Newby to MC

[patsAZ]

Hello. I am new here found you on the internet. My
GI just diagnosed me as MC. I spent a week in the hospital for that diagnosis. Later I spent a week in ICU with C Diff.

Am home now and trying to learn all I can about my "little" problem.

May I ask a couple of questions?
First off does the loud grumbling sound I get mean that I have eaten something I shouldn't? Or is it just digestion noises that are louder now?

Are there any suggestions to have a peaceful night rather than having to go hurredly (sp) to the bathroom during the middle of it?

I have read many of the posts here and am trying to assimilate it all. There is sure a lot to learn. And my GI was not very helpful. I am on Asacol 9 tablets a day and Imodium has been suggested. What do I need to do? Help?

Thanks for any info.

[Mars]

PatAZ to our family. Unfortunately, the reason you came looking is because you have MC but this is the place to be if you do!!!

Please browse the site to get answers to your questions. There is a "Frequently asked questions" room and an explanation regarding the different types of MC room. The "Links" room will take you to a variety of different sites as you have more questions.

You will find that this disease has many different symptoms and many different ways to deal with and treat them. We are all different and react to treatment differently.

Many have found relief from symptoms with diet alone, medication alone or with a combination of both. Others will be along soon to welcome you and answer your questions based upon their experiences. There are also rooms dedicated to others' experience with medications and diets. Please feel free to read them.

I would suggest that you read as much as you are able and ask as many questions as you want. Nothing is too gross and there is NEVER a stupid question. We have heard it ALL!!!!

It is a pleasure to meet you. I hope you will visit often. We will help as much as we can.

[Carrie]

Hi patsAZ and welcome. I'm so sorry you have MC but happy that you found this wonderful, supportive, group. I felt very alone with my disease until I found this forum.

I'll try to answer your questions. First, in my experience the loud grumbling is just part of the disease and not a response to anything that I eat (although others have reported grumblings after eating certain foods). Even though I've been in remission for 8 months I still get the grumblings - I just ignore them.

My LC started suddenly in July 2004 and the diarrhea lasted for six full months. During that time I had no peaceful nights for months on end even though I tried not eating or drinking anything after 7PM. Imodium didn't work, either, regardless of when I took it. In fact, no medication helped (to see a summary of all my meds, go to the "MC Support Forum Index" on the home page and then "Personal Experiences with Medications").

I hope the Asacol is working for you. Even though I didn't tolerate it well, it has helped many people in our group here. Good luck and please keep us posted. These are super people who've been through it all - no question is too "icky" or whatever!

Your friend,
Carrie

[patsAZ]

Thank you Mars for your welcome. I am just blown away by this MC thing. Never heard of it and now I are one. So much of the info seems contradictory it's hard for me to get a handle on it.

I'm trying to figure out if there is central theme on which to base my beginnings on. Does that sentence make sense. I know what I mean but my fingers aren't cooperating too well.

Right now I am sitting at home and feeling very discouraged after my third trip to the bathroom in as many hours. What a life,lol

At least I am home and not in the hospital and that's a good thing.

[patsAZ]

Thanks Carrie. I did read your experiences with medication. I certainly can't tell if the Asacol is helping or not. Not real sure what it is supposed to do.

I hate going to the GI for a diagnoses and being given one that I don't understand and can't even ask questions about. Since I don't know what it is. Then being sent on my way.

I was sure glad to find this site.

[Sally]

Hi, PatsAZ,

Welcome to our family!! I am not happy about why you are here, but, since you have been dx with MC, I'm glad you are.

I have had the dreaded MC for over ten years. I have lost track. I am currently taking Entocort and I have been in remission for about three and a half years.

I would like to address the contradictory-ness of our posts. Yes, that is true. It is so because we all have differing symptoms and a treatment that works for one doesn't necessarily work for another. Even my GI doc who was an expert in MC called what she and I did Trial and Error Medicine. It took us three years of trying different things to get me into remission. It was AWFUL!! I am not the usual case, though. I am unique.

