If its of any consolation to you: I got pneumonia a few years ago while on Remicade and Imuran. I was also on massive doses of prednisone, so very delicate. My Dr was extremely aggressive -...
So it wasn't as bad as I remembered it. I honestly didn't check the brand - i think it was a generic GoLytely. It had no flavor. I mixed it early in the day then chilled it well and drank it with a...
I concur and am always resistant to have colonoscopies. Last two I flat out refused the prep and did a clear liquid diet in prep - although was told it was "not sufficient". I think restoring the...
Thanks all!! Appreciate the feedback and support. I've been reading up and drinking the mix through a straw is also recommended. I've started the bland diet too!...
Hi Folks! It's been a while. I'm currently in remission, but my Dr has scheduled me for a scope this week since I've been living w UC for 10 years. Last time I prepared for a proper scope I remember...
I tried Entyvio and after my 4th infusion began with a new and totally unexpected disease called pyoderma gangrenosum which severely affected my skin. I only mention it because you alluded to a "new...
Hi Flowers: No more Entyvio for me. Dr has two theories as to what caused the pg: 1. Since Entyvio is gut specific the autoimmune cells looked for new ways to escape the body- they found the skin 2....
Thank you all for your posts and concerns. Thank you U B! Turns out the Dapson I was on for the pg caused methemoglobinemia (blood can't carry oxygen)- that was what was making me feel so miserable....
Well this is depressing. Technically I didn't "fail" Remicade. I took myself off it. When I went back on it didn't do the trick (denial??) After 4 doeses of Entyvio developed pyoderma g and am now on...
i am traveling back to the US tomorrow to see if I can see a specialist. Begging for an appointment. Biopsies were taken, it's def PG. UC dr wants to get me on Stelara asap, praying that my insurance...
Hi all: I'm a UCer, but haven't gotten many responses on their forum. I developed PG a few weeks ago, first time ever. I live in a 3rd world country where both UC and PG are very rare. I travel to...
So all hell is breaking loose here. PG is growing each day. Dr's in Guatemala seem to be at a loss. The dermatologist says to do 2 days of IV steroids, and increase my prednisone drastically, but...
I hear ya PhPh: I was in the same boat. I live in a 3rd world country where UC is not common at all. I eventually had to travel to the USA to get treatment. I would research your area and find a UC...
Thanks Q: Amazingly enough, despite the antibiotics I'm now on, I feel like the Entyvio has FINALLY started to kick in. I'm doing so, so much better from the UC than I was 10 days ago. Praise God! At...
My Dr had the gall to tell me: "Oh, you look so cute. I like the chipmunk cheeks on you".... grrrr If you are feeling well, TREASURE THAT!! They'll be plenty of time to safely loose the weight! And I...
Hi: Over Easter break I developed some weird "pimples" that turned into ecthyma. Unfortunately since it was break, i didn't get them looked at till they had progressed. Dermatologyst put me on...
I had "undiagnosed" diarrhea for about 2 years prior. The Dr said it was "tropical sprue" (aka we don't know what's causing it). Did the celiac diet and didn't get any better. STUPIDLY I got breast...
Thanks for the great suggestions everyone. I'm hearing the recurring take a walk: will definitely start that. I'm also curious about adding fiber to my diet, as I know it's important to help balance...
I've been on predinisone twice in the last year. Last time I was coming out of a really bad flare and had lost about 15 lbs so wasn't an issue to gain weight. This time I was already on the heavy...
Thank you Bull101! I have looked online for what to expect with Entyvio and basically can't find anything. I've had my 2 starter doses and one more. Next week will mark 12 weeks since my fist...
I also took the Ultimate Flora Critical Care 50 billion for years. If you're in the US you can find it at Walgreens or by Amazon. Am not tolerating it this time :(...
Amazing news!! So happy for you. Any time we get approval from our insurance it's a battle won!! I LOVE biologics, and thank the Lord every day for the people who discovered/developed them. They once...
FlowersGal: I was actually on Remicade for 5 years and felt amazing. Super, super well. Never had any side effects. Full actual remission. It was as as if I was cured. I felt so good that when we...
