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counting success stories of FT for UC

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Ulcerative Colitis
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Posted 7/25/2013 8:36 AM (GMT 0)
Herbgarden-Great news! I hope your son gains a full remission. Please keep us updated. Let me know when you feel your story should be entered the success list.

From information gathered so far I think perhaps better to administrate more often than once a week. However he was diagnosed only a few months ago so maybe this will work.

I am sure quite a lot of us would appreciate the name of the GI performing the transplant and infusions.

I'm still not sure when I will start infusions. I'm trying to recruit a second donor.

Wishing your son a full recovery,

Sharron

  

Posted 10/28/2013 9:16 AM (GMT 0)
Situation got much worse recently! I am disapointed with the small number of experiences shared on thread but thanks for all those who did write. Luckily I am on a week off from work but can't see myself going back next week. Decided that if it doesn't get better by the weekend I will start FTs. I bought everything needed apart from saline. My doctor told me that if I want to experiment on my self at home she cannot help me with it. What a ...Anyone knows if I can use Reverse Osmosis water? I saw filtered water for irons etc in the supermarket but it was writen on it "not for drinking" so I'm not sure.

Don't believe I will be able to retain enema with the state of my colon but will not be taking medicine to calm it down! As I wrote before the ASA-5 nearly completely destroyed my liver (Hepatitis- bilirubin 14.5).

I will keep writing in my old thread. 

Wishing you all a full recovery.

Sharron

Posted 10/28/2013 11:53 AM (GMT 0)
Hi Sharron, sorry to hear your inflammation got worse, hope it will clear up soon. i am on day 5 of FT, so far not too sure what it's doing to me. i had antibiotics for a month before, first colonoscopy infusion and then enema next day at bORODY CLINIC, now doing them at home daily with my husband as a donor, from what i understand testing the donor is very important, the healthier your colon during ft the better, and high fibre diet is very important too, that's what i've been told.i am not taking any meds or suppliments right now but thinking to add lglutamine and slippert=y elm, have no problems with retention, 1-2 formed bm a day and no blood (thank god!) the only problem is rectal pressure and pain in the low abdomen, it's not strong but it's there which is very annoying. i plan to continue with ft for 3 months and report any changes. oh and as for saline i found recipe online and making it myself, you can by distilled water for that in any chemist they using it to mix meds
Posted 11/6/2013 5:28 PM (GMT 0)
Hi Delata, thanks for your reply. I hope the fts work for you. I didn't start the treatment on Sunday. I think my gut needs to calm down a bit and also the local couple who are willing to make the donations wants it to be supervised by a doctor. I have a referral to see a GI and I hope he\she will be willing to do it or recommend on someone who will.
Please do update us as you go along the process. Also could you please write some more details about your condition? For example: you age, area effected, symptoms, medicine taken in the past and when stopped, etc.
I hope you get better soon.

Sharron
Posted 11/6/2013 5:31 PM (GMT 0)
Anyone knows what is the list of blood\stool tests for donor. I'v read Silverman's article and can follow his list. Perhaps it should be different for UC?

Sharron
Posted 11/6/2013 6:56 PM (GMT 0)
Hi Sharron,

Here is a link to the donor testing requirements that i used:
thepowerofpoop.com/wp/wp-content/uploads/2013/03/FMT-Donor-Tests.pdf

Also, here is a link to the sites DIY fecal transplant protocol. Hope it's helpful.
thepowerofpoop.com/epatients/fecal-transplant-instructions/
Posted 11/6/2013 9:28 PM (GMT 0)
Hi Everyone,

                  I'm hoping to be able to let you know I had a successful go with FT in 6 weeks or so. I'm starting a double blind trial at McMaster University in Hamilton, Ontario next week! I'll keep you posted of my results. Hopefully I get the treatment and not the palcebo. I'll let you know what the doctor's say about the success they've seen in the trial so far, it's been running since March 2012 and ends in March 2014.

Posted 11/6/2013 10:18 PM (GMT 0)
Good luck Kickboxer! Looking forward to your updates.
Posted 11/7/2013 3:40 PM (GMT 0)
Hi LooLover, Great, very useful information.

Hi Kickboxer, good luck! Are they doing it for the whole 6 weeks?
Posted 11/7/2013 9:00 PM (GMT 0)
Thanks for the wishes!

Basically I go in for a colonoscopy, stool and blood tests. They map out the bacteria straings in my colon, to the best they can at least, and then I get 1 FT a week for the 6 weeks. Doesn't sound like much but we'll see how it works. I'm in a flare and holding off going back on Pred or steroid enemas to calm it down because I want to do this trial.

Posted 11/8/2013 7:32 AM (GMT 0)
Thanks kickboxer and good luck for next week. Don't they do it if one is on medication? I thought it works better when medication is taken before and during enemas.

