1st time on the board

explosive · Post by **explosive** » Mon Jan 10, 2011 6:57 pm

Hi, this is my first post to the board. I have learned alot just by reading all the other posts and appreciate that this outlet is here. There is so little out there about Lymphocytic colitis. I was diagnosed with LC in April 2010. My d has been constant for the last 20 years but it took me this long to get to the doctors who diagnosed me. My family doctor and family really thought I was just exagerating and told me to take an immodium (which did not help). I have been on Entocort for 28 days and towards the end of the round I was down to 5-6 times of d a day but as soon as the Entocort was out of my system it was right back. I am up to 20-25 times a day. It does not seem to matter what I eat, all things go straight through. I have tried gluten free and I still have extreme d. My GI doctor just wants to treat the d and get it under control. This is the first time I had seen this doctor as mine left without telling me. He seemed concerned about me and in a discussion outside my exam room door he and 2 other doctors discussed that they had to try to get me some quality of life back and said they had only seen one other case as severe as mine. I am sure others here have it as bad. I seem to have so many other issues (autoimmune I am sure) but cannot get any doctors to diagnose them. My family doctor says he knows nothing about my disease and thinks alot of my other symptoms are results of panic attacks. I know the difference in panic attacks and not being able to get out of the bed from fatique or pain. My symptoms are as follows:

diahreah, pain and stiffness in my joints and muscles, very strong metal taste in my mouth, my tongue stays white or yellow (maybe yeast), stomach pain, scarred lungs (showed up on my chest ct and I have never smoked), low oxygen level, cold hands and feet, vertigo, clumsiness, memory loss and alterd mental status. I could also sleep 18 hours a day and still be tired. When I am not trying to go to work I usually do sleep 10-14 hours before I wake up. One doctor thought possilbe seizure activity but when MRI showed up negitive he said maybe not even though he said if the seizures were mild enough they may not show yet.

I am sure there is so much more but really what I would like to know is how can I get doctors to listen to my other symptoms and take them seriously. Sadly I have tried staying away from certain foods (different ones at a time to rule out intolerance) and nothing helps. I almost died in mid April when my oxygen level bottomed out to 23% after a hysterectomy and it has not been right since. My potassium and iron levels also stay dangerously low.

Please help if you know anything else I should be doing or what I should be doing to get doctors to listen and diagnose the autoimmune diseases.

Thanks
Sharon

JLH · Post by **JLH** » Mon Jan 10, 2011 7:08 pm

I LOVE your screen name.

Start reading and reading here on the PP site and also at www.enterolab.com Start with the section for newbies.

I'm sure Tex will be along soon to help with you medical questions.

I think you will eventually find like most of us (but not all) that you need to eliminate gluten from your diet. Dairy and soy come next.

You probably will NOT have much help from your doctors. They will say diet has nothing to do with it. WE KNOW OTHERWISE. This site is the best in the world for information and support.

grannyh · Post by **grannyh** » Mon Jan 10, 2011 7:10 pm

As I said on another thread.. my GI doc says that more and more doctors are using entocort for MC. The "standard regime" is three weeks at 3 pills a day and one extra week to taper off. He said that works for many people but he has no problem with keeping people on entocort for as long as it is needed. It took me a couple of years to get to 2 pills a day and a couple more years to get to one a day.

I started a spontaneous remission at the end of October and have only had one pill since.. no telling how long the remission will last.. but I am tickled with it.
grannyh

Joefnh · Post by **Joefnh** » Mon Jan 10, 2011 7:11 pm

Hi Sharon and sounds very familiar. I was Dxd with CC and Crohns in April as well and certainly understand your frustrations.

First for the diet to work it takes many months and its not just gluten for many its also soy and there's a good chance you might be reacting to dairy as well. I know it sounds like a lot but with some knowledge and a bit of patience you can get your life back.

For the Entocort 28 days is just not enough time. Many here take it for a year or more to get things settled down. This is a tough disease but can be dealt with. It sounds like your doctor is not giving you enough time on Entocort. I was on it from April through November and that was not long enough. I had to start on Imuran for the Crohns part of my diagnosis.

I would start by talking to your doctor to let you take the Entocort for several months at least. Along with that there is testing available form a company called Enterolab https://www.enterolab.com/ they perform test that will help you figure what foods are causing you problems.

Welcome to the group again Sharon

--Joe

explosive · Post by **explosive** » Mon Jan 10, 2011 7:13 pm

Hi Joan,

Thanks for the colorful welcome! I love it! I think that after reading here I do need to be more diligent about the gluten. I avoid the obvious but I am going to have to educate myself on the "hidden gluten". I would try anything.

Thanks

explosive · Post by **explosive** » Mon Jan 10, 2011 7:18 pm

Thanks grannyh and Joe for the info. My doctor does want me to do another 6 weeks on the Entocort and I will start that as soon as the meds get here. He also wants me to take 2 immodium a day and calciam with vitamin D. He also said to increase my fiber intake but that seems odd to me.

thanks again for making me feel welcome. It is nice to know I am not alone.

mbeezie · Post by **mbeezie** » Mon Jan 10, 2011 7:32 pm

Welcome Sharon,

So glad you finally found us. You are in the right place to get some answers. Unfortunatley, doctors don't fully understand MC very well and therefore often dismiss things we tell them. If you use the Search option on this site you can pretty much find the answer to any of your questions.

We strongly recommend diet to help with symptoms. The vast majority of us are gluten free, as well as dairy and soy free. Some of us, including me, have multiple intolerances. While you may have tried gluten free in the past without success, I encourage you to do it again, and this time eliminate a few other things as well. There are some tests you can do to determine your food triggers, if you are interested. You have been sick for a long time and healing may take a while, so don't give up on diet too quickly. Some of us have been able to achieve remission with diet alone, but many have had to use Entocort as well.

