Hello all,
I just turned 24 last month. Diagnosed with UC in 2007 at age 17 as I started my senior year of high school. Horrible experience, nearly had to be hospitalized. I was around 5'9 and down to about 100lbs. My doctor was very aggressive in getting the disease under control so I was put on Prednisone (can't remember dosage) for quite some time. All I remember was that I felt better almost immediately, BUT I turned into a grouchy bitch, was eating everything in sight, gained like 15lbs in a matter of weeks, my face blew up and my skin broke out like crazy! (on top of having acne prone skin already) I vividly remember trying to tie my shoe laces in the morning and after minutes of attempts, just sitting there crying because my fingers would cramp in the process. Not to mention how everyone I knew saw the physical changes in my appearance and was constantly asking what was wrong with me.
Fast forward 7 years of the same medication regimen (6-MP 75mg, Asacol (now Delzicol) 2 twice/day and folic acid), a Master's Degree, and the start of my professional career later, I'm at the worst flare since I was diagnosed. Don't get me wrong, I consider myself one of the fortunate ones to have a seemingly mild case of UC compared to some other stories I've heard. 7 years of stability has afforded me to get through my education and live a life that every 20-something should be living for a few years. With that being said, in that time, I was also able to get a good handle on the anxiety that had resulted from the start of the illness in constantly worrying whether or not I was going to have to go to the bathroom while I was out. Initially, after being diagnosed and for quite some time after my symptoms had disappeared, I became a recluse because of my anxiety. I feel like I missed out on a lot of the experiences the "normal" college kid has because of my anxiety.
I saw my doctor last week and after explaining my symptoms (blood, mucus cramping but still only going once or twice a day), he wanted me to go back on Prednisone with a proposed dosage of 30 mg for two weeks. If, after two weeks, my symptoms had subsided and I was feeling better, he would then begin rapidly tapering me off of the steroid. He explained that at the two week mark, I would begin having the more severe symptoms of Prednisone (the bloating, puffiness in the face, etc), so hopefully that could be avoided if my symptoms went away. Remembering the horrid experience I had when I was first diagnosed and put on Prednisone, I immediately questioned him for other alternatives. As a result, he increased my dosage of the Delzicol to 2 pills three times daily, prescribed me Cipro (antibiotic) for 5 days (he said that it can help in some cases) and told me to get a probiotic. I'm at the end of that 5 day "trial period" and my symptoms really haven't improved.
I don't know what else to do at this point and I don't know if there any other alternative medication adjustments that can be made but the thought of going back on Prednisone is just about as bad as the thought of my symptoms continuing and getting worse. I feel like every aspect of my life needs to be paused because my body is deciding to act up when in reality, that's completely unrealistic. At the same time, it's almost impossible for me to imagine living my life the way I have been with these symptoms if they continue to get worse. I've built my life and my confidence back up to where it should be and now it's possible for it to all come crumbling back down.
Anyways, thanks for the rant. If anyone has any advice or words of encouragement, please comment back!
I just turned 24 last month. Diagnosed with UC in 2007 at age 17 as I started my senior year of high school. Horrible experience, nearly had to be hospitalized. I was around 5'9 and down to about 100lbs. My doctor was very aggressive in getting the disease under control so I was put on Prednisone (can't remember dosage) for quite some time. All I remember was that I felt better almost immediately, BUT I turned into a grouchy bitch, was eating everything in sight, gained like 15lbs in a matter of weeks, my face blew up and my skin broke out like crazy! (on top of having acne prone skin already) I vividly remember trying to tie my shoe laces in the morning and after minutes of attempts, just sitting there crying because my fingers would cramp in the process. Not to mention how everyone I knew saw the physical changes in my appearance and was constantly asking what was wrong with me.
Fast forward 7 years of the same medication regimen (6-MP 75mg, Asacol (now Delzicol) 2 twice/day and folic acid), a Master's Degree, and the start of my professional career later, I'm at the worst flare since I was diagnosed. Don't get me wrong, I consider myself one of the fortunate ones to have a seemingly mild case of UC compared to some other stories I've heard. 7 years of stability has afforded me to get through my education and live a life that every 20-something should be living for a few years. With that being said, in that time, I was also able to get a good handle on the anxiety that had resulted from the start of the illness in constantly worrying whether or not I was going to have to go to the bathroom while I was out. Initially, after being diagnosed and for quite some time after my symptoms had disappeared, I became a recluse because of my anxiety. I feel like I missed out on a lot of the experiences the "normal" college kid has because of my anxiety.
I saw my doctor last week and after explaining my symptoms (blood, mucus cramping but still only going once or twice a day), he wanted me to go back on Prednisone with a proposed dosage of 30 mg for two weeks. If, after two weeks, my symptoms had subsided and I was feeling better, he would then begin rapidly tapering me off of the steroid. He explained that at the two week mark, I would begin having the more severe symptoms of Prednisone (the bloating, puffiness in the face, etc), so hopefully that could be avoided if my symptoms went away. Remembering the horrid experience I had when I was first diagnosed and put on Prednisone, I immediately questioned him for other alternatives. As a result, he increased my dosage of the Delzicol to 2 pills three times daily, prescribed me Cipro (antibiotic) for 5 days (he said that it can help in some cases) and told me to get a probiotic. I'm at the end of that 5 day "trial period" and my symptoms really haven't improved.
I don't know what else to do at this point and I don't know if there any other alternative medication adjustments that can be made but the thought of going back on Prednisone is just about as bad as the thought of my symptoms continuing and getting worse. I feel like every aspect of my life needs to be paused because my body is deciding to act up when in reality, that's completely unrealistic. At the same time, it's almost impossible for me to imagine living my life the way I have been with these symptoms if they continue to get worse. I've built my life and my confidence back up to where it should be and now it's possible for it to all come crumbling back down.
Anyways, thanks for the rant. If anyone has any advice or words of encouragement, please comment back!