Ulcerative Colitis - This will be of interest to you!

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MAD
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 1/23/2009 3:26 PM (GMT -6)   
This is my first post here and i cannot begin to tell you how frustrated i get when reading alot of people’s testimonials. I'll tell you why later.

I was diagnosed with UC over 2 1/2 years ago. It was actually indeterminate colitis because these professional people we call doctors could not diagnose me with Ulcerative Colitis of Crohn's Disease. They told me i was in the 5% group of people with this problem where they could not tell which disease i had. I had traits of both having 45cm of my colon affected with inflammation and patchy patterns throughout. At one time my entire colon showed inflammation and they called it pancolitis. It eventually limited itself to the left side of the colon with about 45cm affected and then had right side inflammation near the appendix but not the ileum.

Anyways after going to three of the top doctors in Toronto each one had a different opinion to what i had. Two felt it was Crohn's which i never agreed with and the third was almost convinced that i had Ulcerative Colitis. My symptoms ranged from mild to severe as so did my colonoscopy reports, i have obtained all my reports. For over 2 ½ years i experienced a sever flare up every 2 months to the day. I could predict a flare up and plan ahead because i new it was coming, it was like clock work. My flares would last 1 month and gradually get to 10 - 12 bowel movements a day with nothing but blood. It was very painful and difficult to deal with. My life was over in my eyes. I was on ASA's which is Salofalk or the equivalent to Asacol plus prednisone, antibiotics and many, many medicated ememas. I was also told by doctors to accept the fact that i would be on medication for the rest of my life and they recommended i start taking immune suppressant drugs like 6mp which i refused. It all did nothing for me as far as i'm concerned i still went in and out of flare up's every 2 months.

I tried everything under the sun. I then turned to other treatments after learning more about the disease which included, elimination Diets, Specific Carbohydrate Diet, natural paths, nutritionists, acupuncture, chiropractics, Vitamin E Enema procedure, Fish Oil, commercial probiotics, organic foods, aloe drinks and every thing you can think of that people talk about for this disease i tried, believe me i did. I'm forgetting some things but my point is that not one of them worked or made any significant difference. This was all while i was on 12 medicated pills a day.

I have come to realize that the whole world and especially doctors in North America are wrong about this disease. It is not an auto immune problem although the immune system is definitely involved. The root of the problem is a bacteria imbalance in the digestive track. Some already know this and fail to educate us on it because it's a billion dollar business for pharmaceutical companies, doctors and the government. I am so sick of hearing people having to go through this terrible agony and debilitating disease. Doesn't anyone get it? Doctors don't give a flying **** about you. They need you sick! Another patient cured is another customer lost.

People are talking and hearing now about this Human Probiotic Infusion (HPI) or also known as a Fecal Transplant. I studied this procedure for 2 years and finally learned enough about it with the help of Australia's Centre for Digestive Diseases to consider trying the outrageous procedure. If you only knew and grew enough balls to do it you would understand that this so called "incurable disease" is not so incurable after all.

I followed a home protocol that Australia has in order to perform the procedure at home. Well after months and months of preparation i finally was ready for the procedure and followed through with it. Many things went through my mind and there were many days after the procedure where i was very worried i may have made a mistake. I was warned about some rough periods i may experience after the procedure because i was introducing so many different types of bacteria and there was truly a war going on inside of me. Well those up's and downs i went through were nothing compared to my normal flare ups i experienced.

All i have to say is it has now been over 6 months since i did the transplant and have had tremendous and unbelievable improvement. I never thought i could ever get back to the state i am at now. It is almost a miracle in the making. I no longer take any medication at all and continue to eat, drink heavy amounts of alcohol and introduce new things to my body that i haven't done in over 2 ½ years. I have one bowel movement per day or two but that's quite rare. It's well formed with no traces of blood and no feeling of pain after. I don't know what to think at times other then this disease really can be cured. There is definitely something to this bacteria theory and i don't know what the hell we are doing over here in North America banning this treatment and having people suffer in agony with a life long prescription of harmful drugs then ultimately surgery.

