I was diagnosed with Ulcerative colitis when I was 14 years old. It took the doctors a couple of months to figure out what was wrong with me.
Since then I have been on prednisone several times a year as well as salofalk and imuran.
I am 20 years old now and I have recently found out that I have Crohns not ulcerative colitis - well actually I am in the middle of both because the doctors say that I don;t typically tick either of the boxes.
I have been hospitalized 4 times with c diff, influenza and erythema nodosum. Basically if my body can catch an infection it will.
I have never been in remission so my doctor decided to put me on remicade. I just finished the induction and I was feeling fantastic, it was the first winter where I didn't get a cold. That was until 3 weeks ago when I felt a cold coming on - sore throat, temperature, runny nose. That week I ended up with diarrhea and vomiting. I eventually went to the er and found out that my whole left intestine was ulcerated. I spent two weeks in hospital where I had my specialist and surgeon continuously telling me that I may be having surgery. I understand that if I have surgery I will fell 100 times better, but I still cant get my head around it. I am 20 years old, I should be living my life - not worrying about having a pouch strapped to my stomach. Those two weeks were the hardest as I had to weigh up the pros and cons as they believe the next time I have a flare, it will be life saving surgery. In a week before hospital I lost 6 kilos and with blood test showing that I was malnutrition, anemic, my crp was 288 and my white cell count went through the roof.
I was put on IV steroids, lots of potassium, blood infusion, flagyl and blood thinners.
My veins are bad on a good day but because of my condition they were even worse. So they decided to put a picc line in.
Everything was looking up, I was feeling better, I was hungry again and normal poos. But for every good day, there was a bad day. Every morning my surgeon would come in and tell me my body isn't reacting fast enough or my blood tests don't look good.
One morning he came in because my white cell count went up and told me he had me booked the next afternoon for surgery. I couldn't keep it together. All things were going through my mind - I will feel well and will be able to stop taking many tablets, but who will want to be with a girl with a pouch. I know its a horrible thought because other amazing people are living with ileostomy bags and are in relationships and happy but I just couldnt help it.
I had ultrasounds, xrays, ct scans and MRIs done.
Thankfully the next day they realized that my white cell count went up because of a blood clot that hard formed in my arm. At least there was an answer but just another thing to try and control.
After the results started to look good, I was discharged and finally home. But I am scared, I am waiting for the penny to drop and to become sick again. I am trying to be positive but it is incredibly hard.
I have to wait two weeks before I go back on remicade - they are changing the infusion to every fours weeks rather than every eight. I am not on any imuran at the moment just prednisone, antibiotics and blood thinners.
I am currently trying the SCD diet to help heal my bowel and then moving on to the fodmaps diet.
Hopefully everything works out as my specialist told me that there isn't really any medication left to try. I always knew I would need a ileostomy bag, I just didn't think I would need it at 20. Hopefully I will have a few more years before I have to deal with that.
Thanks for reading my story, I don't mean to offend anyone.
Since then I have been on prednisone several times a year as well as salofalk and imuran.
I am 20 years old now and I have recently found out that I have Crohns not ulcerative colitis - well actually I am in the middle of both because the doctors say that I don;t typically tick either of the boxes.
I have been hospitalized 4 times with c diff, influenza and erythema nodosum. Basically if my body can catch an infection it will.
I have never been in remission so my doctor decided to put me on remicade. I just finished the induction and I was feeling fantastic, it was the first winter where I didn't get a cold. That was until 3 weeks ago when I felt a cold coming on - sore throat, temperature, runny nose. That week I ended up with diarrhea and vomiting. I eventually went to the er and found out that my whole left intestine was ulcerated. I spent two weeks in hospital where I had my specialist and surgeon continuously telling me that I may be having surgery. I understand that if I have surgery I will fell 100 times better, but I still cant get my head around it. I am 20 years old, I should be living my life - not worrying about having a pouch strapped to my stomach. Those two weeks were the hardest as I had to weigh up the pros and cons as they believe the next time I have a flare, it will be life saving surgery. In a week before hospital I lost 6 kilos and with blood test showing that I was malnutrition, anemic, my crp was 288 and my white cell count went through the roof.
I was put on IV steroids, lots of potassium, blood infusion, flagyl and blood thinners.
My veins are bad on a good day but because of my condition they were even worse. So they decided to put a picc line in.
Everything was looking up, I was feeling better, I was hungry again and normal poos. But for every good day, there was a bad day. Every morning my surgeon would come in and tell me my body isn't reacting fast enough or my blood tests don't look good.
One morning he came in because my white cell count went up and told me he had me booked the next afternoon for surgery. I couldn't keep it together. All things were going through my mind - I will feel well and will be able to stop taking many tablets, but who will want to be with a girl with a pouch. I know its a horrible thought because other amazing people are living with ileostomy bags and are in relationships and happy but I just couldnt help it.
I had ultrasounds, xrays, ct scans and MRIs done.
Thankfully the next day they realized that my white cell count went up because of a blood clot that hard formed in my arm. At least there was an answer but just another thing to try and control.
After the results started to look good, I was discharged and finally home. But I am scared, I am waiting for the penny to drop and to become sick again. I am trying to be positive but it is incredibly hard.
I have to wait two weeks before I go back on remicade - they are changing the infusion to every fours weeks rather than every eight. I am not on any imuran at the moment just prednisone, antibiotics and blood thinners.
I am currently trying the SCD diet to help heal my bowel and then moving on to the fodmaps diet.
Hopefully everything works out as my specialist told me that there isn't really any medication left to try. I always knew I would need a ileostomy bag, I just didn't think I would need it at 20. Hopefully I will have a few more years before I have to deal with that.
Thanks for reading my story, I don't mean to offend anyone.
