Newly diagnosed and overwhelmed

[darlagroat]

Hi,
I was diagnosed with CC in early September after many months of intractable diarrhea. I managed to continue working with a schedule of 4-8 lomotil per day. Since dx, I have been on budesonide, but Norman has not visited yet. I have been on 9 mg per day. The GI dr is very kind, but of the school that there "is no dietary component" to MC. She has mentioned trying prednisone.
Five months ago, I had never heard of MC, and I am a nurse. I came upon the forum serendipitously, and I am so grateful, because other people were telling 'my' story of misery. I have read Tex's book and found it to be helpful. My dilema is that I don't know where to start, really. I have eliminated gluten, and dairy and soy, although I am sure that I haven't identified all the hidden places that contamination exists. Every time I look at the forum, I think of some other food or seasoning or oil that might have been unhelpful. But short of eliminating all food, it feels overwhelming. Someone is sensitive to everything. And since Norman has not appeared, I don't know if I am reacting to what I ate 1 hour or 1 day or 1 week or 1 month ago and just never healed from.
The testing is pretty expensive as is the medication. Any thoughts?

[lorimoose]

Hi darlagroat,

I am sorry you are not feeling relief yet. It can take a while even with entocort. I learned here how to minimize my diet. The first month I ate a stew I made from chicken, rice, a bit of celery, and carrots. I ate that every meal. It really was pretty tasty. When I started feeling better and began to have some C, I added string beans to the mix, and then potatoes. When I would start C, I lowered the dose of entocort. I have since added beef, broccoli (cooked), and some melon.

I would look very carefully at your diet, and make it as simple as possible. You might also consider the testing from Enterolab, to be more accurate about your sensitivities.

There are many people here with much more experience that can give you more advice.

I hope you start to feel better very soon.

Warmly,
Lori

[robinc2525]

Maybe you could start with a very limited diet, like just eating a few foods that you think are safe. You may have to play around with that a little but hopefully you become stable and then you can start adding foods in to give you a better idea of what is bothering you. I ate chicken and brown rice and ground turkey at first (I was also on budesonide) and did that for weeks and no Norman. Until one day when I happened to switch to white rice, and....Norman! I couldn't believe that switching from brown to white made such a difference and I had read here several times that fiber is tough on us. Still I had it in my head that white rice is unhealthy and I didn't think it would matter. But it did. Little changes can make a big difference. :)

Good luck!

[mcnomore]

I know exactly how you feel, it is overwhelming at first. If you have already eliminated dairy, gluten, soy and eggs then I would do the Enterolab test C.

I did that test and found the very few foods I was eating, I was reacting to and didn't know it. I ate chicken and rice thinking they would be safe, but no, not for me.

Now I eat and have been eating for 6 months, pork tenderloin, millet gf bread that I make and banana bread that I also make. The millet bread only has millet flour, tapioca flour, 3 tsp sugar, yeast, salt, xantham gum and water. The banana bread has only the same flours, salt, baking soda and bananas. No oil or butter as that turned out to be a major trigger I discovered.

I recently began to drink V8 and just bought a juicer so I can juice vegetables since fiber is a potential issue for us. I didn't eat vegetables for 6 months.

I am finally getting normans most of the time now. Yay!

My vitamin levels have been ok except Vitamin B12 so I am getting shots.

I also had to contact the manufacturer for everything I want to eat to check for gluten cross-contamination. My allergist ordered a blood test every couple of months which told her and me whether I was still eating gluten and it took awhile to ferret out the culprits even with my limited diet. I was using ghee which was cross-contaminated.

I wish you well on your journey.

[Gloria]

I am finally getting normans most of the time now. Yay!

Fantastic report! Congratulations on your success!

Gloria

[mcnomore]

Thank you Gloria, it was a difficult 6 months. It's amazing to feel normal a lot of the time. Knock on wood.

[tex]

Hi Darla,

Welcome to our internet family. Unfortunately, budesonide doesn't work for everyone, but if budesonide doesn't help, it's unlikely that prednisone will work either, and the problem with prednisone is that as you are well aware, it's not safe to use for very long periods of time.