I can go on and on about this and have been through so much i can write a book. I will continue to try to encourage this to anyone who is willing and i will definitely voice my opinion to doctors here and the medical community. I am truly beginning to believe it's a money making business here rather then trying to help people live a better life style.

I was in all your shoes at one time and believe me all these different things people are trying here are not going to help you in the long run. For all you know they don't even help with anything and you have to suffer so much, lose out on life's great pleasures all while wasting your time and money to try and eat like a bird. I spent so much time and money on these Diets that i had to dedicate my life to preparing foods that the SCD diet called for. The Specific Carbohydrate Diet is old school and although it may help people it's not necessary to live by. I don't care what anyone says. It follows the same principals where by starving out the bad bacteria can reduce symptoms but you never get to the root of the problem. A fecal transplant will restore the good bacteria, wipe out any bad bacteria and implant themselves in your intestines for ever to shut down the inflammation response in the body by producing certain chemicals in your body. It is true and it is the root cause of this problem. Ulcerative colitis and Crohn's disease are only names given to these conditions that are simply a disruption in the bacteria levels or a harmful pathogen that cannot be identified.

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 1/23/2009 4:02 PM (GMT -6)   
MAD -

This procedure you mentioned has been noted several times on the board. Fecal transplant from a healthy donor will certainly do quite a bit to give you a functioning mix of flora in your system.  I don't think that it has been banned in North America, but I do know it isn't a common treatment.  People who have under gone the procedure have mentioned varying degrees of success. The key is that you must maintain the good bacteria once you've gotten it in.

There has been a debate on the board about the underlying cause of UC, with many opinions about pathogenic bacteria, antibiotic use, poor diet, genetics, even the water we drink. The fact is that no one knows exactly what causes UC or Crohn's. I'm happy that you have found something that helped you, but it is misleading to tell people that by doing this procedure they too will have success and be cured. If you look through the board, you will several different "cures" or things that people claim will help everyone, but in truth, there isn't any one thing proven to help everyone (with the exception of surgery).

I am sorry that you had such bad experiences with the medical establishment that you think that they only care about making money off us. I agree that the pharmaceutical companies are trying to sell their products, but those same companies are also doing research to find things that will help us. I guess I prefer to think that they are there to help, instead of thinking that they are only concerned with making me dependent on their product so they can milk my money for the rest of my life.


 
36 y.o. male
Diagnosed w/ UC in May '06, had symptoms since '99
Meds & supplements: VSL#3, Lialda, Allegra, multi-vitamin, Wellbutrin XL, fluoxetine, and vit B-12.
Spinach/sunflower seed diet for over two months with positive results!

Post Edited (beartooth) : 1/23/2009 3:06:06 PM (GMT-7)


Chester_Lampwick
Regular Member


Date Joined Dec 2008
Total Posts : 53
   Posted 1/23/2009 5:15 PM (GMT -6)   
MAD said...

Anyways after going to three of the top doctors in Toronto ...


I'm interested in how you determined this. I live in Hamilton, and I can't chose what doctors I'm going to see, nor can I determine their ranking. Could you inform me how I'd do this? AFAIK I really can't walk into a GI's practice, I need to be referred by my family doctor.

I do believe there is a bacterial infection cause for some cases of UC. I'm confident that's what happened to me. My UC came about overnight. There were legionela and c diff outbreaks around the time. Problem is, as I see it GI's won't just jump on a bandwagon when it comes to people's health. They will stick with an established protocol, even if it is less promising then the experimental as the risks of malpractice are very high. After a few years of clinical trials, if poo exchange deems itself as useful it will become a mainstream option. I'm thinking my problem is actually Small Intestine Bacterial Overgrowth, and that UC is actually an effect rather than the cause of my problems. There are antibiotics that specifically target the digestive tract that are not absorbed by the body for this sort of thing, like traveler's diarrhea.

