Meet Michael:
I am a 34 year old man originally from Florida who has lived in the Washington, DC area since college. I was a Political Science major at American University and have been an elected official. Hobbies include swimming, weight lifting, running and trivia. I’m also an IT consultant, author, speaker and life coach. I was diagnosed with Ulcerative Colitis just before my 21st birthday. I tried a variety of different drugs ranging from Prednisone, 6mp, Asacol, Remicade, anti-biotics including Cipro, pro-biotics, diets and finally Fecal Transplant. I am happy to write that I now consider myself cured after 18 months with normal bowel movement and no UC drugs.
Some more about me:
I’m pretty much shameless. Otherwise I think I’m pretty normal, I like to figure things out intellectually. I also like swimming, weight lifting, running, going out, hanging out and recreational sports like kickball.
Colitis Symptoms:
I have been symptom-free for just over 18 months now and consider myself cured. Almost two years ago now, I came 3 days away from scheduled surgery, a full Colostomy with temporary diverting Ileostomy and Ileoanal reservoir when I discovered one more treatment option to try. I cancelled surgery, much to the chagrin of my colorectal surgeon and others because I really thought this could work.
While I had previously heard about Fecal Transplant – also known as Fecal Bacteriotherapy, Fecal Microbiota Transplantation and many other terms – for Colitis caused by Clostridium Difficile, I had not heard of it being successfully used for Ulcerative Colitis. Not until I found a study by Dr. Thomas Barody that had been published in the Journal of Gastroenterology where he documented its successful use in 6 patients. I then set out to do it myself and this lead to what has proven to be a lasting cure.
Fecal Transplants Cured My Case of Ulcerative Colitis and Saved Me from Surgery
When I was almost 21 years old I was traveling with my family in South Africa when I developed Ulcerative Colitis. It started with unexplained inflammation in my eyes and then turned to watery stool with bright red blood in it. When I got back to the U.S. Ulcerative Colitis was confirmed by 2 different doctors and stool tests did not reveal any known parasites. I still transferred into American University in Washington, DC and tried to carry on as best as I could even though 60 mg of Prednisone and 12 x 400 mg of Asacol was not effective in stopping the flare.
Finally the addition of Cipro ended up stopping the flare and I was able to taper off Prednisone and maintain remission for a while after that. However flares continued intermittently, during those times I would go back on Prednisone until the flare died down so that I wasn’t losing blood and tapered off of it. A year later I started on Accutane for acne, which I had had for years, but had been made worse by Prednisone.
In retrospect I think some other factors also contributed to the onset of Colitis, including more frequent diarrhea. In retrospect these symptoms could have been described as Irritable Bowel Syndrome (IBS). The factors included moving to a more northern climate for college (from Florida to Wisconsin and then to Washington, DC.) I think Seasonal Affective Disorder (SAD) played a part as well as St. Johns Wort which I used to self-treat the condition. I also think switching to a high fiber diet in high school, The Zone Diet, which included lots of raw vegetables, nuts and dairy also contributed. I also wonder if anti-biotic use and frequent abdominal pains when I was an infant also contributed.
Fast forward back to college and after college. I tried my best to maintain remission over the following years, which included going on Prednisone to control flares and I even tried Cipro once or twice again too with some success. I branched out and continued trying more approaches. This ended up including a low residue diet which I read about in the book Eating for IBS, this did help a little for slowing down diarrhea but was not a complete solution. I tried the Specific Carbohyrate Diet (SCD), and then later a gluten-free and dairy-free diet. However high amount of nuts and raw fruits and vegetables seemed to cause worse diarrhea and urgency so I moved away from that. I also tried pro-biotics such as VSL #3
I then tried Remicade, however I ended up getting two infections that required hospital treatment including a boil in my groin region and a skin infection on my leg that required a 4 day inpatient stay. While being treated with anti-biotics in the hospital with Vancomycin I had an almost spontaneous remission of Colitis, however recovery was slow until I started taking massive amounts of iron too. I sought out another Gastroenterologist specifically to try anti-biotics again. I wanted to use anti-biotics and then pile on pro-biotics as a one-two punch. However the health insurance I had at the time was not very good and would not cover VSL #3. My appeal was denied even though I pointed out that it was much cheaper than Remicade which not only cost $10,000 a dose billed to insurance, but had also contributed to a 4 day hospital stay.
Finally as I was losing weight and feeling discouraged I decided to follow my doctor’s advice for surgery. It didn’t seem unreasonable given my situation – that nothing except Prednisone could sustain any remission, and even that was starting to not work as well as it did before. I planned to have surgery at Mayo Clinic near Jacksonville, Florida since it was only about an hour drive away from my parents. I was told I would not be able to take care of myself for a significant period of time afterward. However I also spoke with some people about my age who had surgery and were doing fine.
