New and Struggling

[laurenla520]

Hello, my name is Lauren and I was diagnosed two days ago with microscopic colitis. I know it takes some people many years to recieve a proper diagnose, so I'm so thankful that they have identified whats been going on instead of just throwing random medications at the problem.
This started about a year ago when I started having horrible gas all the time and gradually came the constant watery stools about 6 times a day. I knew something just wasn't right. I know this is a place for support and positive encouragement, but as a 20 year old female, I can't help but feel like this has taken over my life in such a negative way. I feel like I can't go anywhere without humiliating myself with my gas and constant trips to the bathroom. It has also given me terrible anxiety. Like when riding in a car its the only thing I can think about. Once an attrac tive and social girl, I find myself mainly alone because I just don't want to deal with the embarasment. Thankfully I am no longer in a relationship. The flatulence I am talking about isnt the kind all the drs brush off by saying its normal to flaulate up to 30 times a day blah blah THIS IS NOT NORMAL.gas x beano does not work, BENTYL for IBS did not help either, i was hastily labled w ibs before the colonoscopy and biopsy that determined MC was the culprit.

I started taking the asacol tablets. 3 a day, they are working okay I guess, do nothing for the gas. Reading your guys' posts I am going to try to switch to Entocort in a couple weeks? Suggestions? Also reading this site, and thinking back on it, I most likely am gluten sensitive, so am going to begin a gluten free diet.

Some questions weighing on my mind-
Is this ever going to go away?
Is any of it psychological? Would medications for the anxiety caused by all this be beneficial?
Should I switch to entocort?
Does any one struggle with the gas?

Thank you so much. I could not be happier about finding this support group, and with so little known about microscopic colitis, a place where we can all take suggestions to help our disease has really answered my prayers.

[Deb]

As a relatively newcomer myself, I know the relief you've found by finding this site. The information I've learned here has made a world of difference
with my MC. I was also fortunate to get an early diagnosis and with the help of all the trials those here have experienced I feel like I was able to
jump start my recovery. I am currently drug free and am managing at this time by avoiding gluten. Except for very brief symptoms I am feeling
nearly back to normal. Believe you will get better because you will!

[Foxnhound8]

Lauren

I too, am new to this diagnosis and found Entocort alone wasn't working, so my Dr. added Apriso (mesalamine) and I am doing better. I'm glad you found this site. It really helps to have others with the same problems (that are not easy to talk about) talking about them openly. Check out the testing available for finding your food sensitivities (Enterolab and MRT) and go from there. Good luck and stick with the gang here. They always have a kind work of encouragement when you are having trouble.

foxnhound

[jmayk8]

Hi Lauren,
I am a newcomer too. I am 28 years old and was diagnosed with Celiac disease 3 years ago. I was doing great on my diet up until the this past year. I was having very bad gas pain and unformed stool, basically just a pile in the toilet a few times a day. I had my colon/endo about a wk and a half ago and found out it was LC. I started my entocort last week and the first day or so a had formed stool but now I am back to my 'piles'. I know patience is a virtue, so I will wait it out. I have read very good things about it on this site. I have my fingers crossed. I also have a problem with VERY loud stomach noises, i cant link it to certain foods bc sometimes it happens and sometimes it doesn't. I have stayed Dairy free since I have been on the entocort and TRIED my best to be careful with soy bc i read on here that a lot of people who have MC and gluten intolerance also have dairy and soy intolerances as well. I also have a problem with skin rashes and an itchy scalp. I don't know if it has anything to do with my LC but both problems arose at about the same time. So, WELCOME and ask any questions you have, people here are so nice and very helpful!
Jenny

[harma]

hello Lauren a warm from the Netherlands to this MC message board. I can assure you have come to the right place for all your questions. I think you will read a lot of messages from other members that you will recognize, how MC can affect your life. The good news is, almost everyone in one or the other way gets his or her symptoms under control and gets his or her life back on track. We all follow a different path. We share our experiences here, learn from each other.

What is quite import with MC, since mainstream medicine does not have that much to offer, is to play an active role in your recovery. What a lot of members helped here (including myself) is a diet. Most of the people here react to gluten and milk products (caused by casein). You were already thinking of starting to eat glutenfree. I think that is a very wise decision. Besides milk and gluten reacts about half of the people here also to soy and a minority also to other things.

About switching to entocort, I don't know very well what to advice you. I hope others will help you with that. What I can say in general, a lot of members use entocort (including myself). Some people here control their MC with entocort alone, some with diet alone and other with a combination of diet and entocort. Also the view medicine trails that have been done with MC patients, entocort seems to give the best results. But on the other hand some people here don't stand entocort. So actually I think there is not straight answer to this question.

