is this the cure?

I tried most of these things on your list with no success. For some, they might gain remission, for others like me, remission was not possible.

I am thrilled that I had surgery 9 years ago. No more meds, no more cycles of flares, and most importantly I can travel in a minute's notice and not worry about the possibility of getting sick. Oh, and I don't need to know where bathrooms are every minute of the day. I see this as the best result of surgery, and not the worst choice as you pointed out.

Why don't you give your theory a shot and see how it works?

Sue

i never tried any of those things, taking and doing all that stuff sounds like a big hassle honestly.
And how would you go through life and never ever take an antibiotic? what if you got a seriously infection?
Personally, i had surgery, like suebear, and thats the only cure there is for now

This is very interesting. I like how it is all organized as a step by step.
B

Hello there all,

Hello Summerstorm: The idea is not to go the rest of your life without ever taking an antibiotic. Antibiotics are good and necessary sometimes. They just have had the side-effect on me (and others) of triggering UC by changing the balance of the gut flora/fauna.

Taking these steps is just an attempt to tweak the gut flora and fauna to calm down the UC.

If i had to take antibiotics again I would of course! But then I would take probiotics after.

It might sound like a hassle but so is having UC. Doing a one-off purge and re-generation of the gut flora is less hassle than an 8-hour operation to remove a colon i think - if it can help someone avoid it, then I think it would be great.

I don't think surgery is the only cure though I am glad it has brought relief to some sufferers. It might be a relief for severe cases but it is not for everyone. I was diagnosed with UC, prescribed medication and never even had to take it. I took probiotics for a bit and it just went away. That could be because it was just a mild case, but it also might be because we are onto something here... especially as so many people have posted with success in fecal transplant and the worm therapy too.

If it comes back again badly one day I'm gonna try the steps i wrote above.

Hello Quincy:
Glad you are happy and doing fine. Yes that could be what is going on, with calming down an initial flare heading off further trouble.

Hello Hateuc:
Yes, thank you!! i put them all logically together. In my theory, I think they should all be done together!! That is my big idea - a multi-pronged simultaneous attack.

Hello to ElaineNY:
Yes, me too dear heart. I would avoid surgery as long as possible - if there is another way, I'm committed to finding it :)

For now I'm OK but I know I could relapse one day.

I have tried a few of those things. I have done a course of tetracyclines, diflucan, yeast cleanse, followed by loads probiotics, starving myself, SCD Diet... I haven't been on antibiotics in a few years now but I am currently on steroids for a massive flare that is finally under control (because of the steroids)

I have not tried Fecal Transplantation but I definitely would if I had the perfect donar. I would try worms but they are very expensive and not FDA approved. I've asked my doctor about them and she is extremely interested in worms as treatment but of course can't help me get this treatment because it is not approved.

I am pretty sure Yakult has artificial sweetners in it. I would avoid that stuff. Lifeway Kefir is probably better or make your own yogurt, homemade has a lot more viable organisms.

The crazy thing about this disease is that some people have mild cases that are easily managed for their entire life with rectal enemas and some of us, like me, have a terrible case that isn't even managed with oral 5asa medication. I think your strategy would work for some but probably not for me. If I had the worms, that might give me a shot at remission. Maybe fecal transplantation would help but that could be a short temporary remission or a few years, you never know.

Sadly, the only "cure" for UC is having your colon/rectom removed...but that's not to say things mentioned above won't put you in remission cuz they very well could, you won't know until you try and remember, what works for some doesn't work for all and often it's a combination of things that work best together, it's just a matter of finding the right combination of things for you....plus giving each thing you try a fair chance (more than a few days/weeks, it can take months for things to kick in to your system before you see results, often people give up on things to quickly).

I like your post and found it interesting about the hygiene theory, but how do you explain a 5 year old coming down with UC?  My daughter was NEVER on antibiotics and didn't have a long history of anything other than vitamins.  I like to read the theories posted by people who came down with this awful disease as adults, but my daughter just turned 5.  Anyone have any thoughts on the young?

I'm glad your feeling great and hope it lasts a lifetime, but I was told that you can have very long periods of remission, some lasting years, go off of your maintanence meds and think your cured.  Then it can come back with a vengeance.

Peace.

I'm not sure I buy the clean theory for infants and children; they certainly come in contact with more germs than adults. I believe UC has a genetic component. If you have the gene then all it takes is a trigger. Triggers can be anything from a virus to antibiotics to food borne illness. Who really knows for sure? Despite that I feel very sorry for children who have UC. I hope your daughter gains remission soon.

Sue

It could very well be that the percentage of the population predisposed to getting UC has not changed but instead more people predisposed are exposed to a trigger or triggers. Probably most likely actually.

Light skin predisposes you to melanoma but isn't the "cause" skin damage from the sun? I don't think medical science has a clue what causes UC in that sense or whether there aren't dozens of causes(triggers). The worms or probiotics may very well simply be effective symptom relief or protection from the body reacting to the real trigger.

The huge increase in young children getting severe colitis really tells me that something has changed in children's environment from past generations that is triggering the disease at an early age. Exposure to something or lack of exposure to something. It could even be a combination of things. A big mystery.

