How Will This Disease Affect My Life In The Long-Term?

[tex]

Hi All,

Though microscopic colitis is considered by the medical community to be a "benign" disease (meaning that it does not normally lead to a fatal outcome), it is in fact, a very complex disease, with life-altering consequences. Controlling the symptoms of MC is by no means easy, but it is doable, with or without medical intervention. Living with the disease is sort of like trying to get all of our ducks in a row, at the same time, and keeping them in line, against all odds. If even one of them is out of line, we tend to have symptoms.

It’s interesting to note that based on the diverse backgrounds of all of the members of this discussion board, we do not appear to be simply a cross-section of the general population. Instead, the demographics suggest that we tend to be perfectionists, overachievers, and “control freaks”. What does this imply? To me it suggests a primary reason why stress appears to be a dominant factor in our development of the disease. And after we suddenly discover that we are no longer in complete control of every aspect of our life, we tend to panic and/or become depressed, as our stress level is even further amplified.

Virtually all of us seem to go through that stage, before we learn to shift down a gear or 2, and we begin to take life a day at a time (or an hour at a time, if necessary). We certainly don't just stop doing everything, but we find that life is a lot easier if we cut ourselves some slack, and we stop trying to live up to the high standards that we may have set for ourselves prior to MC. IOW, we learn to be underachievers, and the goal of perfection in everything we do drops off our radar. We learn to control the parts of our life that we can control, and we do our best to stop worrying about the parts over which we have no control. We learn to just ride out the storm, and look forward to the things that we will do after we get our life back, and we just go with the flow until we reach that point. And we will reach that point, if we are willing to take control of our treatment program, and do what we have to do to heal our inflammed digestive system.

So we strive to eschew perfection, and tip-toe around stress, because clearly, they are not our friends. And guess what? As our stress level goes way down, and our treatment program has time to work, our symptoms soon begin to fade.

MC changes the rules of the game. That doesn't mean that we have to let it completely control our life, but it does mean that we have to accept it, and respect it (something that is very difficult to do at first, because we despise the disease, and it's tough to respect something that we despise), and it means that we have to develop a plan for reorganizing our life around it. Developing a reorganization plan doesn't have to be done immediately of course, because it will come naturally, as we slowly get our health back and continue to heal.

But worrying about all that now, and worrying about what others are doing, and what we would like to be doing (but are unable to do, at the moment) is counterproductive, and can only increase our stress level. And more stress is the last thing we need, because stress is the culprit that struck the match that lit the fire that ignited the inflammation in our gut in the first place, and initiated the cascade of events that led up to our development of MC.

We have to focus on what we can do — not on what we cannot do, and likewise, we have to focus on the foods that we can still eat and enjoy, not on the foods that are now toxic to us, and are no longer a part of our lifestyle. Research shows that the genes that predispose to these food sensitivities were triggered when the genes that predispose to MC were triggered, and that’s why we have suddenly become sensitive to foods that we have been happily eating all of our life up to this point. So now we find ourselves in a very unfamiliar situation.

This is similar to moving to a different country (or even a different planet) — while we enjoyed our life in the past, that life is now out of reach, and we have to concentrate on establishing a new life under new rules. But the good news is that while we always tend to automatically dread change (especially when the change is against our will), surprisingly, many of us find that we eventually reach a point where we are much happier now, than we were in the past. And we appreciate life more now, than we did in the past. That may be difficult to understand now, but hopefully you'll see what I mean at some point in the future, after you get your life back.

As one of the world's foremost philosophers (Gabes) would say, we have to embrace the disease, because it is now an integral part of our life, for better or for worse, and the sooner we come to terms with it, the sooner we are able to get on with the task of getting our life back. Yes, there is definitely life after MC, and that life is as enjoyable as we choose to make it.

