Just got approved for the copay assistance program and booked for a loading dose in a couple of weeks. The cost estimate isn’t nearly as high as I was anticipating. Will update on how things go with...
Appreciate the support and insight from everyone. I’m waiting for the copay assistance application to go through. It’s taking a while. Hoping I’ll be getting my first loading dose sometime in...
I would stay on enemas indefinitely if they kept me in full remission. I’ve been using them nightly for a few years now. It becomes so easy to do once you get some practice doing them. I would...
Bacongirl, I could see how active UC could affect nutrient absorption. I do blood work every year and everything is good. I do have a history of low vitamin D which I supplement. B12 has always been...
Thanks guys, I had the scope and the condition is essentially unchanged since my last one in 2021. The inflammation hasn’t extended at all and the severity was mild, but still active of course. My...
Thanks y’all. I will talk to the GI about getting an endo with biopsies. They are already far more thorough than my previous docs which is a really good sign. I’m much more optimistic about treatment....
Yes, 2021 is the most recent scope. They did biopsy throughout. I have had “superficial ulcers” in the duodenum before. No mention of Chrons. I do have a relative that has that diagnosis. I’m not...
I’ve been maxed out on mesalamine for a couple of years now. I take them religiously, whether symptoms are present or not. In fact I’ve never been able to taper enemas without more symptoms...
I’ve thus far been living with mild-moderate UC. My flares pre-treatment were the worst ones so I’ve been fortunate, all things considered. But I’ve been in a pattern for a few years now where I get...
I really like one called Earth Chimp. Vegan, organic, and without any sugar alcohols. I mix it with cashew yogurt to get about 32G protein. Fuels me all day....
Ferrous gluconate (iron) is a common additive used in canned olives. Maybe that irritates your gut? Iron supplements can seriously bother even “normal” guts. I buy a product called “Simply Olives”...
If it were me I’d stay at the max mesalamine tablet dose indefinitely and add Rowasa enemas every night for at least a month if not longer. At least give the rectal meds a college try if you haven’t...
Yep, I’ve tried tapering before and it didn’t work out too well. Symptoms started creeping back in. I honestly don’t mind using them every night - though if I decide to travel that might become an...
Hey q, Yes I’ve had some blood in the stool. Not a lot. Not noticeable in every BM. Gut gurgles and excess gas for a few days. Guess I’m lucky in a way (*knock on everything*). I’m pleased to be...
To answer some questions here: I was scoped a couple of years ago. Mild inflammation confirmed by pathologist. As for meds, I don’t adjust anything right now. I bumped up from 3.6g to 4.8g mesalamine...
I hear from experienced UC’ers that nearly everyone flares at some point or another, regardless of the medication they’re taking. So at what point do you decide meds aren’t working any more? I seem...
Dx’ed in 2014 - probably had active mild disease years prior but fobbed it off as hemorrhoids acting up. Luckily, when symptoms troubled me enough that I mentioned them to a GP, he sent me straight...
My Lialda script mentions limiting sun exposure and my GI said the same thing. Wearing a hat and sunscreen is recommended. I seem to burn more easily on 5-ASA myself. Never heard that advice for...
If I may add, the perspectives expressed on this forum, particularly by those with long-term experience, have helped me greatly. I’ve learned far more about UC and treatments from users here - who...
Hi, I’ve been doing great on my maintenance meds for months - had what seemed to be a very mild flare in late Sept. last year (or was it hemorrhoids? Still not sure) that resolved very quickly - and...
I notice UC’ers will mention having some symptoms (but not flaring per se) when having trigger foods or drinks. Is the idea that our digestive systems are just generally wonky and are more sensitive...
I’ve eaten a vegan diet for about 20 years and have nearly always had at least two BMs per day since the dietary change. Never been constipated....
+1 for rectal meds. Mesalamine enemas could help a lot....
https://news.gsu.edu/2021/11/30/ubiquitous-food-additive-alters-human-microbiota-and-intestinal-environment/ ...
I have mild inflammation in the same area (between 15-25 cm) and it’s ultra stubborn when it comes to healing for me. Sometimes the only symptom I’ve had is blood in stools (small amounts) that just...
Fantastic! I love hearing good news from members....
