Just need to know?

Swwetp · Post by **Swwetp** » Mon Jun 04, 2012 4:51 pm

I was sick for about 4 months before I went to see a doctor or told anyone I was sick and afterwards (lots of visits and test) I was told I have lymphocytic colitis. I have spent alot of time on computer just trying to understand what is happening, but being sick all the time is pulling it's toll on me. Mornings are really tuff, food is something I am almost scared of ( still learning what hurts me and what doesn't ). My life has been turned upside down. I'm so tired all the time, my joints hurt so bad at times all I can do is cry, never know what is gas or sometimes else, the smells of alot food make me sick, sometimes I feel like I eat more pills then food and I have went from 175lbs to 142lbs, and so much more.
I just found out what was wrong with me 5 months ago. I have cut out all beef, fatty meats, alot of veggies and fruits, diary, sugars, wheat and I still am getting sick. I feel like I am losing my mind and just need to here how other people are dealing with this. How are other people in your lives dealing with this?

Deanna in CO · Post by **Deanna in CO** » Mon Jun 04, 2012 5:03 pm

Oh, my friend, you are in the right place! Pretty much all of us here have been where you are. There is plenty of help on this forum, and as you can see our tagline is, "You CAN get your life back." There's a lot to say, but the best thing you can do is start reading. Skim everything you can, beginning with the introductory information, and then as you begin to grasp what we're talking about, chime in with questions. The answers aren't easy, but they are available, and they do work, given time and persistence.

Hugs,

Deanna

Post by **tex** » Mon Jun 04, 2012 6:46 pm

Hi Swwetp,

Welcome to the board. Yes, as Deanna mentioned, most of us have been through the same misery that you are dealing with, and the frustration of receiving very little support from our doctors. It takes dedication, careful attention to diet, and time, but you can control your symptoms, even if your doctors don't have the foggiest idea how to properly treat the disease. We will help you in any way we can.

Again, welcome aboard, and please feel free to ask anything.

Tex

carolm · Post by **carolm** » Mon Jun 04, 2012 9:24 pm

Hi Swwept,
You will probably want to read some of the other posts of persons newly diagnosed and see the feedback they received.
Also, you may want to take a stronger look at gluten. Wheat is not the only source- there's barley and spelt too. It could be that in spite of your efforts you may still be getting 'gluttened' inadvertantly. In addition to the things you eliminated, I also had to eliminate caffeine and acidic foods. I took the tests from Enterolab that you'll see described on this site and found soy was huge offender for me and I did feel better after I eliminated soy and soy additives from my diet. In fact I have dropped all legumes in light of the reaction to soy, just in case I was reacting to other bean or legumes. I'll test them at a much later time.
Mornings are also my worst time and I tend to be nauseated, but I'm not sure why. Sometimes I believe it has to do with inflammation, sometimes a reaction to something I ate, sometimes the results of bowel contractions and sometimes excess stomach acid. It still shows up unpredictably. When I figure it out I'll be shouting from the rooftops.
What got me back on my feet was 4 months on Entocort. Not only did it arrest the inflammation but it bought me time to figure out what my diet needed to be, so that as I titrated off Entocort I was already eating the foods I was least reactive to.
From reading your post I think you are off to a good start-- maybe it's time for some fine tuning.

I'm also fed up with the nausea, the fatigue, and the lack of stamina even when I feel good enough to go do something. This is obviously going to be a long process for me. It is very distressing but you have come to the right place for help.

take care,
Carol

Swwetp · Post by **Swwetp** » Tue Jun 05, 2012 10:24 am

Thank you all for your replies. I find myself at a point where my good days are equal to as many as bad days (at one point, more bad days then good.). When I am not sleeping, I try to do all my normal day to day stuff. I guess the things that kills me the most is the fact, nobody around me gets it. My husband gets very uncomfortable if I talk at all about it, my doctor seems clueless, and after reading as much as I have over the last few months. Well, lets just say I am sooo greatful to read other peoples stories and know that other are having a hard time with this. It is always nice to know, one is not alone.

draperygoddess · Post by **draperygoddess** » Tue Jun 05, 2012 6:35 pm

Hi there, and welcome to the forum!

