Are most people here in remissions?

thedell19 · Post by **thedell19** » Sun Mar 05, 2006 5:11 pm

What amazes me about this forum is that most of the topics and posts are not really related to symptoms and this disease. It seems that most people are doing very well through diet and I hope that I can obtain remission through diet as well. It has been a long year struggling through this but I am in good spirits that diet may be my salvation.

Are most people here really in remission or is this just a misconception?

starfire · Post by **starfire** » Sun Mar 05, 2006 6:18 pm

I cannot say I'm in remission. I'm not having D because I'm on Asacol.
I think if I stopped, the D would return.

I am not doing so good staying on my diet so I don't dare go off the Asacol.

Lots here ARE in control/remission due to diet so I think you will hear from quite a few as they long on.

Good Luck..........

Shirley

m · Post by m » Sun Mar 05, 2006 6:34 pm

thedell19 (celia?),
Hi, "m" (melissa) here. I don't know exactly what remission is but if you mean the symptoms of MC are in control with diet alone, then yes I guess I'm one of the lucky ones and I'm in remission. However, I do have flare ups about every 4-6 months and if I go off a gluten, corn, dairy-free diet, I have terrible stomach problems so stick to the diet strickly. I'm also suppose to avoid eggs, yeast and soy but I'v found I can have small amounts of them every so often without major consequences. I've tried the Pepto treatment, then Asacol with no results. Last summer when I had a very bad flare up I went on Entocort and had very good results. I would venture to guess that if I had a colonoscopy with biopsy right now, I'd still show active MC.
The diet really was the ticket for me in control symptoms.
m

Post by **tex** » Sun Mar 05, 2006 10:53 pm

Shirley,

Whether or not you are in remission depends on your definition of remission. Since there is no such thing as a permanent "cure" for MC, (at least the vast majority of patients will never be totally "cured"), how you define remisson, depends on your viewpoint.

Some feel that remission requires a "clean" bill of heath from a set of biopsies taken during a colonoscopy, while others feel that the absence of symptoms indicates remission. My personal opinion is that if all of the symptoms of MC are always absent, for an extended period of time, then that constitutes evidence of remission, for all practical purposes, no matter how that condition is achieved.

I'm sure there are some who will dispute that, based on the fact that if you terminate the treatment, (the meds), the symptoms will return, for some, in a matter of days, for others in a matter of weeks, and for others, in a matter of months. To that viewpoint I would respond that those who control their symptoms by diet, have the same problem. If they discontinue the treatment, (diet restrictions), the symptoms wiill eventually return.

Tex

P S Andrew, you asked this same question in the Food Intolerance/Andrew thread, so I posted my thoughts there. I'll repeat them here for convenience:

"You're right about the high success rate here. Many of our members no longer stop by, because they have their symptoms under control, and they are so busy leading a normal life again, that they rarely visit us any more.

Not everyone chooses to go the diet route, though. Some have good success with maintenance doses of meds, and some combine meds with varying degrees of diet modifications. Everyone figures out what works best for their particular situation. "

Liz · Post by **Liz** » Mon Mar 06, 2006 12:21 am

Hi Andrew. I agree with what Wayne has said. Many of us take control of our symptoms for varying periods with the aid of diet or drugs. Back in 2001 when I was first diagnosed with CC I was on Prednisone for several months which seemed to quieten things down for a while & then when another bad flare up occurred was put on it again for a shorter period. Have recently been taking Entocort but am presently off it. At all times have to avoid any known triggers. I take Colofac 3 times daily & Imodium & / or Gastrostop when necessary. Am able to lead a reasonably normal life with some minor restrictions presently. Still get the bad days at times but of late my main problems seem to occur at night. We really have to take each day as it comes & deal with the flareups as best we can. Have had a minor flare in last couple of days but it seems to have settled down without recourse to any of the cortisone drugs.

Liz

Ps

I think that most of us have learned to live our lives around our problems. The precautions that we must take & the adjustments we make to our daily customs become part of us & we learn to cope with what we have.

Jean · Post by **Jean** » Mon Mar 06, 2006 7:37 am

Andrew,

I would consider myself in complete remission using diet alone. After I started the diet, the D was gone in less than a month, but it took a good year for all of my symptoms to subside, fatigue being the last to go.

Of course, if I accidentally ingest one of my intolerances (gluten, corn, soy, dairy) I have two very bad days. But at exactly 48 hours I feel fine again.

Love, Jean

Polly · Post by **Polly** » Mon Mar 06, 2006 7:42 am

Hi Terps!

Good observation! Yes, one of the important lessons documented here is that almost eveyone does gain control of their MC. It WILL happen for you, too.........I am positive.

As noted above, remission usually means the absence of symptoms. And it does appear that the symptoms of MC recur if one stops the medications or diet. But so what, if it IS possible to get rid of that yukky diarrhea and feel tip-top indefinitely, right?

Like you, I have decided to use diet. As a result I have been in remission now for almost 5 years. The only exceptions have been brief times when I knowingly ate things I shouldn't have. I have found that the easiest way to eat is the paleo diet - much easier than trying to read all of those labels or learn all the ins and outs of "substitute" grains, etc.

For a while, when I first joined this website more than 4 years ago and we had just discovered diet as a treatment for MC, I kept a record of the first 60 or so folks who tried diet. And guess what?! All but one of those original 60 got better! (And that person only eliminated gluten and probably had multiple intolerances).