Between the doctors and the patients I was feeling more encouraged, however I still had nagging doubts. I disagreed with the premise that this illness could not be cured and would only get worse instead of better. I also wondered why if this illness responded to anti-biotics and pro-biotics, how it could not be an infection. Then I saw an article about Fecal Transplant being used for Colitis caused by Clostridium Difficile bacteria. This was encouraging, however there was no mention of it being used to treat Ulcerative Colitis. At the same time, the colorectal surgeon told me my blood albumin levels were low and that I should take meal replacement shakes such as Ensure. No doctor had ever told me that my blood protein levels were low before. I started taking Muscle Milk shakes every day and weaned off Prednisone a month before the surgery date. Once again I doubted the surgery. Why should I make myself sick by having surgery, when I am currently not losing blood and my ene rgy has come back again?
Then 3 days before the surgery date, my Mom handed me a print out of the Wikipedia article on Ulcerative Colitis and there was a link to an article by Dr. Barody about successfully using Fecal Transplant for Ulcerative Colitis. This floored me, Wikipedia hadn’t been created when I was diagnosed and I thought my doctors and I knew it all. I had stopped looking for alternatives and bought into the whole notion of the disease not being curable. I stayed up all night reading and researching as much as I could. This seemed to me like much more than hope.
I told the colorectal surgeon and he tried to scare me “it will only get worse,” “prednisone will cause your bones to crumble and possibly diabetes,” “you could get colon cancer, “the tissue in my rectum was ‘burned out’ so that it can’t possibly recover” and more. But he couldn’t refute the facts of the study. I said why not, bacteria can cause stomach ulcers, traveler’s diarrhea, even c. diff Colitis, and my case has responded to anti-biotics and pro-biotics on numerous occasions.
So I walked away from that doctors appointment and immediately started looking for doctors that would be willing to do this procedure. I was able to make appointments with leading doctors in the U.S. including Lawrence Brandt and Colleen Kelly. These doctors were willing to give it a shot for my case of Ulcerative Colitis, however I would have to wait since they were booked for months. Finally I decided to do it myself after reading a study by Dr. Michael Silverman that low volume fecal enemas that were administered at home were just as effective as ones done in a hospital. I also talked to someone who successfully used Fecal enemas / transplants to “cure” her son. Once again this was a huge mind shift for me, “cured, really?!” After so many years of struggle that I was told was futile, such that I tried to avoid facing reality, there was something I could do.
So I decided to do it myself. I recruited a friend of mine and asked him to be my roommate. Tests for blood work and stool would have cost me over $1000 and I learned a lab would not accept a test unless prescribed by a doctor. However I was not going to let anything stop me now. I saw this as an epic battle an all-out if not almost reckless charge where nothing was going to stand in my way. I got a new job, new apartment and I started the fecal transplants at home. I then continued every day for 5 weeks, determined to keep going until all symptoms were gone. However along the way I had a couple realizations and found some ways to tweak the process. If I had it to do over again, I think it would have been much easier if I had done some things, especially more things to get an active flare under control and keep inflammation down and limit bowel movements. After 5 weeks, flares had come back and I had to go back to my regular GI doctor for more Prednisone, he was very upset with my renegade self-treatment and insisted I stop them. Although he was a little less upset after talking to Dr. Kelly.
However about 7 weeks after I had started the transplants on a daily basis. I starting taking Bupropion for depression and Silenor to help sleep maintenance. However I also told the doctor, a psychiatrist, that I found that a study had been conducted about Bupropion for Crohn’s Disease however no results had been published. The doctor also said that while Silenor would help for sleep it would also might help my gut. I got home and researched, sure enough Silenor would help. I also learned that it was the same active ingredient that had been in the off-patent anti-depressant drug Doxepin. Apparently a drug company re-patented the drug for sleep maintenance using a slightly lower dosage 3 or 6 mg than the lowest amount used to treat depression (10 mg capsules, with much larger doses often used.) I also went back on Apriso even though it wasn’t covered by my prescription drug plan. For some reason Apriso did seem to help much more than Asacol. I think this might have been because it used 24 hour time release beads instead of 8 hour time release hard tablets that pass through the digestive track.
By the end of the next night, I went from blood and watery stool to a normal bowel movement! Unbelievable! I was so excited that I even took a picture of it in the toilet. In an almost anti-climactic moment I remember saying to myself matter of factly, “it’s gone.”
