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Fecal Transplant - I took the plunge! PART III

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Posted 1/17/2010 7:45 PM (GMT 0)

Burli said...
s2kredhead:
You think the diet is great but you're not eating what you want to eat. Ethnic food is so great and I eat a lot of it with no troubles. The science behind the SCD diet is junk I found out.

Burli - SCD has worked for me regardless of whether the science is true or "junk." After the baseline meds stopped working, I tried SCD and within a week could see a huge difference in my digestive process. My UC has been dx'd as "mild", so maybe it works better for me than it did for you. For the 2+ years I've been on SCD, I have never had the gas, pain, bloating, cramping, and constipation I suffered for years, even before being diagnosed with UC. Sure, I miss some foods, but let's just say that the one time I intentionally ate an "illegal" Mexican meal (just some tacos and a cheese enchilada, nothing too radical), I got the full case of gas, bloating, and cramping. So, at least for me, I've seen a true cause and effect. So far, it's allowed me to stay away from the big gun meds. The one thing I've learned about UC is that everyone truly is different. I hope you find something that helps your current flare.

Kathy

Posted 1/17/2010 8:23 PM (GMT 0)

Okay, sorry subdued. I forgot the post where you did the probiotic enemas...that answers my question.

You are patient with my constant questions concerning you going into remission from the FT and I appreciate that. You seem to be the only one in here that says this brought their flare into remission. Your said your flare was not severe though and you were at 30 mg for about 3 months. For me (now) that's not a long period of time nor a high dosage of prednisone. I know you said you were not able to go below 30 mg without bleeding and FT in 3 days allowed you to start lowering the steriod until you eventually went into remission.

I am stable and getting better now but in the future I would try this if there were more that were in a severe flare that it helped take them into remission. Your condition, as you described it, was where you were right on the fringe of being able to go into remission anyway. In fact, many say they get to about 25 mg and can't go any further but then just do it anyway and are able to go into remission. There is thought that the steriod actually prevents one from being able to reduce it unless they just suffer through some ill effects and lower it. I will lower my dose even if there is a little blood so long as things don't continue to get worse. I have made mistakes doing it that way in the past, however.

Since your UC is kept in check with 30 mg prednisone it tells me you are at a place where I was about 15 years ago or more. MY UV has progressed to where I need much stronger medication...Imuran. So for me this would be something to try right when a flare is first noticed and used to keep me from going into a flare.

Posted 1/17/2010 8:59 PM (GMT 0)
 

s2kredhead said...
Burli - SCD has worked for me regardless of whether the science is true or "junk." After the baseline meds stopped working, I tried SCD and within a week could see a huge difference in my digestive process. My UC has been dx'd as "mild", so maybe it works better for me than it did for you. For the 2+ years I've been on SCD, I have never had the gas, pain, bloating, cramping, and constipation I suffered for years, even before being diagnosed with UC. Sure, I miss some foods, but let's just say that the one time I intentionally ate an "illegal" Mexican meal (just some tacos and a cheese enchilada, nothing too radical), I got the full case of gas, bloating, and cramping. So, at least for me, I've seen a true cause and effect. So far, it's allowed me to stay away from the big gun meds. The one thing I've learned about UC is that everyone truly is different. I hope you find something that helps your current flare.

Having mild UC has more to do with you being able to stay away from the big gun meds then diet. I agree that diet makes a difference in symptoms and mexican has a lot of fat that would aggrevate most folks. My UC was moderate to severe from day one so I was given steriods to start with. I later tried SCD and it had no effects. Going SCD versus eating mexican is a huge difference. I thought by ethnic you meant somethng healthier like Greek or Indian; although there are healthy Mexican choices and unhealthy Greek and Indian foods. From the Mexican diet you described I would guess it was the fat, and cheese that gave you the problems instead of the anti-SCD corn tortillas. Your description does not indicate SCD "worked" or you could simply stay on SCD and your symptoms would go away but I read you're trying to use FT to speed things along. I still believe you're missing out by cutting grains but I wish you the best anyway. My current flare is getting better, thanks, and I wish you the same good health out f your current flare.

 

Posted 1/18/2010 12:23 AM (GMT 0)
Burli, here is a quote from the Probiotic Therapy Research Centre's website (www.probiotictherapy.com.au)

PTRC website (www.probiotictherapy.com.au/physicians/diseases_4.html) said...
In chronic colitis the implantation of the flora may be less likely on the inflamed tissues. We have noticed that if patients are given standard anti-inflammatory therapy until their bowel wall is completely healed, HPI can achieve long term reversal of colitis in more than 50% of patients in our experience, but the result is still unpredictable in the individual case.


