I took Entyvio for the better part of a year and had some of the same fears. In addition to UC, I have a genetic disease that increases my odds of developing certain types of cancers. So far, I have...
I usually fast during the work day and always during flares. It's only ever helped with my symptoms. Sometimes, when you throw food into an inflamed colon, it can cause pain, gut spasm, etc......
I wouldn't recommend it. After Entyvio, particularly the first few doses, I had crushing migraines, joint pain, and fatigue. I would wait until after the trip to start if you're stable and not...
Hi all, New poster, longtime lurker. I've had UC for 5 years and have never gone a day without urgency, including when I'm "in remission." I've been on Entyvio for about 4 months and have yet to see...
I can definitely ask about that. They seem to shrug off the hypersensitivity, which is kind of understandable since even I didn't realize how bad it had gotten until my mom pointed it out to me. I...
DB: I doubt it. I took me literal months to figure out I was having a negative reaction to Tums because I just assumed that they were really mild. Finally, the symptoms were occuring pretty fast...
Hi all, Something I've noticed over the past few years: although my UC has improved over time as I step up the medication ladder, my IBS, what I'm assuming is malabsorption, and drug sensitivity has...
Hi all, New to this forum, but certainly not to chronic disease. I have a rare genetic disease and was also diagnosed with ulcerative colitis a few years back. Since then, I've experienced a downhill...
I don't remember how long I was on each one individually, but I was on 5 ASAs for over a year and a half total. I was on Colazol the longest. There were a few, like Lialda, which I could only...
Yes. I take what's considered a fairly low dose of Imuran, even for UC, because I also take Entyvio. According to my doc, the usual starting dose of Imuran is 100 mg. I do have some side effects:...
I take ortho tri cyclen low and have never had any issues with clotting. It's basically the lowest dose birth control that I can find that helps with the ovarian cysts. I've been on it one and off...
I'm mesalamine intolerant and it took my doctors a year and a half of forcing me to try and fail on every mesalamine drug out there before we moved on to Imuran. The thing that finally convinced me:...
Medication can also cause hair loss. I'm dealing with that with Imuran right now. My doctor has recommended oral zinc and folic acid, but I can't tolerate either one. I'm supposed to start biotin,...
Hi all, I've been on Imuran for over 6 months now, and it seemed to help - not that it got me back to normal, more that I switched from D to extreme constipation. I was taking 3 doses of Miralax...
We're just systematically trying and eliminating everything. Imuran has gotten me close to remission, but I still have microscopic inflammation that's giving me issues. Her feeling was that if my...
I told my immediate supervisor the specifics because she would be the one covering for me if I left a meeting suddenly, etc... Everyone else at work just knows that I have an autoimmune disease. I...
I've had this happen too. During my next scope, they took biopsies and found inflammation at the microscopic level. My doctor referred to it as "mild," but apparently, it's enough to cause the exact...
I've been taking azathioprine for about 7 months. I started it when I finally realized I was mesalamine intolerant. I wouldn't say that I'm completely in remission yet, but going from running to the...
My doctor suggested maybe trying Xifaxin to sort of "reset" my gut bacteria. I've tried Cipro and Flagyl before without much success, and I have responded very poorly to every probiotic I've ever...
According to my last colonoscopy, which was in November, I only show slight inflammation in some places. My doctor was the one who suggested lowering my dose. It's not the anti depressants because...
Yeah, but I've been on it for six months, I'm 33, and I would never have the option of going to step class because I'm too tired. I've explained it to people by saying that I only have enough energy...
I recently told my doctor that Imuran was working pretty well on my UC symptoms - far better than anything else I've tried - but my fatigue seems to be getting continuously worse. She told me I could...
I also have PCOS and endo, and have found that low dose birth control improves my UC symptoms (as well as the PCOS and endo symptoms). Before, I was having 2 week-long periods a month and even with...
Have you taken anything besides Lialda and Canasa? Both are mesalamine drugs, and most of us have to experiment with medication regimes before landing on something that works. In my case, my...
No. Zero problems prior to UC symptoms. I've read things that suggest that the inflammation in our gut affects our actual brain chemistry (as opposed to just creating situational anxiety). I think...