About your gas, oh I know exactly what you are talking about, it is so embarrassing, isn't it, and can influence your social life enormously. I struggled with it for years!!! Far before I was diagnosed with MC. What could be the cause of your gas is a lactose intolerance. It's very common with any IBD and/or gluten intolerance to have a lactose intolerance. I discovered it by coincidence a couple of years ago, when I was on holiday and had no milk products for a couple of days. I was amazed how much different it made. Back home I tried it out a couple of times, and decided to go lactose free and since than, well I can be gassy still from time to time, but it's so much better since I started to avoid lactose.

I would encourage you to look around in other posts here, and get as much information as you can find here, also ask as many questions as you want. Don't feel embarrassed about any gas or poop questions, we are all so used to it here. Also where you are know we have all been there (some a bit worse than others), but also thanks major life changes (most important diet) and (sometimes) medication you can get your life back. And than I mean really getting your life back. Working studying travelling. I have to admit there is not a quick fix, also it is not always is easy. It takes effort and time. But again it is possible. I consider myself of one of the examples of it here, a year after I was diagnosed with MC I left to Jordan to life there for three months, and planning of going back for another 6 months in a couple of weeks.

Harma

[Gloria]

I left to Jordan to life there for three months, and planning of going back for another 6 months in a couple of weeks.

Harma, aren't you concerned about the events going on in Egypt? Maybe you should wait to see how this plays out.

Gloria

[Polly]

Hi Lauren and

You've already received some great advice. I'll just add a few comments. Asacol did nothing for me, so if I were in your shoes, I might opt for the Entocort if you don't see improvement in a few weeks. Also, have you discovered Imodium? It can help restore some quality of life for many, until meds/diet kick in.

I hear you about the flatulence! It was awful at the beginning. Like you, I was terrified to be in a car, unless I was the driver and could pull over whenever. Any trip took me twice as long, because I couldn't use the beltway - had to travel local roads that had ready restrooms (fast food joints saved me many times). Of course, public transportation is out - no toilets on subways/buses. (Tex, I think it may be time to pull up that old thread about members' flatulence comments for a good laugh - I couldn't find it - can you?)

Re the anxiety, that goes with the territory. Always having to worry about the location of the nearest toilet is an anxiety that those without MC could never understand. I actually had to poop so badly one day that I had to park my car at the entrance to my community and squat by the side of the road (in broad daylight) rather than go the 1/2 mile to my house. Oh, the indignity of MC! You will learn never to be without tissue/toilet paper wherever you go! I was able to work out regularly throughout the worst times, and it really helped reduce anxiety. Of course, I had to run either on a trail in the woods (where I could duck behind a tree if the urge hit) or on a treadmill where I could get to the bathroom in seconds.

But, it WILL get better. Going GF should help with the urgency/explosiveness, so that even if it takes weeks/mos. to see a formed B.M., at least you'll have a little extra time to get to the toilet. And Imodium helps too.

BTW, be sure to look at some of the causes of MC - and eliminate them if they apply to you (NSAIDs like Motrin, proton pump inhibitors like Prevacid).

Yes, you WILL get your life back! You will need a healthy dose of patience, as well as the ability to take charge of your own treatment plan. Most docs know nothing about the diet issues involved with MC, but we are ready and willing to help you with that. And please feel free to rant and rave whenever you need to. We totally understand!!

Love,

Polly

[ant]

Dear Lauren, from Asia,

You have already got some wise advice. Just wanted to say there will be ups and downs but YOU WILL GET YOUR LIFE BACK, including your social life.

Some people might dismiss the lifestyle (strict diet) we have to follow. But I am finding more and more people with food intolerances. We are not alone and you will make some true friends out of this.....

Wishing you all the best on your road to remission. ant

[TooManyHats]

Welcome Lauren!

I know very well about the problem with gas. I knew I was lactose intolerant for years so I tried as best as I could to stay away from it. I was suspected of being Celiac so immediately after my colonoscopy I cut out gluten. Soy intolerance has been much tougher. It's in everything! So needless to say we cook at home a lot! My gas problem is now much better. Not perfect, but better.

I don't take any medication. I'm fortunate to have only been in a severe flare for 3 months before my diagnosis. I'm not sure if that has anything to do with the fact that diet alone has helped. I used Immodium right after my colonoscopy for 2 days, which helped to get things back on track.

Just a note, be careful of lipstick (if you use it). I was recently put backwards after wearing a lipstick that contained both gluten and soy. Again, I used Immodium for 2 days, which helped. Mostly, it's been the diet that has helped me, but it is very isolating as much of our social lives revolve around food. I haven't figured that part out yet, so hopefully others will chime in there.

Again, WELCOME! READ everything here! You'll learn a lot.