Ah, yes, the rumblings in the tummy. Or even the feeling that you are going to rumble. As Carrie said, I just ignore them for the most part. It doesn't much matter what I eat or what I don't. Sometimes I just rumble. I think it's part of having MC.

Please look around and ask all the questions you want. It may take awhile for you to find the right treatment for you, but the important thing is to keep trying. I hope the Asacol helps. It will take awhile to kick in.

THERE IS HOPE!! Be persistent and, when you have bad days, come here and whine!! We all understand.

Love,

Sally

[harvest_table]

Hi Pat,

Welcome to the "Potty People". Sorry to hear about your MC DX, but we all can attest to the fact that it is possible to get our symptoms under control and live with this disease. I was DX with Collagenous Colitis about 17 months ago and found this great group of folks at that time. They have helped me in so many ways I cannot even express it in words- I'm so glad you found us. Read, and ask lots of questions.

Grumbling tummy is something I deal with often as well. Hopefully the Asacol with take over soon and work for you to control the D. Lot's of folks have good luck with it. Are you having any other symptoms like muscle and joint pain? Those are common as well.

Just curious, this particular site is pretty new and was just opened to the public just recently. (we moved from another existing site). Do you remember what key search words you typed into your search engine that brought us up?

You will find great support here- welcome again, to the family.

Love,
Joanna

[barbaranoela]

Hiya PatsAZ----thats real cute and I gather AZ. is Arizona--

When my tummy rumbled waaaaaaaay back I knew trouble was a-brewing--
Now the rumbleing is?? well I really dont know--
Probably just little pockets of GAS poppin around---

All the ladies said it all---it is a bit scarey but once U get to understanding and getting a hold on the problem---U kinda simmer down and start on the road to feeling better---DONT GIVE UP!!!

As said---we are all different---and we all react so different to meds.
Its all trial and error-----but to get to a better life its worth the trials and errors!!! Strange as it may sound----

I felt I would be miserable *forever* having MCC,but here I am doing 100% better--

2 things that might set me off ( NOW) might be something I ate and the biggeee might be STRESS!!!

And as Margie said---read all the stuff thats here---Question anytime/anything--yup---we have heard it all

*NOTHING* U say would make us BLUSH!!!!
Right ladies????

Its things U have to ask and U have to have answers--

Glad U found us----
Luve
Barbara MCC'er

[Polly]

to the family, PatsAZ!

So glad you found us! I "hear ya" about being blown away. I remember so well how devastated and depressed I felt when I learned I had a chronic disease. Why me? And my GI doc was of little help. But, with the support and info from the folks on this website, I am happy to report that I have been in complete remission for 3 years and 2 months ! No kidding! You will get there too.

I also know what you mean about trying to assimilate all that you are learning in order to come up with a central theme. Very well put, btw. Here is my suggestion. Try to take things one day at a time for now. You are already on asacol and immodium, and that's an excellent way to start. It can take up to several months for the asacol to work. And it DOES take time to heal our guts. If, after a reasonable time, you are not seeing improvement, you can talk with your doc about trying another med - maybe Entocort. Meanwhile, you can read and ask questions at your leisure to see if you might like to add other treatments (like the gluten-free diet0.

I remember those nights spent on the toilet. Some here have even taken their blankets and pillows into the bathroom and slept on he floor. Definitely not fun! Depends can be helpful to wear when you're having the midnight dashes - and to give some peace of mind during the day. It helps to have a change of clothes (at least underwear) with you in your car. And you will learn the location of every public restroom within 10 miles of your house! LOL!

Hang in there. Think positively. And feel free to rant and rave and unload all you want. We have big shoulders and ears.

Love,

Polly

[tex]

Welcome to our on-line family. As you have already discovered, MC seems to get "stepchild" treatment from most GIs. They don't see enough cases to consider it worth their wihile to become very well acquainted with it, and there is indeed a lot of conflicting informaion floating around about it.

By sharing personal experiences here, we're able to weed out the things that help, from the things that don't seem to help, or the ones that actually make matters worse, so that in the long run, we're able to fine tune our own treatments, and smooth the way for others, who are just beginning the journey back to health.

