eating, and no tubes or drains in me. My G.I. Dr came in with her and told me that he had been in touch with my dr at Ochsners and they were both amazed at my recovery. When my dr left my mom told me until and after the surgery he never lost hope. He was at the hospital constantly and had the best people to do the surgery on me. She told me that he refused to let me die.
Towards the end of May I was finally called for my transplant evaluation and that;s when reality kind of hit me. It was summer time and I was stuck home with this bag. It was getting to me. I found myself feeling hate towards my friends for no good reason. It was mostly jealousy. They were enjoying their summer and here I was home with my bag, who I named Harvey after a friend suggested it instead of me saying my bag all the time. The depression was taking a toll so my doctor suggested happy pills. I wasn’t very fond of the idea but I needed something. Sitting home was getting to me.
Weeks passed and finally I got the letter. I was on the transplant list! This weight had been lifted off my shoulders. I felt a sudden sense of relief knowing that after my transplant possibly years down the road. My life would be normal again.
It didn’t take long for my bag to become just a daily routine for me. I’m excited now to look through an ostomy supply catolog and to get free samples in the mail is so exciting to me. Of course I still have bad days but everybody does healthy or not. This stoma is a part of me and is the reason I’m alive and I’m not ashamed anymore to have it. Like I said before a great support system is very important.
There are so many people out there like us. Famous and not famous. A sickness doesn’t care if you are rich or poor. Famous or not in the end we are all alike. If you are scared that you are the only one don’t be I’m not anymore. Cause I realized that there are people with the same problems as us. The groups I’m in on Facebook are wonderful. Great support from people who fully understand what you are going through. Don’t ever be ashamed of scars. They are a sign of strength and your survival not weakness. If someone snubs you cause you are different just imagine their insecurities. Different is wonderful and it makes who you are. So enjoy life and smile cause you can go through a whole movie now without 10 bathroom breaks!