Thanks iPoop: I appreciate an actual number of weeks in which I can expect to see an improvement. I couldn't find anything online and Dr was very vague, but did say it took longer than Remi. I am...
FlowersGal: I know how you feel about anxiety about the $$$ of all this. I can't go there though. I need to live for today and if I have provisions and money to pay for my insurance and deductible...
Thanks for your reply Doggiedo All I know is it's a waiting game for now. My next infusion is in April (will be my 4th). I am begging for an appointment with my GI at that time, but so far only have...
I was on Remicade for 5 years (after trying, pentasa, Lialda, 60mgs of Prednisone, enemas, severe diet modification). Remicade gave me my life back - so much so, that i thought I was completely...
I completely agree with you: we go to the GI, because the symptoms lead us to them, but UC is an auto-immune disease. I was blessed to work with both for many years. My GI would prescribe, and my...
After 5 years on Remicade, and achieving full remission, I decided to stop it (long story involving a severe lack of $$$). When I tried to go back on it I never was symptom free again, and also...
Hi BybeByeUC. I have tons of questions! How can I get in touch? Thanks...
I went to 4 doctors before one was finally brave enough to prescribe Remicade. She's a leading specialist (in the USA) for Ulcerative colitis, and when she saw how sick I was, and how much I'd tired...
Thanks so much all for the suggestions. My Doctor (whom I have to travel to Miami to visit - no one in Guatemala knows how to treat UC) has asked for labs to check if my "azathioprine is at...
Thank you all for your suggestions. I forgot to mention I live in a third world country, where Remicade is imported and sold by a third party. As it is, I buy it directly from the distributor. But...
It's been a while since I've posted anything, been in remission for about 4 years now, thank God. Unfortunately due entirely to finances I am going to have to stop my Remicade. My Dr advised me not...
2 Lialda daily, 125/150 Imuran alternating (to boost the Remi) and Remi every eight weeks seems to be my magic cocktail (don't know where my siggy went) I really boosted my improvement when I started...
My GI explained that mesalamines work sort of like salves on the colon, meaning that the medicine needs to make it past the gastro tract pretty much intact, and make it down to the colon, where it...
Hello Fellow UCers: It's been a while since I've been on here. Too many painful memories, and a strong suspicion I'll be back, asking questions and giving opinions some time in the future. But for...
Thanks Notso... We've tried everything, but living in a third world country, ironically, there is no assistance from the company that imports it. Only thing I've done is change my husband and kids to...
I go in every 8 weeks, and am on an extremely low dose. That's also one of the things I'm hoping for. Although since my insurance isn't covering my meds, this will mean a huge added expense for our...
After living symptom free since going on Remicade last Dec and reaching remission in April, it's slowly rearing it's ugly head :( I couldn't get over how every week it seemed like I kept feeling...
Sorry Prayerful :( I dislike vague doctors. I'm with everyone else about requesting a follow up. I think it's crazy he gave you the results while you were still groggy. If he's too busy to see you...
I listened in on a webinar of theirs about a year ago and I found some of the information useful. I'm posting this here in case any of you would like to listen in...
When I was flaring really badly, my OB/GYN told me (ironically, not my GI) to make sure I spent 20 mins every day out in the sun. Along with spending some time meditating, praying, and getting on the...
My doctor neglected to mention it could take up to three infusions to start seeing results (I mention this because I see you suffer from anxiety). Please don't get discouraged or worried. Relax and...
Thanks for all the great suggestions. I will have an infusion right before I go, so I should be ok. I got a prescription from my GI for meds for travelers diarrhea just in case. First thing my...
The Crohns and Colitis Foundation of America has a lot of information and is always posting new research....
Aisle seat has been IT for the past 3 years :(. I miss the window.......
I agree with Beth: get them to put the IV in your non dominant arm. Makes life easier. Especially since I assume you're still flaring and will have to go to the bathroom several times. Mine is...
I will be traveling to Singapore soon and have a 23 hour commute with 3 plane rides (crazy, I know) While I'm currently not flaring (ptL) i want to keep it that way and I treat my colon with the...
I've been on az for almost a year and was PARANOID about being around sick people (I'm also on Remicade) I'm happy to report that I've only had one cold all year, and survived it just fine. I have 2...