newbie

[bouncy21]

Hi everyone, I've recently been diagnosed with lc and have been suffering with my symptoms since the end of last year.

Can anyone tell me more about it, because my gp hasn't got a clue and the specialist barely had enough time to give me a diagnosis, let alone explain how to deal with it.

I have been taking asacol 800mg for two weeks and have found that its making my symptoms much worse, so now my gp has given me more meds to control the side effects.

My friend has advised me that I should change my diet has anybody got any suggestions of foods I should aviod.

I have been told by my gp that the medication will cure this disease is there any truth in this, as Im only 23 and do not want to be on medication for the rest of life.

Help me please I want my life back

[MBombardier]

Hi Bouncy! Welcome to the board! You are number 996! If you look at the thread about e-mailing champagne, you will see what I mean by that.

You WILL get your life back!! And this is the place to learn about how to do that. It will be like drinking from a fire hose at first, but if you read the stuff for newbies, that will give you a good start. And you are not alone in your age of diagnosis--we have all ages from babies to old folks.

Yes--your diet can be a crucial part of healing, especially if your MC has not been caused by drugs like NSAIDS (like ibuprofen), or antidepressants, antacid medicines like Prilosec, etc. The first thing to do is to cut out gluten. Gluten is found in our diets principally in wheat products, but it is in other grains, and many processed foods contain it. Reading on the board will be important in ferreting out where you might be getting gluten, even after cutting out the obvious sources. If you are already gluten-free, there may be another food intolerance that your body is trying to tell you about.

We are a big family here--we've all been where you are, and we have big shoulders. Some of us have achieved remission, but most of us are still on the road. Please feel free to ask anything. I think that we all have had struggles with doctors who don't understand (or care to understand), and there are a lot of very knowledgeable people here who have been dealing with this disease for many years.

Welcome again!

[Zizzle]

Welcome Bouncy!
Glad you found us. I also have LC and have managed to get my life back on a gluten-free, dairy-free and mostly soy-free diet. The only medication I've ever taken is Pepto Bismol tablets and Immodium, but I only take them occasionally now. I probably could have sped up the process by trying Entocort (a local-acting corticosteroid), but I'm generally not a medication taker, and I react poorly to most meds, so I skipped it. I determined my sensitivities through Enterolab.com testing (where you mail away a frozen stool sample). They also tested me for celiac and gluten sensitivity genes and I was found to have one of each. I probably have celiac disease, even though my blood antibodies were negative. There is research coming out that patients diagnosed before age 40 with MC are 8 times more likely to have celiac disease, even in the absence of positive bloodwork. Has your GI tested you for celiac disease yet? If not, insist on it, preferably before you adopt the GF diet. Many members here didn't need to know their celiac status to adhere to the diet, but I personally would have liked the extra motivation to stay 100% gluten free. You have a lot of life to live on a restricted diet, so you might as well know what you are dealing with.

As Marliss mentioned, MC can be triggered by various medications (NSAIDs-ibuprofen, PPIs-meds for acid reflux and stomach ulcers, SSRIs-antidepressants) so if you haven't taken them, you should stay clear of them in the future. Tylenol and Aleve can take the place of ibuprofen for pain relief.

MC is a life-long diagnosis for most people, but it doesn't have to be debilitating. Don't be surprised if your GI doc is totally clueless about the diet connection and is unable to help you, besides offering meds with various side-effects. Read everything you can here and learn to be your own advocate. With the proper diet and stress management, you can achieve remission.

[tex]

Hi Bouncy,

Welcome to the board. The main reason why this board exists is because as a group, doctors don't understand this disease, let alone know how to properly treat it, so we compare notes, and learn from each other. The drugs only treat the symptoms - in order to control the disease completely, we have to eliminate the source of the inflammation, which can be either certain drugs, or certain foods in our diet.

There is no way that Asacol can cure LC, because all it does is suppress the inflammation. As long as you continue to ingest whatever is causing the inflammation to form, the inflammation will continue to regenerate.

If the Asacol is causing your symptoms to be worse, then you are obviously having an adverse reaction to it, and you need to stop taking it ASAP. Many of us here cannot take Asacol, because it's active ingredient is a form of salicylic acid, which makes it kin to non-steroidal anti-inflammatory drugs, (NSAIDs). The active ingredient in Asacol is mesalamine, and for any patients who are sensitive to NSAIDS, mesalamine can stimulate the production of leukotrienes. Leukotrienes simply add to the T cell-based inflammation that you already have, thus making your symptoms worse.

If you want to control your symptoms the safe way, and get your life back, the way to do that, as Marliss and Zizzle suggested, is to eliminate gluten from your diet, as well as any other foods that you may be sensitive to. In addition to gluten, most of us are sensitive to all dairy products, and about half of us have to avoid all foods which have any ingredients derived from soybeans. We also have to avoid almost all fiber, to allow our gut to heal, because fiber irritates the intestines when they're inflamed, and it can cause the reaction to continue, even if we avoid all food sensitivities. This means avoiding most fruits and vegetables, because they are loaded with fiber, especially the peel. You can safely eat limited amounts of bland vegetables, (such as squash, potatoes broccoli, green beans, etc., if they are peeled, and overcooked, to make them more digestible. Avoid raw vegetables and fruit, especially lettuce.