The advice that you've received about keeping your diet simple is excellent. And the observation that Robin made about fiber is very important. We have to minimize fiber, because if we don't, for many of us it can perpetuate the diarrhea, unfortunately. The same can be said of artificial sweeteners (in any amount) and too much sugar.

It's very important to at least avoid all traces of gluten in your diet, because for many/most of us, it only takes a very tiny amount to prevent us from reaching remission.

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

Tex

[Leah]

Welcome Darla. Yeah, this disease can be very hard to deal with, but try to remember that healing takes time. From some of these stories, you can see that we are talking months.

I was dx 1 1/2 years ago. I also went on Budesonide ( for 6 months) and was lucky because it worked quickly for me, but I drastically changed my diet at the same time. I also went gluten, dairy and soy free. I did eat all meats, but took ALL fiber out of my diet ( which was a huge change for me. I am in the health and fitness industry). That means NO RAW FRUITS AND VEGGIES, BEANS, OR WHOLE GRAINS. Low sugar, no caffeine for me either.

I know that the whole diet things seems drastic, but please know that once your gut has significant healing time and you start to feel somewhat normal, you can test some of these things back into your diet one at a time. I have been able to add many things back in :) Think of the next 6 months or so as time to heal and really make your diet simple. I lived on meats, eggs ( some people can't eat these, but I can), sweet potato, cooked carrots and green beans, WHITE rice and rice cakes, corn tortillas, almond butter, GF cereal with almond milk, avocado, and apple sauce. Coconut and olive are the only oils I consume. My list is actually pretty big compared to most, but it worked for me.

Later, I found that histamines were my problem, so I now take OTC antihistamines, but am completely off budesonide. Are things perfect? No, but I usually only go once a day and it no longer controls my life. If I feel uncomfortable or things "soften up", it's usually because I ate something I shouldn't have ( like from a restaurant). ... restaurants are a bad idea while you are healing.

Take a deep breath and remember that this is a long road, but recovery is possible :)
Take Care
leah

[darlagroat]

Thank you so much for your suggestions and encouragement. I have a feeling I'm going to need you all!
Has anyone used Metagenics anti-inflamatory protein powder? It is a medical food without gluten, eggs, dairy or soy.
I so appreciate the time you all took to respond!!

[coryhub]

Welcome Darla,
We have all been where you are in that first year. I remember it was hard and frustrating but each time I got "glutened" I learned something new. I am not a patient person but I had to learn to be. The hardest thing was the toll this disease took on my social life. That was a big adjustment as much of my social life revolved around food and potlucks. I decided to look at this disease as a challenge and became determined to adapt. I remember the excitement and celebratory state I would be in over every little achievement. Only the people on this board understood me and cheered me on. I am glad your found us!
Cory

[DebE13]

I used metagenics products when I saw my chiropractor who also practiced functional medicine. For me, the thousands of dollars I spent on supplements went down the toilet. Until I eliminated gluten, soy, dairy, and eggs I did not start to heal. I am not where I want to be yet but getting closer. I also have to be careful with too many fruits in a day, nuts, legumes, and nightshades. It seems now I can tolerate them in small amounts and not all in the same day but it's a balance that I haven't refined yet.

It is terribly difficult to make the change all at once. It took me years. I had many emotional attachments to foods and wasn't able to give up everything at once. I wish now I had had the strength and will power to do it because it has just prolonged my healing. I regularly cried at the dinner table, it was emotionally draining. But it doesn't pay to dwell on it.

I am currently taking 3mg of entocort every fifth day and hoping to get off of it all together. Prior to that I took prednisone which stopped being effective and created many more issues for me. It was supposed to be a short course of treatment but ended up going on for much longer than I wanted. I tapered off of it too quickly which added to my problems. My sleep was impacted by prednisone use and I still have issues and that was two years ago. Everyone reacts differently so that may not be the case for you if you need to take it. The doctors never explained the risks and at that time I didn't question anything.

Just take one day at a time or just one hour at a time if needed. Changing your diet will get easier. If you are lucky enough to have more immediate results, then changing your diet will be rewarding and easy to stick with. If it doesn't, don't give up! It can take more time than we'd like.