Well, I did

It was not very successful (came right back out, couldn't retain the enema). However I am giving it another shot today. My main goal:stop the bleeding and go into remission already! With psyllium husk which I started a week ago I have gone from 3 liquid bloody bm to solid bloody bm with slightly less urgency.

Post Edited (laughingduck) : 10/2/2016 10:43:02 AM (GMT-6)

Definitely good luck.

And I hope it works for you.

Just curious what's your diet like?

I have been dairy free for 3 years, I react very strongly to it, even tiny amounts in food. I am mostly gluten-free (I eat oatmeal daily, and soy sauce when I'm out for sushi). I sometimes have gf bread but very rarely because of all the weird ingredients in it. I try to stay away from anything processed or with preservatives. I was scd for 6 months but found I felt bad on it, anxious and always hungry, and it was time consuming. That being said I eat a lot more meat and veggies and less starch than the average diet. Nuts and seeds I avoid as they increase bleeding.

I take fish oil, vsl, turmeric, psyllium, occasional multivitamin or b vitamin, and the maximum dose of mezavant (a once a day mesalamine med).

I'm a lot better than I was but still in this loooong flare, hoping the ft will be the last step to pull me out of it!

MaxMilian have you tried psyllium? This gave me solid bm's. I feel like it's cheating a bit since if I stopped taking it I'd probably return to diarrhea, but it makes me feel more normal which is nice!

Post Edited (laughingduck) : 10/2/2016 10:44:02 AM (GMT-6)

laughingduck said...
...

What does the 'M' in FMT stand for?

'M' means microbiota

Fecal Microbiota Transplantation

Thanks for that recipe! I never thought of baking with it! I need to find psyllium seed insead of just husk. I love chia too! Sometimes I feel it makes my bleeding worse though :(

Just a quick update. Yesterday afternoon I had no blood with my bm's (yay!) but I decided not to get excited until this morning. It's morning I had no blood with my first bm, but blood with the next two :(

Post Edited (laughingduck) : 10/2/2016 10:44:38 AM (GMT-6)

Thank you :)

It's nice to be able to talk about it on here since it's not exactly something I chat about with others over a bean burrito ;) I don't think many healthy people would understand the need to try just about anything to help manage this disease! I hope other people here can learn from my experience, whether I end up in remission or not.

Did my first one today. Retaining well - at the 3 hour mark. Using my six year old daughter's who has a stomach and gut made out of iron! Praying on my knees position worked well with my head to the ground. I stayed in that position for a good 10 minutes. Lifted my left leg up towards the ceiling and tilted...messaged my belly too. Stood up and worked on clean up, then went back into the position for another 5 minutes, then showered and went on with my day.

I'm a firm believer in the human probiotic! A big thing to remember is those of us who have symptoms, we all have tissue that is pretty banged up to say the least. The FT is going to do it's job, but it's not going to miraculously heal all of your tissue wounds/scars over night. When symptoms pop up, it's really important to go as bland as possible in your diet. Any roughage is going to be hard on fresh wounds and possibly even open up ones that are healing. When I have symptoms, I pretty much go BRAT - I have banana's and hard boiled egg whites in morning. I do smooth almond butter on white bread (no corn syrup) or rice bread, apple sauce, extra firm tofu. I also take a liquid multi-vitamin, and I try to juice every day to get nutrients which will aid in healing (I always strain it before I drink it). Mostly cabbage and apple, or dino kale and apple.

Was on canasa every night for past month. Realizing that my inflamed rectum is most likely a fissure. Dr. wanted me to go on prednisone. Instead I ditched the canasa, and found Key E suppositories, which are addressing the inflammation and (unlike the canasa) aiding in healing. Also using coconut oil topically. It's been two nights and I'm already improving!

Hoping this works for me :)

I did a "top up" FMT today at the CDD. The service at the clinic is excellent. The nurses are really good.

laughingduck said...
I hope it works for you too tennisball! A good reminder that the healing process can take time. I find certain foods do make the bleeding worse, like nuts and seeds and some veggies. I can tolerate lettuce and cooked veggies though so I can't complain too much. It has been a matter of trial and error to see just how much my gut can tolerate.

Fingers crossed for both of us the ft's work. We are both using our daughters as donors too, I wonder if the relationship will make a difference!

Thanks - you too! Yeah, I definitely looked at my daughter a little differently tonight. Nothing is worse when you don't know where you'll be and if you'll be able to support your family (for me anyway). Today I had hope and my spirits were up, the way I remember them being when I'm in remission. I'm going into my ninth hour without having to go. There's a battle going on in my gut! Come on good guys!!!!

Yeah, diet is essential! My latest theory is the majority of us have some strain of bacterium that is beating up on us. For me, it tends to attack when the immune system is down (either when I'm really stressed or come down with the flu). So your tissue takes a beating and yes, it's super sensitive to what we eat.

Last spring I took probiotics, went bland, juiced daily, exercised (I always do) and I went into remission. Once I did, I stayed bland for 2 months. Then I went full on vegan and had fiber every day/night (Kale with massed avocado's and lemon tossed over a plate of quinoa...my favorite!!), seven grain cereal with flax seed every morning. I was eating things I hadn't ever dreamed of eating in 17 years!

Did I rush into it? Most likely...in late November I ate out and my rectum swelled. I believe, one, I still have the strain attacking, and two, I have more healing to do. This time I'm hoping to destroy the little buggers, and then stay on a low fiber diet for at least 3 months, then move onto things like kale and quinoa, and I'll hold off on seeds and nuts.

I didn't mean to hijack this thread. Excited others are doing it! Keep trying and let's all learn from each other. Onward and forward...I'll start a new thread in a week or so once I see how things are working out.

hmmm interesting...keep us updated guys..

I did it too! Finally! So excited about it!

My donor is my 2 year old daughter - a bit young, perhaps, but better than not doing it at all.

I only managed to retain it for a couple of hours (my colon made crazy sounds in that time). I hope this will improve each time I try it. I can't do an FT everyday because I need to be near her when she poos and then have someone nearby to look after her. So I'm going to attempt 4 days a week for a while.

I realise this might not be a cure or long-term remission; I'm just looking for a safe therapy to get through another pregnancy at this stage.

Any news from the other FMT-ers?