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Natural Remission after 4 months

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Posted 12/29/2011 5:41 PM (GMT 0)
Colonoscopy November 2011 showed pancolitis/ulcerations, had been feeling ill since August 2011. Year or so previously had about 3 flares which would clear up within 1-2 weeks. This last one has been with me since August! Was nice to at least have the doctor give me a name for my issue, but I wasn't about to go on drugs.

I'm a little stubborn and denied that my UC was bad, told myself it was probably mild. Struggled through so many days feeling horrible and weak and spent a lot of time running to the bathroom. Started SCD, felt a little improvement after a week but couldn't shake the D and had numerous accidents. Kept doing SCD for about a month but still had D. Started wearing depends to get myself around town. Social and work life shut down. Kept eye balling the Asacol in the medicine cabinet but wasn't sure it would actually help me.

Decided to get away and head east to see my mother and father (father has Crohn's). My dad had been telling me about how he beat his Crohn's with diet and he stopped taking all the meds, has been in remission for 7 years. Got on the plane feeling ill, but happy I at least felt well enough to travel.

Arrived at my folks place in the mountains, fresh air clean mountain water direct from the well, no cars no sounds... quite the change from Los Angeles. By this time I had lost close to 30 lbs and was continuing to drop weight.

I started a juice fast right away, with a liquid multi-vitamin. Green juices mostly, but a variety of carrot, beets, letuce, kale, ginger, lemon, broccoli (not all together). I don't know if it was just relaxing knowing my parents were there to take care of me, the air, the water, the juices or what... but improvements were coming with each day. My frequent bathroom trips cut in half, my bm though still D were more substantial. The urgency went away within 3 days, I was seeing little to no blood within 4 days. My bm started to form, still very loose but a happy change over the D. I started seeing more mucus, which in the past I would see when a flare was starting and when one seemed to be ending. Was also sleeping throughout the night, which I hadn't done in months.

Began eating meaty broth, banana and homemade coconut yogurt smoothies. Now closing in on a week and my bm are down to 2-3 per day, forming more and more. Started taking VSL#3DS yesterday, will slowly start introducing more solid foods and will try more fruits. Happy to have a loving family to look after me, and happy to see the light after many months of being sick. Feel like my previous remissions were quick and lucky and this one I've really had to work for, hope it lasts.
Posted 12/29/2011 6:46 PM (GMT 0)
Interesting story, sometimes I think Los Angeles is killing me too. I've had a ton of health problems since moving here four years ago.
Posted 12/29/2011 7:09 PM (GMT 0)
Good luck with your diet, it didn't work that fast for me but glad it is for you. Gluten-free and dairy-free seems to work for many people including me. Lack of stress is always good.
Posted 12/29/2011 7:23 PM (GMT 0)
In the middle of year 2 of a great remission and med free.
turmeric
PureGreen Protein
fish
eggs
harvest seed bread
butter
arginine ethyl ester

I am putting on weight despite working till 3:00 am most days, worked right thru Christmas after refusing week prior due to daughters birthday.

I take 5-htp and relaxall before bed and sleep like a 14 year old.

Just got Percatem and sleeping even better with that. Great nootropic.
Posted 12/29/2011 9:52 PM (GMT 0)
Congratulations! That's exciting. I'm thinking I might have to try something similar.
Posted 12/30/2011 12:52 AM (GMT 0)
I moved out of the city to the country and my symptoms did not improve. I wish they did. I have since moved back to the city and I have had ups and downs but overall, I've been doing ok.
Posted 12/30/2011 1:59 AM (GMT 0)
how great that relaxing at your parents was all you needed. i'd try anything to be med-free, too.
Posted 12/30/2011 2:37 AM (GMT 0)
I'm worried about what my diet will be like when I go home or have to go to work somewhere. I travel for work, weeks to months at a time... but I've read so many people's accounts of the ease of making your own food and finding suitable food while they're out and about. Just have to resist the temptation for the quick easy unhealthy choices.

I'm really hoping too that my idea of what triggers my flares is indeed true: sudden diet change to a variety of foods not usually in my diet, lots of sweets and breads, and high levels of alcohol consumption. That's what I'd generally do on a new job, and I'd generally get sick shortly thereafter. So far I'm 3 for 3 with that combo adding up to a flare. I'll have to see how the elimination of the excess grains/starches and above all ALCOHOL goes for me.

