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My Fecal Transplant Log - female w male donor

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Ulcerative Colitis
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Posted 8/2/2012 4:04 AM (GMT 0)
Any advice from the experienced? DH had BM once today and it was in the morning at work. He thought he could go again tonight but hasn't been able to. He tried lots of things. He says he has eaten lots of fiber rich foods today. Guess this means no treatment today. We were trying for 10 consecutive days. Is this a major deal? If he goes twice tomorrow, is there any benefit to 2 transplants in one day?
Posted 8/2/2012 4:46 AM (GMT 0)
Loli,My DH could not go everyday, but he did do most days so it worked. He eats a lot of veggies but if he is having trouble performing:), he will take magnesium, prunes and drink lots of water..which helps a lot! I think I am going to start all over again using abx and prep next month..sigh..

 

Posted 8/2/2012 6:58 AM (GMT 0)
Has anyone heard from Trojen, I thought that was his name, and hw his son is doing?
Posted 8/2/2012 1:27 PM (GMT 0)
Lolil, I would say if you miss a day it is not a big deal. I would only do a second transplants a day if you have a BM just before the second. It’s always best to do the enemas when your bowel is as empty as possible. To do a second transplant when the first transplant is still inside doesn’t really make sense.
Posted 8/2/2012 7:37 PM (GMT 0)
250mL taken today as #5. A bit bummed that I think I lost it all 2.5 hours later. I was feeling really great, but hungry and I think eating played a part. As well as my daughter crawling all over my stomach 2 hours after... Just so hard to lay around so long in the middle of the day. If I could receive later in the evening, it would help. Oh well. Take what I can get.
Posted 8/3/2012 8:29 PM (GMT 0)
Hi! Great to see another FTer on the forum! 10 days sounds a bit too little to me. Most anti biotic treatments are around 12-14 days and i think FT needs to be done a longer period than this to have a chance to kill off bad bacteria.

I still believe in this method as a means of restoring gut balance, I don't however think it guarantees that you will never have a flare again. I am personally convinced after reading all research that FT is about the interaction between bacteria and your immune system and that in some cases bacteria does get into the wall of our colon where it shouldn't be. Our immune system is in those cases unable to get rid of the bacteria, which is why we have long periods of bleeding and inflammation.

Did it help me to get into remission ? No idea. Will I do it again if/when I get a flare again ? Yes. See my signature for how I did mine
Posted 8/4/2012 4:32 AM (GMT 0)
This is my first time posting on this board. I am gearing up to do a fecal transplant and all the information here has been extraordinarily helpful and it is making me feel really optimistic about the potential benefits of this procedure. I can't wait to try it and I so hope it helps me!

LoLil I am really enjoying reading your progress reports and I am keeping my fingers crossed for you!

___________________________________________________________
Sita
41 year old female
dealing with chronic illness since 1998 - non specific chronic fatigue/chronic pain/lyme
one year ago took six weeks of doxycycline for multiple tick bites and developed chronic diarrhea and bleeding with pain
treatments right now: Tibetan herbal medicine, very limited diet, preparing for FT

Post Edited (upanashad) : 8/4/2012 11:21:47 AM (GMT-6)

Posted 8/4/2012 7:34 PM (GMT 0)
Thanks Curl3d for checking in. Your postings were so valuable. We planned to do 10 days of infusions as the protocol instructions I received say to repeat 5-10 days. We thought 10 days was doing the upper required limit. I will check with my GI clinic next week and get their take on how many more past ten we should do. Maybe we could go to once a week or weekends only or something. DH has a bit of difficulty timing things perfectly on a daily basis and we need to be mindful of his work schedule. For only 10 days, he has just taken off early when necessary.

Upanashad - best wishes to you!

For the people who have completed FMT -- how long do you lay around? Sounds like only an hour for some of you with the 10 minute rotations. I retained yesterday's treatment for 15 hours. I stayed lying down for 3 hours and then ate a very light dinner. It also helped because the treatment was at 6:30 so after lying down 3 hours it was almost bedtime.

Just completed #7 with probably 250 mL.

How do I know if it's actually helping? Is it too early to know? Would the consistency of my own poop be different as it works? Since I am on Imuran, I have had less urgency and 1-3 BMs daily (sometimes with some form) BEFORE starting the transplants. I havent had blood in a couple of months. Just trying to figure out what kind of success I can expect.
Posted 8/4/2012 8:33 PM (GMT 0)
I tried, but gave up. I was using my 8 year old daughter and she was a trooper but I think the stress of performing threw her off. I a
So couldn't hold them in. I am thinking surgery now. My brother who is 10 years younger may have IBD too now which makes me wonder if the bacteria theory applies to me.
Posted 8/5/2012 7:37 AM (GMT 0)
I am not a huge believer in tapering FTs or doing 1 p/week. The way I see this treatment is about the same I look at antibiotic treatments but in a more a natural way. In antibiotic treatments they bomb the stomach in a intense but relatively short period in hope to kill the offending bacteria.

