My Story: To remission and back

Hello all,

Intro:
I have been reading these forums for some time now and figured I would sign up and share my story. I was diagnosed with colitis during March of 2009 when I suddenly began having bowel movements with bloody stools. My doctor initially didn't think anything of it and chalked it up to hemorrhoids though after weeks of bleeding, I was scheduled for a colonoscopy which revealed irritation and bleeding in my colon. I did see a specialist initially and was prescribed intense antibiotics; though, I never took them because I didn't like what I read on the side-effects. I instead went back to my general doctor who suggested a natural alternative. Soon after my colonoscopy, I was put on a diet free of potentially irritating foods and Florastor probiotics. I found the biggest culprit for my colon was beans; I stopped eating beans and began feeling better. Florastor didn't work for me but I found that Align actually did help. I obtained remission in May 2009 with a mostly vegetarian diet (I was already a vegetarian) some consumption of fish (mostly salmon), limited dairy, and eggs. I could consume any fruit or vegetable except for beans. I would never be able to eat beans again, even soy beans and black-eyed peas which are technically beans. Aside from the beans, my theory is that my initial colitis was also caused by an imbalance of oils and omega fatty acids; at the time I was cooking with soy oil and eating many fried foods.

Remission:
Up until recently I was mostly in remission (2009-2016) with few one or two day flares throughout the years. As long as I didn't eat beans and limited my alcohol consumption, I was doing okay. Heavy drinking would lead to bloody stools so limited that. Overall, I kept a healthy lifestyle with a mostly vegetarian diet which kept me in remission.

Present day:
This past summer I found myself eating less healthy due to my increasingly busy life. I made less fresh foods and ate more microwaved meals, I consumed more dairy and less healthy oils. about a month ago, I noticed blood in my stool which I hadn't seen in years. I initially attributed this to fried and breaded eggplant I had been eating which was made with soy oils. Since then, I've been flaring and have drastically changed my diet to cope. At the beginning of the flare, I was having cramps and frequent bowel movements with constant bleeding. I am now back to two BMs a day (morning and evening) after following a strict diet regiment.
I make a smoothy every morning consisting of almond milk, frozen blueberries, banana, frozen spinach, walnuts, a teaspoon of olive oil and a teaspoon of manuka honey.
For lunch I make guacamole consisting of avocado, mango, and sometimes papaya. And eat it with trader joe's organic chips consisting of blue corn, amaranth, quinoa, and chia seeds roasted with sunflower oil.
Dinner usually consists of hard boiled eggs with cooked frozen spinach. Sometimes I'll bake sock-eye Alaskan salmon.

My diet has allowed me to have only two BMs a day with limited cramping but I still see small streaks of blood every other day. One of the most significant changes I recently made was adding Garden of Life Raw Probiotics Colon Care twice a day which improved my stools and reduced bleeding. I recently (just today) added psyllium seed powder to my smoothie in hopes to achieve remission. I'll keep posting my progress. I also take all the listed supplements in my signature along with aloe vera juice.

Were you actually diagnosed with UC? A colitis diagnosis and prescribed antibiotics sounds like they thought it was infectious.

Mesalamine medication to try and address blood seems reasonable.

If it was UC, then in the next year or two, good idea to have a scope to check for pre-cancer.

"U.C. is a chronic, lifelong illness that requires a maintenance medication"


maybe someday folks will accept the fact that while UC most often will require some sort of LIFETIME TREATMENT, medication is only one type - many folks do quite well without medication -

you can throw all the numbers out there you like, but until your 75 becomes 100, you're misleading folks with your words - is that your intent ?

I think this is spam for Garden of Life. Or Abe does not have UC. I know many people have success with diet modification. Other than low residue while flaring I have found no link between diet and UC flares. Beans I do very well with (I always soak 24 hours before cooking), as the resistant starch helps to bulk the stool.

Soy, all I know is I definitely fall into the 75% Even a few weeks off Lialda (and on Asacol) I was in a tailspin flare.

People who successfully treat their UC with standard RX meds don't need this forum as much as people who have not had success with RX meds. Why would people who are doing well with standard medical protocol need to find answers that their doctor can provide to them?