Six weeks later I had a colonoscopy. It turns out that where I had previously had pan Colitis – inflammation throughout the entire digestive track – I now had patches of health tissue. My GI doc was concerned this might mean the illness had changed course and was now some form of Crohn’s Disease. This didn’t seem possible though, I had already had a capsule endoscopy test (where you swallow the pill with the camera) to determine that the illness was confined to the colon and that I would be a good candidate for surgery. When I looked at the images myself I came to a different conclusion – the illness was resolving itself. By the start of December I stopped taking Apriso with only a mild return of occasional diarrhea for a week or two, but no blood, then I stopped Doxepin / Silenor. Then I switched Bupropion immediate release to extended release then off it, then on again as winter approached this year.
I also found that taking Valerian root extract has helped me have much more firm stool as well as being helpful for me to get to sleep. I think the calming effect of the herbal supplement is what is helping me in this case. So now over 18 months since my last Fecal Transplant I am healthy with better bowel habits than I had before I ever became sick with Colitis. I am so grateful that I found out about this, and I am so happy that I was willing to take responsibility and make the best decisions for myself rather than trying to make others happy. It is my firm belief that many people with Ulcerative Colitis and possibly Crohn’s Disease are un-necessarily having life-altering surgery and dealing with potentially life-threatening drug side effects when a cheap, effective and safe cure is available.
Since that time I have made it my mission to tell as many people as possible.
Colitis Medications:
Fecal transplant combined with Prednisone, Apriso and the anti-depressants Bupropion and a very low dose of Doxepin (Silenor) helped bring about a lasting cure, a sustained remission without the use of drugs when the only other treatment option doctors gave me was surgery.
Otherwise throughout the course of my case of Ulcerative Colitis I responded to anti-biotics including Cipro and Vancomycin. This was in spite of the fact that stool tests did not reveal the presence of Clostridium Difficile bacteria or any other known pathogens. However these drugs did not offer a permanent cure and Cipro was not as effective the second time I tried it, I never tried Vancomycin a second time.
Otherwise Prednisone was effective for dealing with flares. Taking pre-digested protein shakes (I used Muscle Milk) helped restore the effectiveness of Prednisone after it had previously lost effectiveness.
Apriso (24 hour time-release beads) was the most effective form of mesalamine for me along with suppositories and enemas.
Remicade at the highest dosage level was sometimes effective for a few days to a week, however wore off long before the next scheduled dose 4 weeks later. In 8 months of treatment it also was a contributing factor to 2 different secondary infections that resulted in hospitalization.
written by Michael Hurst
( Michael’s blog: http://fecaltransplant.org/ )
submitted in the colitis venting area
February 25, 2013 at 2:44 pm
Accutane! Sorry, first of all…Hi Michael…
I, too, took the dreaded accutane four different times during the early and mid 90′s. Back then, there was no info on how accutane use could cause UC!
That, along with alot of antibiotic use as a very young child, due to tonsilitis, is what has cause me to get UC, I am positive!
I am so glad that you were skeptical about what the doctors were telling you early on…me too! I do not buy that UC can’t be cured, or managed, and I do not buy that it causes cancer, and I do not buy that the only way out is colon removal! RIDICULOUS!! Good on you, Michael…and you are wise beyond your years, at only half my age.
So little seems to be known about the cause of and any cure for UC, that it is almost impossible to trust or believe anything the doctors tell us. For instance…I was on asacol for 14 years straight because I ‘HAD’ to be on some maintenance drug…and it made me even sicker than I already was…sheesh. According to my doctor, it was the UC that was making me feel so ill, not the drug…fast forward to now, been off all meds for almost a whole year now, just on a good probiotic and L-glutamine with NO UC symtoms at all any more…hmmm.
I too wanted to try the fecal transplant, and was waiting for a phone call from a doctor who does them, but he never did call me. That was over a year ago. I’m not sure why the call bever came, but I am in remission thanks to taking control of my own health and ditching the doctors.
I so believe in fecal transplans. I have heard recently that there has been a chemical fecal transplant developed…no smell or anything, that they are testing like crazy…and it is working!! Change is coming…
Anyway, Michael…yours is one of the best posts I’ve read on this site! There IS hope for UCers…in a natural form, instead of all of the harsh merry-go-round of drugs…it’s just around the corner. In the meantime, we all have to DEMAND better treatment, more natural treatments…tell our doctors, NO, I do not want to hurt my body any further with any of those possibly harmful UC medications!!
Bev
February 26, 2013 at 5:04 am
Nice one Bevvy!
February 26, 2013 at 8:58 am
Cheers
February 26, 2013 at 8:20 am
I just had to comment on your icon. Love George and Pattie!
February 26, 2013 at 8:56 am
I know Holly…right?