Antibiotic treatments are responsible for breeding us these super bugs. The strongest individuals in the offending bacteria will be the last to die and a lot of treatments are done too short leaving these bacteria alive in the colon after the treatment has been stopped. These individuals who were more resistant to antibiotics the reproduce and this is why many bacteria illnesses are becoming resistant to antibiotics.

Bottom line is that I believe in a shock-and-awe (borrowed from Bush :-)) approach to FT. Do it for a extended period and do it every day religiously during this period in hope to kill the possible offending bacteria.

Anyway, these are just my 2 cents. I didnt want it to become a lecture in stuff you guys probably already know I just wanted to illustrate my thinking.
Posted 8/5/2012 7:57 PM (GMT 0)
Thanks curl for the info.

Today's dilemma-- for the second time we are having problems getting the goods to flow. We are using an enema bag, not bottle as some of you have done. As I understood the protocol instructions, that is what I purchased. http://www.amazon.com/Disposable-Enema-Bag-Set-Economy/dp/B000VSV460/ref=sr_1_3?ie=UTF8&qid=1344194523&sr=8-3&keywords=Enema+bag+kit+disposable

Husband blends it with a cheap blender and uses about 100ml of saline. We use a strainer now, after our first flow problem. The protocol did not reference this as a supply but it sure seems as a necessity. So today, even after straining and seeming like a good mixture, it wouldn't flow. Husband was squeezing on the bag quite hard and it just wouldn't flow. So, he had to empty the contents back into blender and add more saline and try in a new enema bag.

It seems like its more of a pressure problem with the tube. We just don't understand physics well enough. Or does it have something to do with my body being too tense to receive? Does this mean a bottle would be better? The bag is easier when it works because we just throw it away and it's only one container to hold all the goods.

I kept #7 all day and overnight. The key seems to be taking it easy for 3 hours at least and only light meals during that time if necessary.
Posted 8/6/2012 1:37 AM (GMT 0)
The thing with the enema bag is you rely on gravity which won't be a problem if the liquid is very thin. Once you start using blended up poop it could plug up easily. I assume it's plugging in the tube. Can you get a larger tube?

Congrats for holding #7 for so long.

Posted 8/7/2012 2:34 PM (GMT 0)
I held #8 and #9 overnight again! I ended up only taking about 150mL of the 300 mL prepared on #9. It was burning, and we had the flow problem again. I'm still perplexed why we are having a flow problem. The mixture seems very watery -- the only thing may be some particles clogging the tube?? But we strain it, so I just don't know. Husband has to squeeze the bag, which makes the mixture shoot in faster and it was burning for some reason last night. It felt so much colder than mixtures before. So, we decided to stop after half the mixture and use the Quality over Quantity mentality.

I have looked online for different disposable enema bags, and it's almost impossible to find the tube diameter. I checked my local drugstore and I don't see any enema kits for sale! I guess I will have to stick with this one, or go to the enema bottle if it continues to be a problem.

On a side note on the saline solution, Walgreen's has the saline (Wound Wash) on sale, their store brand. It's the cheapest I have seen anywhere. $7 per can and buy one get one half off. I bought all they had. Not sure they appreciated that!

I heard back from my care provider and they suggest stopping the procedure after 10 successful treatments if I am having decreased abd pain, stool frequency, rectal bleeding, etc. They will check me for inflammatory markers via blood and stool test at the next appt. What I don't understand, is that since I have been on Aza/Imuran, I have had decreased in all these symptoms anyway!

Can anyone tell me about our stool consistency with UC, even in remission? Mine has still not returned to pre-UC days. Will it ever? Is that even possible? I don't see much discussed on this board about the actual size of the stool. I'm having 1-2 BMs per day, they are solid, but only about finger width in diameter (my small finger size ~ 3/4").

Tonight will be the tenth treatment!! I'm torn between continuing the treatments as you all have suggested and stopping at #10 for awhile. This board is so valuable, but I also think I'm finally going to a doctor that is committed to this disease. They only see patients with IBD. I used the antibiotics beforehand, so I'm wondering if my progress could be different than others here because of that.

