My Experience with FT for UC - MikeH

Discussion started by MikeH 6 years ago

So finally, after 7 months of researching, testing and preparing i've starting my first foray into the world of fecal transplants. Here's what's happened so far:

Prep:

Didn't take any antibiotics mainly because I don't have a doctor helping me but i did take natural antibiotics in the form of silver at 400ppm and I took the interfase plus anti-biofilm supplement.

I took the silver at increasing doses for about 3 weeks and the interfase for about 10 days.

I also did a bowel prep wash out the day before starting (I used picolax).

Day 1:

Not the best of starts. Used too much water with stool and the mixture ended up too runny. I also didn't take imodium. Did first infusion about 2pm. I was only able to hold it for about half an hour. I probably got some goodness from it but it was not as I had hoped. In my head the first FT is really important as that is time when your gut is going to be the most empty and receptive to the incoming flora.

Felt pretty down the rest of the day and felt quite rough too. I think this may have had more to do with the lack of food/vitamins/minerals the previous couple of days. I'm pretty underweight at the moment anyway so more susceptible to this kind of thing.

Day 2:

Took imodium about 9:30am. Got a much thicker mixture this time - less quantity wise but i'm not too worried about that. Did infusion about 11:30. Thought initially that I was going to have to expel it but the urges died down pretty quickly and I was able to lie in bed for a hour or so with no trouble.

Spent most of the day sat down or moving around slowly so as not to risk losing the infusion. Not sure I needed to be quite so cautious.

By bedtime I still hadn't had a bowel movement. The strange thing is that it has been so long since I have been able to go to the loo when I choose to that I can't remember what the sensation/experience of needing the loo feels like!

The only thing I can say is that at no point during the day/evening did I feel like I had to rush to the toilet but I could feel there was something in there. I'm reliablly informed by my donor that this is how 'normal' people know when they need to go!

I did try and go before bed and what came out was liquid. I think that this was the infusion coming back out - it smelled like my donor's stools! I held it for over 8 hours in the end so hopefully it did its job.

Not sure how long the imodium is going to effect me but until I have a bowel movement I can't say for sure if anything has happened yet.

Going for an evening infusion for the third day. If I can do it just before bed and then get to sleep i can hold it for 8 hours without having to think about it rather than spending the day like a fragile zombie!

 

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MikeH
MikeH
Hey guys. Sorry for not posting any updates. I'm rubbish at doing this. I try to keep up a blog as well but I just think i'm not the blogging type. I have never been able to keep a diary either!

I've just come back from a week's holiday which was great timing as it gave me a chance to chill and see the results of the FT.

Definite improvements! Not the miracle cure I might have hoped for but i'd say things are the best they have been for about two years. During the holiday (which was at centerparks and quite active) I was going 2/3 times in the morning, quite well formed and with no blood and then was confident the rest of the day that I could be out and about without worrying. I didn't ever stray too far from the nearest toilet but I really think the distraction and the physical exercise helped keep me from getting into the anxiety vicious cycle that I often can find myself in.

Energy levels have been much better and i'm generally a lot happier.

BMs still smell like my donors so i'm taking that as a good sign.

Plan now is to carry on with the FT once a week for a while and see what happens. It could still be a transient success and things will revert back but I hope not. One theory I had was that the FT wouldn't cure me but would give me a better foundation to build on and give my gut the break it needs from the bad guys to continue to heal. This could be what is happening.

I managed about 9 infusions in the time I had before going on hols including a couple of days where I did one mid afternoon and then one overnight as well!

Didn't use the imodium again after the first go. Even one tab was just too much for me. I think the problem I had with the first infusion was that it was too runny and therefore harder to hold. It may have also been that the bowel prep was still in my system too I guess. Hard to say for definite.

I would even recommend that those people going to try FT give it a full trial run before going for that first infusion. I think the first one is key as this is the point when the bowel is at its emptiest.

With regards to the syringe - didn't work out. I think they were meant for single use only and after a couple of uses had lost its lubrication making it damn near impossible to push the plunger down.

I went for the empty fleet enema bottle method after that.

I'll let you know if I get further improvements but I do wonder if FT has done all it can for me. Its up to good ole supplements, probiotics, diet, exercise and positive thinking now!

Good luck to everyone else and thanks for all your sage advice.

Mike
6 years ago
Maff
Maff
Very sorry to hear about the redundancy Mike...but as you say it came when you actually need a bit of extra time to take care of other "business". I'm crossing my fingers your health benefits from the HPI and a better job comes along!

Your technique with the syringe sounds excellent. Anything that helps you hold the infusion has to be a good thing.

How have things gone over the past week? I hope your lack of posting is a good sign and you've been busy with more enjoyable things. Let us know how you're getting on when you get the chance!
6 years ago
Redozipous
Redozipous
Glad you have begun Mike. Hope it'll work. I think chances are espacially good for symptoms primarily of the gut . Keep us updated.
6 years ago
MikeH
MikeH
Thanks Maff. Good to finally get going.

I sieved the mixture after blending but kept it to the consistency of thick paint. I use a 100ml syringe (which I actually got from a hydroponics website!) coupled with an enema tube to get the FT further round. Having the mixture sieved gets rid of the lumps but because the syringe has a plunger, I can make sure the mixture gets through and into the bowel. It seems easier to hold a thicker mix so maybe something you could try if you go again.

I only took one imodium and didn't go for a day and a half! I can't see how I can use the imodium if a single tablet has that kind of effect on me!

As for symptomatic improvement, the imodium has made it difficult to tell but today (day 4) I felt the morning BMs were less urgent and the FT certainly hasn't made things any worse so I guess time will tell.

Here's the update:

Day 3
Didn't manage to do an infusion today. Was planning on waiting until the evening but even then I hadn't been and I was feeling a bit bunged up and didn't want to put more matter in there!

Day 4
Phew! Went this morning so was able to do an infusion late morning. Able to hold it for an hour and a half. Could have held it longer if i'd stayed in bed but I can't do that all day! When I went to the loo it didn't feel like i'd passed enough for all of it to have come back out so maybe I retained some. No further BMs (now 19:15).

Plan is to do another FT just before bed and try and go to sleep and hold it until morning.

I actually got made redundant on Thursday. Bit of a bummer but it gives me a lot more free time for the fecal transplants. Every cloud eh...
6 years ago
Maff
Maff
Hi Mike,

Good to hear you have finally got underway with things. It seems like you have been planning this for a long time...and I'm sure it feels like a whole lot longer to you!

I personally found that the only way I could get the HPI mixture through the enema tube, particularly the nozzle, was to turn it into a watery liquid by first hitting it with the blender and then filtering it through a sock. I ended up with a brown liquid. If I tried to leave it any thicker the enema nozzle just got clogged and things went nowhere. It sounds like this isn't a problem as researchers and clinicians have reported using coffee filters which are very fine and would also result in a watery liquid (coffee does after all!).

It sounds like you may need to titrate your Imodium dose so you don't need to worry about things wanting to come back out too soon! I can't hold an enema for more than 30 minutes usually but taking one tablet of Imodium prior to the HPIs meant I could hold them until my next regular bowel movement the following day. In contrast, taking two Imodium caused constipation so there is a fine line you need to find.

I hope you've been able to continue today and you start to get to grips with the procedure and more importantly...see some symptomatic improvement. Good luck!
6 years ago

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