It would be nice to know how many patients they have treated.

I suspect that Dr. Borody would laugh at your comment that the use of saline would be as effective.
Posted 1/18/2010 1:17 AM (GMT 0)

Burli said...

You seem to be the only one in here that says this brought their flare into remission.

I'm just the one who sticks around. See the following post:

https://www.healingwell.com/community/default.aspx?f=38&p=1&m=1362068

Burli said...

Your said your flare was not severe though and you were at 30 mg for about 3 months. For me (now) that's not a long period of time nor a high dosage of prednisone. I know you said you were not able to go below 30 mg without bleeding and FT in 3 days allowed you to start lowering the steriod until you eventually went into remission.

I said my flare was very severe. My GI said my colon felt like dog meat. He could not even do a sigmoidoscopy or colonoscopy when I first came in, because the flare was too severe. He kept telling the nurses when he was finally able to do a partial sigmoidoscopy, which he did purely so that he could make a diagnosis, that I was a new patient. The nurses were aghast out how severe my flare was.

My GI prescribed 40mgs. Every time I reduced my dosage to 25 mgs the bleeding would come back. I was prednisone dependent. The next course would have been to go on something harder. That's why I did the fecal transplantation.
Posted 1/18/2010 1:24 AM (GMT 0)
Hey everyone, new forum member, I've attached a link below for a separate topic I started just talking a bit about my history with UC.

https://www.healingwell.com/community/default.aspx?f=38&m=1694834

as I stated in that post, Does anyone have a step by step, day by day, guide to what they did? I've pieced together many of your posts, but I'm looking for something explaining what prep they did, what antibiotics they took, what dosage amounts, what they explained to their doctor to get said antibiotics, and then the actual process they took for the FT including what they used to strain, get the consistency, where/how/(if) they had their donor screened, and generally anything they tried that they would want to share for fellow sufferers. Hell, I'd even like to know where they purchased the right sized enemas/syringes, and how they passed the time while they let it rest in their bowels.

I know this whole chain is full of information, and maybe I'm just overlooking some of the small things, but I'd love to know:

-How did you get the prescriptions for antibiotics, what did you say to your GI or PCP? What exact doses and names for the prescriptions?


-Who did you use as your donor? Did you have them tested, where? Any diet they should be on?


-How did YOU (I know there are directions, but how personally) make the solution? saline? water? purified? filtered?


-What did you use as the applicator/enema/syringe? Where did you purchase it?


-Shelf life of the solution? can you store this for the entire treatment period? (I'm assuming not, but I'd like to hear your thoughts)


-Any personal thoughts on what helped you or what made the process better/easier?

As soon as I gather enough information I'm going to do this, and post all of my days as you guys are, along with a vlog on youtube or something, who knows (just of me talking about it, don't get excited.) :P


Take care.

Posted 1/18/2010 2:05 AM (GMT 0)
Hi Kaldea,

I didn't have time nor money to research the procedure. I used my intuition.

-Who did you use as your donor?

My six-month age granddaugher.

Did you have them tested, where?

No. I figured that at six months, there wasn't much risk of her having any diseases that could harm me.

Any diet they should be on?

No.

-How did YOU (I know there are directions, but how personally) make the solution? saline? water? purified? filtered?

I used tap water--half water, half poo. She was breast feeding at the time. So her poo was very gooey, easy to dilute in the water.

-What did you use as the applicator/enema/syringe?

A syringe with a long removable tip.

Where did you purchase it?

A local drug store.

-Shelf life of the solution? can you store this for the entire treatment period? (I'm assuming not, but I'd like to hear your thoughts)

ASAP. It took me five minutes tops for her to go, my daughter to take off my granddaughter's diaper, me to scoop out the poo and put it in the water, mix it, and then put it in the syringe and up my butt. I used the time that my daughter was taking off the diaper to get the plastic cup and syringe and add water to the plastic cup.

-Any personal thoughts on what helped you or what made the process better/easier?