Old Hat, I used incomplete terminology. Most of my colon is normal, including the descending colon. I have inflammation in the rectum and recto-sigmoid is what the biopsies said... doc said it barely...
TT: I eat whole foods the vast majority of the time now. Avoid refined sugar. Minimal alcohol. Those are the changes. q: The biopsies mention “mild chronic colitis in the recto-sigmoid colon.” All...
I was taking 3.6g for a few months. I got scoped in April which showed mild inflammation between 15cm-25cm. Upped to 4.8g in May....
Blood in stool. Small amounts, but it kept coming back intermittently. Several times a week. Occasional mucus. I just couldn’t get it to tamp down for 18 months or so. This resolved in May and hasn’t...
Hi, I had simmering, mild rectal inflammation for a year and a half until I bumped up to 4.8g Lialda (in addition to nightly Rowasa). My symptoms disappeared immediately and I’ve been stable for...
Good news: I have been nearly symptom-free since the bump up to 4.8g Lialda almost a month ago. The blood stopped instantly. Stool was mushed up for a few days after the bump but that subsided....
I’m bumping up to 4.8g Lialda to see if it makes a difference in conjunction with the Rowasa. Going to try that for a month-ish. Will see how that works. If it isn’t satisfactory I’ll add a steroid...
Hey q, Not taking fiber or probiotic. I do eat a high fiber diet and probiotic-rich foods though... Had an appointment today. The GI refuses to write me a steroid rectal script. In fact, he doesn’t...
Definitely going to give it a shot! I requested a foam from the GI and his response was he doesn’t think I would “get any added benefit from it.” I’ve got an appointment next month and I’ll have to...
Thanks peeps... I’ll talk to my GI about it. Unfortunately he wanted to give me a week of prednisone and said he hoped after that I could “ideally control it with Lialda alone.” I don’t want systemic...
Hey y’all, I use Rowasa every night for maintenance and do pretty well with it, though I can’t quite get my rectal inflammation into complete remission. Thinking of adding a steroid foam in the...
Been using rowasa every single night... I’ve never been symptom free long enough to successfully taper them, though they do work pretty well for me (hence the steroid foam idea). Also, the doc says...
Hey y’all, I have a long history of GERD. Started around puberty. Symptoms came and went over the years. I get reflux several times weekly nowadays. I’m sure the anxiety and stress over the last year...
Thank you... Still waiting on labs... I’m thinking of requesting either hydrocortisone enemas to try short-term (3-4 weeks) in the morning, budesonide foam or cortifoam. I noticed the foams recommend...
I’ve had inflammatory marker tests come back as normal even when I’ve got flare symptoms. Demand a visit with a gastroenterologist. Write down all the detail so you don’t forget anything and mention...
Had the scopes today... went well. Here’s some results from the tests: Endoscopy - non-bleeding duodenal ulcers. Everything else appears normal. Colonoscopy - non-bleeding internal hemorrhoids. Mild...
Last one was in 2015... I’m planning on going every 3 years from now on, provided things aren’t worsening. So I’m trying to get ahold of the GI to ask his advice but figure I’d ask here as I haven’t...
I received the first Moderna jab last week. I had a mild to moderate amount of tiredness and general malaise for three days. I still did my usual workouts so it wasn’t disruptive. Just a general...
Totally, I pushed for a scope despite my last GI telling me based on my symptoms that my condition is still mild proctitis. The PA waved me off based on inflammatory markers being normal too (which...
Have scopes scheduled for April 6th... I’m definitely not getting worse. The mesalamine works. After a little over four months on combo therapy I seem to finally be in a groove where things are going...
Been on Rowasa nightly for almost a year and a half... still getting good, if uneven results. Had an appt. with a new GI doc today. He was insistent on doing a scope in a month or so. Any suggestions...
Hey q, Thanks for the encouraging words. The combo therapy is definitely working... It’s been two months and I get the feeling I’m very slowly improving with the occasional hiccups. The blood from a...
Update: haven’t tapered rectals yet. I’ve been *almost* symptom free for the past two months on combo therapy. Two mostly solid BMs a day, three max, no urgency, no mucus, no D or C. Still...
Quick update: I’ve been using the Lialda/Rowasa combo for a week now. Once I started the tablets the bleeding and mucus stopped immediately (except a tiny bit today). Pleasantly surprised! BMs vary...