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

Tex

[karenswans]

Welcome, Bouncy. I'm kind of new to this too--I was just diagnosed in August. Changing my diet had immediate and profound effects on my symptoms, so I encourage you to consider it.

[sarkin]

Welcome, Bouncy!

Like Zizzle, I suspect I might be celiac, though I've never been diagnosed... I found my gene results (very like Z's) to be persuasive on sticking to the GF diet, but the most persuasive thing of all was feeling better (followed by feeling so much worse when inadvertenly glutened - now I know for sure).

I took Asacol many years ago, and it made me dairy intolerant practically overnight. Turns out, it's got lactose in it, and though it's the casein rather than the lactose that we react to in the same way we react to gluten (those are antigenic, immune reactions to the protein), take enough pills with lactose every day, and just looking at ice cream made my symptoms worse. It was years before I figured out the food connection - hope you get as much benefit out of this forum as I have.

Here's a happy thought, if this all sounds daunting: you are likely to respond faster to dietary change than those of us twice your age and more. That doesn't mean you will be less sensitive to those foods which trigger a reaction, necessarily... just you've put less "wear and tear" and mileage on your health over the years, and hopefully will find speedy healing.

Please keep us posted, and let us know how we can help you kick your symptoms out the door,

Sara

[Gayle]

Welcome to the group Bouncy.

You story is unfortunately a familiar one. MC is not a rare condition. There are, and have been, more than a few folks your age here.

For openers -- I would recommend you read through this web-site for basic information about Lymphocytic and Collagenous Colitis --- it doesn’t sound as if the Physicians you have seen have bothered to try to do so.

http://www.mayoclinic.com/health/collag ... -and-drugs

Read all the way from page 1 which is their "Definition", through page 8 which is about some suggested "Life style and home remedies". This will give you a good starting point for thinking about this condition, as well as a basis for discussion with your Physicians, as well as this forum.

Asacol is a useful drug for some, not for others. There is no way of predicting on that. If your diarrhea has worsened while taking this medication -- you could well be a person that would do better on another medication. --- and yes, it’s BACK to the DR on this issue.

Control of this issue doesn’t come over night. It comes with persistance in some diet management, as well as help from medications. You will learn what is right for you.

Best of luck,
Gayle

[Lesley]

Hi Bouncy,
I was diagnosed a few months ago, and, thankfully, a short while after that I found this board. My doc is HOPELESS when it comes to treatment for this disease, or, IMO, for any other, because it's meds, more meds, and meds to "clean up" the damage that the meds do. The idea that there may be a way to eliminate the CAUSE of the infection is anathema to him.

Without the help and encouragement of the members here I would be in a far different mood than I am today, even though I am well away from remission. I think I will have to take meds, not Asacol, but entecort (ordered from abroad because of the cost here), but hopefully I will be able to work out my diet once things are more under control.

I also think I have to go even stricter on my diet than I have been. I bake my potatoes and eat the insides, not the peel (though that is my favorite part). I might be ingesting some peel, and that may be the reason I am not clearing up, probably among other things.

You have to figure out what you need to do to get your life back. And it might take time, but I know I will get there, and you will too!

[bouncy21]

Thanks to everyone for the positive feedback its been uplifting to know there is a place I can come too to get advice and support, it's really lifted my spirit and helped me to understand a bit more about LC.

I have been to see my GP again which was a complete waste of time, so I've decided to try the GF/ dairy free and wheat free diet, I will keep you posted on how I get on.

Does anyone have any suggestions on which kind of bread will be good to eat, as I have tried rye bread and it was gross :(

Thanks Gayle for the link was very informative and thanks to all my new family.

Bouncy21

[Deb]

Bouncy, keep in mind that wheat, barley, rye and probably oats contain gluten and can cause you problems.
The best grocery store breads I've found are Rudi's and Udi's. Watch the labels though because they make
some that are not gluten-free. Also, if you have local bakeries, check and see if they might make a gluten-free
bread. I'm still experimenting making my own but haven't found anything too wonderful yet (though I'm very close to a good sugar cookie).
Also, I have been substituting brown rice pasta for recipes and no one has noticed a difference. Just make sure you cook it until it's done (not al dente as it doesn't soften up) and rinse it thoroughly before using.

[coryhub]

Hello Bouncy,
welcome home
i spent a year searching for what was wrong with me and then finally found out i had MC. Then I went about 6 months just not eating fiber and I was still miserable until I found this site. I went gluten-free as is recommended and now, just a few months later, i feel enormous relief and less symptoms. I found it very helpful to keep two lists: foods to avoid & foods i can tolerate. Now I don't have to refer to it as much. I do still use it sometimes if I am going to the farmer's market and use it for a reference tool.
Good luck to you on finding the help you need in this forum!