Just been to my GP. Flare is getting worse. Hoping to see a GI next week. Don't belieive he/she would agree to supervise fts. Anyway, I have to try.

Best wishes,

Sharron 

Posted 11/8/2013 8:42 AM (GMT 0)
Does anyone have the link to Borody's protocol for UC?
Posted 11/11/2013 9:34 AM (GMT 0)

Does anyone have any link to good studies of fecal transplants done to UC patients? Since my potential donor wants the fts to be supervised by a doctor, I have to try my best to present the evidence to the GI which I should soon see. Right now I only have Silverman's article "Success with home administrated fecal transplantation for chronic clostridium difficile infection" (2010) but that's not on UC. I also have Borody's protocol but I think that's for C.difficile infection as well.

will appreciate any relevant information.

Flare is getting worse. Lots and lots of mucous, last week I fasted from Sunday night to Thursday lunch time. I had a chamomile enema on Monday and Tuesday morning. Managed to survive a day at work. Sadly the condition didn't get better. I was very careful with what I ate between Thursday and Sunday. I started a fast again last night (Sunday). Hope I can keep it going again until Thursday. Wants to keep my part time job!

Will be good to here updated from the ones who are in the midst of fts

 

Sharron 

 

 

 

 

Posted 11/12/2013 2:52 AM (GMT 0)

soystud said...
oh hey dubble rr, looks like we were typing at the same time -

i can't say ft helped me, but i definitely know it didn't hurt - and i believe in it 100% - i only stopped because my son's (poopy donor) condition changed - and my wife has ibs type issues - so i just quit -

Soystud, you say that your wife has ibs issues. Does your son have any similar issues or does any of your or your wifes relatives have any similar issues? Just wondering, because some say that UC could be a genetic disease.
Posted 11/12/2013 3:24 AM (GMT 0)
ya chin 4, my wifes family is a gastric mess - all her siblings have issues, nothing major, just your typical ibs smorgasbord -

unfortunately, my son hit the crapfecta ! me, my wife, and his brain-damaged body - he's tube fed and we've struggled for most of his 8 years to find a formula that works - he was doing the best ever when I used his poops to fill my hooter - as luck would have it, the company quit manufacturing the formula he was doing so fantastic on and things have been a mess since -

like most things in life, I don't think it's just one thing, but more of a collection of things that create problems - no question in my mind that genetics are part of the problem -
Posted 11/12/2013 4:00 AM (GMT 0)
Sharron19, I just noticed this thread today.

I've been posting quite a bit on this site about my success with SCD AND FT combined. I was on Uceris remission when I decided to try FT. I quit taking Uceris in the beg. of August '13. I had been on it since March '13.
I did 7-8 FT in August. Positive change was almost immediate. Spouse is donor. He is a super clean eater. 95% organic, vegetarian, almost no sugar or processed foods. We did no testing. Very easy to do at home on our own.
It has been slowly getting better every day since then. Initial BM's after FT were more solid but thin. However, they have slowly gotten thicker over the past several months. Yesterday and today I had a normal-sized BM. It felt great.

Count me as a success story so far. Also you might mention my UC came about as a result of being pregnant. I've had symptoms since March '12.
Posted 11/12/2013 9:20 AM (GMT 0)
Hi Soystud, so sorry to read about  the situation of your son. I hope you find something that will make it easier. Wondering why you don't find a different donor. I don't have relative that can help with that but am working hard on trying to get a friend or a neighbour to donate their stool for 6 weeks.   Hi adventureuc, glad it works for you. Please keep us updated. I'm at work just now but will add you to the success list when I have more time. Meanwhile, could you please let us have some more information about your condition (as mentioned in previous replies).   I've found a good website with lot of information about fts: http://fecalmicrobiotatransplantation.com/FMT/home.html . Now, have the articles ready for the GI.   I've not eaten since Sunday evening and will eat again on Thursday. At the moment, only mucous, nothing else! Hope things will get better at the weekend.   Hope you all get better. Sharron    
Posted 11/12/2013 1:35 PM (GMT 0)
"Hi Soystud, so sorry to read about the situation of your son. I hope you find something that will make it easier. Wondering why you don't find a different donor."


thanks sharron - every family has it's challenges, ours are just a little different -

don't need any more ft's atm - I've been off all meds for close to 18 months - if I had a donor available, I would probably do them on a semi-monthly basis -

