IBD Patients Share Their Experiences With Probiotics

Probiotics can be a controversial topic in the IBD community. Can they actually help conditions like Crohn's and ulcerative colitis?

Well, the science is mixed. There is some evidence that probiotics can be helpful for ulcerative colitis patients in some cases.¹ But there's very little evidence in the way of Crohn's disease.²

Asking IBD patients about their experiences

However, we all know a lot of what we learn comes from other patients, so I asked fellow Crohn's and colitis patients to share their own experiences with probiotics and IBD. It's worth noting these are people's purely personal experiences of taking probiotics with IBD, but I just thought it would be of interest to collate them.

I asked people in the Facebook groups "Healthy Living with IBD" and "My Crohn's Friends" to share their experiences. Here are some of the responses I got...

What's your experience with probiotics and IBD?

• "I used Biokult when going through a period of taking multiple courses of antibiotics for abscesses. I believe they helped in avoiding my Crohn's symptoms flaring as they had before on antibiotics. However, when I took them for a couple of months when not taking antibiotics, I found that they didn't seem to have any effect so stopped!"
• "I tried various probiotics for Crohn's but for me, the only place they impacted on was my purse!"
• "I have been lucky. If I take them, I don't have as much distress. The important part is to take them at dinner time, at the end of the meal, and don't take the largest population pill out there. I only take the Nature's Bountry CD (Controlled Delivery) 2 billion probiotics. Also helpful when you are on antibiotics. I usually double the intake (one in the morning 2 hours after the antibiotic, and the usual at the evening meal)."
• "I am in 18 months in remission after surgical referral for colectomy after all meds failed with UC. I take Living Nutrition Your Flora, Terrain, and Sensitive. They’ve changed mine and my family’s life. I am not on any other medicine after 10 years of biologics, hospital stays, lost jobs, and months at a time housebound. I just wish this option was taken more seriously!"
• "I've been taking probiotics for years. Have been med-free since my resection in early 2017. Whether it's down to the probiotic or not I'm unsure."
• "I tried Udo's 8 and BioKult which didn't sit well with me. I've tried Solgar's Ultibio (as the strain is supposed to help with iron absorption) - it was ok. But I keep going back to Optibac Every Day Extra Strength - it's a multi-strain and doesn't have FOS. I also take Optibac Saccharomyces Bouldardi."
• "I try to eat/drink fermented foods every day and when I can eat prebiotic foods. I did a stool test a couple of years ago and while not perfect the person who did it said that considering I had Crohn's disease my gut was doing pretty good (low in SCFA's though). I'm happy enough to keep taking them - they may be doing good but they're doing no harm anyway."
• "I  have taken Align. I’ve never felt a difference whether I take them or not."
• "I have tried Align, and felt no difference. I took it for about two months or so."
• "I make my own yogurt by fermenting it for 24 hours. I started doing it because the SCD diet said to. I don't, however, use the starter SCD says to (the yogurt I use as a starter contains bifidobacteria). Doesn't make a difference unless I also control my diet, which isn't always exactly what SCD says either. I tried VSL3, but felt worse on it. Whether it was the VSL3 that was actually causing this, I wouldn't know unless I tried it again, but I think I'll stick to my homemade yogurt now. Served me well for the last 9 years or so."
• "I take them and I notice a big difference. For instance, I don’t bloat up and no gas. I get probiotics for IBS rather than IBD."
• "I am currently taking Culturelle and definitely notice a difference. I’m on a course of antibiotics and as soon as I started the probiotics I noticed my bloating and discomfort lessen, and BMs became more solid. I’ve also taken them while not on antibiotics and have had good results with BioKult. VSL3 seemed to upset my stomach."
• "I use Phillips colon health and digestive advantage, I chose them based on my research they had the strains that were most linked to positive results in IBD. I definitely notice a difference if I don't take them. I add Florastor when I'm on antibiotics because it is a yeast-based probiotic. My doctor prescribed me VSL3 once but it made me so sick I couldn't function for 3 days after 1 dose."
• "Taking Phillips colon health... actually helping."

Have you found probiotics helped you? I hope these patient experiences have been useful.