This past flare has reallllllly bummed me out. Going from having such a busy and full life with a job that takes me around the world to having the brakes put on for months at a time. Wow. Anyway, just have to address the problem as it is now and do my best to prevent further sickness... but man, what a dark cloud it is to have the possibility, and even inevitability, of becoming sick again like this hanging over my head. *sigh*

Friends keep telling me, just stay positive everything will work out. I'd like to think so, but does positivity alone prevent flares? I dunno if it's that easy. I'll stick with being positive, but I know it's gonna be lots of HARD WORK too.
Posted 12/30/2011 7:34 AM (GMT 0)
I don't believe food causes flares. It's never caused me one yet (23 years).

Positivity is definitely subjective. It won't prevent flares. I also think that when people say be positive, everything will work out it's a form of denial as well as saying.."I don't want to hear about it and can't help you to solve it anyway".


Being positive, to me, means to be realistic. Know what you are dealing with and having the options available to do so.

One can make common sense choices about food....anyone can do it...just have a plan and more than one option.

q
Posted 12/30/2011 1:19 PM (GMT 0)
I just want to put out there that in over 21 years with colitis, I cannot say with any certainty that food has had any causal effect on my colitis. To me flare and remission are completely random phenomena. For example, I have been on Asacol for about seven months now, and just in the last two weeks I've gone into what I consider full, complete remission (e.g. non-colitis looking or feeling stools). I have done absolutely nothing different with my diet or medication in that time frame.

I am all for making positive changes in what we eat for our overall health, and I do believe that some people feel better when they remove dairy and gluten from their diets. But in terms of disease causality, I don't really see a connection.

When I'm in remission I just enjoy the ride for as long as I can. I used to believe I was "all set" once remission hit, but this last flare knocked me for a loop and I know that another one could be back in a heartbeat. It's one day at a time the whole way.
Posted 12/30/2011 6:21 PM (GMT 0)
Q, I'm glad food/diet isn't a trigger for you, but that doesn't mean it can't be for anyone else...the CCFC has not ruled food/diet out and researchers know that what one persons trigger(s) is/are doesn't mean it's identical to anothers.

LarBar, that is awesome....I'd stay living at home with my parents if it put me into remission LOL! I hope it lasts a very long time for you!
Posted 12/30/2011 6:30 PM (GMT 0)
^^ well, there's a lot to be said about common sense eating as well. I don't consume what many on here do....so I'm not surprised that some have "food/drink" symptoms. I have food/drink symptoms, but never flare symptoms. Even with extreme distress and my stress eating...nadda. I also eat out a lot, but I do take my vitamins, fibre and probiotics. Maybe if I didn't I'd notice something more? Oh, and I take my meds....no surprise.

There's also a lot to be said for the fact that many don't understand flare symptoms either. All subjective and some say things are "good enough" not as bad as before, I can live with it..etc.

I'm not convinced as of yet.

Be well.
q
Posted 12/30/2011 6:37 PM (GMT 0)
I get exactly what you're saying Q, it's just when researchers have not been able to rule food/diet completely out as a possible trigger for IBD then I don't think anyone can, they have so much to learn about the disease yet. Heck I can eat beans and broccoli and I don't get all gassy or bloated from them, but others do...of course lifestyle may play a big role in how some things affect (or lack of) some people but not others.

Have a happy new year!
Posted 12/30/2011 7:08 PM (GMT 0)

quincy said...
I don't believe food causes flares. I don't believe food causes flares.

I hope your comment is with respect to your own experience. It is very clear there are 2 or 3 sub classes of UC victims. One subclass is not effected by foods the other knows they are effected. I can go into the kitchen right now and start eating the wrong stuff and be in a bloody flare within a week because of it. I can stay on my current path and avoid future flares. Pancoltis not IBS. 1.5 years solid remission from staying on the right food path and off all meds.
Posted 12/30/2011 8:40 PM (GMT 0)
aguywithuc,

totally agree with you...

so glad to hear you are med free.

i too am med free, aside from LDN

Posted 1/1/2012 12:57 AM (GMT 0)
aguywithuc...I mean I don't believe food causes flares...period.  If one's colon lining is fragile enough to have bleeding, then the inflammation is continual since there are varying degrees of inflammation happening/healing in incriments.   So, I could say it's flaring already.