I used stool from someone who had never been on antibiotics before.
Posted 1/18/2010 3:51 AM (GMT 0)
  subdued said... I said my flare was very severe. My GI said my colon felt like dog meat. He could not even do a sigmoidoscopy or colonoscopy when I first came in, because the flare was too severe. He kept telling the nurses when he was finally able to do a partial sigmoidoscopy, which he did purely so that he could make a diagnosis, that I was a new patient. The nurses were aghast out how severe my flare was. My GI prescribed 40mgs. Every time I reduced my dosage to 25 mgs the bleeding would come back. I was prednisone dependent. The next course would have been to go on something harder. That's why I did the fecal transplantation. I waited a long time to see a GI due to insurance reasons. When I did finally get to see a GI, I was in really bad condition, extremely dehydrated, anemic, and very inflamed-so inflamed in fact that he was in a panic to get the inflammation down as soon as possible. Colazal and 40 mgs of prednisone reduced the flare substantially. However, every time I reduced my dosage to 25 mgs, the bleeding would come back. You said your flare was substantially reduced using 40 mg prednisone and Colazal. You were not even bleeding at somewhere above 25 mg prednisone. A  “severe” flare puts me in the hospital on IV steroids (which are many times stronger than prednisone). I'm just trying to get a feel of how sick your were compared to how sick I have been and, as you described it, your "very severe" flare was where I was about 15 years ago and my GI back then called it "moderate to severe". Not fun at any no matter what adjectives you use.   My main point was that you were stable when you tried the FT. You said every time you reduced to 25 mg the bleeding would come back. That's not uncommon and some in here (including myself) have lowered their prednisone despite bleeding and have had success at becomming stable again at the lower dosages.   Tap: I bet you're right about Dr. Borody laughing at the coment I made. I was just pointing out that some get relief in just flushing the system out; they have a nice BM after a simple enema. BTW...He advocates using this FT as a means to treat UC caused by infection; not all UC if I understood him correctly.
Posted 1/18/2010 5:24 AM (GMT 0)
Hey guys, let's quit the arguing and picking at what each other said. This isn't helpful to anyone.
Posted 1/18/2010 5:42 AM (GMT 0)
Burli,

My colon was on the point of bursting. My GI thought it was very severe. He told me it was. He was in panic mode when I saw him. In fact, he had a look of shock on his face that I could be in such bad condition.

Perhaps I need to explain more. I was waiting for my insurance to kick in before seeing a doctor. I would not have been able to afford medical care if I was diagnosed before getting health care, because then I would have had a pre-existing condition. The company I worked for at the time had a rule that after one year we would be eligible for health insurance. I was about two months away from the mark. However, I then needed to wait another month for the insurance to become active after applying for it.

I had no idea that there was such a thing as IBD, ulcerative colitis, colitis, chron's, ... because the only one I knew who had ever bled out their butt was my ex. He had hemorrhoids. So stupid me thought I had a very bad case of hemorrhoids and needed hemorrhoid surgery.

I had been bleeding severely for three months. I was peeing blood out my butt with lots blood clots. The blood was non-stop. I was severely dehydrated and anemic. I could barely sit up. I had trouble just getting to the toilet. By the time the insurance kicked in, I had been home for two weeks. My daughter had to call around for doctors, because I was too sick to sit up in bed.

Can I help it that prednisone and Colazol reduced the inflammation enough that I could do fecal transplantation and have it work? No. Does the fact that the inflammation reduced enough that I had to be on only colazal and 25 mgs of prednisone mean that I did not have a serious flare? No.

But, yes, if your colon is severely damaged due to many years of being inflamed, then the likelihood of fecal bacteria taking hold and multiplying is less.
Posted 1/18/2010 5:45 AM (GMT 0)

fruitgirl said...
Hey guys, let's quit the arguing and picking at what each other said. This isn't helpful to anyone.

Hey fruitgirl,

I'm not arguing. I'm clarifying my condition so that people won't assume my flare wasn't serious just because I was able to get down to only colazal and 25 mgs of prednisone.
Posted 1/18/2010 11:45 AM (GMT 0)
subdued: I believe we had a misunderstanding in an earlier post that caused all this. At first, when I said your flare was not serious I was talking about the point at which you did the FT. You said you were steroid dependant but substantially better and that the bleeding stopped at steroid levels above 25 mg.

I'm sorry I questioned you later about the seriousness of your condition when you first went in to the GI. I was wrong for that. You said it was very serious and who am I to say different. If your colon was at the point of bursting, as you described, you can die. If your GI was in panic mode after examining you, as you also stated, then don't you think he should have admitted you to the hospital? If you should get that bad next time (hopefully there won't be a next time for you) think about going into the hospital. I have resisted it (I just did last month) but you get better much faster in there.

That stinks about your insurance problem but I'm glad you have that worked out now.

