Elmiron and Diarrhea: What Users Say

• Anonymous
• July 1, 2011

For Interstitial Cystitis "I took Elmiron for 8-10 years. Initially, and for several years, it did not cause any negative side effects. However, after taking it for about 5 or so years, I started to have symptoms of colitis/Crohn's. A colonoscopy discovered multiple spots where the lining of the colon was ulcerated. So I was treated for a bowel disease for 6 YEARS. The doctor wanted to put me on something stronger, but I wasn't eager for that. I remember that Elmiron could cause diarrhea as an initial side effect. I hadn't had that problem, but I decided to stop taking the medicine. Within TWO WEEKS, all of my gastrointestinal problems went away. My most recent colonoscopy showed that the tissue had returned to normal. Be aware of late side effects."

• Dia...
• Taken for 5 to 10 years
• July 11, 2019

For Interstitial Cystitis "I have had Crohn's disease for 33 years. 30 years ago, I had a vestico-enteric (colon to bladder) fistula repair. I was later diagnosed with IC as the fistula destroyed bladder lining. I was given Elmiron orally. Made me MORE ill with side effects. My Dr. decided taking orally was NOT the answer for me, so she started me on weekly bladder installations. The difference was AMAZING. It's been several years, and I'm now only needing treatments every 2-3 weeks, with minimal side effects (occasional headaches from it and diarrhea, however, that would be from Crohn's). When getting Elmiron in a catheter, almost ALL is absorbed by the bladder because it DOESN'T have to go through the digestive tract, etc. I was deathly afraid of the catheter for a while, but it works. Also, it's much cheaper than taking 3x daily. Treatment requires 2 capsules, so MUCH more affordable."

• Noo...
• January 18, 2019

For Interstitial Cystitis "I was diagnosed with interstitial cystitis (IC) about 7 years ago. 6 months after I started Elmiron, I noticed a change in my bowels. I mentioned it to my urologist. A few years later, I had a colonoscopy, and my GI doctor was shocked by what he saw. He said the entire colon had ulcers and cysts, it was only chronic ulcerative colitis. He had also had blood work taken, and the Crohn's assay was off the charts. I continue to take the Elmiron due to a flare-up of IC, it is horrible. I can tolerate the chronic diarrhea. The GI doctor tried meds for Crohn's and ulcerative colitis. I also had surgery in January of 2017 and had a severe blood clot form under the incision line, and then it became necrotic and I had to have three more surgeries to close the gaping hole it left in my abdomen. I also had 11 blood transfusions. They had to give me vitamin K to stop the bleeding. My surgeon looked up the drug and was amazed by the complications of this drug, but there is no other med for IC."

• IC7...
• Taken for 6 months to 1 year
• December 22, 2017

For Interstitial Cystitis "I took Elmiron for about 12 months back when I was first diagnosed. My urologist put me on it after doing a DMSO installation every 6 weeks for about two years with moderate success. I do not recall the dose but do recall my doctor said it was a typical starting dose. I did not notice any difference in pain or symptoms for about three months and then it was only mild to moderate relief. I did, however, experience severe diarrhea that kept me near home many days, headaches, thinning hair, and a minor rash. I wanted to continue taking it in hopes the side effects would subside and more relief would come, but my doctor decided to end the trial and to start something else. My insurance did not cover the cost, but my doctor was able to get it."