Newly Diagnosed

[natythingycolbery]

Hi, I'm 22, been diagnosed with micrscopic colitis (lymphocytic colitis) this august, i've been put on 4g of Pentasa which is having an effect.

However, I am in complete denial, I have a consultant at the hospital, and when I got the diagnosis I didn't really ask for any information about it, just sat and nodded.

I have an appointment with my consultant again next month before I go back to university. Does anyone have any tips/suggestion for when I go back?

Just want to know what other people's experiences have been like as I know absolutley no one having this condition at my age

[barbaranoela]

Hi Naty--

First of all this ailment can strike WEE youngsters---It doesnt care who it attacks--

The first thing--which is hard to do, is drop the DENIAL, and understand that U have a problem-- and I imagine we all said *no way* sat and nodded 2--- until we started ASKING questions----and realized we have a problem --then start to find out if/what your body needs to *heal* and get on with life--

For some tis not so easy---others have great results with meds--and its trial and error --- comes with the game---

I have been luckier than most ---and that was AFTER I found the right GI--
Read some of the posts--and dont be afraid to ask ANYTHING that comes to mind~~
Nothing is too *embarASSing *to ask--

Good luck--dont give up
Barbara

[natythingycolbery]

I know I need to drop the denial, but it's a big step to take! saying that, I am at my doctors later today for something completley different to my MC, but i might bring it up with her and see what I can do (It is a bit difficult that I will be moving back to uni in a few weeks though, yet i know this is not an excuse!).

[tex]

Hi,

Welcome aboard. Several other members are university students, and one or two are profs. We come from all walks of life, and from all over the world, to share experiences, so that we can learn how to get our life back.

Quite a few of our members are twenty-somethings, (or at least they were when they joined), but as Barbara mentioned - MC doesn't seem to care about age - it's an equal opportunity disease. Our youngest member was 2 and a half years of age, when she was diagnosed, (well, actually, her mother joined on her behalf), but after a few months, she was surprising her doctors with how well she was doing. She continues to thrive, and her symptoms remain under control, with no medications at all, (she controls her symptoms by diet alone).

If Pentasa does not completely control your symptoms, you may need to modify your diet, in order to put the disease in remission, but I realize that would be very difficult to do, for someone dealing with the complexities of college life. Time will tell whether the Pentasa will be adequate, or not. We do what we have to do, in order to prevent the disease from dominating our life. We have to control it as best we can, because it can be very debilitating, if the symptoms aren't controlled. Each of us works out our own individualized treatment program, which suits our lifestyle. There is no such thing as one treatment which works effectively for everyone, because unfortunately, we are all different, with different symptoms, and different responses to drugs, and/or diet.

Again, welcome to the board, and as Barbara mentioned, please feel free to ask anything that comes to mind.

Tex (Wayne)

[Bifcus16]

Hi Nat,

Welcome!

If you haven't already done so, please check out the section with info for newbies. It is a great summary of dealing with this condition.

Congrats on getting a doc who prescribes a useful medication early on. Many doctors know very little about this condition and sometimes they rely on out of date information.

BTW, Not asking questions when you get the news isn't denial in my book. It's shock. And a perfectly reasonable response. So ask all your questions here, when you are ready. We don't have all the answers, but between us we can help you find your way to ongoing health.


Lyn

[natythingycolbery]

I did it, I went to the doctors today and asked questions

However as she was my GP and not my consultant she told me to go ask him as he is most likley to know what is going on.

Roll on next week!

[MaggieRedwings]

Welcome Nat,

You already have received good advice but I too say go the section for newcomers and read, read, read. University is probably a very daunting idea at this point but I think you will do OK and really do suggest that diet modification can help. This disease has no qualms about hitting anyone at any age.

Stick around and we will be more than helpful.

Maggie

[JoAnn]

Welcome aboard. You have found the best place to get the information you need to heal and live with mc. It takes time to read and process all the information found here and to implement it in your life. Diet is the most important step, no gluten. If you can afford to do the Enterolab testing, it is extremely helpful in identifying your food intolerances and can help you move forward faster. Your gi doctor will probably not believe or tell you that diet is important, but all of us here know differently. Good luck, JoAnn

[natythingycolbery]

I live in the UK, so get most treatments for free :), also is MC food intolerance related? I have no idea at all.

My GI has been quite good about diet stuff, although at the moment the main concern is to get me up to a health weight.

I'm starting to read around but I am still at the completley overwhelmed by diagnosis stage of life, the universe and everything.

[tex]

Naty,

All but a few of us with MC are just as sensitive to gluten as most celiacs, and we're also sensitive to casein, (the main protein in all dairy products). That means that we have to avoid even traces of wheat, barley, rye, and any dairy products, in our diet. About half of us are also sensitive to soy, and a few of us are also sensitive to eggs, yeast, corn, tapioca, carrageenan, and a few other proteins. Fiber is also a problem for most of us, so we have to minimize fiber in our diet, in order to prevent adverse reactions. Many of us here keep the disease in remission by diet alone, while others use a combination of diet and a medication. A few are able to control their symptoms by using a medication alone, but most of us have to make some dietary changes in order to lead relatively normal lives.

Tex

[natythingycolbery]

oh right did not know that, thanks Tex.

[Bifcus16]

Hi Naty,

Check this out: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=305.

Many doctors do not acknowledge the existence of gluten intolerance without full blown celiac disease. Enterolab www.enterolab.com are the only lab that can do the very sensitive tests to reliably establish a gluten intolerance (unfortunately). That is not to say you need to do their tests (although it can be helpful if you can afford it). I haven't, but have worked out my intolerance via a process of elimination.

Your doctor may or may not believe you that food has anything to do with your condition. Hopefully yours is enlightened. Also, in most cases medication needs to be continued long term unless you also use the diet to control your symptoms.


Cheers,
Lyn

[ant]

Dear Naty

Welcome from Hong Kong. Have a good read around this wonderful site. You will find out so much about MC - the food intolerance issues, the best meds and their pros and cons, the links to other symptoms like brain fog and fatigue, the search for causes (is it autoimmune? viral? bacterium? reaction to NSAID drugs? a combination of causes? etc? The truth is that doctors are still finding out about MC and the best way(s) to treat it......

While they are doing that I find the clinical experience, care and insight of the over 600 people here who actually have MC a wonderful guide.

All the best in your journey to remission. Ant

[natythingycolbery]

I've read too much information now so my mind has gone on holiday for a while.

Thanks for all the help, be prepared for more questions when i am taking this information in

[Gabes-Apg]

Naty

gday from australia


yes - it can be very overwhelming at first when you realise the volume of information on this site and the intrincle elements of MC

questions are welcomed! and there is no such thing as a silly question (and you are allowed to ask about poop and gas)

re your quesiton about preparing for the next drs apt
there is a section on the forum that talks about information/questions for doctors appointments. The success of the appointment depends on your doctor. To Date not alot of specialists and doctors are proactive about this condition, they have limited information available to them.

quite a few of us here have taken a self management approach, research everything, dont necessarily follow the treatment the doctor (s) suggest until you know that is what you do or dont want to do.

take care and dont despair you are not alone!!