Tex

[Lovinlivin8]

I am back on the forum looking for more answers. That post is as encouraging as it can get. I am desperately trying to come to terms with this thing, while fighting the acceptance of it. I don't WANT to have LC and when I have good days, one here and there, I think I am ok and it will not be a life long issue. I also want to believe I can go on eating the way I could before my dx. Then the symptoms return. I have not gotten tested yet for gluten sensitivity as my Husb wants me to work through my GI dr and the insurance. I am hesitant to ask for those tests as the dr already told me that I should eat what ever I want. I am on Lialda and am nauseous every day until evening, then am hungry. I don't know if I should call dr and ask for testing, or if since he already did blood work for celiacs, (negative) he would not have another test, i.e. stool. Also, I see that the disease is still there, even though the Lialda is keeping the symptoms mostly at bay. I do not want to stay on a medicine for life, especially with it's side effects. I am ready to try the elimination diet, I think. AND get off this medicine perhaps. It makes me sick. Also, why in the world wouldn't the Dr's understand the gene triggering thing with MC and Gluten if it were the case? (I have been too trusting of Drs I Know)

So I continue to walk this road, one minute at a time, as we say.

Blessings
Tam

[tex]

Hi Tam,

I'm sorry that you're still having symptoms, but the fact that you've come back here shows that you are serious about getting your life back. And you can definitely get your life back if you are willing to make the necessary changes. Unfortunately, it sounds as though you will have to do it without much help from your doctor, but most of us here have had the same problem, so you have plenty of company. It's a crying shame that doctors don't get the training they need to properly treat this disease, but unfortunately the medical schools will probably continue to be slow to offer improved training, as long as they continue to mistakenly view MC as a rare disease. It's not rare — it's actually more common than celiac disease and Crohn's disease put together, but doctors don't realize that. Why? Because they don't normally read new research information about the disease (because they consider it to be a rare disease).

And unfortunately, most GI specialists don't use the EnteroLab tests (because again, they're so far behind the times that they insist that diet has nothing to do with MC).

You are correct that the Lialda can help to suppress the symptoms, as long as you take it, but if you should ever stop taking it, the symptoms will quickly return, as long as the foods that are causing the inflammation remain in your diet. You can certainly figure out your food sensitivities without the EnteroLab tests, if you want to do so. The first step would be to remove all gluten and dairy from your diet, and minimize the amount of fiber in your diet. You may also have to avoid all soy, and possibly eggs, but once you begin to see improvement, then it will be easier to tell what is causing you to react, so that you can continue to fine tune your diet as needed, until you are in remission.

Once you have been in remission long enough to allow a significant amount of healing, then you can begin to test certain foods back into your diet, to see if you actually react to them. A few of us are not sensitive to all dairy products forever (but we are all lactose-intolerant while our intestines are inflamed). But if you are like virtually all of us, you will always be sensitive to gluten, so there is little point in ever testing it again.

Welcome back, and I agree that we have to live life one day at a time, and sometimes one minute at a time, and we have to walk the path back to recovery one step at a time. But one step at a time will definitely get us to where we want to go. The most difficult step is always the first one.

Tex

[ldubois7]

Very well said, Tex.

I am a perfectionist and control freak, I admit it! I have had to slow down my life considerably. I have had to give up all the foods I've enjoyed my entire life. But, it's ok, MC forced me to slow down and let go of things I can't control or change....not entirely, I am a work in progress, but am so much better then I was 2 years ago!

It is a whole new mind set!

[Deb]

Great info Tex. Thanks!

[MBombardier]

Excellent, Tex. Very, very encouraging! As I walk through intense health challenges with my father and my brother (my only sibling) I am learning to divorce myself from the stress. Baby steps, but in the right direction. My goal this year is to live with joy in the midst of stress, not only with possibly losing all the rest of my birth family, but the daily stress of living life in an imperfect world and with MC.

[janet]

STRESS YES I AGREE WITH TEX, IT IS THE BIG OGRE OF TODAY.
GONE IS WORRY... REPLACED NOW BY STRESS.
I STRESS WHEN I CANT SEE A TOILET DOOR.
I STRESS THAT I AM GOING TO MAKE A NOISE IN THE TOILET.
OR SMELL...WORSE...
ITS SILLY OF ME I KNOW.
WISH I COULD CRAP AND NOT GIVE A DAM.

THERE THERE, I FEEL A BIT BETTER..MARIE

[Pat]

hmmm...I think you are right on target, Tex. What do you think about hypnosis in addition to diet? Anyone tried that?

Pat

[tex]

Hi Pat,

I can't recall anyone mentioning that they had tried hypnosis as part of a treatment program. But thinking about it, I would think that since hypnosis can be used for stress management, it might be an option with possibilities.