My experience BTW is quite different than yours. I've only passed visible amounts of blood on half a dozen occasions in the last 2.5 years.
Male, Age 36
UC since July 2006 - entire large intestine
_____________________________________________________________
Current Meds:
2x500mg Salofalk three times daily
 
 

 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/23/2009 5:26 PM (GMT -6)   
Hi Mad,

It is important to find out what the cause(s) are in order to treat the disease. Fecal transplantation can help those who have Colitis due to an an imbalance of fecal bacteria.

Like you, I've done fecal transplantation. And like you, it worked for me. I was in my second flare, having trouble tapering off Prednisone. I was disparate; so I tried fecal transplantation. It put me immediately in remission after the third day/try. My poo was fantastic. My GI said my recovery was remarkable.

However, fecal transplantation is not the only thing that works. Nor does it work for everyone. It is primarily used to treat Pseudomembranous Colitis, which is a type of colitis that results usually from having been on antibiotics. So far, the success rate has been high for those cases.

The reason it worked for me is that my fecal bacteria was imbalanced due to having taken antibiotics daily for many years. I have Colitis for two reasons:

1) an imbalance of fecal bacteria due to taking antibiotics daily for many years. The antibiotics destroyed the good bacteria in my colon.

2) my colon having been weakened from years of eating nothing but chocolate and drinking nothing but beverages containing HFCS. The chocolate weakened my colon, because I wasn't getting enough fiber in my diet. The HFCS taxed my liver. I am now fructose intolerant.

The imbalance of fecal bacteria alone did not give me Colitis. My colon was fine for years after I had been on antibiotics. It was not until I weakened my colon from my poor diet habits that I got my first flareup.

My poor diet alone did not give me Colitis. There are other problems that usually show up first from not getting enough fiber in the diet and from consuming too much HFCS.

What happened since doing the fecal transplantation:

I had to be on antibiotics again for a urinary tract infection. I also started drinking beverages with HFCS again. I got another flare up.

When I got this latest flare, I saw that Probiotics were being sold in stores. So instead of doing fecal transplantation, I took Probiotics (both orally and anally). I also followed a strict diet in which I ate anti-inflammatory foods and avoided pro-inflammatory foods and any foods containing HFCS or that are high in fructose. I gradually went into remission.

Breakdown of results:

Treatments

Flare 1: Changing to a high fiber diet, avoiding beverages containing HFCS, avoiding chocolate.

Flare 2: Prednisone, fecal transplantation, again eating more high fiber, avoiding beverages containing HFCS, avoiding chocolate.

Flare 3: Probiotics, diet (no high fructose, no HFCS, no pro-inflammatory foods, anti-inflammatory foods)

It is important to find out what the cause(s) are in order to treat the disease. I also read some of the posts, and feel oh if they only tried this or that. However, we are all different. Not all of us respond to the same things. There is even one case I just read of someone going into remission after taking Rocephin, an antibiotic used to treat bacterial infections.

Hopefully, I will never have to take drugs like Prednisone skull again.

Hopefully, we will all be able to find something that works for us.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners

Post Edited (subdued) : 1/23/2009 4:35:50 PM (GMT-7)


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16289
   Posted 1/23/2009 5:31 PM (GMT -6)   
I think mine has to do with a bacterial imbalance but I don't think it is always the cause of UC. I would be interested in trying anything to rid myself of this inflammation and live life without medication. I honestly can't afford to be sick.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/23/2009 5:41 PM (GMT -6)   
Chester_Lampwick said...

I live in Hamilton, and I can't chose what doctors I'm going to see... ...AFAIK I really can't walk into a GI's practice, I need to be referred by my family doctor.


The GI my doctor first referred me to was terrible.

I had my older daughter (I was too sick at the time) go to my insurance company's Web site and find a GI for me. I then had my doctor fax a referral to this GI. Best decision I ever made. Sometimes we need to take our health into our own hands.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


Chester_Lampwick
Regular Member


Date Joined Dec 2008
Total Posts : 53
   Posted 1/23/2009 6:01 PM (GMT -6)   
subdued said...
I had my older daughter (I was too sick at the time) go to my insurance company's Web site and find a GI for me. I then had my doctor fax a referral to this GI. Best decision I ever made. Sometimes we need to take our health into our own hands.