Asocol is probably the safest, generally effective med available, for the treatment of MC. It usually takes anywhere from a few days to a few weeks, for it to begin to control the "D". There are a few of us, in this group, who found that Asacol either did not work for us, or actually made our symptoms worse. It's probably the best choice for a first try, though, and hopefully, you should be able to tell, in a few days, if it's going to help.

Don't be disappointed, though, if it takes longer. Some of us are sick for a long time, (it seems like an eternity, when you have uncontrollable D), before we are able to find a treatment that we are comfortable with, and start making progress back to health.

Many of us find that when we get MC, we're suddenly lactose intolerant, and/or casein intolerant. You may be able to achieve remission sooner, if you discontinue drinking milk, and eating all dairy products. After you get the D under control, you can experiment with dairy products again, to see if you can tolerate them. The main thing it so get the D stopped, and then you can fine tune your diet, if it seems necessary.

The reason I mention this is because Asacol contains lactose, and if you are lactose intolerant, the additional lactose you ingest, may be more than you can tolerate, and therefore it may interfere with the Asacol, and possibly keep it from working properly, (IOW, your body may react against the lactose in the Asacol, if it is already running short of lactase enzyme).

In general, it's best to eat a bland diet, at least until you can get the D under control, because the gut is easily irritated, while it is inflammed by an MC episode. Eating the wrong kind of food, can make achieving control a much more elusive goal. After you get the D under control, your gut will be much more tolerant, as far as diet is concerned.

Please keep us posted on your progress, because we are all "students" of this disease, and we need to continue to try to learn as much as we can about it, for the rest of our lives.

Again, welcome aboard,

Wayne in Texas

[starfire]

Hi PatsAZ!!

I found the wonderful people here to be overflowing with information AND CARING attitudes!! Hope you will have a comparable experience and come to love the site as much as I do.

They are absolutely correct about being able to talk about ANYTHING here - nothing is too gross or disgusting because all of us have most likely had some or all of the same experiences. This disease does all it can to overide your modesty and delicate sensibilities.



I am maintaining on Asacol, but my Dr. started me on first Prednisone (please don't try that one) then Entocort (I'd take that one again if I really needed to).

Shirley

[moremuscle]

Hi PatsAZ and welcome - lovely name you've come up with

I am KarensAZ LOL!

Pat, you are probably never going to regret logging on here and searching for help in this support group - wow, these folks have helped me in ways too numerous and too generous to describe. My mind was completely blown away when I was diagnosed a little over a year ago - I was feeling miserable and lost and full of anger, sadness, and despare. It felt like the carpet had been pulled out from underneath me - it wasn't a joke, it wasn't a bad dream, it wasn't a nightmare that was going to go away; it was way too real. However, it took many months to come to terms with it - ups and downs like being on an emotional roller coaster - mostly down. I had diarrhea all the time - couldn't leave the house w/o having accidents. Had accidents in my bed - was so anxiuos I couldn't let myself go to sleep for fear I would have an accident as soon as I started relaxing - Polly is right about the Depends. I used them for bedtime and for jogging in my neighborhood. I occationally wore them to the grocery store too. A lot of pride had to be swallowed.

I have been in remission since early March 2005 and I am feeling excellent. I rarely have the least bit of rumbling in my gut and don't need Depends anymore. In my case I am certain the rumblings are related to what I eat. I control my symptoms with diet alone.

Like everyone has let you know - there is lots of hope for a good life even with this diagnosis under your skin. Don't let it get you down - use this group to help you find a good way to live with it.

Have a peaceful night.

Love,
Karen

[Peggy]

Hello. I am new here found you on the internet. My
GI just diagnosed me as MC. I spent a week in the hospital for that diagnosis. Later I spent a week in ICU with C Diff.

Am home now and trying to learn all I can about my "little" problem.

May I ask a couple of questions?
First off does the loud grumbling sound I get mean that I have eaten something I shouldn't? Or is it just digestion noises that are louder now?

Are there any suggestions to have a peaceful night rather than having to go hurredly (sp) to the bathroom during the middle of it?

