Thanx guys for the replies, glad I'm not the only one but also wish it didn't seem like this will be the norm. I do get solumedrol as a premed. I haven't gone out and bought Benadryl yet but that wil...
Had my 4th infusion on December 22nd and have been really happy with how it's been going. I get premedicated with Benadryl, never had any issues. However since my last infusion I have been getting...
I'm both steroid refractory and steroid dependant. Failed trying to get off pred twice now, and am currently self tapering since my doctor is trying to go down 5mg a week, and I think that's still...
I noticed a random itchy spot on my upper right thigh that then turned into what looked like I got stabbed by a hundred needles (mini bruises if you will). But only happened that once. Many people...
I did experience blood and mucus which is what led me to get checked out but I never experienced the diarrhea and urgency that most get. Instead I also get the pain. Hurts so bad I can't lift my head...
My GI is quite against probiotics also...he says "there is no scientific proof that they work." Well....my double dose of Florastor and VSL3 have done more to get me out of flares than the 8 months...
I hear you. My fiancé travels for a living so often times I am home alone. Before this I cooked meals, meal prepped and had a clean house. Now, usually if he isn't home I don't even shower, get out...
I went to entyvio without trying other biologics or other drugs other than pred and apriso. Entyvio was chosen due to my steroid dependence and the hope that it would allow me to finally discontinue...
Go say goodbye to your mother! Yea cdiff is nasty and we with UC can easily get it but it's not the end of the world. But there are preventative measures: gloves and a gown while you are at the...
I just got it via a blood test vs the prick (heh)....
Keep us updated. I always look for your posts since we've had some similar situations....obviously yours are substantially worse. Chin up and think of how much better you'll feel after....
I just started taking the VSL3 two days ago, in addition to florastor; and while I know it says it can cause some bloating for a few days due to the change in gut flora...the bloating I'm having...
I'm on apriso, and that works for me. Copay is expensive but there is an assistance card....
I'm not much help as far as telling you what the next best options are to get your condition under control, but I will tell you that it's okay to break down and have a good cry! I've only been...
Not a helpful post to the OP, but Dikid....seriously, HOW do you know so much about all this? We were diagnosed at the same time and yet you know SO much about this! Medical background? Parents?...
I actually forgot to edit up above; my premed was actually 40mg of solumedrol....
Thanx ipoop! I hadn't taken my meds yet and I'm already here, so I'll get my IV roids and she told me to skip my oral...
Quick question that I think I know the answer to: Getting my third entyvio infusion today, and I always get 20mg of solumedrol as a premed. The previous two visits I was on low doses of oral pred and...
Anytime an UCer takes antibiotics and then starts having issues; you have to consider CDiff. Doesn't quite sound like that's what you have, but if it starts getting worse I would probably go get...
I've been wondering about you...I'm back in a flare after having peace for a short period of time. I'm on entyvio now, going to give it the 14 weeks, but after that if it doesn't work I don't know...
Thanx for sharing your stories guys. I'm just amazed you all were/are able to work, I can't imagine the strength and willpower it takes to deal with this day to day... On my bad days, I just simply...
I'm in what is my second severe flare (might be cdiff...will find out tomorrow). In both this flare and my last, I have been out of work for nearly a month, can barely leave my home, cant move,can't...
I just ordered it. I haven't tried it before but have heard good things. I always take at least one florastor but now that I'm back in a flare/maybe c.diff I'm doing 4 of those a day. Hoping the VSL3...
I'm hoping for good luck with my third infusion next week. I was doing great and had been in what I would think was remission for a beautiful month and a half, and now I'm either back in a full...
At my pharmacy I get the perrigo with the thick bottle like you are describing, and while I was in the hospital I had the same brand but a different bottle, easier to crumple up. One didn't work...
I thought it was just me....
My fever keeps coming and going, no other symptoms of being sick. Headache is at least gone. My doctor is very good at replying via email but doesn't always say much... So right now I'm still just...
That's where I am at too...I don't want to go back to the hospital. Going to email my doc in the morning if it's not better, I want to be sure I don't have some kind of infection going on since I...
Have any of you guys had issues when using tramadol? I am taking 50mg every 8 hours (or a little more frequently), but I've had this MASSIVE headache over my left temple since I've been taking it and...
I've been on the taper from 40mg since August. Down 10mg a week. I was supposed to do two weeks at 20mg but I misread the Rx and only did a week. I was planning on doing two weeks at 5mg and then try...
I've blissfully been MIA from the forum for the most part. I would say I was in remission. Since I got out of the hospital mid August I have gradually improved. However, this week, after my second...
I was actually pleasantly surprised my insurance approved entyvio no problem! Even without doing any other biologi a first. It's only approved through the end of the year but still better than I...
Been just lurking the forum for the past few weeks instead of posting. After 5 months of no relief because of a shoddy doctor, it seems my 10 day hospital stay was finally the kick in the butt my UC...
I'm actually doing pretty well now. I haven't had blood in a few weeks, formed BM, usually one a day or every other day (before UC I was never regular). Only problems I seem to be having is still...
I tried uceris. When I first got dx I was immediately put on pred. I tapered that without any changes to my flare, which at the time was very mild and confined to very low in the rectum. I told the...
Honestly, how unfair this is!! This post is just meant to be a rant about how annoying it is to have both a uterus and a bum intestine. It's not very lady-like...sorry haha It's been bad enough...
Went for an MRI today to make sure my UC isn't Chrones. Was my first time doing one, I've had a couple cat scans before. The barium was considerablely better than any of the colon preps I have done...
I couldn't take it. It took three days of diving one pouch before I gave up. It made me gag. I tried it in all kinds of stuff. I couldn't get past the medicinal, blood, chalk taste. Still have 14...
I also get the cramping, usually starts early evening and goes all night. Most of the times mine doesn't have gas or cause a BM and is worse when I lay down. I have bentyl but don't think it really...
How about a hemmie?...
I had a pretty elevated heart rate most of the time I was in the hospital. I could feel it pounding, so much that it would keep me awake. I also had a bit of an arithmia during that time, every...
my flare is clearly finally getting better...or at least better than I was two weeks ago, but it's crazy to me the contrast between night and day. 11pm, like clockwork I start getting the gurgling,...
Once again You-See, you and I are in similar situations. My symptoms are very similar; the night/morning thing (it's currently 5:30am and I am in the middle of my second of the night episode). I'm...
I went through periods of side effects and not. I noticed the lower the dose the worse my symptoms were actually...the moon face, acne and night sweats. I think my worst symptom has been dark facial...
You-see, your situation does continue to sound like mine. I did change doctors while in the hospital (well, scheduled an appointment), and went and saw the new doctor yesterday. I feel this has been...
My fiancé just had to decontaminate our house during my hospital stay and did a lot of online searching for wipes that kill C.. Diff, the ones he bought are in the tub, no travel ones (I'm a flight...
Saw the new GI today! Soooo much better than what I was working with; super informative, realistic, friendly, and receptive. He came to the Center for Interventional Endoscopy at Florida Hospital...
So glad you got to go home! I did today too! I luckily got an appointment with a new GI tomorrow, just a consult but I'm hoping he will be quick to take over. I'm also doing a bit better, less BMs,...
At this point my symptoms are very mild. Or, at least the symptoms that put me in here are. I likely had a bout of C.diff that I got without antibiotics, so I went from one day of just having bloody...
I am jealous of your ability to read your chart!! I can't see any of my records until I leave, and being that my doctor doesn't show up, I literally know nothing about myself......