I take it you're not Canadian. You wouldn't go to your insurance company's Web site. This is covered by our universal health care. I still know of a ratings system for specialists. There's an agency that records complaints filed against doctors, but I'm sure that isn't freely available.
Male, Age 36
UC since July 2006 - entire large intestine
_____________________________________________________________
Current Meds:
2x500mg Salofalk three times daily
 
 

 


barbl
Regular Member


Date Joined Jul 2006
Total Posts : 320
   Posted 1/23/2009 6:44 PM (GMT -6)   

I would skip the nasty poop enema and take Probiotics smilewinkgrin

I'm certain mine was from a bacterial imbalance. Thats why the SCD diet works so well, you can't eat any carbs, which breakdown into sugar and feed the bad bacteria.


Dx'D in 1990. Remission 1991 - 1/2005
Both flares were in extremely stressful times in my life
Colonoscopy 10/2008 mild UC
*****Digestive Advantage IBS formula 6-8 a day, 1 Forvia, 2 Metamucil.         REMISSION!!!


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 1/23/2009 7:03 PM (GMT -6)   

i have a feeling mine might be from bacteria imbalance as well. I just find it a coincidence that my roomate at the time was on intravenous antibiotics for a blood infection he had, and he developed severe diarhhea. Within about 2 weeks, I had diarhhea. His colonoscopy showed nothing and he was eventually told he had IBS.

I was tested for bacteria and all that jazz, but my colonoscopy showed colitis. I just think it's a weird coincidence that's all. Anyways, I do take probiotics and keep an eye on the research about fecal transplant as it may be something I'd consider in the future, depending on what troubles lie ahead.

MAD - you said you got your info on how to do this at home from the Australia Centre for Digestive Diseases. Can this be found on a website? I also assume you had to find a donor...family member?
I think that would be the most awkward question I could ever ask someone..."Hey Mom, Can I borrow a bag of your poo when you're done with it??" tongue   .... I guess if it would cure me...
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg 45mg 40mg 35mg 30mg day - Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


MAD
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 1/23/2009 7:29 PM (GMT -6)   

Everyone who has this problem knows how difficult it is to live with, some more then others unfortunately.  I can only voice my opinion here in hopes to further the research and development of new treatments for Ulcerative Colitis and related diseases.  If you are happy with they way your current situation is then by all means please move on but for all the others that are suffering on a regular basis and having their lives impacted greatly then why not open your mind to an alternative solution rather the standard practice that has been used for decades without any success. 

I understand that this may not work for you and i also understand the complex origin of this disease, however there are studies to back this up.  There is proof from a study at the University of Harvard where a specific known bacterium from a healthy Human gut shuts down the inflammatory response in the digestive track.  Not to mention several cases were followed up to even 13 years after the procedure without any signs of the disease and no adverse side effects.  The numbers are increasing.  Ulcerative colitis is for some reason the only bowel condition where Human Probiotic Infusion does not have as great of success rate as other bowel conditions.  Most other bowel conditions have a proven cure rate of over 90% with this method of treatment.  The reason they believe it may not work for everyone is because of the level of inflammation that is active in Ulcerative Colitis when you are doing the transplant.  With the type and degree of inflammation in Ulcerative Colitis the bacteria are not able to implant themselves and as a result the procedure does not work.  You must be in a completely normal state or have the disease under control.

This procedure is banned here in Canada from what i have been told unless you have a diagnosis of C. Difficile and even that has to be a life or death case in order for them to perform the procedure on you.  Im not even sure if they would do it under those circumstances.  It's definitely no where close to main stream nor is it commonly discussed here with doctors.  I have no issues with the way things are handled with western medicine and God knows there are many drugs and doctors out there that save many lives.  I just think it's time to reevaluate the treatments for this specific disease.  Doctors are trained to save your life and treat you with the tools and drugs they have been provided with and that’s it.  They don't care if you live a quality life as long as your living.  Doctors do their jobs and they do what they are suppose to do.  No one is going to look out for you as much as you will yourself.  So that's what i did.  I also think medicine is being pushed way too much on people for no reason.  If you need it then you need it but we all know that’s not always the case.  The reasons some of these disease are present is totally because of legitimate pharmaceutical drugs we take among other environmental factors as well as foods.