Tex

[Lovinlivin8]

As you may already suspect, I have been SLOW to accept that I may have to give up gluten, dairy and who knows what else in order to gain some semblance of health back. I have now had symptoms since January. I appreciate the drugs that the Dr. has had me on, only in that they have kept the worst symptoms at bay, mostly. But it's still there. I just finished reading Dr. Dahlman's book "Why Doesn't My Dr. Know This". Again, gluten, dairy, fructose may indeed be the thing instigating the inflammation. Which brings me back to your forum. I have tried a few meals gluten free, and dairy free. I have only done just that, only to go right back to it the next meal. It is what I know. So how does one begin? I think mainly simply. My DH is really not wanting me to spend money on a lab test that the Medical Community (i.e. Insurance) doesn't back. And I am gullible enough to believe what I read, in my desperation for an answer. I have been known to fall for the snake oil. So please point me in the right direction. Where do I start??

Thanks so much. I am ready to do this!!

[Gabes-Apg]

you dont have to do the poop entorlab test, the alternative to identifying major triggers is the elimination diet, albeit this will only work if you stick strictly to the protocol, and are willing to give it the time it will take (2-6 months)
Sadly there is no quick cheap way, and there is no fixed protocol that works for all, we are all different. The key to success is figuring what works for you, and what is sustainable for your budget/lifestyle/family/work etc

Eating gluten/dairy free is not hard, it just takes a bit of pre-planning and organisation
buying fresh vegetables and proteins, eating well cooked, low fibre, low inflammation meals. (bland, no spices)
low fibre means no salads, minimal raw fruit, (most can handle 1/2-1 banana).
there are loads of receipe ideas in the 'Dee's Kitchen' part of the forum. Quite a few subscribe to online receipe sites.
quite a few here do modified paleo eating plan. Once you know your main triggers you can adjust the receipes to suit


for the elimination diet protocol, figure out your safest basic meal. For me, it was rice and chicken. whatever your safest basic meal maybe, when there is minimal symptoms, each week try an additional ingredient, eg carrot, have small serve, (enough for a toddler) wait 24 hours, have another small serve, wait 24 hours and then 3rd day have another small serve.

the reason that you do it for 3 days, is that after having D and inflammation in the gut any new food item will cause a reaction (like when toddlers go from milk to solids) the first poop will stink, be loose. It is after the 3rd day that you will be able to ascertain if it is a safe food item, or one that will cause issues. work through the vegetables, proteins etc in this manner.

All going well, and once there has been good healing you can try salads, nuts, fruits etc. For some this can take 6 months for others 2 years, and there are a few that may never get to add them back in.
there are also good protein powders, that once you know your main intolerance's you can source the protein powder and this makes a easy affordable meal on the go.

It can be a bit overwhelming at first, take your time, read the posts, read the posts in the success stories area and this will give you (and your husband) an indication how people 'got their life back'

MC doesnt go away, it is a sensitive soul, and needs a bit of nurturing. If you try to ignore it, it can kick a mighty punch!
Long term wellness will be impacted if you dont embrace the changes that your body needs you to do.

hope this helps

[MBombardier]

MC doesn't go away, it is a sensitive soul, and needs a bit of nurturing. If you try to ignore it, it can kick a mighty punch!

Truth. But it may slumber sweetly and never wake up. That's how we get our lives back--knowing what not to do so we don't disturb the sleeping giant, lol.

[lisaw]

I know it seems overwhelming at first, but you have nothing to lose (except some foods), and the propsect of improvement in your health, to gain. Try eliminating these for awhile, and see how you feel. It is hard to get over the idea that your doctor tells you that food does not matter, but this board tells you otherwise. There are many people here with lengthy experience with MC, and many success stories, and this is a good resource for info. Healing is a slow process, with good days and bad.

[humbird753]

Very well written, Tex.

Just last night, I re-opened your book, and am reading the chapter on "Stress." Every time I re-read areas of your book that I initially did not understand, they are becoming more clear to me. I never thought I would be able to wrap my brain around some of this, but in time I am sure I will!

As always, thank you.

Paula

[medic123]

Hi, I am new to this forum. I was dx with MC in April 2014. I am doing better with Endocort, but still having issues. My problem is that I can no longer tolerate heat. This time last year I was a beach bum, but now I can't last 20 minutes outside. Is this a normal problem or is it all in my head. Vicki