Posted 6/9/2015 4:49 PM (GMT -7)
Hello! I am joining the UC club! And, I need your help, friends. I'm totally overwhelmed with questions and my GI doesn't seem too great at answering them. He's the third I've seen though and the best of the three, so I am hoping to crowd-source some advice!
A brief backstory: I have multiple other chronic diseases (migraines, fibromyalgia, vulvodynia, PTSD), so it took me a long time of slowly worsening symptoms to realize something was wrong. Took even longer to actually get treatment due to a really idiotic doctor. At any rate, I started Canasa suppositories and Cortenemas in January of this year and had slight improvement, then after my colonoscopy added Budosenide. No change on the budosenide. I switched to my third GI towards the end of the Budosenide taper, and he took me off of those meds and started me on Cortifoam and hydrocortisone suppositories. Have had no further improvement in the 3 weeks on new meds.
And my questions:
--What is a flare even? What is remission? What does normal digestion feel like and is that a thing that UCers ever have?
If the symptoms of a flare are diarrhea, bleeding and mucus, stomach cramps and pain, and fatigue, then I have been in a flare for at least 2 years! Is this even possible??
If the diarrhea has improved but not gone away (from 5+ urgent Ds a day to 1-2 very soft stools a day), would that be considered remission? My diarrhea and cramps have improved since I began treatment in 02/2015, but I am still having bleeding, stomach "discomfort" (like a rumbling, gurgling, slightly painful feeling, mostly in the mornings), severe fatigue, night sweats, and just generally feeling "crappy" (pun intended).
--Meds: Saw my new GI 3 weeks ago and he prescribed Cortifoam to take at night and hydrocortisone suppository to take in the morning. He told me that I should see improvement in 3 weeks and to check in. I have not seen improvement (as above), so he is now adding an oral mesalamine Asacol 2400mg a day. He says it should take 4-8 weeks. I've been feeling horribly for SO LONG and thinking of another 4-8 weeks feeling like this makes me want to just lie down and never get up again. Has anyone else had experience with this med? Did it really take that long? Is my doc being too cautious? Are there other things I can or should try?
--Food: My second GI suggested a modified BRAT diet after my colonoscopy. I'm vegan and suspect a gluten intolerance (biopsy confirmed no Celiac), so I was eating bananas, white rice with tamari, applesauce, and instant mashed potatoes. After three weeks of this I added tofu since woman cannot live on rice alone. Since then I've seen the new GI and he said I can add some foods but was very unhelpful about where to start. I seem able to tolerate avocados (strangely), oatmeal, and toasted coconut chips, and beyond that I have NO IDEA. I am soooo hungry all the time. I've always had trouble keeping on weight but now it's really sliding off, I have lost 7 pounds. I'm so so fatigued, and I'm starting to feel depressed and irritable. I have an appointment with a nutritionist in two weeks, but in the meantime---what do I do?? What on earth can I eat?? If I have to eat more white rice I'm going to scream. Please help!
I know, I've written a book as my first post! I'm just so lost and feel sick all the time. Any advice, even links towards good starter "colitis 101" type things, would be so appreciated!