Attn newbies or anyone struggling....

[Gabes-Apg]

hi there Laura!
welcome to the group and empathy that you have MC and had to find us

the Vit D3 and magnesium in your caltrate is most likely, not enough... I would encourage you to take high dose of Vit D3 and magnesium.

diet wise, we recommend not trying new food items until you have got inflammation levels down and there has been some gut healing.
if you can stick with a eating plan of well cooked animal protein and a few vegetables for a few weeks (figuring out your safe veges in this process) then that is a good foundation to work from. If you can make soups and stews based on home made bone broth then you will be optimising gut healing and have a better chance at reducing symptoms...

Yes Entocort can be price inhibitive for many. There are some other medication options that are more affordable if you want to consider them.

hope this helps

[Erica P-G]

Hi Laura,

Focusing on the Magnesium spectrum....there is lots to choose from. To help narrow it down for you:

Topical - Oils, lotions (I have found the LifFlo product at Vitacost.com for a good price), Epsom Salts (this you can purchase in any store)

Internal - (non-buffered) Drs Best Chelated Magnesium is a great option (again I have found price wise Vitacost.com is good)

It's gonna take some good VitD3 and Magnesium use to help get you feeling on track again. Then you can graduate to the Vitamin B's YAY!!

Stick to being GF/DF/SF & Egg free and get on the VitD3 and Mag wagon and you will see results, promise
Cheers
Erica

[tex]

Hi Laura,

Welcome to our Internet family. You're on the right track, and you're motivated, so you will get your life back.

Regarding magnesium supplements, if you buy Doctor's Best Chelated Magnesium from Vitacost, you should be fine, but don't buy the Vitacost brand of chelated magnesium. I made that mistake last year and ended up with a severe magnesium deficiency episode after taking an antibiotic for a dental procedure. The problem with the Vitacost brand of chelated magnesium is that it's "buffered". They don't say what it's buffered with, but I finally tracked it down — it's buffered with cheap magnesium oxide. You think you're getting chelated magnesium but about half of it is cheap magnesium oxide. Not only is magnesium oxide poorly absorbed, but it's the number 1 form of magnesium associated with diarrhea.

You're correct about most of us having numerous food sensitivities. And of course in order to reach remission we have to avoid all traces of the ones that cause our immune system to produce the antibodies that result in the intraepithelial infiltration of lymphocytes that cause the inflammation pattern diagnostic of MC. Most of us are sensitive to gluten, casein, soy, and eggs. Some of us also have additional food sensitivities, but those 4 are the most common and the most significant.

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

Tex

[gac]

Gabes, your post was exactly what I needed to read today. This has been a difficult week and I so often come to this website for encouragement and information. I also come for the friendship I have found here. We are truly a family spread out all over the world. We understand each other as no one else can. Our families care and are concerned but none of them can know what it feels like to hurt and be sick with MC. How it can tear your days and weeks and months apart and totally change the way you live. I sometimes look back even to the end of last summer when I had only been out of the hospital for 8 weeks and went to an outdoor concert in tremendous heat. I think, "did I really go there in that huge crowd with bathrooms so far away, wearing a diaper?" I wouldn't even try that now because the heat has made me so sick this summer. I'd be so afraid of having an accident. My MC is still very much not under control. My diet is so limited and I battle over what my body will tolerate and what it won't. But this website is my lifeline.......the only place I can come to find information. And I come here often. I can find the information and encouragement I need. Without everyone here, what would I do? We all feel this way. I wish more people who have intestinal problems would find this website and use it regularly. By searching thru the postings, they would see themselves and read so much wonderful information. I started printing a lot of it and putting it in a big ringbinder so it is easy to read whenever I need it or easy to take to my doctor for her to see. Gabes, thank you a million times over.

[Gabes-Apg]

Gail
you are very welcome

here are some words of wisdom that may also help...
sometimes we need these reminders...


Things falling apart is kind of testing and also a kind of healing.
We think that the point is to pass the test or to overcome the problem.

The truth is, that things don't really get solved. They come together and they fall apart.
They come together again and fall apart again. Its just like that.
The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.
Pema Chodron, things fall apart

Hardships often prepare ordinary people for an extraordinary destiny
C.S Lewis

A healthy lifestyle is not just about what you eat, it is also what you consume emotionally, mentally and spiritually.

Certainly life is painful much of the time, but we don't have to SUFFER. We suffer only because of our preconceived expectations about how life should be, not how it really is. We let our minds constantly ruminate about the past (Why did I do that?, I wish I had, etc.) and the future (unknown, scary, etc.). When, actually, life only happens minute to minute and nothing else really matters. That's what mindfulness is - living in the minute.

