UC -- alternative outlook, living without meds

Food plays a role in UC is not a fact BTW. Many of us flare irregardless of diet modification. And there are some that diet plays an absolutely essential role. We all seem to have different triggers. You are actually very fortunate if you can keep your UC in remission via diet. I wish it was that simple for me.

Well Globe the not so distal parts of my brain say your post reads like a sales pitch. And I'm not quite sure why you are getting so defensive. Was the purpose of your sharing to give support to others or to get everyone to agree with you? No one here is telling you not to share, but we don't all have to agree with you either. You are new here, we are not. You are not really saying anything we haven't already heard or tried. Doesn't mean it doesn't have value, but it isn't going to be an epiphany either.

I'm not trying to get you to stop sharing, but you may want to tone it down a bit.

NCOT, I know what you mean. Some of the diets are so strict. I really don't understand how people do it. I guess because there is a payoff for those people it works for. Honestly though, even if it worked for me, I don't know that I could keep up with that. Too many restrictions. I find it hard to stay away from lactose even though I have sensitivity to it. I can't imagine staying away from almost everything.

I also would rather take the mesalamines.

I think you're confused about the meaning of the word fact... Just because you viewed a few people's ubiome results and they were inline with your general way of thinking, doesn't make it a fact. It makes it a theory, and a weak one at that. You would need to go a lot further to make it fact. All of your "facts" fall into this category. You are passing off your own, little, unfinished, undisputed, limited information as "fact". This is bothersome to many of us, simply because we've been to hell and back with this illness, and you're stating that you, somehow, were able to get above and beyond everyone, including scientists and researchers who have dedicated their lives to this cause, and come up with all the answers, which is ridiculous. Regardless, thanks for sharing.

Globetrotter what do you think of my latest Ubiome data? Does it fit with some of your findings? https://drive.google.com/open?id=0B9Qa2JDtr2JHamtreC1IVUFPbHc

notsosicklygirl said...
I think you're confused about the meaning of the word fact... Just because you viewed a few people's ubiome results and they were inline with your general way of thinking, doesn't make it a fact. It makes it a theory, and a weak one at that. You would need to go a lot further to make it fact. All of your "facts" fall into this category. You are passing off your own, little, unfinished, undisputed, limited information as "fact". This is bothersome to many of us, simply because we've been to hell and back with this illness, and you're stating that you, somehow, were able to get above and beyond everyone, including scientists and researchers who have dedicated their lives to this cause, and come up with all the answers, which is ridiculous. Regardless, thanks for sharing.

yes. this. thanks.

Globe trotter, I am very interested in your information. I know a well regarded integrative medicine doctor who works to heal ulcerative colitis and crohn's disease with precise stool tests, some blood testing. She agrees that often the lack of stomach acid contributes to SIBO as you have described. She then prescribes both Vitamin C to tolerance, and hydrocholic acid in the form of Betaine HCL with meals. Additionally she is in favor of Glutamine for healing the endothelial cells.

I think it is important information that you have researched for yourself, and I don't care what tone you use. I don't think you are condescending, and I don't post much.

I was diagnosed with ulcerative colitis in March of this year, after never having had GI problems previously and I am in my late 60's. It was very mysterious to me. Bleeding with stools, no pain, no diarrhea, and I have had 4 GI doctors, none of whom admitted that diet had anything to do my symptoms.

I have found this forum to be extremely supportive and informative -- more than the doctors I have consulted by far. I am surprised that people are dissing your information. Previously this has been the kindest and most supportive forum I have seen on the internet.

I hope that you continue to do research and to treat yourself and your symptoms improve and you go into remission.

I have tried many of the probiotics that have been suggested here (none were discussed with the various gastroenterologists I consulted) I have tried the SCB diet, which I learned about here, and it is clear to me that sugary foods and alcohol can start a flare after a period of quiescence.

For me, so far on this journey, I was prescribed Salofalk enemas nightly, and at first these worked quite well. The blood and mucous diminished, although never disappered completely. Then after becoming careless at a July 4 party this year, and drinking far too many Sangria and desserts, I started to have a flare -- meaning more blood with stools in AM and throughout the day, and despite now being extremely careful with diet and faithfully taking the enemas, I never returned to the earlier state of better control. Finally my latest doctor, who is kind if not creative, added Lialda, 4.2 gm orally all at once in AM to the mix. I never took 4 tabs to start with, trying 2 pills, then slowly adding one more later in the day. This, knock on wood, has worked well. I find if I take all 4 pills, I start to feel funny, a little like flu, or with a sense of mild shortness of breath. So I stick with 2 or 3 pills per day. With no blood now, I am adding in a tiny bit of carbohydrate occasionally for taste.

Since unlike all of you, I have constipation, I think that taking Vit C, to tolerance, slowly increasing it, may help, as higher doses of Vit C do cause diarrhea. Now I try various combinations of laxatives, ie Metamucil but hesitate to take too high dose as I work every day, and only experiment on weekends, when I can stay home if I need to spend the day in the bathroom . It is hard to find the exact amount, and it seems my gut gets used to different laxatives and goes back to its norm which is only a poop in AM after the enemas.

So please come back Globetrotter, and tell us what works with you.

And maybe someone can tell me how to add my modest regimen under my profile.

I love this forum

I honestly don't think you sound in remission if you relapse that quickly after eating something 'wrong'. The whole point about remission is that you are inflammation-free, which means you should be able to go back to eating most things without issue. It's when people are flaring that they can hardly eat anything.

I know you're upset by people questioning you, but if you have really developed a groundbreaking new theory, it needs to be able to stand up to every criticism we can throw at it, and more.

Hi GlobeT

Please continue to work on your theory about UC and different gut biota. I believe it is valid and can help others. Do not take offense if some others find fault with your words or concepts, don't be that thin-skinned that you will pack up and leave because not everyone agrees with you.

Even elite scientists encounter very strong negativity when they present their work after years of dedicated research. Be strong and continue. You never know who may read your words here, now or in the future, the internet is forever. Perhaps someone will be awarded a Nobel based on a similar theory and research, it may be happening now (research) in a lab somewhere in the world.

Diet modification and micro biome theories have met with much negativity, here and in the real world. But things have started to change and there have been scientific papers written that support what some of us discovered on our own. Diet modification has been a lifesaver for me.

Your diet mod. food list is not exactly mine but parts of it are similar. I believe those who say they could never adhere to it because it is not easy in the beginning but gets easier over time. Probably the hardest thing I've ever done but the results are worth it.

If your diet mod. works for you it may work for others. Do not allow negative comments stop you from stating your truth. I know what is true for me and nothing anyone says can take that from me.

Use search on the forum, many have posted their uBiome results. There's been lots of talk about Butyrate, links to research and so forth. Many of your individual points have been discussed over the years.

Hello Globetrotter,

Your diet is very stringent and drastic. How can you cope with it. If it is possible can you share your one week menu.

Even if you try to exclude only gluten there will be not to much to eat. If you add diary products in your exlude list it will be worsen the stiuation. When we add animal protains what will we eat?

Please do not understand me wrong I do not censure I try to understand how you manege this drastic diet.

We also try to apply for 2-3 months for our son (gluten and diary products) but it was very difficult and distressing.

Globetrotter - I gave you my thoughts, but you didn't say what you thought of them. I would like to know.