Anyway, I believe we have this worked out between you and I and I'm sorry I caused you to have to explain your problems like you did. Sorry fruitgirl, I believe I crossed the line...good moderating.
Posted 1/18/2010 6:09 PM (GMT 0)

Kaldea said...
Hey everyone, new forum member,  

Hi Kaldea,

There is an HPI page someone created in Google groups that's not really active, but someone did post a list of files that include the Borody study as well as the instructions for the home protocol.

http://groups.google.com/group/hpit/files

To answer your questions:

-How did you get the prescriptions for antibiotics, what did you say to your GI or PCP? What exact doses and names for the prescriptions?

I did not take any antibiotics or antifungals prior to doing the FT. My doctor is an integrative general practitioner that I found last year when I tried LDN (low-dose naltrexone - another alternative therapy that seems to work well for lots of Crohn's and UC folks). I had researched FT myself but he actually brought it up during our first visit. He didn't seem to think it was necessary to use the antibiotics, but he's never had a patient try it, so I'm a test case for him.

If this attempt at FT doesn't work for me, I will probably redo it with the antibiotic course to see if wiping out all the bacteria first helps. I'm just really afraid to do antibiotics since I believe that's what caused the bleeding I've had for the past 9 months (off and on).


-Who did you use as your donor? Did you have them tested, where? Any diet they should be on?

I used my husband. He went to my doctor and got his blood tested for general health (no specific tests), and got his stool tested for ova and parasites.


-How did YOU (I know there are directions, but how personally) make the solution? saline? water? purified? filtered?

I used plain distilled water from the grocery store. I used just enough to make the stool "pourable". I initially tried just mushing the water and stool inside a ziplock but that didn't get rid of all the particles so I had some clogging issues. I had an old blender that I used for the rest of the time, and then just sucked the mixture into the enema bottle from the blender container.


-What did you use as the applicator/enema/syringe? Where did you purchase it?

I used the bottles from plain saline enemas (aka Fleet enemas) that you can buy at a drugstore. My drugstore, CVS, carries their own brand and you can buy 2-packs and 3-packs. I bought one of each (5 total), emptied and washed out the saline solution that comes in them, and took the insert out from the neck of the applicator. They are inexpensive and I just threw each one away after doing the enema.


-Shelf life of the solution? can you store this for the entire treatment period? (I'm assuming not, but I'd like to hear your thoughts)

Ideally, you want to get the donor's stool inserted as soon as possible so the bacteria are kept alive. It's definitely a scheduling dance. My husband always has his BM earlier in the morning than I do, so he would pass the stool into an old tupperware (I used a Cool Whip bowl) lined with a gallon ziplock, zip up the bag, and I would put it in my oven with just the oven light on (that makes the oven right around 98 to 100 degrees - body temp). Once I had my BM, I would proceed with the procedure. The longest time between his "donation" and my using it was probably an hour. I've now done it five days in a row.


Hope this helps.

Kathy

Posted 1/18/2010 6:13 PM (GMT 0)

Burli said...
 

Mexican has a lot of fat that would aggrevate most folks. From the Mexican diet you described I would guess it was the fat, and cheese that gave you the problems instead of the anti-SCD corn tortillas.

I still believe you're missing out by cutting grains but I wish you the best anyway.

Well, SCD has a ton of fat and cheese, so since my eating that way doesn't cause the gas, bloating, cramping, etc., makes me think that's not to blame. It could have been corn tortillas. It could have been sugar or corn starch in the enchilada sauce. Who knows?

I have eaten brown rice and sourdough bread and neither seem to help or hurt things, so I'm wouldn't be surprised if there are other foods I could eat that wouldn't make things worse. I am just sticking with the baseline and trying other things now so that I don't introduce too many variables. It's a trial-and-error process for sure.

Posted 1/18/2010 7:05 PM (GMT 0)
Who knows what they put in their food at those places...I went to a ton of Mexican places in remission and had not issues but then ate at one while in a flare and the next day was terrible. I couldn't figure out what happened because spicy foods usually don't bother me. Who knows though, it could have been just that I was more stressed that day too.

So sourdough bread is okay for you...that's great stuff!
Posted 1/18/2010 9:06 PM (GMT 0)

Burli said...
subdued: I believe we had a misunderstanding in an earlier post that caused all this. At first, when I said your flare was not serious I was talking about the point at which you did the FT. You said you were steroid dependant but substantially better and that the bleeding stopped at steroid levels above 25 mg.

