I’ll be 51 in 3 weeks, declared permanently disabled when I was 43 after 20+ years in emergency medicine, grandmother of 5 (2 in heaven 😞) no social life, autoimmune A.N.A. Now A-11. When you no longer “can do” you sometimes get forgotten about.
No symptoms of UC currently, last flare was 10/2015, occasionally my IBS acts up but lots of issues with other health problems currently.
Sheryl’s Story:
I’m currently weaning off 15 years of pantoprazole for erosive esophagus and hoping to wean off Lialda soon. I’m taking Moringa and praying hard. I have prednisone and Ativan on standby. I live on high doses of Tramadol since 2014, Tylenol, daily aspirin (clotting disorder after DVT/PE) Tizanidine, rizatriptan, vir D3, C, probiotics, omega 3 with epa and dha plus 2 other herbs in 1st Phorm Joint Mobility.
My doctor was amazing but he retired and now our Aurora hospital system has NO GI Specialist at all. It’s been crazy difficult to get in to see my GP of 12+ years, feel forgotten. I’ve had 27 colonoscopies so far and 13 EGDs, last colonoscopy and EGD was 2021 and no sign of UC and all looked good.
I’m most definitely trying to get away from ALL RX and replace with nutrition and herbs because I believe modern medicine will be taken away from me soon. I use to be very athletic and active, use to hunt, fish and garden, now I don’t do much of anything, I sometimes like to paint 🎨 but not very good. I enjoy my grandchildren and pets. I also gave up all sugar, gluten and carbs 54 days ago and started collagen peptides and MCT oil. I try to drink a lot of water and I never touch soda. But I love my coffee 😂
Have any of you ever gotten off Lialda successfully?
If so, how did you do it?
Anyone use herbs to achieve remission? If so, what do you use?
I’m seriously open to any help and suggestions. Feel free to reach out to me please. I just can’t believe that to s of RXs for life is the ONLY option, there has to be something safer out there to help us all?
Smoking had been my number 1 help in remission of my UC, if I try to quit I flare within 48 hours.
submitted by Sheryl
submitted in the colitis venting area
I’ve had UC Pancolitis since 2008 and been on meds since, I’m desperate to find natural alternatives and get off of them. If it’s possible??
Try Dr Snow. He is a naturopath who works virtually out of Massachusetts. You can find him on the web. He cured my UC 3 years ago. I am 100% symptom free. I even eat popcorn. He is a blessing.
Thank you Sheryl for sharing your story. I too wish to go off mesalamine and am very interested in hearing the responses and more about Marysa’s experience with Dr Snow.
I’ve been with UC since 2011 and have had success with the SCD diet, Reiki and changing my mindset. But I’d love to eat popcorn, if I even eat a French fry or veer from SCD I tend to flare
I used Dr Snow but didn’t help me
Much. I found Dr Chen and his Chinese tea helped a lot. He is out of San Diego area.
My 25-year-old son was put recently on mesalamine for UC. Two weeks later he was hospitalized for pancreatitis, likely induced by mesalamine. Others with similar experience?
Diet and stress management. Get off coffee; its just not worth the inflammation it causes. VSL3 probiotic in am before any food goes in. Eliminate all inflammatory foods. Eat smaller nutritious meals. Keep a food log to see what your triggers are. Include a column for the stress happening at the time of a symptom. No carbs and foods that turn to sugar. It takes time to let your body heal. Practice meditation every day. Eat when calm. Chew food well. Hydrate. D3 is a must. Cod liver oil gel cap also helped me. Good luck.
a reply on the coffee issue. I had a natural doctor here in Germany. she said put a pinch of salt in your coffee. I was bit like….seriously! but it didn’t taste horrible and it eased off the cramp I got from the coffee.
I am presently on Biologics. Stelara to be exact. Yes, was first on the biologic Entivyio for a year but my stool was still not great. Was still on the loo 10 x a day. Three days after the first injection of Stelera, I could feel a positive effect. Normal stool!!!! lol And ya all know how amazing it is to have a normal stool and only have to go once a day! (It had been 2 years! so it is. I am experiencing side effects like weaker muscles and joints. but in the retrospect I’ll take it for now. I am even able to eat pretty much all my foods. heaven!
I agree with lee, get rid of coffee. Caffeine is awful for colitis. I just had my 2nd colonoscopy and I’m 67 years old. My first one was 10 years ago. I’ve been on mesalamine for about a year. I didn’t take the four giant pills daily, only the nightly suppository. But since my colonoscopy came back with no sign of colitis, I’m no longer on mesalamine. So glad to get off that! Thank god no pancreatitis, that another person states her son got two weeks after being on it. Scary stuff.