He also said to increase my fiber intake but that seems odd to me.

Fiber is very irritiating to the GI tract and most of us have had to really limit fiber initially.

I have had metallic taste at times too. For me it is related to food and drug sensitivities. I am curious if when your doctor took biopsies to diagnose your MC if he also tested for mast cells. The reason I ask is because of your lung involvement. Some of us here (like me) have a type of colitis related to mast cells, and people with mast cell problems can also have lung issues (the lungs, like the GI tract, are loaded with mast cells).

If your doctors haven't already done so, I would strongly suggest getting your vitamin D level checked. I'll bet anything you are deficient and you need to know your level to know how aggressively to supplement..

Take care and welcome aboard.

Mary Beth

Post by **tex** » Mon Jan 10, 2011 7:32 pm

Hi Sharon,

Welcome to our internet family. I agree that food sensitivities are almost surely behind all of your symptoms, (including all the aches and pains, and all the neurological issues - those are caused by sensitivity to gluten). Mary Beth is quite correct - what most people forget to mention, is that in order for a diet to work, you have to eliminate all of the foods that you are sensitive to, at the same time. Eliminating them one at a time, usually provides little benefit, because you are almost surely sensitive to more than one of them. As was already mentioned, most of us are sensitive to gluten and dairy products, and about half of us are sensitive to soy. Some members are also sensitive to foods such as yeast, eggs, corn, carrageenan, etc.

Since you show some of the symptoms of leaky gut syndrome, (body aches and pains - arthritis-like symptoms), you are probably also sensitive to yeast, (it sounds as though you probably have a yeast overgrowth, since you seem to have thrush).

We will try to help in any way we can. I would say that we are 100% behind you, but with a username like "explosive", let's just say that we're 100% with you.

I agree, that's a great username for someone with this disease. FWIW, I had most of the symptoms that you have, and I was able to get my life back by diet changes alone. The fastest way to control all the symptoms, though, is with a combination of diet, and Entocort, since it takes quite a while for the diet to work, for most of us.

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

Tex (Wayne)

P. S. The extra vitamin D is a great idea, but fiber is definitely contraindicated for LC. The less fiber in your diet, the better off you are, since fiber will keep your gut inflammed, and that's the problem in the first place.

grannyh · Post by **grannyh** » Mon Jan 10, 2011 7:34 pm

Increasing fiber was a disaster suggestion by many doctors I saw in the beginning. We want our innards to quiet down and relax.. we don't want to irritate the dickens out of them with fiber:)

The assumption seems to be that the fiber will sop up the extra liquid... well many here can attest to the fact that it does not...

My family doc gave me a prescription for lomotil in the beginning before diagnosis.. and I took that for a long time before entocort was available. Made me really tired. Took one in the morning after a few mad dashes to the bathroom and if the mad dashes didn't slow down.. I took another pill.. that usually bought me a few hours out of the house and slowed the D down for the rest of the day.
grannyh

Joefnh · Post by **Joefnh** » Mon Jan 10, 2011 7:39 pm

Sharon I forgot to mention early on a medicine that helped tremendously with the 'explosive' D was Questran. Questran is a powder you mix with juice and is meant for helping with the absorption of cholesterol. The side effect is constipation, which for us really does help slow the D down. If interested ask you doc for some samples. It can be used with Entocort (as long as the 2 are taken 4 hours apart)

--Joe

grannyh · Post by **grannyh** » Mon Jan 10, 2011 7:44 pm

Joe and others had great success with Questran.. it landed me in the hospital bloated like a toad, massive explosive D and barfing at the same time... this MC is a strange illness and no one thing works for everyone. We each work our way through the obstacles of our recovery.. in the way that helps us.. and there are lots of suggestions on this site for you to try.
grannyh

Celie · Post by **Celie** » Mon Jan 10, 2011 7:45 pm

Welcome Sharon,
I am glad you have found a doctor who wants to make you feel better. That is a big step. Perhaps that doc will help you find one to work with you on all your issues.

I am also glad you are here. This group of people has been so much help to me! I am sure you will find the same level of support. Good luck with all your issues.

Celie

explosive · Post by **explosive** » Mon Jan 10, 2011 7:45 pm

Mary Beth,

I do not know but do not think they tested for mast cells. I will ask at my next apointment. Thanks for the info and the welcome. I already feel very at home here.

Sharon :cool:

explosive · Post by **explosive** » Mon Jan 10, 2011 7:47 pm

Hi Tex,

I love you already. You crack me up. I don't think I have smiled this much in months. I even laughed out loud and that is rare for me these days. I will try the diet restrictions. I am so glad I finally got up the nerve to post instead of just lurking all this time.

Sharon

Post by **tex** » Mon Jan 10, 2011 8:33 pm

Sharon,

I'm glad I was able to help you laugh. When this disease is at it's worst, sometimes we have to laugh, to keep from crying.

Your GI doc can request that your pathologist reexamine your existing biopsy samples, looking for an elevated mast cell count, by applying a special stain to the tissue in the slides, that will make the mast cells visible. Most pathologists don't keep it on hand, (since mast cell involvement in GI issues is a relatively new concept), so they have to order the stain, but there is growing recognition that mast cells are a factor in many of the most resistant cases of MC.

Mary Beth,

Great catch! I knew that Sharon's lung markers had a special significance, but I couldn't remember the connection. I'll bet you're right. You've got a good eye for detail, and a great memory.

Tex