[Gloria]

WELCOME LAUREN!!

I'm so sorry you had to find us, but know that finding us will provide the best solution for your MC.

It's heartbreaking to read that you are 20 years old and have to struggle with the embarrassment and humiliation that MC can bring. You still are an attractive girl; MC hasn't changed that. You will get your social life back. All of us here are proof of that.

I agree that changing your diet and/or using medications are your best route to wellness. Each of us has to decide which path we'll take, and much of the decision depends upon our progress. You've been given a lot of good advice. Keep reading here and learning. There are years of experience to learn from.

Gloria

[nancyl]

Hello Lauren,

I am also relatively new. I have found that Diarrhea Stop helps, Pepto Bismol, and probiotics. My nutritionist recommended one call Bio-K+ found in the refrigerator section of the health food store. I also take Culturelle.

I had a 40 day reprieve and this morning had a flare; could it have been the fried egg and two pieces of bacon? I have eaten eggs, but not bacon since this began last Aug. 1st. So, this morning I took two Diarrhea Stop and two Pepto tablets and will now go out to get more of the Bio-K+ and hope all of this works. During those 40 days I ate foods with gluten, soy, dairy. I stayed away from fibrous foods and ate well cooked veggies. I will talk to my nutrtitionist when I get back from my trip to see if I should do some testing.

You are so young to have to deal with this problem. I hope you feel better.

Nancy

[tex]

Lauren,

Welcome to our internet family. I hope that you can find your solutions here.

Is this ever going to go away?

Periods of spontaneous remission occasionally appear, for a few patients, but that doesn't happen for most of us. In general, no, MC cannot be cured. However, the symptoms can definitely be controlled.

Is any of it psychological? Would medications for the anxiety caused by all this be beneficial?

Anxiety and depression go hand in hand with the nature of this disease, due to it's debilitating symptoms. Some people find medications to be helpful, but those symptoms should improve, once you get your MC symptoms under control.

Should I switch to entocort?

As Polly has already pointed out, it is generally more effective than the 5-ASA medications.

Does any one struggle with the gas?

Definitely. Below, is a link to the thread that Polly mentioned, about member gas problems.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4835

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

Tex (Wayne)

[Joefnh]

Hello from New Hampshire Lauren and welcome to the group.

You have already received some great advice and can say that this is the best group of folks around for dealing with these diseases.

I will agree that diet is the first line of treatment for LC or CC and as you figure out what you are reacting to and I like others here found that Entocort works quite well.

One area that I dealt with early on and like you it was one of my early symptoms was gas. I did find that for me the biggest foods that caused the gas was any raw fruit or vegetable and dairy products.

I guess my advice would be work closely with diet first and give Entocort a try. For helping to identify intolerance you can look into testing by Enterolab or the MRT testing

The link for MRT testing is:

http://www.nowleap.com/index.html

The link for Enterolab testing is:

https://www.enterolab.com/

Both tests help by helping you identify your food intolerances but even with them as a guide you will have to carefully try certain foods and see if your symptoms worsen.

Initially since your system is in such an uproar I would highly recommend starting a strict gluten, soy and dairy free diet while starting the Entocort. This will allow you to get somewhat better before you start experimenting with specific foods. Hopefully you will start to feel better in a few weeks.

Take care Lauren and welcome to the group

--Joe

[MBombardier]

Welcome, Lauren! I have a daughter named Lauren. You've been given lots of good advice already! The one thing I would add is that going to a low residue (low fiber) diet is what finally did it for me. I've been gluten-free, lactose-free, and soy-free for four months, but I still get the flatulence and icky poo if I overdo it on fiber. But as Ant says, "Softly, softly, catchee monkey" and in the end, patience will win the day.

[Gabes-Apg]

Gday Lauren from Australia

to expand on the advice given above, there is no sure way or quick way to get MC under control, sadly.....

what items (food or stress) that cause gas, D, pain can be different for each of us
what reaction we have and how long it happens is also a bit different for each of us
and what management technique we use to get the symptoms under control is different.

my tag line is - there is no right way or wrong way - there is your way.

there is loads of information on this site that will help you with some of the very common triggers (gluten, dairy, soy, yeast etc)

I have managed to get reasonable control and minimisation of symptoms via diet, it took me about 6 months to figure out the trigger items. if you can do some reading on Leaky Gut, whether you have had D for a few months or a few years the cells of your digestion are a bit damaged, so part of the aim whether using meds or using diet or both, is to stop inflammation happening (D), allow the digestion system to heal so that you can a) minimise D happening and b) optimise your absorbtion of nutrients from your meals.

you will get your life back, it might be a little different than what it was before MC, in my eyes any changes you make are well worth it!

take care and good luck