I tend to get the same side effects, but sometimes they come on more quickly or more severely despite the fact that I always start at 40 mg and always follow the same taper schedule. The first time I...
I've been on Aza for like 3-4 months. My bloodwork is okay (I'm taking iron and B12 shots), but I'm exhausted constantly. I think it's the drugs and that may be the case for you too....
I've known people who have died from colon cancer and it's one of the ugliest deaths I've ever seen (right behind stomach cancer). I haven't had polyps, except the kind that indicate healing of old...
I'm definitely intolerant when it comes to oral mesalamines. I've tried a bunch: Asacol, Apriso, Lialda, and Colazol. They all cause full flare symptoms for me. My new GI has suggested I try Canasa...
I'd mention the swollen lymph node to your GI and bump up the date of your blood work. Imuran slightly increases the chances of developing lymphoma (small risk, but it's still there)....
If it reassures you at all, I didn't have the same terrible reaction to Canasa suppositories (containing mezalamine) that I had to the oral drugs. Nothing bad happened, they just don't seem to help...
Pretty much all UC drugs can cause hair loss. Folic acid can help. In my experience, hormones play a huge role. Birth control pills helped big time for me, so maybe hormone replacement would help...
I'm mezalamine intolerant and your reactions to 5 ASAs sound a lot like mine. I tried all of them and had the easiest time (which was not easy at all, 20 BMs per day, urgency, vomiting) on Colazol...
My docs said that antibiotics are sometimes prescribed first when doctors aren't sure whether isn't chronic or acute inflammation because antibiotics help most acute causes. I would talk to your...
This might be too far for you, but in Pittsburgh, the UPMC IBD team does this thing called Total Health. It means that as part of your IBD care, you also get appointments with a dietician, a...
I'm in a similar situation. I haven't been laid off, but my university is cutting benefits, laying off others left and right, and piling on additional job duties with no salary increases, so I'm...
Aza and 6 mp work in similar ways, but 6 mp is metabolized differently, so some people tolerate it differently than aza. As my doctor told me, 5 mg of steroids "isn't enough to help yours symptoms,...
There's no way I'd put up with the discomfort in the name of driving myself home. My dad does them unsedated and said he threw up from the pain last time. Last time I went, it was in the middle of a...
Yeah, there was a period where I was in the bathroom all day, then throwing up all night. It wasn't long after that started that I landed in the ER. Throwing up is never a good sign....
$30 copay for GI, IBD psychiatrist, and nutritionist, every month or three. $400 for the first diagnostic test. $50 after that. Incontinence supplies, probably around $300 a year. Parking lease so...
Thanks for the suggestions, all. Botox sounds amazing. No more headaches and looking less sick and exhausted? Sign me up. quincy - yeah, I think multiple issues are part of the problem. Despite...
I've been having really severe headaches nearly daily since upping to my full dose of Imuran. It's impossible to tell whether this classifies as a migraine or not, since I also have vertigo and...
Um, yeah, several times, including communal ones. They've luckily been empty when I've gone in, although I've gotten a few looks when I walked out. Frankly, I wouldn't have cared if there had been...
Wow, you need a new GI. I agree with what everyone has said about stopping 80 mg of prednisone cold turkey. That's an enormous dosage to begin with. I've never been on more than 40, but have heard...
I didn't wean, but I only took it for about 6 weeks and it wasn't working for me at all....
I think it's weird that your doctor doesn't want you to taper until the bleeding stops. It took a year for the bleeding from my first bad flare to stop. On work: I've have an office job too and have...
My blood sugar is fine. I fast sometimes to control symptoms, but consistently throughout yesterday. It didn't impact the dizziness. Alice - I tried the Epley Maneuver with no luck, but I also wasn't...
Sorry to hear about your difficulties. The thing about diet changes and supplements is that those things really help some people, but others don't respond at all. I've tried all of the diets out...
That's how I lived for years. I am thankful that since surgery I am able to go out after a meal. Even if I need to get to a toilet, I can wait long enough that I don't need a diaper. I was the worst...
Quick question: Did any of you split up your dose? I'm taking 100 mg at night before bed with food to help with the nausea and tiredness, but I'm wondering if 50 mg late afternoon and 50 before bed...