|
|
Post by slkone on Jun 18, 2018 17:39:01 GMT
November 2018 update!I'm roughly 4 months out and my life has changed. I have felt amazing. So amazing that I have successfully weaned myself off of opiates after almost a decade (!) of using them. I haven't taken a Percocet in over 36 hours! I was never addicted to them, but your body does get physically dependent on them and opiate withdrawal is one of the toughest things to get through. I don't expect my pain to disappear completely so my doctor plans on putting me on low-dose Naltrexone, which is actually an opiate-antagonist. Some people have had great results with it. I have never hidden my dependence on narcotics because, despite their recent vilification, there is a genuine need for them in the treatment of chronic pain. I am really proud of myself. To top it all off, my pain doctor died suddenly about a week ago. You really develop a close relationship with your pain doctor because you MUST see them at least once a month. He was the best doctor I ever had. Luckily I saw him a few days before he died and I got to tell him I was weaning off of them. He reacted like a proud dad. This is for you, Dr. White! Also, I am starting a new hashtag: #thepowerofpoop  Another update!It's been roughly 6 weeks since my transplant. No GI symptoms, I'm pooping regularly - I used to be able to go 10 days without pooping. When they gave me the transplant, they said there was anecdotal evidence that this could affect my AI diseases. I have RA and Ankylosing Spondylitis. I was able to go horseback riding for 3 hours, tube down a river, and hike for miles on my vacation. I went to a waterpark for 5 hours yesterday. Days go by without me thinking about pain. I have cut down pain meds considerably and I am optimistic that I might be able to ditch them completely. I have kept the weight off. On top of all that, I am about 5 days late on my Cimzia and my joints look almost normal. I am thrilled and amazed! It is so difficult when you have chronic illness and pain to be optimistic. I have had good periods before, but never this long. What usually happens when I have a good stretch is that I come crashing down. To have chronic pain and illness is to be in a constant state of grief. You get your hopes up and then it all comes roaring back. I am trying to just enjoy this reprieve and make the most of it and not dwell on what the future may hold. I am telling you, if this trend continues I will absolutely believe that FMT is the future for AI disease treatment! Update - had the FMT on Tuesday via colonoscopy. I was not a candidate for the oral route. I already feel like a different person. It takes 2-3 months for the donor's biome to take over, but they said most people feel better immediately. I definitely do. I've lost ~15 lbs since March and ~30 lbs since December. I am technically no longer overweight. That's the only good thing about this whole episode. I've been dealing with it on and off since March and it has been exhausting. If you ever suffer with this scourge do not hesitate. It sounds gross, but it is worth it. So I've had my 3rd recurrence, which means I'm due to receive a fecal transplant. I can't find my thread from a few months ago about C. Diff, but I know there are some Peas who have had it or have had relatives with it. My GI wants to do the transplant, but not the old way via colonoscopy or NG tube. There is now a stool bank that provides freeze dried poop in capsules. You have to take 30 of them in 40 minutes! Has anyone ever done this? Or any other transplant procedure?
|
|
Deleted
Posts: 0
Aug 18, 2025 21:51:28 GMT
|
Post by Deleted on Jun 18, 2018 17:57:22 GMT
I thought the point of the fecal transplant was to receive fecal matter that came from someone in your household? Does the stool bank turn a household member's stool in to freeze dried capsules or do they provide a random stranger's fecal matter?
|
|
|
|
Post by christine58 on Jun 18, 2018 17:58:50 GMT
So I've had my 3rd recurrence, which means I'm due to receive a fecal transplant. I can't find my thread from a few months ago about C. Diff, but I know there are some Peas who have had it or have had relatives with it. My GI wants to do the transplant, but not the old way via colonoscopy or NG tube. There is now a stool bank that provides freeze dried poop in capsules. You have to take 30 of them in 40 minutes! Has anyone ever done this? Or any other transplant procedure? this thread 2peasrefugees.boards.net/thread/76382/diff-new-question |
|
MaryMary
Pearl Clutcher
Lazy
Posts: 2,976 
|
Post by MaryMary on Jun 18, 2018 18:17:40 GMT
I have not had the capsule version, but I went to England last year for a fecal transplant to treat Lyme disease and I would recommend it to anyone. It was life changing for me. I hope the US starts allowing them for more than C Diff again.
|
|
|
|
Post by Delta Dawn on Jun 18, 2018 18:29:46 GMT
The pills sound more civilized than a tube going up your nose to administer it. It sounds very promising and I wish you lots of good health!
|
|
|
|
Post by cathyb on Jun 18, 2018 18:39:33 GMT
My mother in law has had the transplant recently. The first time did not work for her and the 2nd appears to have. She is 87 years old. The original hope was to use my niece or nephew, but for various reasons, that was not possible. They used the "bank". I have never heard of the pill version. I had never heard of this prior to my mother in law needing one but it was appears to have helped her tremendously.
|
|
momto4kiddos
Drama Llama
Posts: 5,156
Jun 26, 2014 11:45:15 GMT
|
Post by momto4kiddos on Jun 18, 2018 18:42:36 GMT
I learn so much from the peas...never knew they could do things like this.