I can go on and on but i felt the need to tell people of my experience and also felt a responsibility to at least provide people with the information and have them make up their own mind instead of having others do it for them.

 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/23/2009 7:52 PM (GMT -6)   
As much as you understand that this particular procedure which has worked for you may not work for all, then why is it hard for you to understand that diets or other methods that you've tried that failed you have worked for others?

I've been suffering for 18 yrs straight with no full remission the entire time with crohn's colitis (which is likely what you actually have) and I can tell you I've been failed by the medical communtity but I can also tell you that the oral RX they've tried me on were of no use to me because I was either allergic or non-responsive to them, that however is not necessarily the medical communties fault but in all honesty I've found some relief with the natural approach along with diet, still not full remission but with complications I've had it's better than going the 30+ times a day that I was going before.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


MAD
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 1/23/2009 8:33 PM (GMT -6)   
pb4 said...
As much as you understand that this particular procedure which has worked for you may not work for all, then why is it hard for you to understand that diets or other methods that you've tried that failed you have worked for others?

I've been suffering for 18 yrs straight with no full remission the entire time with crohn's colitis (which is likely what you actually have) and I can tell you I've been failed by the medical communtity but I can also tell you that the oral RX they've tried me on were of no use to me because I was either allergic or non-responsive to them, that however is not necessarily the medical communties fault but in all honesty I've found some relief with the natural approach along with diet, still not full remission but with complications I've had it's better than going the 30+ times a day that I was going before.

:)

Well actually i do realize that certain diets and other natural approaches can help some but you said so your self you have never been in full remission.  I am still taking things like fish oil, probiotics, vitamins and eating well and i believe in these supplements and diets but they never reversed the symptoms of this disease to the point where i can say i'm completely normal again.  I can say that now.  Why should you have to exclude all these foods that the rest of the world eats every day?  It should be up to you to eat what you desire without feeling the consequences whether or not it is healthy for you or not.  A normal individual with a healthy digestive tract should not have to eliminate all these different types of foods or feel the need to load up on supplements just to feel "relatively good".  There is still clearly something wrong.  I know some chronic diseases require nutritional supplements because for some other reason the body isn't allowing it or absorbing it properly but that is a whole other condition.  We should be able to tolerate anything we ingest just as people without this disease do.  I wasn't content with the way things were going for me and my life revolved around pain, drugs, supplements and eating strict diets.  I wasn't happy, i was always depressed and worried with anxiety from this disease.  I didn't want to do anything.  I truly learned that all that matters in life is your health and without it you can't enjoy the finer things in life.  I took alot for granted in the past and now realize how lucky you are to wake up in the morning feeling good.


MAD
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 1/23/2009 8:47 PM (GMT -6)   
Pushingforward said...

i have a feeling mine might be from bacteria imbalance as well. I just find it a coincidence that my roomate at the time was on intravenous antibiotics for a blood infection he had, and he developed severe diarhhea. Within about 2 weeks, I had diarhhea. His colonoscopy showed nothing and he was eventually told he had IBS.

I was tested for bacteria and all that jazz, but my colonoscopy showed colitis. I just think it's a weird coincidence that's all. Anyways, I do take probiotics and keep an eye on the research about fecal transplant as it may be something I'd consider in the future, depending on what troubles lie ahead.

MAD - you said you got your info on how to do this at home from the Australia Centre for Digestive Diseases. Can this be found on a website? I also assume you had to find a donor...family member?
I think that would be the most awkward question I could ever ask someone..."Hey Mom, Can I borrow a bag of your poo when you're done with it??" tongue   .... I guess if it would cure me...

The protocol isn't available on the website, however if you call the clinic and make an appointment for a phone consultation they would provide you with one and alot more valuable information tailored to your specific case because they review your medical records and history.  That will cost $100.00.  I ended up using my brother as a donor and had him screened thoroughly before the transplant.  He was a good candidate because he was a family member with no history of bowel problems or antibiotic use.  He never experienced much diarrhea at all in his life time and all these factors i mentioned make up a potential good candidate with healthy levels of good bacteria.



subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/23/2009 8:53 PM (GMT -6)   
Chester_Lampwick said...

