21 ears old, found out I had ulcerative colitis 11 years ago, after ignoring the symptoms for far too long. Attending University in Ontario and finding it difficult to manage this disease with all of the stress that comes with being a student.
My Colitis Story:
I have had UC for 11 years and it has been a long road. After a combination of drugs I found that I was in remission with a combination of Remicade and immuran. They had worked pretty well and I usually only have about 1 bad flare a year. In the past few years however, I have developed a new symptom which I have been told is related to my UC. Kidney stones! Has anyone else with UC had a problem with them? I had passed many on my own and while waiting to get an appointment with a specialist for this new problem I began having a lot of pain. After countless trips to the emergency room and ultrasounds I was told there was nothing wrong and it was all in head. I was also told it was probably just an infection and put on countless antibiotics. When they finished however, nothing had changed so I asked my family doctor for another ultrasound. I went home after the test and a few hours later was called saying I needed to go to the hospital right away for surgery. To my surprise I had a 6mm stone stuck. It had been so stuck and impacted for about 3 months that my kidney was very swollen from being blocked off. They could barely get a stent up to help drain the kidney. Turns out, they ere unable to complete the first surgery because the stone was actually 9mm too big to pull out. After shock waves to my kidney and a laser grinding the stone up it was finally gone. I am very lucky to have almost full function of my kidney that had been blocked off. I still have problems with pain in my kidneys and still have many stones.
Has anyone had something similar and if so what has been done for you about it?
After the kidney stone problems I was doing well for about 6 months. Then however I got a horrible stomach ache. It was worse when i ate or drank anything, even water, a stabbing pain. My doctor is 2 hours away and was gone for the week, so I decided to go into emergency. They did many tests and told me that I was constipated and that was what was causing the pain. As all of you UC’ers know especially after having the disease for so long, we know our bodies pretty well and this was not constipation. I visited my doctor when he returned and he right away told me it was a reaction to the immuran. I have been on the medication for 7 years and have never had a problem with it, but sure enough after weeks of being off of it, my stomach ache has gone away. Has anyone else had this problem? I am worried now that I am off this medication, the Remicade won’t work as well. It seems the combination was what was working best. Anyone have any pointers?
written by Brittany