|
|
|
|
Post by slkone on Jun 18, 2018 19:09:54 GMT
I have not had the capsule version, but I went to England last year for a fecal transplant to treat Lyme disease and I would recommend it to anyone. It was life changing for me. I hope the US starts allowing them for more than C Diff again. I'm glad to hear this because I'm keeping my fingers crossed that a transplant could positively impact my AI diseases. The only thing that was good about being on antibiotics for so long for the C Diff is that my RA improves dramatically, so I believe there's some kind of bacterial component to some of my AI issues. And there are a lot of theories revolving around AI diseases and the gut. It would be amazing if this could be beneficial for more than my poor, beaten up colon! |
|
|
|
Post by slkone on Jun 18, 2018 19:12:23 GMT
My mother in law has had the transplant recently. The first time did not work for her and the 2nd appears to have. She is 87 years old. The original hope was to use my niece or nephew, but for various reasons, that was not possible. They used the "bank". I have never heard of the pill version. I had never heard of this prior to my mother in law needing one but it was appears to have helped her tremendously. Yes, they have a poop bank for the pills, too. There have been recent studies that show the pills are just as effective than the other, more invasive routes. I'm at the point that I'm willing to do whatever it takes to just nip this in the bud! |
|
|
|
Post by slkone on Jun 18, 2018 19:18:43 GMT
So I've had my 3rd recurrence, which means I'm due to receive a fecal transplant. I can't find my thread from a few months ago about C. Diff, but I know there are some Peas who have had it or have had relatives with it. My GI wants to do the transplant, but not the old way via colonoscopy or NG tube. There is now a stool bank that provides freeze dried poop in capsules. You have to take 30 of them in 40 minutes! Has anyone ever done this? Or any other transplant procedure? this thread 2peasrefugees.boards.net/thread/76382/diff-new-questionThe donor used to have to be from the recipient's household so they share similar intestinal flora, but recent studies have found that pills from a donor bank are just as effective. A group of guys started their own fecal donor bank after they watched their friend struggle with C. Diff. My GI said anyone can order the pills but I couldn't find that option on the site. It said that there must be a prescription. I would have tried it before the 2nd round of antibiotics if that were the case since the transplant is so much more effective! |
|
|
|
Post by crimsoncat05 on Jun 18, 2018 19:30:26 GMT
I really hope the transplant (if you go ahead with it) helps you out, and that it can help some of your autoimmune issues, too. My sister's colon was impacted significantly by a looooong undiagnosed bout with C. diff a number of years ago; after seeing how miserable she was- and what it did to her health- with just the ONE occurrence, I can't imagine what it's like for you to have to go through the whole C. diff battle multiple times!
|
|
MaryMary
Pearl Clutcher
Lazy
Posts: 2,976
|
Post by MaryMary on Jun 18, 2018 20:10:16 GMT
I have not had the capsule version, but I went to England last year for a fecal transplant to treat Lyme disease and I would recommend it to anyone. It was life changing for me. I hope the US starts allowing them for more than C Diff again. I'm glad to hear this because I'm keeping my fingers crossed that a transplant could positively impact my AI diseases. The only thing that was good about being on antibiotics for so long for the C Diff is that my RA improves dramatically, so I believe there's some kind of bacterial component to some of my AI issues. And there are a lot of theories revolving around AI diseases and the gut. It would be amazing if this could be beneficial for more than my poor, beaten up colon! The fact that your RA improves with antibiotics definitely sounds like Lyme disease could be the real culprit. My “MS” symptoms improved like crazy with antibiotics. Best of luck to you with your treatment. There really are no negative side effects with the fecal transplant. |
|
PrettyInPeank
Pearl Clutcher
Posts: 4,691
|
Post by PrettyInPeank on Jun 18, 2018 20:29:44 GMT
I saw a video on this recently. It's disgustingly fascinating. They supposedly look for donors who were born vaginally, and had zero or minimal lifetime antibiotic use.
|
|
|
|
Post by slkone on Jun 18, 2018 20:41:29 GMT
I saw a video on this recently. It's disgustingly fascinating. They supposedly look for donors who were born vaginally, and had zero or minimal lifetime antibiotic use. How interesting! I didn't know that! |
|
|
|
Post by slkone on Jun 18, 2018 20:47:30 GMT
I'm glad to hear this because I'm keeping my fingers crossed that a transplant could positively impact my AI diseases. The only thing that was good about being on antibiotics for so long for the C Diff is that my RA improves dramatically, so I believe there's some kind of bacterial component to some of my AI issues. And there are a lot of theories revolving around AI diseases and the gut. It would be amazing if this could be beneficial for more than my poor, beaten up colon! The fact that your RA improves with antibiotics definitely sounds like Lyme disease could be the real culprit. My “MS” symptoms improved like crazy with antibiotics. Best of luck to you with your treatment. There really are no negative side effects with the fecal transplant. I remember your story. I grew up and spent the first 25 years of my life in NJ, which is a hotbed of Lyme infections. I've gone back and forth with doctors about the diagnosis. Ironically I worked for a rheumatologist while I was in high school and nursing school and he was proficient in Lyme diagnosis. When I started having symptoms of RA and AS (Ankylosing Spondylitis) I called him to get his opinion and he said since I have little knee involvement it's probably not Lyme. But I know that docs who are supposed to be proficient with Lyme don't always know squat and I believe that it can hide, doesn't always show up in blood tests, and can manifest in so many different ways. I think this can be a good thing for me all around, so maybe it's a blessing that I got C Diff. I'll keep you posted! |
|
|
|
Post by cawoman on Jun 18, 2018 22:48:47 GMT
|
|
~Susan~
Pearl Clutcher
You need to check your boobs, mine tried to kill me!!!