I’m a huge George Harrison fan…Beatles too of course… George and Patti…they were such a couple! The good old days…lol
February 25, 2013 at 6:24 pm
Michael,
I’m so glad you’re better. I believe your story gives us all something to think about. The initial thought of fecal transplant is, well … unpleasant. But, I understand the concept and it does make sense. It is wonderful to consider that something exists which may actually cure UC. Thank you for giving us your encouraging story.
lynne
February 25, 2013 at 8:56 pm
hey michael. just wanted to say hi and so glad you are still in remission!!
i was just in the hospital with c diff and know if it comes back again, i have to try fecal transplant again. i think it would knock it out better than the antibiotics.
your advice a while ago really helped me the first time around with the FTs even though they didn’t work. i’m sure i’d use a different donor if i had to do it again. i’m definitely over the grossness factor though even if others say it’s nasty.
February 26, 2013 at 4:01 am
This is really exciting stuff. I am a medical student, and have spent alot of time reading about the microbiota and its role in UC patogenesis. I firmly believe that probiotics or fecal transplants is the way to go!
February 26, 2013 at 5:01 am
Good for you Tiger!
I’m a little confused, however, as you seemed to be taking loads of stuff at the same time and then saying it was the poop. The way I read your tale is that the poop did nothing (in fact you had flares while “taking” it) for 7 weeks UNTIL you started taking Prednisone, Bupropion, Silenor, and Apriso and THEN the symptoms went away? A few questions if you wouldn’t mind?
Would you consider that perhaps the other stuff had something to do with it?
How much Pred did you start with at 7 weeks?
Did you wean off the Pred slowly?
Did you do anything / introduce anything else around this time too?
What is “Kickball”?
They have me gobbling up Methotrexate now to control my UC but I reckon gobbling sleeping pills, anti-depressants, and gin and tonics would be more fun and beneficial to my inner artist….
Thanks and good luck,
Peter
February 26, 2013 at 10:00 am
hey peter. i remember when i spoke to michael last he said the bupropion and muscle milk made the biggest difference although he does think repopulating his gut was a good idea. i have thought about trying bupropion since my meds haven’t helped at all.
March 4, 2013 at 2:50 pm
Hi Peter,
Thanks for the kudos, allow me to clarify. From what I have read Borody’s patients took Prednisone for up to 6 weeks after doing the fecal transplants. In my case I had been off Prednisone for several months before starting the FTs. I also didn’t have access to anti-biotics and ran out of Apriso because I could not afford anymore. While most previous cases I had heard involved both pre-treating with a course of anti-biotics and taking Prednisone at the same time I did not.
I am convinced the poop definitely played the primary role because I am now not taking any of the drugs and my good health with lack of symptoms continues. I don’t know of any cases where someone just took some drugs and then it went away into a sustained remission without continuing to take drugs or continue a restrictive diet. On that note, foods that appeared to trigger diarrhea and urgent muscle spasms, yet now do not cause those problems. I believe this may be because the bacteria in the gut or the healed intestinal lining is now able to handle these foods.
Yes, I do believe the drugs and the protein supplements were very important to the extent that they worked to reduce inflammation, calm the gut and help heal the intestinal lining. I think that the underlying infection / bacterial imbalance and the symptoms of diarrhea, and urgent cramps create an interdependent cycle of inflammation.
At 7 weeks I started tapering from 30 mg to 0 in about 10 days, a much more rapid taper than my standard 5 mg per week regiment, however this time I had only been on for a little less than two weeks. Part of the reason for the more rapid taper was my doctor refused to prescribe anymore Prednisone to me and I wanted to have some taper instead of drop cold-turkey. I also had been on less than a month this time around and as I understand this is not enough time for the adrenal glands to have shut down productions of adrenaline, therefore a taper is not necessary to gradually restart adrenaline production.
The same day I started by tapering from 30 down to 20 mg I started Bupropion 100 mg tablets 3 times a day and Silenor at night and re-started Apriso capsules once a day. I intermittently did some Canasa suppositories as well, but not every night.
In answer to other questions. Kickball is a sport. In Washington, DC there are several recreational social sports leagues for adults, especially singles in their 20s and into their 30s. Since their are a lot of people constantly moving in and out of this area these have become very popular here.
Interesting you should mention gin and tonics, I like them
. However they didn’t always like me while I was ill. While I did not always exercise such restraint I found limiting carbonated beverages including soft drinks and beer to be helpful which seemed to cause bloating and trigger some urgency. Limited amounts of hard liquor and wine didn’t seem to be as bad, however I think they could have been an irritant so I would recommend limiting them.
As for an inner artist, the drugs I was prescribed Bupropion and Silenor (a low dose of the tri-cyclic anti-depressant drug Doxepin) are considered to be non-addictive drugs. I think depression and / or anxiety can both be causes of the symptoms related to this illness and even triggers such that diarrhea contributes to the disruption of gut flora which triggers an overgrowth of the “bad” bacteria.