Thanks, and best wishes to everyone!!
Posted 8/7/2012 7:17 PM (GMT 0)
@LoLil my stools are as normal as they come. I don't know if they are as thick as they used to be, possibly not but I am also not eating the same stuff as I used to so that may have to do with it
Posted 8/7/2012 9:56 PM (GMT 0)
Hi Loli, My stools are pretty much normal. I think I did about 30 days..I still have to do 1 every 10 days or so because symptoms return. However, I am going to it again  at the end of Sept with abx.

Donna 

Posted 8/8/2012 6:46 AM (GMT 0)
@LoLil I actually used the enema bottles from emptied out pentasa's. I had to cut them a bit but it's not hard just be sure you don't create any sharp edges when cutting it.
Posted 8/8/2012 6:48 AM (GMT 0)
To clarify; I used these: bit.ly/MNxee8

Post Edited (curl3d) : 8/8/2012 12:52:45 AM (GMT-6)

Posted 10/24/2012 4:19 AM (GMT 0)
Just a little update. That I have been off my Aza (Imuran) for one month. My calprotectin levels were really low a month after the FMTs! Mine were 16, and I believe anything under 150 was good. I was very happy to see it so below the threshold! I have been doing really well. I am getting more adventuresome in my eating. I have eaten salads, fruits and a mostly normal, healthy diet. I have eaten a bit of slow-cooked beef, but no steaks. I'm completely fine with that! I have 1-3 BMs per day, usually one or two though. They are small in diameter and frequently loose, but not complete D like once before.

I'm still really glad that I tried the FMT!
Posted 10/24/2012 1:03 PM (GMT 0)
@LoLil, thanks for your update, that's awesome! It sounds like things went really well for you. Please continue updating us, I love reading about how the FT works for other people.

I also think it's awesome that you have a local doc who is so supportive of the process, that's really cool.

My dh is willing to be a donor for me, but he hasn't yet been screened. My 8 yr old son is also willing to donate his poo (actually right when I started writing this, he came to tell me he has to go poop but would prefer to poop into a container some other time because he thinks this one will be "a bit too much..." he's very sweet.)
Posted 10/24/2012 8:42 PM (GMT 0)
Such good news Lolil, congrats. Thank you so much for your postings - and to Edbar - you have given me hope. My 10 year old son has UC and has been in a flare for a year. He was intolerant to azathioprine and is now having weekly methotrexate jabs which seem to be having little effect. He has been on pred for almost a year. Doc has mentioned surgery. Thinking about Fts but not sure about who to use as donor as husband and I not suitable. We have two other kids age 6 and 4 but sounds as tho over 18s better. Would love to get in touch with Edbar but no email listed on his profile...
Posted 10/24/2012 8:42 PM (GMT 0)
Such good news Lolil, congrats. Thank you so much for your postings - and to Edbar - you have given me hope. My 10 year old son has UC and has been in a flare for a year. He was intolerant to azathioprine and is now having weekly methotrexate jabs which seem to be having little effect. He has been on pred for almost a year. Doc has mentioned surgery. Thinking about Fts but not sure about who to use as donor as husband and I not suitable. We have two other kids age 6 and 4 but sounds as tho over 18s better. Would love to get in touch with Edbar but no email listed on his profile...
Posted 10/24/2012 8:42 PM (GMT 0)
Such good news Lolil, congrats. Thank you so much for your postings - and to Edbar - you have given me hope. My 10 year old son has UC and has been in a flare for a year. He was intolerant to azathioprine and is now having weekly methotrexate jabs which seem to be having little effect. He has been on pred for almost a year. Doc has mentioned surgery. Thinking about Fts but not sure about who to use as donor as husband and I not suitable. We have two other kids age 6 and 4 but sounds as tho over 18s better. Would love to get in touch with Edbar but no email listed on his profile...
Posted 10/24/2012 8:43 PM (GMT 0)
Sorry didnt think submit button was working so pressed 3 times!
Posted 3/18/2013 12:29 AM (GMT 0)
@LoLil - any chance you could send me those instructions? The links aren't good anymore and I'm trying to get my hands on them to perform the FT myself at home. Have read Dr.Brigg's thread and the version he posted of his own instructions, and would like to read other formal versions if possible.
Thanks so much! (ps - my email address is listed in my profile)
Posted 3/18/2013 1:35 AM (GMT 0)
I can't seem to locate my printed copy at the moment, and I don't find it stored on my computer either. I did a quick search, and found this link -- seems like this is the one I had. Save it quick, if the link works, before they take it down. I saved this one, so let me know if it doesn't work.
https://docs.google.com/document/d/182trbGk5UoLMapCoeIw8pjFmv00tIgjfySoP-gOGrrs/edit?hl=en_US&pli=1
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