Posts: 3,259
Jul 6, 2014 17:25:32 GMT
|
Post by ~Susan~ on Jun 18, 2018 22:56:08 GMT
I have not had the capsule version, but I went to England last year for a fecal transplant to treat Lyme disease and I would recommend it to anyone. It was life changing for me. I hope the US starts allowing them for more than C Diff again. I'm glad to hear this because I'm keeping my fingers crossed that a transplant could positively impact my AI diseases. The only thing that was good about being on antibiotics for so long for the C Diff is that my RA improves dramatically, so I believe there's some kind of bacterial component to some of my AI issues. And there are a lot of theories revolving around AI diseases and the gut. It would be amazing if this could be beneficial for more than my poor, beaten up colon! The more I read about gut issues the more I am convinced that a lot of other problems can come from an unhealthy gut. Intermittent fasting and eating lower carb has helped tremendously with my tendinitis in my heels and with arthritis pain. I had a node on my index finger, second knuckle that was HUGE and it has all but disappeared. I ordered some bone broth today to help keep me in an even keel with chemo. It is suppose to help keep the good bacteria in check. I certainly hope so. |
|
|
|
Post by MsChiff on Jun 19, 2018 17:50:24 GMT
If a fecal transplant would fix my Crohn's and RA so I no longer had to do the drugs, I'd do it in a nanosecond.
|
|
|
|
Post by slkone on Jul 12, 2018 22:33:44 GMT
If a fecal transplant would fix my Crohn's and RA so I no longer had to do the drugs, I'd do it in a nanosecond. I have RA, too. There is anecdotal evidence that it can help RA and more anecdotal evidence that it can help Crohn's. I would look into it. I can keep you posted to let you know if it helps my RA if you'd like. |
|
|
|
Post by christine58 on Jul 12, 2018 22:35:20 GMT
Update - had the FMT on Tuesday via colonoscopy. I was not a candidate for the oral route. I already feel like a different person. It takes 2-3 months for the donor's biome to take over, but they said most people feel better immediately. I definitely do. I've lost ~15 lbs since March and ~30 lbs since December. I am technically no longer overweight. That's the only good thing about this whole episode. I've been dealing with it on and off since March and it has been exhausting. If you ever suffer with this scourge do not hesitate. It sounds gross, but it is worth it. Great news!~~ |
|
LeaP
Pearl Clutcher
Posts: 3,939
Location: Los Angeles, CA where 405 meets 101
|
Post by LeaP on Jul 12, 2018 22:38:42 GMT
Thank you for the update. I'm glad you are feeling better. And I thank you for the anecdotal evidence because read news reports and wondered about real people.
|
|
|
|
Post by AussieMeg on Jul 12, 2018 22:39:28 GMT
I'm glad that you're already feeling so much better! I love the Peas, I would never have known there was such a thing as fecal transplants if it weren't for this place. Now off to Google some more.....
|
|
|
|
Post by Delta Dawn on Jul 12, 2018 22:41:49 GMT
Wonderful news! Are you cured now? What are the next steps?
|
|
Deleted
Posts: 0
Aug 18, 2025 21:51:28 GMT
|
Post by Deleted on Jul 12, 2018 23:11:59 GMT
Great news and I am so thankful that you are feeling better. Isn't science a wonderful thing?
|
|
|
|
Post by teddyw on Jul 12, 2018 23:47:36 GMT
Hope you’re feeling 100% soon
|
|
GiantsFan
Prolific Pea
Posts: 8,704
Site Supporter
Jun 27, 2014 14:44:56 GMT
|
Post by GiantsFan on Jul 12, 2018 23:59:43 GMT
So glad it's working for you. I know someone that had a fecal transplant and almost immediately she was feeling better. BTW - she's in her 80's and was down to around 90 lbs.
|
|
AllieC
Pearl Clutcher
Posts: 3,129
|
Post by AllieC on Jul 13, 2018 0:18:21 GMT
That's an excellent update. I hope you continue to feel much better.
|
|
momto4kiddos
Drama Llama
Posts: 5,156
Jun 26, 2014 11:45:15 GMT
|
Post by momto4kiddos on Jul 13, 2018 0:19:20 GMT
Glad that you are feeling better!!
|
|
|
|
Post by Crack-a-lackin on Jul 13, 2018 2:06:54 GMT
Glad it went well! Keep us updated on your progress. It’s a fascinating procedure.
|
|
|
|
Post by iteach3rdgrade on Jul 13, 2018 2:50:08 GMT
I'm glad you are feeling better!
|
|