It isn't the things that happen to us in our lives that cause us to suffer,
it is how we relate to the things that happen to us that causes us to suffer.
Pema Chodron

[gac]

Oh, Gabes, how very true all of that is. I now measure good days and bad days in such a different measure. I measure success so differently than when I was working in a high-pressured job where my success was measured by out-put and my ability to multi-task at dozens of things at one time. And I was so good at it!!!! Throwing dozens of balls into the air and keeping them there until I could catch them. I was a whiz. I look back at that person and wonder who she was, why I was able to do that, why wasn't I extremely sick all the time from 14 hour workdays and being on my feet all the time. A master at everything, the go-to person who always knew the answers or could figure out the answers. Now I sometimes can't remember what day it is and I don't really give a damn. I measure success by how my food settles. I measure success by the small group of friends I have. I measure success by peace of mind that has been hard-fought thru some extremely difficult personal and financial problems.

But I am still standing. I have never given up. I have cried a lot and sometimes still do but few ever see me fall apart. I have a few close friends that let me unload on them and for that I am so very thankful.

Having MC was a huge kick in the face for me, to realize it was something I could not control when I had been in control of so much of my life. Now, I am far more laid back about things and do not get angry. I try not to get upset. I just let my days be relaxing. And if absolutely nothing gets done around this house, I don't feel guilty, like I once did. The dust will still be here for another day. I pick tasks I enjoy and are easy to accomplish. I try to do some things to give me some exercise but you will never see me at the gym. Don't like the fat me? Go away. You do not know my life and will never walk in my shoes. So do not judge me.

Hugs to you, Gabes.

[Kpietryka]

Great post..I'm still struggling, losing weight..I was on Ebudesonide for 3 weeks and all it did was elevate my blood sugar..the doctors put me on imuran, which I have been on a week now. The worst part is I have not much of an appetite. Has anyone been hospitalized for malnutrition?

[gac]

I eat all the time, constantly hungry and I think it is because I go to the bathroom so many times a day. I jokingly say I only pay rent on my food. It goes in my mouth and comes out the other end within a couple hours. How much nutrition am I possibly absorbing from this????? Good thing I take all these vitamins. Good thing I have a great sense of humor and laugh at myself all the time. If I didn't, where would I be? No, I haven't lost a pound in the past year and I don't ever want to hear that doctor tell me to lose weight. Just shut up shut up shut up. I'm doing the best I can with these damn intestines.

[tcbolander]

Gabes,

Thank you for this post. I've been crying for two days straight because I don't know what to eat or what to take or what to do yet. Being newly diagnosed is overwhelming to say the least. And it is so lonely. No one in my circle has even heard of it. It's painful and embarrassing and truly is just plain crap. Anyway, your post helped me to feel less alone and gave me hope that eventually I'm going to figure this out.

[Erica P-G]

Gabes,

Thank you for this post. I've been crying for two days straight because I don't know what to eat or what to take or what to do yet. Being newly diagnosed is overwhelming to say the least. And it is so lonely. No one in my circle has even heard of it. It's painful and embarrassing and truly is just plain crap. Anyway, your post helped me to feel less alone and gave me hope that eventually I'm going to figure this out.

Been here done this .....you will get a handle on this.....if you feel up to making a drastic change and eliminating most foods and just start out with some basics you may see a difference sooner than you think.

Basics would be: Water, LOTS of protein-Turkey, Lamb or wild game (i still eat this 3 times a day), White Rice, Yellow or Red Potato and sea salt. A Bone-broth (I use cornish hen bones after I cook it off and remove the meat) with gluten free noodles and the meat added back in and sea salt is very healing with lots of Aminos that our body needs during this beginning process. Don't worry about supplements at this time except Vit D and Magnesium (and I would do lots of external Mag at this time).

If you only start here with these few pointers you can work out from this by trial or error once you see improvement and results happen.
Hugs
Erica

[LauraAnn]

I totally agree with Erica 's advice. It is sooooooo scary when first starting out on trying to figure out your healing plan. I was always afraid I was going to screw up big time and end up back at square one. But if you keep it simple and keep focused you will find your way. Protein, magnesium and Vit d are your touch stones. Keep focused on you and your feelings (good vibes are important) and it will start to fall into place.

Wishing you good luck!

Laura

[gac]

I agree with both people above but I will tell you that you have to be so very very patient and know that this takes a long long time to ever get better, to ever see an improvement. And even if there is an improvement, you are going to have days and weeks that you are so sick that you think you are dying from diarrhea and nothing stays inside of you and you wonder what you did wrong. The truth is you probably did nothing wrong - it is just your stupid intestines are unhappy with everything - the air you breathe, the temperature outside, the stress in your life, not just what you ate. It has been 15 months since I was diagnosed and I can only eat and drink 10 items. Think about it - 10 items out of all the foods and beverages in the world. And sometimes even those make me sick. Then I go back to only 1 or 2.

