FMT via pills - it's happening!

[Selady]

Hi everyone,

I know that I haven't been a frequent poster recently but I was a few months ago. I have suffered from c. diff for about 7 months now and have tried every medication treatment option and been hospitalized. I am only 31 and this illness has just flipped my entire life upside down! Since I last posted, I have since had 3 recurrences (6 episodes total) and have been on vanco 4x/day at 250mg since Decemberr. Anytime we try and taper down, I relapse again, even while on the vanco.

I am overwhelmed and overjoyed to say that I have been accepted in Dr. Thomas Louie's clinical study on FMT via pill. Dr. Louie felt like a mythical beast at times. Not only is he talked about all over the internet, but my ID specialists would all refer to him but no one had ever met him (I live in Calgary where he practices). And no one knew if he was even accepting patients at all or still performing the FMTs! I was warned that even though 3 doctors had referred me to him, that I might never hear back and would have to travel to be treated elsewhere.

Well, I received a call last Friday that my referral had been accepted and I met with him yesterday. I will be part of his clinical study which is comparing the use of FM pills to transplant via colonoscopy. I was screened and placed in a computerized system that randomized which method I would receive. I am very excited to be able to receive the pill method as it's innovative and neat to be a part of something ground breaking! Less than 150 patients have received it here. I love that my terrible time with C. Diff. will contribute to the research and development for a sustainable treatment option.

I know that there is another post in this forum that outlined an amazing Q&A regarding pills, but I would be happy to ask Dr. Louie anything else you would like to know! My procedure is next week, which feels like a dream.

[Misscshell24]

That is great! Thank you for coming back to post about it here and please do let us know how everything goes. Prayers and good thoughts that this will be the end of it for you and you're doing better very soon.

[getwellsoon]

So happy for you. Please do post back and let us know how it was and also how you feel and do post procedure. Good luck and prayers for you.

[Bobbie]

Best to you. We will keep our fingers crossed. Keep us informed.

[Selady]

Thanks so much, everyone.

I have my FMT scheduled for 1pm this Friday and I am getting excited (and nervous)!

I am feeling very fortunate to have been selected for this procedure after suffering for 7 months and trying every type of medication treatment without success. Dr. Louie is fantastic to work with. He's a bit quirky but so kind and genuinely passionate about helping people.

I am really not looking forward to the prep with Colyte as I know that it makes me quite sick. Fortunately, I can break up the prep into two periods which I hope will help. Any tips or tricks with getting the Colyte down more easily? I haven't been able to find any of the flavour packages.

[beth22]

I'm really glad you have been accepted into the trial. Years ago, my ID put me in touch with Dr. Louie and he was just starting those pills. He offered for me to come and do it, but then my GI here did a colonoscopy transfer. I live in CA and did not want to go all the way to Canada with my donor in the middle of the winter. He was always very kind about answering my questions though and I know that my ID thinks he is a great doctor. I'm sure you will be in good hands. Please post and let us know how it goes for you. Is this procedure one that takes a few days of taking the pills or a one day thing?

[Selady]

Thanks, what a great story.

Part of the trial was to agree to be randomized to either the pills or the colonoscopy method and I am excited to be trying the pills. I hope that my participation in this study eases someone else's suffering in the future!

I will be taking 40 pills in one sitting, after about 20 hours of cleansing/fasting.

[Bobbie]

Salady,

You are probably taking the prep right now. Ugly stuff. The only hint that might help is to glug it down, set the timer for 30 min, and then reglug. Be sure to start early enough so you will be finished by tomorrow morning.

You will do fine. Everyone is nervous about the cleansing process. it is not my idea of a fun evening, but It will be a busy one.

[Selady]

Thanks for your support - it is so appreciated!

I managed the colyte so much better than the last time. I'm healthier this time and was able to take it the way I wanted from home. Last time, it was warm, unflavoured, and I had to take the entire thing in 2 hours - barely kept it down. This time I was able to chill it and since it's not for a colonoscopy I was able to mix in Gatorade power. Much easier and far less traumatic.

My prep is done now and I'm heading to the lab for my pills in 2 hours :)

[getwellsoon]

Praying for your cure. Let us know how you do.

[seekingcure]

Also praying this is the cure for you. Keep us posted.

[NanciT]

Wishing you the best!! Please let us know how you do!!

[Lee S]

Seledy,

How do you do on the pills?