I take it you're not Canadian. You wouldn't go to your insurance company's Web site. This is covered by our universal health care. I still know of a ratings system for specialists. There's an agency that records complaints filed against doctors, but I'm sure that isn't freely available.


Nope. I'm living in the United States. I hadn't realized that Canadians could not choose their doctors. I lived in Taiwan for many years and had national health insurance. We could choose which doctors we wanted to see.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/23/2009 9:08 PM (GMT -6)   
I used my granddaughter as a donor. She was breastfeeding at the time. The poo was a gooey, yellow substance--much nicer than using regular poo. I'll do fecal transplantation again if either of my daughters has a baby. It really was a huge boost to my system. Until then, I'll be taking Probiotics.

If Probiotics works for you, then there probably is a good chance that fecal transplantation will too. For me, fecal transplantation is like a super Probiotic.

Please remember though that fecal transplantation doesn't work for everyone. I've had people say that they tried it, and it didn't work. I just don't want to give false hope to anyone.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/23/2009 9:44 PM (GMT -6)   
MAD said...
pb4 said...
As much as you understand that this particular procedure which has worked for you may not work for all, then why is it hard for you to understand that diets or other methods that you've tried that failed you have worked for others?

I've been suffering for 18 yrs straight with no full remission the entire time with crohn's colitis (which is likely what you actually have) and I can tell you I've been failed by the medical communtity but I can also tell you that the oral RX they've tried me on were of no use to me because I was either allergic or non-responsive to them, that however is not necessarily the medical communties fault but in all honesty I've found some relief with the natural approach along with diet, still not full remission but with complications I've had it's better than going the 30+ times a day that I was going before.

:)

Well actually i do realize that certain diets and other natural approaches can help some but you said so your self you have never been in full remission.  I am still taking things like fish oil, probiotics, vitamins and eating well and i believe in these supplements and diets but they never reversed the symptoms of this disease to the point where i can say i'm completely normal again.  I can say that now.  Why should you have to exclude all these foods that the rest of the world eats every day?  It should be up to you to eat what you desire without feeling the consequences whether or not it is healthy for you or not.  A normal individual with a healthy digestive tract should not have to eliminate all these different types of foods or feel the need to load up on supplements just to feel "relatively good".  There is still clearly something wrong.  I know some chronic diseases require nutritional supplements because for some other reason the body isn't allowing it or absorbing it properly but that is a whole other condition.  We should be able to tolerate anything we ingest just as people without this disease do.  I wasn't content with the way things were going for me and my life revolved around pain, drugs, supplements and eating strict diets.  I wasn't happy, i was always depressed and worried with anxiety from this disease.  I didn't want to do anything.  I truly learned that all that matters in life is your health and without it you can't enjoy the finer things in life.  I took alot for granted in the past and now realize how lucky you are to wake up in the morning feeling good.

 
But remember I said I have complications with my crohn's-colitis (really lengthy so I won't go into full detail but it's with the perianal crohn's skin tags on my anus as a result of them being misDX as hemmies)...
 
Regardless, there are people that use your approach and it's still not a cure, they still get flares and it doesn't work for everyone either...you also have to consider the fact that there are varying degrees for each IBDer some are mild, moderate or severe and that makes a world of difference when it comes to treatment...and as far as diet goes, even without having an IBD, people should not just eat whatever they want, they should eat healthy because one way or another eating unhealthy will have a negative impact on ones health.
 
If only IBD was cut and dry but it's not and it's very individualistic for each IBD and what works for some doesn't work for all unfortunately.  That said, as I always say, if you find something that does work, stick with it, just so long as you don't push your ways onto others or make others feel like they are wrong in what they are doing to try and make themselves feel better because this disease is too individualistic.
 
:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/23/2009 10:00 PM (GMT -6)   
Thanks for posting that, MAD. I have been seriously thinking about doing fecal therapy myself, having read all of Borody's articles in full text. I would like to do it "home-brewed" using my girlfriend's feces. I have stocked up on empty enema bottles for example. She is okay with it, and generally has good stool and no unusual disease history. Can I ask you, though, specifically what sort of screening you did on your brother? Tests are expensive and yet many are next to useless. A case in point are stool tests for parasites: I have tried, as therapy for my own indeterminate colitis (officially UC but somewhat Crohnsish to pathologists), both TSO and hookworm. The TSO dampened my colitis but didn't give me remission, while the hookworm therapy actually flared me somewhat (I didn't regret trying it though) but never helped later. However, repeated stool tests failed to show either TSO or hookworm eggs present- the tests are simply not sensitive enough.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM (acupuncture & herbs)
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


MAD
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 1/23/2009 10:56 PM (GMT -6)   
Probiotic said...
Thanks for posting that, MAD. I have been seriously thinking about doing fecal therapy myself, having read all of Borody's articles in full text. I would like to do it "home-brewed" using my girlfriend's feces. I have stocked up on empty enema bottles for example. She is okay with it, and generally has good stool and no unusual disease history. Can I ask you, though, specifically what sort of screening you did on your brother? Tests are expensive and yet many are next to useless. A case in point are stool tests for parasites: I have tried, as therapy for my own indeterminate colitis (officially UC but somewhat Crohnsish to pathologists), both TSO and hookworm. The TSO dampened my colitis but didn't give me remission, while the hookworm therapy actually flared me somewhat (I didn't regret trying it though) but never helped later. However, repeated stool tests failed to show either TSO or hookworm eggs present- the tests are simply not sensitive enough.

Well i think if anyone is going to try this then i would advise them to follow the procedure 100% or else your chances of it working are lessened a great deal.  Having said that i actually didn't follow the procedure 100%.  It required an antibiotic course for 10 days which i couldn't get passed the third day because i started to flare up pretty bad.  I actually had a feeling that was going to happened and i stopped after the third day.  There are alot of factors involved with the transplant and the screening process should be used in conjunction with the donor's medical history as well.  I couldn't agree with you more when you indicated stool tests are not sensitive enough.  Basically the required testing for both yourself and the donor involve blood work and stool samples in order to test for any possible transmitted disease.  It was a nightmare trying to get all these tests done.  There were many abbreviations that clinics just never heard of before and i had to go and research it myself then bring it back and have them test for it.  Anyways the whole idea is to try and avoid any possible transmission of disease or harmful pathogen from one person to the other.  It's also used to rule out any possible infection that may be causing your problem but like you said it's hard to pick up on these with stool samples, they don't always test positive when at times you are.  I wasn't too worried about it because it was my brother and i knew his history.  I'm not familiar with TSO or hookworm therapy but if you need to know exactly what things to test for prior to HPI, let me know and i'll help you. 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/23/2009 11:26 PM (GMT -6)   
I did not do any antibiotic treatments before doing the fecal transplantation. Nor did I get my granddaughter's stool tested. I felt my granddaughter, being so young, was a good candidate. I also did the fecal transplantation only three times--one each day. This is less than the required 5-10 times.

One thing, at the time, I couldn't decide whether I should wait until after I had a BM or do the fecal transplantation immediately after my granddaughter pooed. I decided to do the fecal transplantation right after she pooed--that way there would be less chance for the bacteria to die. I made the right choice. The enema slowed down my having to go to the bathroom; so there was no need to wait until after I had a BM.