People who haven't dealt with this disease, or something like it, really can't understand how it affects every area of your life. Well-meaning friends and family just don't "get it." But here, everybody does! There is absolutely NOTHING you can't discuss here, and nothing that will shock us! Feel free to vent--we've all been there.

Figuring out your intolerances is tricky and takes some time. Some of us have found that stripping our diet down to just a few foods that we KNOW we can tolerate helps. Then, once we're doing a bit better, we can test different foods, one at a time, and see how it goes. I do agree with Carol that gluten is harder than you'd think to avoid. It's in everything! There is a lot of information on this forum about hidden sources of gluten. For nearly all of us, gluten is the main culprit, followed by dairy and soy.

The good news is, this CAN be done--we've done it! You can figure this out, and everyone here will be happy to help you. It will take some time, but one day you'll discover that the good days are outnumbering the bad ones. Hang in there!

Leah · Post by **Leah** » Tue Jun 05, 2012 9:12 pm

Welcome! I was dx with MC 4-5 months ago and have improved soooo much since I started really listening to people on this forum. I also went on Entocort ( Budesonide) which helped almost immediately. Like Carol, it gave me time to clean up my diet so I could lower the dose fairly quickly. i had to smile when you said that you have eliminated beef .... because when i first got this, i thought meat was bad. Boy was i wrong. Everyone is different, but as you will read, many of us eat a very high protein diet. The proteins help with the healing. You will also see that the "big four" offenders are gluten, soy, dairy, and eggs. raw fruits and veggies are usually out while you are healing and for me, tomato products and peppers are also bad. I have been able to add some things back in slowly.

All I can say, is read as much as you can here.
Keep us posted

Leah

humbird753 · Post by **humbird753** » Wed Jun 06, 2012 10:54 am

Welcome Swwept,

We all understand how discouraged you have felt. We have all been there. Leah's post sums up what foods we (with MC) need to eliminate from our diet in order to begin the process of finding out our own individual food sensitivities as well as healing. In time we are able to slowly add other foods back into our diet.

I was diagnosed with lymphocytic colitis (LC) in June of 2010. I didn't find this forum until November of 2011. My PCP and GI specialist never mentioned anything about changing my diet. So... the education I got here has helped me a lot. Although I have not reached remission, I am regaining my strength, stamina, and am not "chained" to the bathroom like I was. I AM getting my life back, and so can you.

Hugs,
Paula

Karen1129 · Post by **Karen1129** » Wed Jun 06, 2012 12:05 pm

Swwetp wrote:Thank you all for your replies. I find myself at a point where my good days are equal to as many as bad days (at one point, more bad days then good.). When I am not sleeping, I try to do all my normal day to day stuff. I guess the things that kills me the most is the fact, nobody around me gets it. My husband gets very uncomfortable if I talk at all about it, my doctor seems clueless, and after reading as much as I have over the last few months. Well, lets just say I am sooo greatful to read other peoples stories and know that other are having a hard time with this. It is always nice to know, one is not alone.

I just joined this forum recently myself. I feel your pain.
You are right, family, friends, and hell, even my doctors don't "get it".
They seem to think you are talking about a few loose stools a day.
ummmm..... no. I only wish.

I find myself , well, just keeping to myself. It is so helpful to find this place where
someone "understands".

I have been on the gf/df/sf diet for a week now. I look forward to improvement.

Lesley · Post by **Lesley** » Wed Jun 06, 2012 7:55 pm

Karen,
eggs can also do it you know. If you don't improve enough after going SF/DF/GF you should give eggs, and maybe corn a try.

Swwetp: I have been at this for a long time, and I have many bad days. I am exhausted today for no apparent reason. It's just this disease. some people get things turned around very quickly, but for others of us it takes longer. and a LOT of patience.

When you read you will see that there is NO discomfort in talking about poop, farts, all types of stool, poking around in the toilet to see the pieces or the consistency, and so on and so forth.

Don't hesitate to ask ANY question, and to vent whenever you need to.