Yes, this is true, which is why the fecal bacteria had a better chance of taking hold.

Burli said...
If your GI was in panic mode after examining you, as you also stated, then don't you think he should have admitted you to the hospital? If you should get that bad next time (hopefully there won't be a next time for you) think about going into the hospital. I have resisted it (I just did last month) but you get better much faster in there.

It's all about rules, Burli. I think the problem was that I had no diagnosis of IBD. There are certain things doctors can and can not do depending on whether or not a patient has a diagnosis.

I did go to the hospital. I went to the emergency room the day before. The doctor there gave me fluid by IV. He also tested my blood for anemia. My iron level must have been borderline or near borderline, because although I didn't have to have a blood transfusion, the doctor could admit me for one and then assign a GI to me for a colonoscopy once I was admitted if I agreed to the blood transfusion. I did not want the blood transfusion though. I know times have changed, but my mom got hepatitis C from a blood transfusion when she gave birth to me. I just didn't want one if I didn't absolutely have to have one. He told me that it sounded like I had UC and that I should see a GI ASAP. He did not examine me. He did not specialize in colon disorders so there was no reason to. I don't think he realized how serious the inflammation was, or even if he did realize, there was nothing he could do about it if I didn't agree to getting the blood transfusion.

When I got home, I was exhausted. My daughter called, and I told her about my condition. She called around to find a GI for me. She was able to get me an appointment for the next day with a nearby GI.

When I met my GI, I told him about my condition, what I had been though, and why it took me so long to see a doctor. He didn't admit me into the hospital, because I had not been on any medication and he could not do anything until he could give me a diagnosis. Besides I had just been to the hospital. He said I should start getting better with the medication. He probably felt this way, because I had not been on any medication. He gave me tons of samples of colazal and told me to go back to the emergency room at once if my condition did not improve. I don't think he really was supposed to give me colazal without a diagnosis, but he gave it to me anyway. And I am very thankful for his doing so. He said it didn't matter whether or not my colon was inflamed due to an infection or UC, the colazal should help. He had to wait three days for the inflammation to subside enough to do a sigmoidoscopy to be able to diagnose me and even then he said he was just able to go in enough to do a diagnosis. He could not prescribe prednisone until he made a diagnosis. He was very worried about me and talked to me for about a half an hour, longer than I have ever talked with any doctor. I think he was scared of letting me go.

Burli said...
Anyway, I believe we have this worked out between you and I and I'm sorry I caused you to have to explain your problems like you did.

No need to apologize, Burli. I didn't think anyone would question the seriousness of my flare, but then most people would have seen a doctor way earlier so their flare would only get to such a point after having been on a many medications.
Posted 1/18/2010 9:42 PM (GMT 0)
So back on topic subdued:

I now (that I know more about your history) find it very interesting that you tried FT so early in your UC career. If I understand it correctly, you were diagnosed with UC, given prednisone, and within the same year tried FT with your granddaughter’s (?) poop. Was your GI on board with this from the start or is this something you did not share with him…?
Posted 1/19/2010 1:22 AM (GMT 0)

Burli said...
So back on topic subdued:

I now (that I know more about your history) find it very interesting that you tried FT so early in your UC career. If I understand it correctly, you were diagnosed with UC, given prednisone, and within the same year tried FT with your granddaughter’s (?) poop. Was your GI on board with this from the start or is this something you did not share with him…?

Yes. I did try it early. It was my second flare. I had one a year ago. That flare went away with a change in diet. I had stopped eating chocolate and drinking beverages containing HFCS. I started eating more fiber. However, I started to relax my diet, drinking beverages containing HFCS. That's when I got my second flare. I became stricter with my diet, but the symptoms just got worse. In hindsight, my symptoms were probably getting worse, because I was drinking a lot of juice. I didn't know it at the time, but I was fructose intolerant. I was drinking juice instead of beverages containing HFCS.

The side effects of prednisone scared me. Almost a month after being diagnosed, I started attending a massage class. My instructor, who is the director of the program and has a PHD in some form of health care, kept lecturing us about the horrible consequences of steroids. I think he could tell I was on steroids by my moon face, because he would start talking about it after looking at me.

Then the prednisone stopped working. I had read the cut-off period for most of the long-term side effects of prednisone is three months. I was nearing the three-month mark, and I was not about to go onto heavier medication. That's why I tried fecal transplantation.

I'm really thankful for the Internet. I learned so much about my condition, what to try, what not to do, from the Internet.