hope things continue to improve for you -
Posted 11/12/2013 10:37 PM (GMT 0)
Hi Sharron i hope you can start your FT soon. i am up to number 11 today, supposed to do it every day but just can't handle it so doing it every other day. so far so good, i have no pain, blood, mucus, D i guess i am back to normal except my head. i just have this feeling that UC tricking me, i can't relax every moment waiting for blood to appear. i know positive thinking is the key but how do you tell your head to stop worrying? the only problem i have is little rectal pain during BM, but i am using Vit E suppositories so hopefully it'll help. i am on no meds or suppliments and my diet close to SCD. i have all tests they do for the donor and patient and protocol can scan it and send it to you if you like
Posted 11/12/2013 10:40 PM (GMT 0)
to answer you questions I am 35 yo, dx march 2013, took oral salofalk and suppositories, did the usual list of suppliments, took 1 month of antibiotics before FT and that's about it
Posted 11/13/2013 1:46 AM (GMT 0)
I started having UC symptoms at the very beginning of my 2nd trimester of my 2nd pregnancy. The first pregnancy was 8 years prior and a boy. This time I was pregnant with a girl. I was 35 and athletic before my 2nd pregnancy. I had never had UC symptoms before in my life and thought they would go away after giving birth.
By the time I went to a GI, my daughter was 3 months old. Symptoms were only getting worse. I was going around 15+ times a day with severe urgency. Blood, Mucus, Urgency esp when leaving the house or going shopping seemed to trigger symptoms. My GI scheduled a colonoscopy and determined I had UC. She prescribed Prednisone and Asacol HD. Asacol did nothing. Prednisone caused joint pain and swelling and weight gain with some relief of UC symptoms. Uceris was prescribed and that eliminated all symptoms until after 8 weeks when I went off per GI's instructions. UC symptoms came back within 3 days. I was put back on it and then decided to go SCD after being on it over 4 months.
I really didn't have much choice as we were paying out of pocket for meds. SCD and FT were cheap medicine.
After being on SCD for a month, I added FT and that we did at home several days in a row at first, then spaced out to every 4 days during a period of around 3 weeks. I have continued to live mostly on the SCD diet.
Right now I have almost no symptoms. I am cautiously optimistic. If symptoms do return, I will continue with the FT transplant at home.

I hope this answers your questions.
Posted 11/19/2013 9:20 AM (GMT 0)
Dear ucers,

8 days since I last posted and so much's has happened. I managed the fast again until Thursday at work and had a very rough 2 days. I hardly slept. I can't count bws. On Friday night I went out of toilts for a few minutes at a time for 5 hours. And that's after being very careful with what I ate after the fast. Yesterday I went to see a GI at the hospital where I work. I brought with me results of medical tests and articles about fts. He decided to do all the tests again as he is not sure I have UC. You see the last colonoscopy (March 13) only shows slight evidence since that was after I was on medication and keeping a very strict diet. He said he will have no problems being involved with fts (my donor agreed to donate on the condition of having a real GI supervising the therapy) but first he must learn more about my condition. He even agreed to take the Borody's article. I took a week off work. Tomorrow I will undergo colonoscopy and gastoscopy at the hopspital and already have done some blood tests.

Now, you won't believe it but my condition is getting better since Sunday! What the devil is that? I'm on no medication! No mucous! After these 3/4 weeks of living in the toilet. I am supposed to stop eating this evening to get my gut ready for examination. I know if he doesn't see inflammation I will lose my only chance to get the fts started. What shall I do? From last night I started eating bread, and lots of it. It doesn't help! I intend to get some dairy products and have it before the fast begins. I just can't believe my bad luck. Never happened during the entire life of this mucous bloody disease (13yrs). I was never free of it. Not even for one day I was able to eat gluten or dairy without getting a severe reaction. Up until about a year ago I was able to control it by avoiding certain food (see above) and during the last year it became worse. I took 5-asa for 3 weeks and as a result was hospitalized with a liver infection. Since then (March 13) I took probiotics and kept the diet and was ok until this recent flare. Might sound crazy what I'm now doing but I know my body and this thing is not going away by itself. Moreover, I remember seeing it myself on the screen when it was first diagnoses back then in the UK in 2001. I suppose the GI had a point. Changing doctors and moving to a different country doesn't help in keeping the records and understanding the situation. I will keep updating you with results. For the meantime I think I will go and enjoy some ice-cream!

adventureuc and delta, how is ft going? I hope you are on your way to a complete recovery.

I will keep add you to the list soon.

Thanks for all you support and concern.

Sharron
Posted 11/19/2013 5:27 PM (GMT 0)
Things are going fine. Still trying to stay true to the SCD diet with a few cheats. Black coffee for example is my weakness. I'm back to drinking multiple cups a day. I'm trying to prepare myself for Thanksgiving and plan what I'm going to eat in advance so I'm not drawn into all of the good stuff that will be there to eat.
Posted 11/20/2013 7:51 PM (GMT 0)
I just wanted to report that my son is still in remission, after having 4 FT's in July. He has never known what "true" remission is until now. He has 1 or 2 formed Bm's per day. No blood, pain or mucous. I sometimes worry that another flare could be just around the corner, but I try to live in the moment and let tomorrow take care of itself. FT was definitely a success!!
Posted 11/20/2013 8:03 PM (GMT 0)
hi herbgarden. who was your son's donor?
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