It's possible that an extreme increase in bms could cause bleeding, but I'd think it would be because the inflammation has increased regarding a flare.

I don't believe that a flare happens for a day and is good the next.  Subjective, once again because many don't consider some symptoms a flare...it's just different from the most obvious.    

My doc did confirm, however, that some,with  visual inspection of the rectum/colon, may not have symptoms when obviously inflamed.... where for others they have symptoms when the inflammation is very, very mild. 

Bleeding happens with friability, so to me, the inflammation would be already in a more progressed state, but for some the symptoms could  be minor, others it would be more pronounced.  But I would think it depends on what the extent of location as well.

 

q

Posted 1/1/2012 3:34 AM (GMT 0)
"If one's colon lining is fragile enough to have bleeding, then the inflammation is continual since there are varying degrees of inflammation happening/healing in incriments. So, I could say it's flaring already."

You're spot on here Q, but for this to happen would mean what aguywithuc is suggesting, which is that an irritant such as food causes a flare. I agree on his part, theres a few different sub classes of why people have UC. What you put into your mouth holds logical truth as to what causes things to stir up down below, along with genetics and the environment being reasonable factors to this condition.

If you lower some of your medications, i'm sure you will see a difference in what specific foods you can tolerate and cant, as this is what happened to me.

-Great news for you larbar btw!

Post Edited (stereofidelic89) : 12/31/2011 8:47:02 PM (GMT-7)

Posted 1/1/2012 4:08 AM (GMT 0)
stereo...you probably don't know that I wasn't diagnosed until almost 3 years after my symptoms started, severe diarrhea, extreme weight loss and eventual extreme bleeding.    Obviously, the constipation or small/pencil/ribbon stools were considered an issue. 

No food changes or additions worsened or improved my symptoms, and I kept a food/symptoms diary for 2+ years. 

And why in the world would I ever want to decrease my meds?

q

Posted 1/1/2012 4:25 AM (GMT 0)
Because... considering the medications and dosage of each your on, allow you to eat freely. It's the same for me when I was on 40mg of prednisone, I could eat whatever I wanted without thinking twice about damaging my insides because a powerful drug was on full effect. If you were to taper/lower dosages consistently until establishing a point where the symptoms come back full force, then you would be able to see what foods you can tolerate. ... I would assume anyone would not want to live on medication, and the ultimate goal and driving force for this condition or any condition would be to get off medication without symptoms returning.

Like you, many of us weren't diagnosed right off the bat. Infact a few years ago I was in a stressful relationship and my stomach took a beating, I was going to the bathroom many times a day, lots of ribbon stools, diarrhea, no blood, and eventually went away as I reduced the stress and moved on with my life. But these last few months, stomach issues returned and until I saw blood or started going more than a few times a day, is when i got diagnosed. So this condition is definitely not 'always' out of ones control.
Posted 1/1/2012 8:43 AM (GMT 0)
I certainly trust my way more than yours. But I still don't believe that food causes flares.
q
Posted 1/1/2012 3:49 PM (GMT 0)
My thoughts, foolhardy? They're based on experience, actually. So... you're saying you expect your medications to carry you out peacefully for the rest of your life? That's a joke and a defeat.

For a colon to be inflamed and to continue being inflamed... there has to be some irritant that causes inflammation, it could be a number of factors, including food.
Posted 1/1/2012 8:21 PM (GMT 0)

quincy said...
aguywithuc...I mean I don't believe food causes flares...period. If one's colon lining is fragile enough to have bleeding, then the inflammation is continual since there are varying degrees of inflammation happening/healing in incriments. So, I could say it's flaring already.
It's possible that an extreme increase in bms could cause bleeding, but I'd think it would be because the inflammation has increased regarding a flare.