Fecal transplantation was not something I discussed with my GI until after it worked. He looked surprised and interested; however, he also felt there was no guarantee that the inflammation would not come back. He felt that I was extremely lucky that my colon recovered so quickly. He wanted me to be on maintenance medicine for life. I never did take the maintenance medicine.

I saw him one more time for a checkup. He's okay with my not being on maintenance medicine, seeing how I'm not flaring by not being on them.
Posted 1/20/2010 10:05 PM (GMT 0)
Just a quick update - it's been 2 days since my last FT and, if anything, my condition seems to be slightly worse. I'm still bleeding and today my stools were much less formed and softer. I'm kind of bummed, but I guess I'm not too surprised. Even though this bleeding isn't really bad, it seems SO stubborn. I'm going to give it another week or so and then try the cortisone foam and see if that gets the bleeding under control. I'll update everyone if I see any positive changes.

Kathy
Posted 1/22/2010 2:34 AM (GMT 0)
Hi Kathy, Bummer to hear it hasn't stopped the bleeding. For me the bleeding miraculously stopped the next day. That said, i know some say that it can take a little bit to get better. However, usually symptoms do improve quite rapidly. Maybe you could try another donor if you don't see results in the next little bit? I used the cortifoam prior to FTs, and they had put me on an improving trajectory, but it wasn't until the FTs that the bleeding stopped entirely and abruptly, although it had been getting less with the cortifoam. Besides bleeding, for me other symptoms were somewhat up and down, ie loose and then not loose, and frequency varied, but i appear to be steadily improving, first infusion was mid december and i haven't done any since the sixth which was december 23rd. Best of luck. David
Posted 1/22/2010 4:14 PM (GMT 0)

chocolate_stains said...
....Maybe you could try another donor if you don't see results in the next little bit? I used the cortifoam prior to FTs, and they had put me on an improving trajectory, but it wasn't until the FTs that the bleeding stopped entirely and abruptly, although it had been getting less with the cortifoam. Besides bleeding, for me other symptoms were somewhat up and down, ie loose and then not loose, and frequency varied, but i appear to be steadily improving, first infusion was mid december and i haven't done any since the sixth which was december 23rd. Best of luck. David

Kathy...I agree with David that maybe you should try another donor and see if that makes the difference.
Posted 1/22/2010 6:19 PM (GMT 0)
Yes. When it works, it seems to be very dramatic. For me, the bleeding was a little less the first day, and a lot less the second day, and completely gone on the third day.
Posted 1/22/2010 10:13 PM (GMT 0)
Thanks for the feedback. Finding another donor could be pretty tough! I don't have any other family close by and can't really see asking a friend or neighbor to donate ("I'd be happy to buy a couple magazine subscriptions for your kid's fundraiser, but only if you'd be willing to drop off a little poo each morning for a few days" ... ROFL!!)

I think I'll try the cortifoam and see if I can get the bleeding under control first, and then maybe try it again - maybe with some antibiotics first ... I'm going to talk to my doctor and come up with a plan.
Posted 1/23/2010 2:32 AM (GMT 0)

I wonder if it would be better to have your donor eat a certain diet to make the process easier to perform, say something which required less use of a blender. If you had the donor eat baby food the day before you might have something coming out that was smoother and easier to mix and administer. You probably would not want the donor eating hot peppers. Ouch!

Posted 1/28/2010 10:48 PM (GMT 0)
I attended a focus group last night at the University of Chicago for parents of UC kids. They are interested in hearing about FT, as they are considering a grant request to the NIH to test this in the spring. I pointed them to this web site, as they were unaware of existing efforts to participate in this very experiment!
The parents attending were hesitant, and had no data to base their opinion of the treatment on. It sounded a bit frightening, as you know. They asked rather than answered questions.
Parents generally seemed open to the concept, as long as the fear factor of donor unknowns were considered( re: unintended bacteria with lethal consequences). They are sure it would be distilled, and tested stools for reimplantation. Discussed what to call it, multiple delivery methods(oral, implanted during colonoscopy, rectal, etc)--we all voted for a pill! They even asked our donor preferences, and if we had interest in meeting them vs having a "bank".
Glad to see this get a legit. trial-they are not yet sure if it will be on adults or pediatric sufferers, or if it can be in conjunction with existing meds for the trials.. They also need to clear the grant hurdle for money-no small feat these days.
Just an fyi--will keep you posted if there is interest on this fascinating topic.
K
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