March 13, 2013 at 2:10 am
Cheers mate
February 26, 2013 at 6:21 am
I’ve had Cdiff 4 times. The next time I get it, my GI has (finally) agreed to do a FMT, thank God. So glad to hear of your success. Thanks for sharing your story!
February 26, 2013 at 9:58 am
hey lisa. what have you been taking to get rid of they c diff? i just finished my round of vancomycin and am getting stool tests in a few days to see if it’s gone. i also started probiotics so i hope it helps.
February 26, 2013 at 11:38 am
Hi Joanna. I finished a month-long course of a stronger dosage of Vaco than I’ve had before (250 4x a day, maybe?). I also take Lactobacillus and Florastor (probiotic that has saccharomyces in it) 3x/day. What is interesting is that I had stopped taking my probiotics (a number of reasons – in the hospital for surgery & didn’t have access, then I just plain forgot to take it) a couple of weeks before the most recent Cdiff recurrence….I am NOT optimistic that this last course of Vaco will keep the Cdiff away. I am optimisic that the Fecal transplant will work the next time it comes around…
February 26, 2013 at 2:02 pm
i hope it stays away for you. i’ve heard it can be really relentless. i talked to a few doctors at the hospital about FT and they said only as a last resort if i fail antibiotics multiple times. i don’t get why it can’t be a first resort type of thing. i mean, yeah it’s gross, but it’ll probably work better than the antibiotics in the long run.
i’ve done so many FTs at home already so if my c diff comes back, i’ll just do it at home again. it’s no use fighting with doctors all the time on it, begging them to help me. they just don’t budge when they think they’re right or if they can give you pills- prescriptions are way easier to hand out than helping a patient.
March 4, 2013 at 2:07 pm
Hi Joanna,
I do believe it was primarily the fecal transplant which made this work, however I believe that Bupropion helped as an anti-inflammatory. The results from trying that were immediate just like those I saw in another discussion thread and in an article published by doctors in Journal of Gastroenterology. Other drugs like Silenor (Doxepin) may have helped by calming the gut muscles spasms, giving the intestinal lining a chance to heal without being re-aggravated, it might also have helped the new bacteria to finish the colonization process faster. Muscle Milke was helpful because your body needs protein to heal damaged tissue. The colo-rectal surgeon told me that my blood albumin levels were low so I needed lots of protein, Muscle Milk and other body builders protein shakes has much higher levels of protein than something like Ensure.
Fecal Transplant should be the first-line treatment for c. diff because anti-biotics inevitably fail to prevent re-occurrences a significant amount of the time in this illness. This is probably because c. diff is found in small quantities in healthy stool in many people, however in these people there are other bacteria that keep it in check. So killing all of it off is not the solution, finding a way to contain and balance c. diff may be the best way.
C. diff is not to be taken lightly, a good friend of mine’s father died of complications related to c. diff Colitis two weeks ago. This was after several rounds of anti-biotics had failed to prevent a re-occurrence. I told her about the fecal transplants back when I was first doing them, in fact she had even been over at my house a few times while I was lying around retaining the enemas. Even though she repeatedly told the doctors and her father about this they never went through with it. It’s too bad this had to happen since he could have done something else that would have worked.
I also hope others realize that waiting to see if anti-biotics will somehow work to permanently cure c. diff, especially cases where it has re-occurred after anti-biotics have failed before, is not just foolish, wishful thinking, it is taking an un-necessary gamble with your life.
February 28, 2013 at 11:18 pm
Hi Lisa,
You had your colon removed so why are you getting C diff. It is very rare for C Diff to attack the small intestine which is what your J Pouch is made of. You may be treating something entirely different than C diff which is why it keeps coming back. I was reading that there are other infections that can cause a positive C diff test and according to the Mayo Clinic there is a new starin that is resistent to antibiotics. I am now 8 weeks post colon removal and feeling pretty darn good wish I would have taken it out sooner. Is your J Pouch working well other than your frequent infections?
Mike
February 26, 2013 at 6:54 am
Great story. UC is about bacteria. Why wont the doctors accept this.
February 26, 2013 at 7:18 am
Great story Michael. I definitely would try fecal transplants before considering surgery.Thank you for your post.
February 26, 2013 at 10:01 am
I think it is great what you have accomplished. I have been researching FMT for several weeks now. Apparently, FMT works for 90 plus percent of the patients who do FMT and are diagnosed with C-Diff. You were tested for C-Diff and it was negative. Has anyone read what percent of patients with UC or CD who test negative for C-Diff have successful remission of their condition? On Adam’s site he interviews two doctors who do FMT for non C-Diff UC. Their percents of success are much lower for then the C-Diff percents. I am a big believer for FMT but currently there is something missing in my expectation of success. Anyone have any more information on the subject?