Also, please note. I have Colitis only in my left colon--near the rectum. This could also be a factor as to why it worked so well.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners

Post Edited (subdued) : 1/23/2009 10:31:14 PM (GMT-7)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 1/24/2009 11:35 AM (GMT -6)   
     I had never even heard of fecal transplantation!  How do they do this?
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 1/24/2009 12:38 PM (GMT -6)   
I find this so interesting. I have been following all of the posts that have to do with the fecal transplant. I keep having to force myself to focus on the scientific aspect of good bacteria etc so that I don't get too grossed out. In the back of my mind I have been thinking about doing it and using my son as a donor as subdued did her granddaughter. He is only 3 months 3 weeks old. I have plenty of it readily available..........Anyway do you think a good probotic like VSL would work as well if I used it as an enema? Maybe I should start there. I am not sure if I can muster up the strength to do the other just yet.
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
In a flare since beginning of December 08
Left-sided colitis diagnosed at age 28 in 2001
Asacol 4 pills 2 times per day lower dose due to breastfeeding
Hydrocortisone and Rowasa Enemas as needed
Prednisone 40mg Haven't started tapering yet (still bleeding and urgency)
Zoloft,Prenatal vitamins,Juice Plus,Expecta DHA,Emergen C,Probotic and Udo's Oil when I remember:(


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/24/2009 3:54 PM (GMT -6)   
Christine1946 said...
I had never even heard of fecal transplantation! How do they do this?


Hi Christine,

I didn't follow any approved method. I don't have the money to go to Australia, I was desperately trying to get off Pednisone, and my daughter was visiting for an extended weekend. Time was an issue. So I did what I felt made sense.

As soon as my granddaughter had a bowl movement, I took the diaper (before any of the bacteria had a chance to die), scooped out the gooey poo and mixed it with a bit of warm water. I took every bit I could. I didn't get more than one or two syringe's worth. Babies poo so little. I put the mixture in a syringe that had a long, removable tip (so that the poo could get up the butt farther). I then put the mixture up my butt using the syringe. I did this every day for three days. (You're supposed to do it 5-10 times.)

I don't mind the grossness. It's peoples' response to it that bothers me. They get grossed out. But really, having a Colitis flareup is far grosser.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/24/2009 3:56 PM (GMT -6)   
mjw82704 said...
Anyway do you think a good probotic like VSL would work as well if I used it as an enema?


Hi mjw82704,

I think a Probotic like VSL is not going to have all the bacteria that feces have.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 1/24/2009 4:16 PM (GMT -6)   
     I've been taking Powerdolphilus by Country Life probiotic since last summer.  Don't know whether this has helped me or the combination of everything else finally kicked in.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/24/2009 5:28 PM (GMT -6)   
barbl said...

I would skip the nasty poop enema and take Probiotics smilewinkgrin

I'm certain mine was from a bacterial imbalance. Thats why the SCD diet works so well, you can't eat any carbs, which breakdown into sugar and feed the bad bacteria.

I have been on the SCD and have been taking multiple probiotics for YEARS, and I am still symptomatic, and pred-dependent now to prevent constant flaring.  Much as I believe in starving bad bacteria and in using probiotics, feces offers a far richer supply of probiotic bacteria on top of all this.  Like anything else, this therapy is an extreme longshot, but I think worth trying before surgery.
 
To the poster who asked about using VSL3 instead of a fecal infusion- bear in mind that feces contain HUNDREDS of strains of bacteria as a opposed to a handful, so I can't imagine that VSL3 or anything like that would come anywhere close as effective, assuming that this therapy would work at all.. 
 
MAD- if you read this- I am extremely interested in what specific tests you had to do on your brother.  If you can list these here for all to see, that would be fantastic.  Otherwise, please feel free to PM or email me via my profile.  I am inclined to take my chances with my girlfriends's stool as I don't really see what germs I can catch from her that I haven't already shared; and I am so close toi surgery at this point that I am willing to accept the risk.  But if you can get me the list of tests, I could start working on those in a hurry.  I am familiar with Borody's procedure needing an antibiotic "cleansing" phase but I would definitely NOT want to use any antibiotics.  They were responsible for past flares and fare not use any antibiotics anymore at this stage unless it is a matter of life and death.  OIn one of Borody's papers, in full text, the protocal is discussed in sufficient detail, I believe.  But the more you feel able to share, the better- though I will try and do the phone consult ... but in the meantime please do share what you can, starting with the list of tests if you are able.
 
 


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM (acupuncture & herbs)
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 

Post Edited (Probiotic) : 1/24/2009 4:42:57 PM (GMT-7)

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