Probiotics - waiting for the other "shoe" to drop

Hi all. Just joined this forum today and wanted to share my story - the short version.

Diagnosed with Crohn's when I was 13 (I'm 37 now). Tried the full gamut of medications. Many worked for a time, but then I had to try something new. Had surgery when I was 18 to take out a small part of my small bowel. Disease came back two years later. Went on 6MP, Entocort, Questran powder mix, etc. Had partial help with it for awhile, then need to go on Remicade. Remicade was amazing for 7 full years. Then I had some skin irritation eczema and wondered if the Remicade was causing it.

So I pulled back on Remicade to once every 4-6 months. Turns out the skin thing was not Remicade-caused. But by the time I figured that out, I was kind of off Remicade and doing super well. I added the use of probiotics, Vitamin D, enzymes, and eating better foods. Stayed on the 6MP and Questran, but that's it.

Now it has been 3 years off Remicade and I'm doing great! Not sure if it's the probiotics or not, but at this point I credit them with my health.

My aunt has colitis and years ago was told by a doctor to have a colostomy when nothing else would work. Her son's pediatrician told her to try probiotics. She took them for two months and BAM - completely symptom free. She's been symptom free for 13+ years now, ONLY on probiotics. Amazing. So, I figured we have similar genes, so maybe I'd try it too. And it has worked great for me. Also, no more skin issues at all. I'll still have some minor cramping now and then, but it's very light compared to what I used to have. I'd even say I'm doing better now than when I was on Remicade! Hard to believe, I know.

Maybe there's another reason I'm doing so well. All I know is that I've been on a really low dose of 6MP for three years and that's it (something that wasn't working for me pre-remicade). So, I don't know how else to explain it. Doctors don't either. Just taking it a day at a time.

I take Garden of Life Probiotics with HSO's. 4/day.
Also, Garden of Life Omegazymes with every meal.
I also take turmeric every day, and Vitamin D.
Sometimes fish oil.
My wife helps me to eat much better now too. Lots of butter, fatty foods, organic meats and dairy, etc.

Anyway, I'm curious if anyone else has had success with probiotics. I'd love to hear your story.

Hi and welcome, thanks for your testimony.
Im really glad to hear success stories such as the one of your aunt and yours too. do you plan on keeping the 6-mp? Im on 50mg/day. 75mg/day was my therapeutic dose in the past. I am starting to think that my lifestyle changes (diet, inclusion of several supplements as listed in my signature) are finally working and helping me taking a lower dose of medication. Its been a year I am in remission on this 6-mp dose and this also is against what was expected...

I have other medicines I am on but I also take probiotics.

2

Hello again, sorry for my slow response. To "Lady Organic" above, I'm not sure if I'll stay on 6MP or not. Right now, I am, but also don't worry if I miss a day here or there. Pretty sure it's not doing anything for me since my "therapeutic dose" according to my doctor (i.e., what my body/liver can handle) is 100mg. And, again, I take 50 - wasn't comfortable going up.

I'm still doing well. Recently, after having some stomach pain (and reflux), per some friends' advice, I went on HCL enzyme supplements which have done wonders for me. Didn't realize I had too LITTLE stomach acid rather than too much. Taking HCL (hydrochloric acid - the aide that's already naturally in your stomach), and/or a nice apple vinegar cocktail, with meals has really helped knock back reflux pretty much 100%. It's amazing. I have a lot of friends (with IBD or just a past with reflux, or food allergies) that do the HCL thing and it has cured them. One friend thought he had throat cancer it was so bad. He was on the max dose of antacid meds a person could take, and his doctor said he had never seen a case so bad. He went on HCL tablets during meals and bam, 100% cured for years now.

If you are talking IBD, there is no cure for it. I am glad that your friends seem to be doing well.

Edit:
Found out the brand in your original post. Thanks.

Hi Wach0031,
Thanks for sharing your experience. May I ask you what brand of probiotics supplement are you using?
Thanks.

Sure, I use Garden of Life probiotics with HSO's: 4/day. It's a broad spectrum probiotic.
I also buy some of their "live probiotics, req. refrigeration" pills and take some of those on occasion.
Also, in my story above, I mentioned how much my aunt found relief with probiotics. She just uses the Lactobacillus GG type (Culturelle brand) you can get at Target or Walgreens. I'll take these ever so often as well.

My main Crohn's meds I'm still on: 6MP 50mg/day, Questran mix - 1 scoop 2x/day.

Other: Betaine HCL enzymes, Vitamin D, Turmeric, and I make homemade bone broth and drink that regularly.