By the way you do not need to use antibiotics to be affected by their use. Resistant germs dangerous to people have been cultivated in hospitals by the heavy use of antibacterial cleaners and mutating in other patients improperly with antibiotics. Routine antibiotic use in farm animals has created "super" germs like some of the e-coli strains that have killed many people. Lack of parasitic worms could possibly permit dangerous bacteria to multiple in a adult human host without harm and then get passed to an infant that develops an autoimmune disease. You could go on and on.

We really have to start treading lightly when it comes to exposing ourselves to "new" things and removing things we have been long exposed to.

ithurtsmom, I would also guess it's her immune system, basically UC as what the doctors say. Some people get great help from alternative treatments. For me they seem a little helpul but the only thing so far that does me enough good is the Imuran (and pred, ew). So I don't think mine is antibiotic-related because probiotics simply don't help me much. I'm sure there's still a trigger though, I bet the immune system is kind of developng in children so UC can pop up. For me I think puberty ended up being an issue, or who knows.

Hello all great to see you all!!

for Suebear:
I hear your point and i respond thus:
According to the theory children in the developed world encounter far less germs and worms than children in the third world. Children in the developed world also have adults around them who use disinfectants to clean surfaces. They drink chlorinated water, and they are treated with antibiotics/worming tablets regularly.

Children in the third world don't grow up to have hayfever, ulcerative colitis or Crohn's disease at the rates we do, this has been scientifically proven.

So I would say yes, I stand by the theory that too much hygiene upsetting the balance of flora/fauna in our guts triggers the underlying genetic predisposition

And further would say that predisposition is there in some people not as a genetic flaw or error in their make-up but as an evolutionary response to living with parasites for millenia. We are symbiotic and those predisposed to our conditions have a highly evolved immune system that relies on having those parasites to function properly. Take them away and some of us malfunction more than others.

for Summerstorm:
Hello, yes correct!
And guess what.... antibiotics triggered the condition in me, too. Doxycycline as a prophylactic against malaria....


For AZYooper
hello there, I LOVE the way your mind works. Yes I have been thinking along these lines as well. And your reasoning on skin cancer is very interesting parallel. I could add environmental dimension to that, too.... eg: pale skin predisposes you, radiation from the sun causes it.... and lack of ozone layer protecting from the sun's rays has increased the cancer rate.
In the southern parts of Australia where we get ozone depleted air in the upper atmosphere, the skin cancer rates have rocketed in the past 50 years. Now 1/3 of us get skin cancer here.

I reckon same with UC as well. Genetic predisposition plus environmental trigger.... something is doing it. But whatever is doing it, I think the probiotics/worms might help turn the trigger back off again.

For Ithurtsmom
Well that is amazing your daughter has never had antibiotics. That is the very first child I have ever come across to not have had them.
However, I feel this does not disprove the theory

Because according to the hygiene theory your daughter is still in a Western country where diseases and worms have been eradicated steadily over the past 50 years.

It may be the necessary bacteria that protect our gut are now totally absent from the biosphere in your area, as opposed to say Ethiopia.

You have no doubt had antibiotics in your life, as would your partner and other people in your neighbourhood. Five years ago when your daughter was born, if she could not get the bugs from you or family or outside then the theory would still hold.

Now if she rolled in the dirt in Ethiopia, then I reckon that would be truly massive.

for ElephantPipe
Hello, greetings!
I sometimes wonder if hormones might play a part too. For you, puberty. I noticed back when I still had symptoms that they were worse around the time of my period. Not sure if that was just added pressure from cramping though.

for thatfield
That is really interesting. I was not aware of animals being diagnosed with UC. Anything a human can get, though, an animal can get too.
Still, it stands to reason that any animal that goes to the vet to be diagnosed probably has the kind of owner that would would also deworm it.

I don't know about animals and their illnesses. I just know that in human populations of people that grew up in unsanitary third world conditions, like ethiopia, don't have UC. Give them worming tablets, clean them up and send them to say... Israel, and all of a sudden allergy rates, UC and Crohn's sprout up at first world levels. This actually happened with a group of Ethiopian Jews relocated.

Bye everyone all the best, if you think this theory is worth a go try it, what have you got to lose, our condition is life-long after all.

But if you try it, I'd say don't try it half-baked. Like don't take one strain of probiotics and expect it to work... variety. I think our condition needs as much variety of organisms as possible. That is the theory.

Hey It hurts mom..just a few questions about your daughter?

Did she receive the MMR vaccine?
Does anyone in your family have any IBS/IBD issues?
Did you breastfeed?


I have seen so many probable causes for UC..to include...MMR vaccine, genetics, birth control (which obviously wouldnt apply), antibiotics. Also consider the amount of antibiotics and hormones found in the meat we eat today..Such a sad world we live in!
Have you read about the SCD diet? The book is called "Breaking the Vicious Cycle" and can be found on amazon with amazing reviews. It would be much easier to change her diet now while she is still young. The theory behind it makes so much sense and I am doing well on it although I am only on week one! I have UC as well.

Hope this helps you ponder a little bit! My advice: Don't always settle for what someone tells you. (MD for example) Diets and natural cures dont make money like RX do. Not to say MD's arent awesome and necessary but sometimes there is hope beyond what seems right in front of your face!

I wish your young daughter all the best!!

KK217