Lucky me -just diagnosed with MC

[Jody bee]

Hello everyone. I kind of feel as if I "know" some of you already as I've been reading this board for the past couple of weeks. I've learned so much and am so grateful to you all for the wealth of information. Also, for making this board is so approachable and comfortable. As many have said, it is so wonderful to be around people who understand what you're going through and genuinely want to help!

I have just recently been diagnosed with MC and have been taking Entocort for about a week and 1/2. It worked within a couple of days and the D stopped. Thank goodness.

I've been very careful about what I've been eating and have tried to follow advice that I've seen on here. Things were pretty under control and besides constant fatigue, I was feeling pretty good. That is until today.

I woke up this morning feeling as though I were hungover from a massive binge of drinking or eating or both. Very nauseous and a horrid headache. Of course, yesterday was the first day that I dared to try a couple of different foods. I know I should have introduced just one new food but was feeling invincible I guess.

The new foods that I had (those that I hadn't had any of for at least 2 weeks) were summer squash with real butter, chicken cooked with almonds and olive oil (I have had chicken and almonds previously--just not any olive oil) and then an apple (with skin) and almond butter. ( I have had almond butter previously on rice cakes.

I don't want to make this too long and I don't want to whine too much (I am pretty miserable lol). Just wanted to introduce myself, thank you all for all you do~ Especially Wayne and Polly

I am on short term disability from work and really want to get back to work asap but am worried that it's not going to happen as quickly as I'd like.

I have been staying gluten, soy and dairy free and plan on staying this way. I'll do anything at this point to get my life back. Thanks for listening to my ramblings.

[maestraz]

Hello, and I'm glad you feel that finding this board has been worthwhile. I was diagnosed in 2011, and found the advice here to be just what I needed. I hope you do too.

As to possible culprits for how you're feeling, I'd have to suspect the butter (dairy) that you had on the squash. For a butter substitute, I think Earth Balance is the best, and it is available soy-free.

[tex]

Hi Jody,

Welcome to our internet family. You seem to be off to a good start, but I agree with Suze that the butter is probably the cause of your discomfort this morning. Butter is loaded with casein (the primary protein in all dairy products).

Also, most of us find that until after we have done some healing, all sources of fiber can cause problems, because fiber antagonizes an already hyper-sensitive gut, and prevents it from healing. IOW, any fruit or vegetables should be peeled, and the serving size kept relatively small, so as to minimize fiber intake. Most of us do better if we either avoid all fruits, or at least avoid citrus fruits and all raw fruit fruit (except for bananas — many of us can tolerate bananas as long as we don't overdo it). Remember that tomatoes are a fruit, and they're also a member of the nightshade family, along with all peppers. Not only is the acid in most fruits a problem, but the fructose is typically not completely digested until after we recover, and so it tends to ferment in the colon, causing gas, bloating, cramps, and D. Many fruits and some vegetables also contain sugar alcohols, which are mostly indigestible, and they tend to cause the same problems as fructose. Any vegetables should be peeled and over-cooked, to make them easier to digest.

Again, welcome aboard, and please feel free to ask anything. You're on the right track, and with some patience, perseverance, and careful attention to your diet, you should be able to get your life back.

We appreciate the kind words, and you're very welcome, of course.

Tex (Wayne)

[Robin]

Hey Jody,

Welcome to Potty People Family!!!! I was dx in 2010 with MC and like you I searched this web site until I felt comfortable enough to discuss my problems. We are all basically in the same boat. I can tell you that IT DOES GET BETTER! You might not think so right now but it will.

As for the food you eat.....please do yourself a favor and only introduce ONE new thing at a time. Also, keep a diary. I know you want to push to get back your life. But try to take things slow. I am also in agreement with what Suze and Tex said about the butter. I still can't have butter and that's ok I don't even miss it anymore. I use the Earth Balance soy free. For right now, I would also recommend that any fruit like and apple that you would like to eat, be cooked. I know it sounds terrible but it is easier on your digestion. Until the inflammation in your gut settles down...think mushy foods...nothing with seeds and no skin.

Remember this site! Come on as often as possible because I can say from my own experience that without the people on here I wouldn't be where I am today! Good luck!
Robin

[MBombardier]

Welcome, Jody. The only thing i would add is that sometimes we can eat something, but just not a lot of something. Gloria is a very good example of someone who eats according to a schedule because she cannot eat certain foods any more frequently. She has a three-day menu plan of foods that she can eat.

Almonds/almond butter is one of those things for me. I like to eat almond butter on my apples, too, but if I eat too much, my gut sounds like WWIII, and I may have other symptoms.