February 26, 2013 at 12:40 pm
Hi RJW,
I browsed around and the reason you haven’t seen any hard data on success rates for FMT in IBD patients is because the clinical trials are still currently being conducted. Here’s an article though that talks about some preliminary results you might find helpful.
http://www.medscape.com/viewarticle/770009
Also, it looks like the University of Chicago is currently working on a study.
http://girf.org/UserFiles/A_New_Hope.pdf
The percentage of non-C.Diff TMF patients being lower than C.Diff patients is most likely because not everyone’s UC is caused by the same issue.
Glad to hear you’re doing well Michael! You’re on the forefront of medical science!
Angela
March 4, 2013 at 1:47 pm
Thank you Angela. I do believe that Colitis and/ or Crohn’s Disease and IBS may be caused by different bacteria. I also think that it might be caused by a form of bacteria that reproduces from spores. The key with this kind of bacteria is to have a strong enough level of transplanted bacteria available for subsequent flares or bacterial bloom cycles to kill them off before they can produce more spores for the next round. I like to think of this as bacterial whack-a-mole. If you whack enough of the bacteria away before they can produce more spores for next time, then within a few cycles they will be all gone or within a range that can be controlled by the existing bacterial colony.
May 12, 2013 at 7:11 pm
I have UC and recently underwent an FMT to treat it. i had high hopes and expected to come out feeling like a new man. but that turned out not to be the case.
i went all out and had 4 procedures done in 5 days. 1 through colonoscope then a day off followed by 3 sigmoid infusions.
But it did not work for me. i was in a mild-moderate flare going half way up my left side from before which the dr said made it a bit difficult for the infusion to stick in that area but above that was fine and it held well. at the end of the week he said to give the new healthy bacteria time colonize the inflamed area and all should be fine.
i ended up with one of the worst flares in years. i was able to tell it was limited to the lower part of my colon but it was much more intense than anything ive had. it is now 2 and half weeks after the FMT and i am still battling this flare. not even 40mg of prednisone + uceris + azasan is keeping it at bay (though its not as bad now as it was a week ago, i’m still far from good).
but all this got me thinking that my case might not be a flora issue, but an immune issue. i dont know if there is a way to test your Treg cells, but i feel i’m severly lacking them.
February 26, 2013 at 10:21 am
Michael,
If I am remembering correctly you used your roommates fecal stool when you did it at home? If true did you have blood type tested against your blood type or did you just wing it. Apparently one doctor made mention that he believes fecal matter takes hold in people with acceptable blood types? Thanks
March 4, 2013 at 1:19 pm
@rjw I did not do anything to match with blood type. Nor have I read anything suggesting that this was necessary and I am not aware of any living blood cells being present in healthy stool. One of the conditions for a healthy donor is that they do not have blood in their stool nor blood-born pathogens, nor active bacterial infections in their digestive track.
February 27, 2013 at 2:33 pm
Congrats on your remission! I would think the anti depressants had a major role to play in your remission – they have been studied and are known to have a positive effect in IBD?
FT is promising and for some it’s a cure – for others a part of the puzzle.
February 28, 2013 at 11:39 pm
Remember you are in remission not cured. That new bacteria you have from your fecal transplant can be destroyed by UC when it decides to flare up again in the future. I too thought I had mine cured. I went for 5 years with normal bowel movements and no issues at all, then I hit a short period of stress in my life and my disease came back instantly over night resulting to a path that damn near killed me. I am not trying to be a negative Nancy just trying to make sure that people who find remission do not take it for granted. I am 8 weeks post colon removal and feel great. Life without a colon is not as bad or scary as most people think. It is something I wish I would have done years ago.
March 4, 2013 at 1:41 pm
I am glad that things are working out for you now and sorry that your illness came back and ended in surgery. Did you do Fecal Transplants for Ulcerative Colitis as well and then this came back?
Maybe you weren’t cured but I am, but no I will not take this for granted. A new bacterial colony has been established and the old bacteria is either completely gone or kept balanced at levels that do not cause harm. I hit it with Fecal Transplants for over 5 weeks and if something like this ever were to come back I would hit it again, even harder. What I won’t ever do again it and give up. I also know that I have to manage the impact of my state of mind on my body and also nutrition levels.
Recall some people in Borody’s article about 6 Ulcerative Colitis patients that he treated with Fecal Transplant had been symptoms free for 13 years or longer with no maintenance therapies and no remaining signs of illlness. To paraphrase his words absent any signs that the illness is there and absent any renewed illness matching the previous conditions, the patient can be said to be cured.