One of the problems is that a diet trial must last for months sometimes - especially in the case of multiple intolerances. For me, it took almost 9 months before the diarrhea left - all during that time I was discovering multiple intolerances and eliminating them. In retrospect I wish I had started with the paleo diet - I probably would have gone into remission within weeks (or even days) since none of my triggers are allowed on that diet. The best books on this diet, BTW, are Cordain's "Paleo Diet" and Audette's "Neanderthin". They make for fascinating reading, actually.

Where are you going on your honeymoon? Looking forward to learning of your results with Dr. Fine's tests.

Love,

Polly

annie oakley · Post by **annie oakley** » Mon Mar 06, 2006 6:44 pm

I guess I am in remission with one asacol a day and diet. I have occassional flares, but I feel I am in remission. I am alot more careful what I eat these days. More water less soda's and surgar, Love Oma

harvest_table · Post by **harvest_table** » Tue Mar 07, 2006 2:57 pm

Andrew,

I'm controling my symptoms with my diet. I have to avoid gluten, dairy and soy. I don't seem to have a problem with corn. I've also gave up coffee (switched to teas) sugar and most processed foods. I've been dieting about 19 months and have felt as though I really have a handle on it the last year. If I ingest even a small amount of these triggers, I have reactions ranging from D, to muscle and joint pain so perhaps it's not remission but I like to consider it so.

It's so hard to believe it's been almost 2 years since my CC DX! This great group of folks have helped me so much with their knowledge and support.

Keep the faith!

Joanna

thedell19 · Post by **thedell19** » Tue Mar 07, 2006 5:58 pm

Well that is nice that all of you are in "remission" of I guess a better word would be lacking symptoms...

I hope I get my tests back soon, so I can go on a diet and lack symptoms

would be nice

Peggy · Post by **Peggy** » Wed Mar 08, 2006 12:08 pm

Currently I "control" my colitis with short-term small dosage Entocort when needed.

Peggy

grannyh · Post by **grannyh** » Sat Mar 11, 2006 7:01 am

I have been on Entocort EC since last November..this is the longest period of "remission" for me.
grannyh

barbaranoela · Post by **barbaranoela** » Sat Mar 11, 2006 9:59 am

and I will add----Yes, I consider myself in *remission*

Do watch my diet(most of the times) cus I know what to eat and I only eat what I like---if that makes sense--

At times I will tempt faith --good/not so good --results

But U see, I eat to live----food dont mean a thing to me---I would rather be the cookie--fudgy chocolate--ice-cream and PEANUT BUTTER CUPS(my favorite) eater--

My problem is----what numbers my LIPIDS get too if I DONT watch my diet--and also told by GP----my body builds up some on their own!!

Dont give up---
:bigbighug:

Barbara

PS. my enemy (as for most I think) is STRESS!!!!

JJ · Post by JJ » Sat Mar 11, 2006 8:10 pm

Hi....I am currently taking only 3 Entocort pills a week and things are slowly improving...the doc tried to cut me back to 2, and that was a disaster! I don't consider myself to be in remission, only lucky that the Entocort works so well to control the symptoms. I don't think I have had problems as bad as some of the others...I never have had pain or aches...just D! I sometimes still have problems....but can't quite put my finger on what my trigger foods are. TTFN...JJ

Lucy · Post by **Lucy** » Sun Mar 12, 2006 1:02 am

I read this the other day, and thought I'd responded, but guess not.

I sort of look at it this way -- I will always be immunologically sensitive to certain foods as determined by genetics, and whatever happened initially, to tick them off...bigtime.

Since going off of these foods, I've not had any significant symptoms, even with an accidental ingestion of a very minute amount of something that was unintentional.
However, since I am very observant of my stools now, as well as how I feel, I will notice if my stools contain any brown water, etc., and that's when I know to track down whatever was in the food I ate 24 hrs before.
Most normal people probably wouldn't even notice these symptoms unless they didn't produce a formed stool with the liquid.

In terms of how I think I would fair on a repeat biopsy, I believe that would all depend on how resent an exposure had been. With the minute amounts of antigen I get after months of not having anything but large, formed stools without brown water accompanying them, it wouldn't surprise me if they all came back negative.
If it followed directly on the heals of an expose, then I'd expect at least some of the sites to come back positive..same with exposures that had been just not far enough ago to be completetly healed.

Another thing that I have learned is that I tolerate LOTS of roughage now by itself, but if I try to overeat on sweet potato, salad, and a small steak all in one sitting, the combination is almost like an immune reaction in terms of the little bit of water, but difference is that I don't feel bad systemically. (I just did this because I wasn't in a position to take half of it home, so I didn't want to waste any more of it than I had to.) At any rate, I do fine if I don't overeat. I can eat the whole salad with a half of a sweet potato, and half a salad, and that's very filling for me, so now, I try to arrange to take the rest home before going anywhere else if it's during the lunchtime.

Evening meals there get bigger after 4 PM, so it works very nicely for my mom and I to split everything, but we don't usually go there after 4 PM.

Took me a while to figure out how much I should eat there, by the way. Remember, sweet potatoes have LOTS of fiber, so this may be a throwback to some problems in functionality caused by the old M.C.

In other words, it may take you a while to figure out how much you need in terms of quantity per feeding is optimum. I think that many people here would be astonished at how much rabbit food I could put away in one setting. I think I've actually become addicted to that!

OK, so hoping you will "get there" pronto.
Good guestion, by the way!

Yours, Luce