Coping | IBD
My name is Tricia Sipsy; I am currently 17 years old and a junior in high school. This is my story.
When I was in 8th grade, in 2010, I was continually sick. I couldn’t eat without getting sick and I was miserable. I went to the doctor and they diagnosed me with ‘a nervous stomach’ and a spastic colon. I received medication for that for months. Well, for around 3-4 months I had been bleeding in my stool and, being the private scared 13 year old I was, didn’t tell anyone. On my 14th birthday in November, I went shopping with my mom and sisters, and we had to cut our trip short because I couldn’t walk I was to weak. I went to the doctor and had to do a stool sample, I continually dumped it out because I didn’t want anyone to know what I had been hiding. Finally I had to tell my mom. She rushed me back to the doctor and they sent me to the hospital immediately. This was on a Monday. When I got to the hospital the doctors really didn’t know what was going on. They didn’t give me anything to eat OR drink (note: I had barley eaten the whole month of November). They told me I had salmonella. They quarantined my room, and still hadn’t let me have anything to eat or drink and it was now Thursday. My mom was about to take me to a different hospital when my doctor came in and asked if we wanted to see the GI specialist from Atlanta. So he came in to see me and in five minutes I had a diagnosis. He said I know for sure it’s either Ulcerative Colitis or Crohns so he sent labs off that came back positive for UC. I stayed in the hospital until Saturday. Now how on earth was a 14 year old suppose to cope with that news? What was I going to do? When I left the hospital the doctor had me on my first medicine, which of course was a failure. It made me even more sick. So, within the first month I already had to change medicines. During that time I had to have a colonoscopy and an endoscopy. Part of the colon looked odd to my doctor so he sent it off to check for cancer, thank god it came back negative. But he did say I definitely had ulcerative colitis but at this point in time it was only in the top left corner. Well the second medicine seemed to be working after all that, my freshman year I was great. I wasn’t hospitalized all year. Then my sophomore year, I took a turn, I was hospitalized the week before my 16th birthday. My doctor always told me, ‘If your disease is going to get worse it will around the two year mark.’ And guess where I was? The two year mark. And it was getting worse. I had to start new medicines. When I got out of the hospital that time, I was taking 9 different medications; one of which was 6mp, an old cancer drug, which could have damaged my pancreas, liver and bone marrow. So I had to get my levels checked often. That medicine made me really sick too, which is when I went on home bound at school. Because some morning I just couldn’t stop puking. One day I decided I was going to stop my medicine. I was tired of being sick. When my doctor found out he told me that there were only two medicines left. So my mom and me chose home shots. I started these shots at one every two weeks along with one of my old medicines. Worked for a little bit, while I was still on steroids (which I’ve lived off of since I got diagnosed). Then summer of 2013 I got strep throat and I had a bad flare up which put me in the hospital again. I had to have a blood transfusion this time because my hemoglobin was down to a 6 where it’s suppose to be about a 13. After the transfusion my hemoglobin went up to a 9 still not good but better. We uped my dosage on my shots, so I was taking a shot every weekend. And I come off all of my other medications. After I got out of the hospital I asked my doctor to put me on Lexapro because of my anger and stress problems, which of course didn’t help. But I took it anyway. I finally decided in October 2013 I was going to have surgery to have my colon removed. I was tired of being sick. My surgery was scheduled for November 4th 2013. Here comes the big part, the morning of my surgery when I was getting prep’d I found out I was PREGNANT. So I didn’t get to have the surgery. My doctor took me off all my medication that could harm my baby, and we were just going to hope for the best. Well after only ten days of knowing about my sweet miracle, I miscarried at 8 weeks and 3 days, on November 14, 2013. Talk about the stress that caused and the flare ups. After I was released from my OBGYN my doctor asked if I wanted to try surgery again. My answer was NO. So he did my usual blood tests which actually came back better than usual. My hemoglobin was at a 10 (better than it’s ever been!) My protein levels were good, but my inflammatory levels were high and my iron tests came back low.
Well, after that he set up for me to have a dexa scan to check my bone density since I’ve lived on steroids for 3 and a half years to see if my bones have started to deteriorate. That scan was the beginning of March 2014. My mom received the results the next day, but will not tell me what they are. I asked and all she said was, ‘They want you to go have more blood tests ran’ Therefore I knew, something’s wrong. I’m still waiting to have my blood tests done. But whatever the results are decide when I will have surgery. Because I will have to have surgery within the next 5 years. So right now it’s a waiting game. Over these three years I’ve lost so much self confidence. I don’t like I be away from home because I’m afraid I’ll get sick. I look at myself differently like I’m not normal, and I’m not good enough because I’m sick. But I know I am. I’m stronger than I ever thought possible. This is my story. And for everyone out there battling with this, you can do it. You’re perfect and beautiful. And people do understand. There are more people like you. You aren’t alone.
I was in a similar place as you, only in college not high school. I was diagnosed in 2008 which was December of my sophomore year of high school. However, my Crohn’s was managed very well until college with remicade. Anyways sophomore year of college, I missed over 7 weeks of school and was in and out if the hospital 8 times in just 3 months. I had surgery to get a temporary ileostomy and it changed ny life so much – for the first time in years I felt healthier than I ever had.. which took over and made me appreciate my ostomy instead of thinkig it was disgusting (which believe me, I did). But really, I know it sounds scary but it will give you your life back and you won’t be afraid to leave the house -,believe me I’ve been there too. Hang in there!
I am sorry you are going through all of this. Talking about is the first step to being in charge of your own life. I had to have half of my colon removed last December and finally getting some energy back. The doctors know more now than they ever did before. It’s a battle though. Hang in there and yes more people are in the same club as you. Keep in touch with your support network
Thank y’all. I used to be so embarrassed of my disease. But now I know it just makes me stronger. I’ll end up having surgery within the next few years. Just trying to put it off until after senior year .
wow..I had only two flare ups with UC and had my colon removed. I had a colonoscopy and they perforated my colon during the procedure. So I had to have emergency surgery. I had my colon removed oct.12 2013. I had my complete reversal on June 14, 2013. I have a j pouch now. I have done a lot of research on the digestive system, now. Have you tried any natural approaches to help UC?
I’ve never tried to eat ‘healthy’ or anything like that. I go on as normal as possible. I’ve never done anything except the meds the doctors have given me and half the time I never did those. But my blood tests come back okay. So right now everything is good ! No flare ups in about 3 months. Wahoo! I feel good besides my joint pains , other than that it’s the best I’ve felt in three years ! I’m staying away from surgery as long as possible because I have a feeling that god have me that angel and took it away so soon to stop he surgery. That was my sign it wasn’t time for surgery ! So I just go day by day and pray to god to help me. And it prove to myself how much stronger i really am everyday.
That is awesome I hope you continue to feel good.I hope you can save your colon. I would have changed a lot things if I need and had the chance to save mine.
Thaanks for sharing