Part of what will make you healthy is the mindset that you bring to this. Are you going to suffer as a victim but try to survive or are you going to go on the offensive and beat it. Being told the illness was incurable and can not be resolved within any time frame was enough to make me want give up and I was going to have surgery. Fortunately I was willing to disregard what the doctors told me was supposed to be true and prove them wrong. Remember this has been beaten by some, the key is to get the bacterial infection completely subdued, this might take fighting though multiple rounds depending on the kind of bacteria involved. The best advice I received was to keep going and I was prepared to go indefinitely.
March 4, 2013 at 4:27 pm
Well said Michael K!!
I, too, refuse to believe that colon removal is imminent and the only cure for UC. No way. Ridiculous. I am so skeptical about what doctors tell me about this so called ‘disease’, it’s not even funny.
I was told I’d need meds FOREVER. Well, with a good probiotic and L-glutamine, I went off of the meds I had been on for 14 straight years, and I’ve never felt better. The meds were killing me. Making me feel worse and who only knows what the long term effects will be. Damn the doctors anyway. Now, I would like to have the fecal transplant to hopefully eradicate any signs of UC. I am a firm believer in that therapy and believe that it is INDEED the cure.
I fear that we have all been lied to about UC for a long long time…maybe it’s a monetary thing…I hate to think that to be true, but what do we know? Actually, perhaps more than we think we do…more than the doctors do…really makes you wonder. It actually pains me deeply to think of all of the people with UC who’ve had their colons removed…so drastic and final…
Good on you! I want this therapy and I am going to work and strive to get what I want.
Cheers, and again, thank you for this fabulous post!!
Bev
March 4, 2013 at 9:33 pm
Bev,
I am sorry to hear that you have such bad doctors. Not all doctors are that way. I do credit my GI and surgeon for saving my life as the UC had total control and had put me on my death bed in a matter of a few short months after being in remission for years. Doctors will not suggest the fecal transplants yet because there has not been a large enough clinical study performed yet thusinsurance will not cover them in health institutions. I hope it does turn out to be the next big thing for UCers but I will be an advocate of colon removal for sufferers that have tried almost everything and are losing the battle because I know how well it has worked me thus far. I have not felt this good in years and hopefully it stays this way.
Mike
March 5, 2013 at 9:30 am
Yes, Mike…good point. I know there are some good docs out there…..just not mine!
I tend to go overboard on this subject… I have to remember that I gotta pull my horns in a bit sometimes…lol
March 4, 2013 at 4:28 pm
Oh…and the mind set and victim thing…yep…it’s within all of us to help ourselves get better!!
Nobody is going to do it for us.
I sound like a preacher…so sorry…I just get so fired up about all of this:)
March 4, 2013 at 4:53 pm
Well said Bev! Yes, it is hard for me not to turn into a preacher on this, but a huge realization I had was part of what was holding me back was that I had an inner conflict about getting better. On the one hand this seemed hard to believe, how could I possibly not want to get better with every part of my being? Then I realized, in some respects I was using it as an excuse and a way to shirk taking full responsibility for my life. That was also part of what was contributing to having depression as well, a feeling that I couldn’t have any control over the outcome. Then I realized that I could have some impact and it was kind of scary. It was also painful to realize that the very same doctors I had come to accept as more of an authority over my body than me, were ignorant of the fecal transplant procedure even though it had appeared in the Journal of Gastroenterology. Then when I brought it up they still weren’t willing to give it a shot or made excuses that were not even based on actual facts. I’m found this resistance to be true for many people I have talked to who wanted to try this as well.
I also hate it to be true that at least some doctors are not pursuing this as much as they could because it does not stand to be a benefit to them monetarily. However it is true that people don’t need doctors to effectively do the fecal transplants / mix and administer the enemas to beat this illness. And if people who were previously considered to be chronically ill get better to where they don’t need on-going medical care the business model for gastroenterologists and makers of pharmaceutical drugs in this area will take a big hit.
March 4, 2013 at 5:11 pm
Wow. You know, it is all about taking control of ourselves, and yes, we do sometimes shirk that. Well, we’ve finally fixed that, haven’t we?!
I am considered an obstinate ‘problem’ sort of patient, I’m sure, at my doctor’s office. I don’t really buy anything he tells me after all I’ve been through with him. He basically did not believe that I could possibly be in remission just on probiotics, and not on any more meds. He was quite perturbed when I told him that I had decided that there would be no more meds for this girl. He continues to urge me to take some sort of UC medication…it’s unbelievable, really. I wish we could trade places and he could see how really irrational and inane he is being! When I brought up fecal transplants to both he and my specialist, they both said they wouldd have no part of that…that it was UNETHICAL!! I secretly can’t wait for the day (and it’s coming soon) when this is the WAY that UC, c-diff, and many other things will be cured. There is even a ‘chemically’ made fecal transplant now (which is no doubt full of probiotics), with no smell or donor needed! They have been being tested on c-diff and UC patients with great success. I saw it on the national news a couple of weeks ago! I delight in my doctors eating their words…look what I’ve become…so mean…lol…
Like you said…sometimes the transplants need to be done again and again, until all is well and cured. Why can’t anyone get that? Just because it does not work one time, does not mean taht it will not work eventually.