I don't believe that a flare happens for a day and is good the next. Subjective, once again because many don't consider some symptoms a flare...it's just different from the most obvious.

q

Lets talk about the whole subject since your bring up causes. UC has its unknown causes and before UC happened it made no difference what I ate period. Post-UC I am exactly like research demonstrates me to be. My floral signature is different than a Crohn's sufferer and different than someone that has neither crohns nor UC.

Now in the Post-UC portion of life my flora is not as strong as the next person. It will always be this way. I have had no bleeding in 1.5 years and I am very sensitive to initial signs that things are slipping from normal which for me is a bm once per day or every other occasionally. If it happens twice in one day I drop everything outside my trusted list of anti-inflammatory foods. I get back on track quickly. I would have to be dumb as a rock to do nothing until there was actually bleeding seen. "If one's colon lining is fragile enough to have bleeding". No idea what that statement means, cannot make sense of it. Again post UC my flora/lining etc is always going to be more fragile than it was Pre-UC.

The rest of your post also makes no sense to me. Numbers are not subjective. BM=1 or BM=0 is read but not interpreted. It is read as GOOD period. BM=2 is a call to action - it is read but not interpreted. Neither of these are a flare, a flare is a slipperly slope and if your wake up call is a full-on bloody flare then your too late to have a substantial chance of averting it. That would be very much like trying to abort takeoff when you are already wheels-up.

That being said I have had sudden bleeding and ate only highly anti-inflammatory salmon for 5 days and the bleeding stopped, the fever stopped and I was off the slipperly slope edging closer to safety every day after that. I look back on my eating behavior prior to that for guidance going forward.

I guess the other approach is to sit in the doctors office lobby and read the marketing material on the medications available. If they were nearly as reliable as the food method I would use them, but for me and my sub-group they are not reliable. I just worked 8 hours on my daughters birthday, 14 hours on my birthday, 14 on Christmas and 14 on New Years all in the last week...80 hours per week for 9 months. I never thought I would make it passed 90 days. I do not have time to be sick. I am watching them build my dream home down the street from all this overtime. Screw being sick. Screw trusting anyone else to manage this disease for me.
Posted 1/1/2012 8:35 PM (GMT 0)
aguywithuc,

I couldn't agree with you more:
Screw trusting anyone else to manage this disease for me.

You have to be your own best doctor.
Posted 1/1/2012 9:11 PM (GMT 0)
stereo...yes, I hope (not expect) my meds to carry me for the rest of my life...or if the 5ASA meds don't MY choice of options will be limited.

I would try the steroid enemas, but the oral choices would be severely lacking (at this point in time). Systemically....I won't do pred, the immuno meds or biologics, I'd rather have my colon out.


aguywithuc....that's how I think, however flawed from your perspective. If you're OK with your colon in a constant state of low inflammation (from my perspective), let it continue.

Your options for 5ASA meds are nil....I personally don't know what I'd do if I were in your situation, for I've never been there. If you do well with food choices, etc and want to micromanage everything, it seems it's the best with the results you're getting. It's also what you believe.

Now, to clarify my point. I agree that food has action in the digestive tract. I agree that not all food agrees with everyone. I agree that food will cause symptoms, but I don't believe it will cause flares. But, if one has allergies, intolerences, yeast/fungus/infection/, etc...that would be another issue. Not to say that two things cannot happen at the same time.

If food doesn't agree....don't eat it! If food or supplement intake causes distress, symtpoms of discomfort, etc...stop taking them. Just because something is touted to be good, it doesn't mean one wouldn't have some effects that are undesirable.

I don't eat/consume half the stuff most on here do. I'd be writhing in discomfort continually.

So, that's OK if you don't see my point. I obviously cannot express it to your level of approval.

q
Posted 1/2/2012 12:02 AM (GMT 0)
Great attitude aguywithuc! If i was a father I would do everything in my power just like you to not waste my time depending on medications to do the job, when you know what works best for you diet-wise. This condition requires a positive attitude to overcome all of the obstacles and baggage it has with it. Those who rest in the hands of medical doctors are doomed a life-long battle with emotional issues and physical barring that come with drugs, sorry to say. Some require it lifelong, but in my case, if I'm out of a flare and doing so-so, my first priority is to get off these meds and find methods that will help me naturally and effectively.
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