I was diagnosed with moderate Ulcerative Colitis when I was 19 years old and in my freshman year of college. After some serious doses of Asacol, it was under control in a few months and after a year, I weaned myself off of it and started natural therapies. After evidence that the disease had left my body, I proceeded to have four years of remission and returned to a mostly normal life and eating habits…until this past October (2012.) Since then, having not been on maintenance medication and letting my diet go, the disease has been back with a vengeance. Due to a very unfortunate filing error on UMD’s part, I now have no Rx coverage until JULY and can barely afford Apriso out of pocket and Asacol is out of the question due to its cost. So, for four months I have been taking VSL 3, Prednisone (40 mg now down to 10 due to glaucoma-like symptoms) and the Apriso… but the bleeding won’t seem to stop even with diet changes. Discouraged, at this poi nt! Just started the Maker’s Diet again. Hoping it helps but so far in week one of phase one, and my symptoms seem worse? C’mon!
Some more about me:
I’m a classical violinist living in the DC area! Conductorless chamber orchestra is my passion (it’s pretty great, you should know about it!!) I also have a food blog and really love baking a la Julia Child, but now being gluten-free, that’s been put on hold for a while. Figuring out a new lifestyle altogether, in fact!
Bleeding, urgency, chronic fatigue… general feelings of needing to stay in bed? (haha.)
Coming to Terms and a Little Sad About It
Wishing Natural Remedies Actually Worked Like Conventional Medicine
I was determined not to let Ulcerative Colitis change my life and after that initial year of trouble, I really had convinced myself that it was over for me forever. But now that it’s back and I’m more discouraged about it and ridden with fear over it than I thought was possible, it seems to be changing me in quite a few ways. But, I will always remember the words of my first integrative doctor – she said that I could walk away from this and I should never own it as MY disease. I’m determined to figure out what this means.
Practically speaking, well, does anyone REALLY want to worry about crapping their pants when starting a new job or before walking out on stage? I don’t think so. Not to mention horrible pain. That never does well for hanging out with friends. And of course NO ONE wants to have to know where the bathroom is at all times… But I’m hoping to put all of this behind me soon. I just know it will take work. And if I can’t walk away from it? Well, I’m not ready to accept that yet! I just have to accept that permanent changes are what I need. Of that, I am convinced.
My family is super supportive but I do have a mom who really wants me off of conventional meds and only into natural things. I agree with her, but doesn’t the bleeding have to stop first?
My current worries are that Prednisone and Apriso are not actually helping with healing at this point… and honestly, I’m afraid to talk to my doctor because he is a big pusher of conventional meds with no regard for other side effects. But when you’re pooping blood, I guess there isn’t much choice.
I suppose this is a coming-to-terms for me!
Asacol – worked, but with side effects. If you can take it and come off of it like I did – I suggest that! Wishing I could take it now – why oh why does it have to cost SO much? Angry about that.
VSL 3 – I can’t tell when this is working vs not, but I believe in it due to the benefits of good cultures, since those of us with UC have very unbalanced flora
Apriso – Pretty sure it doesn’t work aside from keeping pain at bay? Or so it seems
Prednisone – If you’re really bad off, take it? Otherwise, stay away! Diabetes – glaucoma – God knows what else?
Acupuncture – SO helpful for pain
written by Anna
submitted in the colitis venting area