I have read many of the posts here and am trying to assimilate it all. There is sure a lot to learn. And my GI was not very helpful. I am on Asacol 9 tablets a day and Imodium has been suggested. What do I need to do? Help?

Thanks for any info.

Welcome to the family! Just home from a long trek weekending with another colitis sufferrer in the States (I'm from Canada). I look forward to getting to know you.

Love
Peggy
42 dx'd with collagenaous colitis Jan. '03

[Lucy]

Welcome PatsAZ,

Like everyone has said above, this is a great site.

I, like Karen and many others, elected to try the dietary route, and with the elimination of a few other "allergens" in addition to the gluten, I never had any further symptoms.

However, even before I learned how to avoid the minute sources of gluten, just the elimination of the major ones made me feel incredibly better physically and mentally (mental fog), despite continuing to have a much decreased number of diarrhea stools due to the other offending foods I was still ingesting at that point.

Some people, on the other hand, who've found that they are definitely gluten sensitive, have not had quite such a decrease in volume of stools until the minute amounts were also removed, and I envy them for continuing to pursue the course without the immediate gratification that I received having only eliminated baked goods, like bread and cakes, and breaded foods, and also pasta.

I had had much body pain and swelling which had come to a crisis which lead me to start the diet in earnest. The arthritic swelling and pain in my feet going away was the most dramatic of the positive signs that I was onto something with the gluten-free diet.

My longest symptom was migraines --had had them all my life, but after a while on the diet, I noticed that my usual "triggers" for migraine wouldn't trigger a migraine. These had been frequent and had been getting worse before I started the diet, but I've not had one since. This was an unexpected benefit, but one which I understand is quite common among people with gluten sensitivity, such as celiacs who are also gluten sensitive, and among whom are many persons with M.C.

If you've been reading the new member information, I'm sure you've come across Dr.Fine's site.
This should help you to understand why many witht M.C. do well on a Celiac Diet (gluten-free diet).

I'm sure you've heard that knowledge is power, so the more you read, particularly in Dr. Fine's site and here, and ask questions, the better you'll be able to find your way.

Please feel free to ask questions here. Ask those on meds about their experiences, and those of us doing the diet/s about ours. It's amazing how much knowledge about foods we've gained. No point in reinventing the wheel. That can be expensive and frustrating.

Do you have any other symptoms, like migraines, body discomfort of any kind (like arthritis, fibromyalia) or chronic fatigue?
Thyroid problems, dry eyes, or any other autoimmune illnesses or conditions? Many of these are commonly found in persons with our genetics.

Best wishes for a good night's sleep!

Yours, Luce

[patsAZ]

I'm going to have to change my subject title to make room for more newbys, newbies?

Thank you all for such a wonderful welcome and all the info about yourselves. It really does help to know that others share the misery.

I was checking the internet for Microscopic Colitis and Microscopic Colitis Diet when I found this site. I tried to recreate my search after Joanna asked, but of course I couldn't figure out where all I went before I found you.

One problem I am having is a distinct loss of appetite. Somehow food loses its appeal when you know what the result of eating will be. Also I am on Flagyl and tastebuds are gone. Just have to force myself to eat and drink. After second trip to hosp, I know how important it is but boy is it tough.

Yes I have found Depends. They are my newest best friends. I haven't gone very faar from home lately. But when I do I pack my own little diaper bag. I feel rediculous with it but so be it.

I was dx'd with arthritis, osteo and rheum at the age of 39. It has increasingly worsened but with medication currently Arthrotec, I am mobil. Later I was dx'd with frbromyalgia and underactive thyroid. After being mostly sedentary for several years. Medication brought me such relief that I could become active again.

I am an active volunteer at church and a board member of the Wickenburg Community Chorus.

Now MC has occurred and I am back to doing little to nothing. I do love singing and hope to get back to it (diaper bag and all) someday soon. I am 63 and feel like the arthritis affliction was enough without any other itis such as colitis.

I appreciate you being here so I can vent. I started the Immodium and haven't had any action since. So now I'm worried about that. Is there no way to make me happy lol.