Right now, with seasonal allergies exacerbating things, I am not doing well with just about everything. If you have seasonal allergies, that may be a component. Keeping a food diary is an excellent thing to do, especially in the early days. It can be an important tool in figuring out what we can eat and what we can't, and it can also be encouraging, as we start to heal and see that we can eat some things, or more of some things than we used to be able to eat.

Finally, believe it or not, I think you are lucky to be diagnosed with MC. Now you know what the problem is, and you can take steps to get well. Pity the people who only get the throwaway diagnosis of IBS, and flounder around maybe for years, never feeling as well as they could.

[Martha]

Dear Jody,

I'm so sorry that you have to be here, but so glad that you found this forum, which is an excellent source of both information and encouragement.

I vote against the butter, too. If you're avoiding dairy, you don't want to eat butter. Earth Balance soy-free spread is a good substitute, and coconut oil is good on veggies too.

You may already know how hard soy is to avoid. You may want to check your foods to see if there is any hidden soy, especially soybean oil or soy lecithin. Soy gives me major fatigue, and it takes about 48 hours after I eat it to show up. Keeping a food and symptom diary is helpful for tracking down those things that have delayed reaction.

Love,
Martha

[Leah]

Welcome Jodi. Since you have been lurking here for a while, you probably know me by now :)

I was on Entocort also and like you, it worked right away for me. The thing is, that is exactly what is giving you the false sense of "being better" and able to add foods back in. The drug enables us to live our lives while we try to heal our gut. Trying new foods is detrimental to that process because you could still be eating things that are causing inflammation, but wouldn't know it because the drugs are masking the effect. What will happen down the road is when you start to wean down on your dose, your symptoms will likely come screaming back.

Stick with the GF, DF, SF diet along with no RAW fruits and veggies, acid foods...etc. as long as you are taking at least 6 mg. ( 2 pills) a day. Once you are on only one pill a day, should you try to test one thing at a time for about three days each ( before you move on to another)

I know it's difficult, but just try to think of this as your healing time ( not the time for experimenting) and feel very fortunate that the Entocort works so well for you. It doesn't for some. When you start to feel a little constipated, that's when it's time to lower the dose.

Good luck and keep us posted
Leah

You are on the right path.

[Jody bee]

Thanks so much for all the great advice. Each of you have given me something to think about and put into action. I really don't know what I would do without you!

I bought your book Wayne...actually 2-one for kindle and one hard copy. It will be my bible. lol.

I'm now back to eating just potatoes, chicken and applesauce. Staying way away from butter and apples. lol Is a week long enough before I add in another food? I'm feeling pretty good this afternoon but last night I barely slept as I had a leftover headache. I'm really bloated again today.

I know I was moving to fast and, yes Leah, you're right-I was overconfident because Entocort completely took away the WD. I'm just anxious to get back to work and life and need to accept the situation/illness and be patient with myself (I'm not very good at that).

Thanks again!

[christinakay]

Hi Jody, A week is not long enough to start adding new foods. I am six months into this and still have not really added any new foods. I have backed down on my entocort to 3mg for 3 days and 6 mg for 1 day. I am very cautious with what I eat.





Hang in there,
ChristinaKay

[Jody bee]

What are you eating Christina? I find that, when I'm not nauseous I'm really really hungry. I'm only eating potatoes, chicken, bananas and applesauce. Do you think there might be something else I could eat?

Thanks

[christinakay]

Jody, I am lucky as I can eat beef, pork, chicken, and fish. I also eat potatoes, bananas, well cooked cauliflower, and rice. My comfort food is chicken and rice. I boil the chicken in a safe broth and then make rice with the broth. It seems I always want to come back to that if I haven't had it in a while. Just lately I have added sorbet , occasionally a few pistachios and potato chips. Rice cakes are also good. (Lundberg's are a good brand) I find I don't do well with the Chex cereals. I also drink Rice Dream vanilla flavored milk. It is very simple food.



Hope this helps
Chris

[Leah]

Everyone is different Jodi, but I was always able to eat all meats. My body does very well with beef and pork. I also do well with white rice ( and rice cakes) . Sweet potatoes have always been good for me also. I still can't have bananas.... or much of any fruit. That will boat me faster then anything.
If you want to add foods, then choose ones that are known to be safe (and non-inflammatory) for many of us and only add one thing at a time every few days.

leah

[Sheila]

Welcome Jody, All of the advice you've received is good, learned the hard way. There is rarely an easy fix with MC and patience is definitely required. I was lucky and entocort worked for me from day one. Unfortunately, I'm still taking it although I have weaned down to one every other day.

There are quite a few of us on paleo or modified paleo diets. Keeping a food diary is so important when you are slowly adding new foods.

Hope you are feeling soon and able to get your life back

Sheila W