New to the discussion board!

[lnwatkins]

Hi everyone! I wanted to post here because I am really looking for a support group and someone who can understand what it's like to have microscopic colitis
I got diagnosed with LC in 2009 when I was 20. I'm now 24 and I've taken asacol and entocort EC with no response. I've done a gf diet with no help, and my GI dr seems to think diet doesn't correspond with anything either. I'm not sure if it does or not. I've done the Prometheus series test that showed no chrones disease or UC and I actually have a ct scan to check abdomen today.

I had a colonoscopy again in december of 2012 and found that I still have microscopic colitis.
Which is still causing me all the cramping, d, and just over all exhaustion.


I've been very depressed lately and just started taking cymbalta to help me deal with how hopeless I feel.
My choices at this point are stay taking imodium to mask the symptoms, or to try imuran that has all kinds of scary side effects that I'm really not wanting to try. I have a 14 month old daughter and I feel like I'm missing out on her growing up because I'm always running to the bathroom or just too sick from the abdominal pain.

I'd really love some advice and just some words of wisdom from people who are going/have gone through the same thing.

Thanks guys!

[Eric]

Welcome to the group. Will imodium mask your symptoms? Most folks here are going to stress the importance of diet and finding out which specific foods cause you trouble. While going GF helps a number of people, there are plenty who find that a larger number of offending foods must be removed before finding relief. Dairy is probably the next thing you might try removing. You may also want to provide a little more detail about your symptoms.

Good luck.

[Jan G]

Hi lnwatkins,

How long were you on Entocort? When I was first diagnosed in the spring of 2012, I was put on Entocort and it helped me immediately. However, when I relapsed in January of this year, the doctor put me back on Entocort and it took a good month for it to kick in and help. I was told that with each relapse, it takes longer for the Entocort to work. So I was wondering if maybe that is your situation.

Good luck and I hope you get relief soon.

Jan

[tex]

Hi LN,

Welcome to the board. Your doctor is wrong — food sensitivities are the cause of the continuing chronic inflammation that causes MC in the vast majority of cases. For many patients, anti-inflammatory drugs can mask the symptoms for as long as the drugs are continued, but when the drugs are stopped, the symptoms return (unless the proper diet changes have been made, and the gut has been given time to heal). For some patients, however, drugs are not enough, and the inflammatory foods must be removed from the diet in addition to taking the drugs, in order to achieve remission.

The diet takes a while to work, because it takes a long time for the damage to the intestines to heal, and as you have found, ALL of your food sensitivities have to be removed from your diet concurrently, in order for the diet to bring remission. Removing one or two foods at a time, and then trying something else will not work — the reaction will continue as long as any inflammatory foods remain in the diet. This means foods that are inflammatory in your particular case, not foods that are generally inflammatory. There is no such thing as a "one-size-fits-all" diet — we all have to determine specifically which foods are causing our reaction.

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

Tex

[Zizzle]

Welcome LN,
I also have LC diagnosed in 2009. I had Enterolab testing and promptly went gluten free, dairy free and mostly soy free, and I saw huge improvement pretty quickly. Of course, it didn't fix things 100% but I had my life back. Have you tried Pepto Bismol tabs? They were helpful for me, and I still take them on occasion as needed (but some here don't get any relief from Pepto). You might also try antihistamines, in the event your symptoms are triggered by mast cells activating in your GI tract. I had surprising success taking one Claritin Readitab a day, and I didn't have any history of allergies (other than topical nickel allergy).

[Leah]

Welcome!
Most doctors are totally clueless when it comes to food and what it can do to our gut. When MC was triggered, so were the food intolerances :( I didn't believe it at first either, but after a month I realized I had to jump into this healing plan with both feet in to be successful.

I went on Entocort and at the same time, removed gluten, dairy, and later soy. I also removed all irritating foods like RAW fruits and veggies, salad, beans and legumes, acid foods like citrus and tomato, spicy, coffee and black tea. These foods are too hard on our inflamed guts. Most of us here do an elimination diet and stick to a very basic protein/cooked veggie /rice based diet for a while. As you heal and start to feel better, then you can try to add back some of the irritants. After about 6 months, I weaned off of Entocort and was able to add back many things, so it's not forever. However, I still am gluten and dairy free and mostly soy free.

If Entocort doesn't end up working for you even with diet changes, then you might want to try the Pepto Bismul protocol. It's 8 tablets a day and you slowly wean down in a totoal of about 3 months. Again, it must be in conjunction with the diet or you will relapse once you are off the drugs.

Ask anything and read as much as you can on this board. You may want to buy Tex's book ( upper right hand corner of this page). It's full of great info
Good luck
Leah

[carolm]

Hi LN,
You've probably seen if you've been reading this board that going GF is not enough, like Eric and Zizzle have said. For example, I went GF and DF immediately. I was still having gurgling and rumbling and when I cut out soy that stopped. When I received my Enterolab results my reaction to soy was higher than my reaction to gluten. And even now if I accidentally ingest soy, I'll be nauseated and gurgling within four hours. After I had gotten off of Entocort I found I reacted to eggs. Enterolab results also showed I reacted to pork. It really has to be a systematic approach to sort this out.

You'll find a lot of help on this board-- truly the real experts are here. My GI doc told me at my last visit that she was very impressed with my progress. She knows I'm getting my diet advice here and that I got testing from outside sources. Still there's no arguing with success.

Carol

[Bama12]

I have only had MC for about one year.
I'm sorry you are one of us, but you will find the best advice here
I have followed all the advice given, especially from Tex.

IT WORKS,!!!!

I wanted to post because you stated you were starting Cymbalta
I have been on and off anti depressants for about 15 years
Cymbalta was hard for me, just made me feel as if I could NOT
get out of bed, nor did it really help with my chronic neck and shoulder pain
I found myself getting up and then lying back down.....all the time

TEX ...please share the link with MC and SSRI's
Not sure if Cymbalta is one ?

When I was first diagnosed, I was told by my GI that MC can be linked
To taking anti depressants (SSRI's ) and NSAID like Advil, Motrin etc

I stopped taking all my meds and only take Tylenol .

I did not seem to get much relief from Asacol.
But started gluten free 5 days ago and seeing improvement.
Soy and dairy are next.

I have two children 6 & 7 so I sympathize with you and your daughter.
Just know you are a good mom because you are.
Children need to know you love them, that's all
She will grow and prosper and never remember that you
Were sick when she was little.

You may need to take an antihistamine as well as go soy free, dairy free
And maybe nut and egg free.

Keep fighting the good fight
You need just a couple of good days to help you "see the light"

[JeanIrene]

Hi lnwatkins, sounds like you're having a tough time lately, but you will get better. I was diagnosed about three months ago, went GF, DF, and SF, and could see progress within about a week. I got through the bad days with pepto Bismol. I feel really well, except when I try a new food which my tummy doesn't like. Takes some adjusting, but there is a light at the end of that tunnel! Hang in there!

Jean

[tex]

TEX ...please share the link with MC and SSRI's

I'm not sure which link you're referring to. Is this the one?

http://www.microscopiccolitis.org/

Actually cymbalta is an SNRI, which means that it not only blocks serotonin reuptake but also norepinepherine (adrenaline).

Tex

[lnwatkins]

Oh my gosh I'm feeling so much better after reading this you guys don't even know.
It really is helpful and very comforting to know there are other people like me!
I am definatly going to go gluten/dairy free but I am nervous on what I'm going to eat!
I really do feel like there's hope now!