New here :)

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

Post Reply
mythicmizore
Posts: 1
Joined: Sun Sep 07, 2014 11:32 pm

New here :)

Post by mythicmizore »

Hello everyone :grin:

I'm so glad I came across this group and was pretty surprised to actually find one! I've never met anyone else that has Lymphocytic Colitis so at times it can feel quite lonely. I was diagnosed when I was 18 but up until that point have been struggling with stomach issues my entire life. My first colonoscopy was when I was 17 and LC was never found because a biopsy was not taken. I just was then lumped into the category of IBS and told I just had anxiety. Then at 18 I went back to a different gastro and had another colonoscopy/endoscopy taken and was finally diagnosed with LC and EOE. The doctor didn't give me much hope as far as any treatment plans so up until this point I've just been coping with it. I just recently went to another gastro about it and they now want me to take another colonoscopy because the doctor feels I might have been misdiagnosed because of my age (I'm now 24). Does anyone else my age have LC?
User avatar
tex
Site Admin
Site Admin
Posts: 35071
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hi,

Welcome to our internet family. We have many members here in your age bracket. Our youngest member was 2 years old when she was diagnosed. Her doctors wanted to treat her with corticosteroids. Fortunately her mother recognized the risks involved with that and tried what the rest of us here have done (cut gluten, dairy, and soy out of her diet) and that resolved the problem. Other than the diet restrictions, she's a happy, normal 8 year-old girl now, with a great future ahead of her. If you want to read more about her, you can do so at the link below.

Please don't punish yourself by agreeing to another colonoscopy. A colonoscopy is a risky, very invasive procedure, and should never be submitted to unless there is a very good reason. And a doctor who doesn't believe the results of your previous diagnosis is definitely not a good reason. MC diagnoses are often missed (overlooked), but they are never diagnosed where MC does not exist. That's for sure.

Your new doctor doesn't know what she/he is talking about, and is obviously confused by an obsolete attitude about MC. Anyone, any age, can develop MC at any time, if the right conditions are met.

My 2 Year Old was just diagnosed with LC :(

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

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
thedell19
Gentoo Penguin
Gentoo Penguin
Posts: 454
Joined: Mon Feb 06, 2006 7:18 pm
Location: Arizona

Post by thedell19 »

I had trouble with my stomach my whole life off and on. Then my senior year in college it all came to a head. DRs said it was all in my head, and one DR even said I have ulcerative colitis. I found a new GI and he didnt agree. He said microscopic colitis, and I also took the Enterolab tests (best tests I have taken my whole life). Cut out gluten and dairy and bang three months later I was well on my way to recovery. There is a lot of good info here, and lots of good people. Good luck.
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
User avatar
nerdhume
Rockhopper Penguin
Rockhopper Penguin
Posts: 676
Joined: Wed Feb 26, 2014 8:35 am
Contact:

Post by nerdhume »

Welcome to the group. There are PP here of all ages and stages of healing. I am currently in remission and actually glad I didn't have to deal with this in my younger years. The stress of being younger, relationships, children, etc will be harder for you to deal with, but there are many success stories here.

I would find yet another GI and I definitely would refuse another colonoscopy...the cleanout alone may cause a major flare. IMO they are just trying to make more $$$ at your expense.

It was hard for me at first to accept that most GIs are clueless and the real healing can be found on this site. Like I always say 'proof's in the pudding'. Read a few success stories, those of us that are in remission achieved that by being our own lab rat and trial and error. We are each different and have to find our own path.
Theresa

MC and UC 2014
in remission since June 1, 2014

We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
User avatar
Gabes-Apg
Emperor Penguin
Emperor Penguin
Posts: 8332
Joined: Mon Dec 21, 2009 3:12 pm
Location: Hunter Valley NSW Australia

Post by Gabes-Apg »

Hi there,
Another here that has had a lifetime of digestion issues.

I agree with what has already been said above.
It would be nice to have a gi that understands LC, albeit they are rare. Majority of the members here are doing 'informed self management' using the information from this forum to make good long term decisions to attain wellness.

Many young members who adopt the main diet changes, being - GF, DF, low fibre, low inflammation, attain good remission fairly quickly. It is a bit of an adjustment, as you have to stick with it, fairly strictly, to get the results. For your long term wellness, it is worth embracing the change. And we are here to help you.
My suggestion would be try the diet lifestyle changes recommended here for 3 months, if there is no improvement then consider the scope.

Hope this helps
Healing hugs
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Marcia K
Rockhopper Penguin
Rockhopper Penguin
Posts: 1397
Joined: Thu Apr 03, 2014 10:39 am
Location: PA

Post by Marcia K »

Hello and welcome. I have LC as well. I am 54 and was diagnosed one year ago this month. So while I can't relate to your age, I totally understand when you say that no one understands. Unless you are living this you can't understand. I really didn't have any digestive problems prior to this other than bloating after eating certain things. You have come to the right place for help and support.

Marcia
Polly
Moderator
Moderator
Posts: 5185
Joined: Wed May 25, 2005 3:34 am
Location: Maryland

Post by Polly »

:welcome:

Just wanted to second what Andrew said about the enterolab tests being the best tests he's ever done.

Two years ago when my 21 year old niece told me about ongoing stomach problems she was having (rare diarrhea but frequent bloating, gas, discomfort) along with fatigue and difficulty concentrating, I "treated" her to the enterolab tests. Lo and behold, it turned out that she was sensitive to gluten and soy. Since eliminating both, she has gained back her energy and feels terrific. I like to think that we "caught" her problems early and that she can avoid the much more difficult path to remission that I experienced as a middle aged women who had been eating the wrong foods for many years.

I also agree that another colonoscopy would be of little value. You can find your own path to remission without it.

Good luck, and keep us posted on your progress.

Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Post Reply

Return to “Main Message Board”