I will stop now!
March 4, 2013 at 5:27 pm
I don’t believe that’s the reason doctors don’t pursue alternate therapies (drug companies more likely) but not doctors. Honestly malpractice insurance is the real reason behind it. In today’s world everyone wants to sue about everything. And given there hasn’t been “enough” clinical evidence yet for fecal transplants and UC they’re sometimes running high risks recommending it. They can lose their medical licenses from a lawsuit. And unfortunately, there isn’t a lot of money funding IBD research (it’s all going to the “key players” like cancer and heart disease).
When they run a clinical study, its extremely controlled, it has to be repeatable and has to be tried against a control group. Cases like yours where you were also on bupropion and prednisone at the same time wouldn’t count for a reliable clinical study to the FDA as its really hard scientifically to tell what actually put you into remission.
March 4, 2013 at 9:21 pm
Michael
I don’t have a choice but to be as positive as I can be about this. I have a wonderful family of five that I have to support for sometime yet and that alone keeps me going everyday. That and the fact that I am a spiritual person that believes that the Lord will not put anything on our shoulders that we cannot handle and it is also true that Jesus carry’s the load of our yoke in order to lessen our burden as long as we believe and follow his word. I do hope you stay healthy and prosper. I did try everything except for the fecal transplant. Never really heard of it until recently. Not sure I would have tried it.
Mike
March 5, 2013 at 5:13 pm
Mike H,
I totally agree with you about being positive and it sounds like you have done a great job handling this and I hope it continues to work well for you. Certainly if I had not heard of this at the last minute before my surgery date and then chose to go against what my doctors wanted I would have done the same.
Part of what really got me was that this was not even presented to me as a choice when the only other option given to me by the doctors was surgery. My GI doctor was apparently not even aware of FTs even though the article had been published in the Journal of Gastroenterology 8 years before. After reading as many available studies as I could I realized that there was essentially no risk of irreversible or life-threatening impacts if done with a healthy donor. However some of the prescribed treatments had already had severe side-effects for me including anti-biotic resistant infections that were potentially life-threatening. and lead to being hospitalized for 4 days.
Ironically the colo-rectal surgeon ended up playing a key role in helping me get better without surgery by telling me that I did not have adequate protein in my blood to recover from the trauma of surgery, so I should take meal replacement shakes to boost that level prior to attempting surgery. It turns out I also didn’t have enough protein to repair damage from ulceration, but as I boosted the protein levels I recovered from the flare and successfully tapered off Prednisone a month before the surgery date. I wondered could it really be true that my colon was irreversibly damaged if I could successfully taper off Prednisone? If body tissue can recover from surgery why can’t it recover from the effects of chronic ulceration if continued ulceration is stopped for a sustained period of time?
Once I realized that the worst thing that could happen was that the treatment didn’t work and I was back to attempting surgery, I really had nothing to lose. It did take some time to fully recover, but I did and like you I am deeply grateful for good health even if by different means.
March 1, 2013 at 7:29 pm
For people who do not believe in this being a cure look at this http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.8343767/.
March 4, 2013 at 4:13 pm
Wow, wow, wow!!!
Great link, Mark! What a freaking excellent article on fecal transplants. When is the medical community going to embrace this?????
I’m walking on air just reading this…
March 7, 2013 at 4:01 pm
I don’t know Bev hopefully soon!
March 1, 2013 at 7:32 pm
Or the people with Dr barody who remained diease free at a 13 year follow up!
March 7, 2013 at 4:29 pm
yep!
March 15, 2013 at 11:24 pm
hey MICHAEL
i was curious as to what you thought about its possible applications for people with celiacs disease. I have heard some promising things about fecal transplants for people with autoimmune diseases as well as Parkinson’s.
thanks for your reply
March 18, 2013 at 12:31 pm
Hi Zack,
It seems very possible that intestinal flora could play a role with Celiac Disease and a fecal transplant could potentially be helpful since 70% of your immune system is in your intestines. I know that since I finished doing the fecal transplants over time I seem to be able to eat foods that I once thought were problem foods.
As for Parkinson’s Disease, once again it could be possible. I haven’t read any research about this, but given the severe impacts of the disease and the lack of permanent, severe side-effects when it is done properly, I think for some motivated people it might be worth giving fecal transplant a shot.