I am in the 25-30% who have not been successful with oral RX but I don't think I'll need surgery anytime in the near/middle future, although one never knows. My UC has been stable for quite a while and I know how to get back on track if symptoms appear (100% traceable to falling off diet mod. wagon).

You've said this before

It seems some people prefer personal opinion over well researched facts and information.
Personal opinion meant that the earth was flat, and the sun moved around the earth. Some change their minds because of research, others clung to their self important opinions.
Personal opinion is valuable when it is balanced by good research.

This is OT but important....
The 'experts' at the time were the Church, and they called any new information heresy. It took a long time for science and researchers to be accepted as valuable, and we should not go back to those dark ages.

Facts and research are valuable.

NiceCupOfTea said...

ambling said...
It seems some people prefer personal opinion over well researched facts and information.
Personal opinion meant that the earth was flat, and the sun moved around the earth. Some change their minds because of research, others clung to their self important opinions.
Personal opinion is valuable when it is balanced by good research.

Personal opinion also meant that lots of British people thought Brexit was a good idea.

I'd rather stick with science and knowledgeable people.

so you think most people come to this forum for science and knowledgeable people ? like GI's and such ? but most folks who come here have already seen and heard those science/knowledge people - so whey do they come here ?

personal experience maybe ? have you not given your personal experiences thousands of times ?

Well now, I just throws me chicken bones down, an if a they look like my ole gran then I knows it's true. :)

This isn't my thread, so I am curious why you're ignoring the OP and focused so much on my semantics, and prying at them.

soynomore said...
do folks really come to forums like this to given information they can get just about anywhere ?

People come to healing well as it's a support forum, to encourage and help others, share experiences, listen when they need to vent, to feel a connection with others, and when they're flaring and nothing's working. Most specialist doctors have short 4 minute appointments, and many people have lots of questions (especially the newly diagnosed as and those flaring and deciding about new classes of medications). Therefore, I think there's great value in talking about standard medical recommendations for uc and treatments as it isn't available "just anywhere" in an easy to understand format. Unless someone is familiar with the appropriate medical jargon and the right sources then it's not easy to just google many of the complex questions asked here. I believe there's value in discussing alternatives, and I recommend them, as they might help manage some of their symptoms. Some, but not all, benefit for adding a diet or supplement to their toolbox, and they're generally do no harm.

soynomore said...
so what is your opinion ? do you believe everyone with UC will need to be on meds forever ?

I believe what I post, mr soy, so I can restate it if you wish. Yes, I believe medications are forever for the vast majority of uc patients and I am backed by the medical establishment in that assertion. Alternatives can be combined with medications and those alternatives are also forever, as they don't cure any more than medications do. Only our j-pouch or end-ileo friends are spared from taking something daily for life (unless they have pouchitis). I've read medication noncompliance is a big issue with uc and other chronic illnesses and results in preventable hospitalizations and expenses. I've read that those who stay compliant have the longest remissions and the the shortest flares. So, I encourage folks to take their medications whether they're doing good or bad. I've tried a number of supplements and diets and seen no positive results on my uc symptoms. Yet, I still recommend alternatives to others.

soynomore said...
facts and figures have little value to me - most are outdated and non-relevant - i believe most people want to hear real stories from real people about what's gong on today -

We're all here to tell our personal stories but anecdotal evidence shouldn't be the primary driver of our decisions. Rather I believe in scientific research, facts, figures, and the advise of our medical professionals and doctors. I bet the majority of us trust facts and those who are professionals in that area. Do they know everything and have a solution for every case? No, but there's new research ongoing, a lot of them are smart cookies and will eventually find a cure. They've given me remission and provided me great relief from my uc symptoms. I often cite my sources, provide odds, and link to additional information as I believe it provides great value. I'll choose facts over Mr Steven Colbert's "Truthiness".

Soy wasn’t ‘targeting’ you. Your original statement was “U.C. is a chronic, lifelong illness that requires a maintenance medication”. Readers get the impression that only conventional meds are effective, at least that is what I thought you were trying to say. After Soy asked for clarification you then conceded that perhaps only 75 percent receive benefit from conventional medication.

Such misunderstanding could have been avoided in the first place if this forum would have at least one moderator who sympathizes with the 25 percent who rely on diet and supplements.