But there are days I just want to eat anything I want to - like go to a great Chinese buffet and eat everything there. Or go to an awesome BBQ restaurant and pig out. I miss food so bad and I am hungry for real food so much I could cry. I love food and I feel deprived all the time. I hate the food I eat. I feel cheated out of one of the pleasures in my life. And sometimes I just gag at the thought of what I have to eat for my supper. But I can't eat what I want to, I have to eat what doesn't make me sick. And even then I might still get really sick.

This sucks. I'm not real accepting of it. But this website and group of friends are helping me and they will help you too. Please lean on all of us as we know how hard this is. Hugs to you.

[jlbattin]

Welcome to our group. I am about 16 months after diagnosis now, and I have quite a variety of foods I can eat, but I was very rigid when I started. I ate chicken, rice, and banana for about 2-3 months straight to get some good healing under my belt.

I felt sorry for myself, cried a lot, moped around, and then one day decided that I didn't want to live like that for the rest of my life so I upped my magnesium and D3, which helped a lot with the emotional aspect of it. I changed my thinking from "Live to eat!" to "Eat to Live!" Life is good.....so I can't eat anything that I used to enjoy. I don't need it. I don't crave sugar and chocolate and all those other things I used to eat a lot of.

Hang in there. There is hope out there! Be patient. This disease has a mind of its own!

[Sylsmith]

I have been dealing with MC (or not dealing with it) for a little over a year. Most of that was remission, with a couple of flareup following the diagnosis and first remission. This time it is getting worse, not better. I don't understand how foods that you have been eating for years with no problems can now cause one to feel to crappy! (So to speak.) 2 or 3 months ago I was eating a very mild fried rice with pork or shrimp or chicken (homemade) and getting along fine with it, but when I made it 2 days ago and had it 2 days in a row, I've had pain, cramping, gas bubbles in my colon, etc. I'm very frustrated, very hungry, dehydrated, losing weight and hope. I get different advice from different entities (MD, holistic NP, books, etc.). The fried rice ordeal is the first time I've been able to actually notice a marked response to something I ate. My husband wants me to find a different MD, but I don't have much hope that that will make a difference. I'm close to tears just writing this, as I am tired, weak, and in mild pain. I don't have much patience with this trial and error stuff, and other medical issues make it difficult to follow the elimination diet, though I have been trying.

Another question: Does anyone have trouble with Xylitol? I have dry mouth and use Biotene Spray several times a day, especially during the night. If I can't use it I don't know what I'm going to do because without it my mouth gets paper dry during the night! I have used this for more than 10 years.

Thanks for listening!

Sylvia

[tex]

Sylvia,

Food sensitivities typically do not cause the disease initially, but they tend to develop with the disease and then perpetuate the symptoms. So gastroenterologists continue to prescribe one medication after another, hoping to somehow "cure" the disease, but they fail to treat the cause of the symptoms.

The bottom line is, unfortunately, no medication can cure MC. In some cases, one or more of the medications commonly prescribed to treat the disease can mask the symptoms, but after the treatment ends, the symptoms almost always return. The only way to actually stop the inflammation that causes the disease and prevent it from reoccurring is to make diet changes that prevent the inflammation from being regenerated with each meal.

Most patients discover that unless certain dietary changes are made, symptoms typically relapse a few weeks to a few months after any treatment using corticosteroids or any other anti-inflammatory medication prescribed by their doctor is ended. This is typical because the medications cannot stop the inflammation from being generated, they can only suppress the inflammation after it is created. Therefore after the treatment is stopped, symptoms will almost always redevelop as the inflammation returns.

Here's how the food sensitivities begin:

Research shows that when the genes that predispose to CC/LC/MC are triggered, the genes that predispose to gluten sensitivity are also triggered. Gluten sensitivity causes increased intestinal permeability and this allows partially-digested peptides from certain foods to enter the bloodstream, which provokes an immune system response (because those peptides are obviously not supposed to be there). The immune system then begins to react to certain proteins in those foods every time they are eaten. This is why some of the foods that you have been eating for most of your life can suddenly begin to cause chronic inflammation by provoking your immune system to produce antibodies against them. And because physicians are trained to treat disease by prescribing drugs, and none of them receive any significant amount of formal training in dietary treatment methods, they are pretty much forced to treat MC by prescribing drugs. Fortunately, here and there a few gastroenterologists are beginning to learn about the diet connection, but in most areas of the country, progress is still very slow.

The inflammation that perpetuates the symptoms for MC patients is due to T cell infiltration into the intestinal lining (the mucosa) of the colon. These lymphocytes are expressed in response to antibodies produced as a result of food sensitivities. In most cases food sensitivities probably are not the reason why the disease developed initially, but once the sensitivities develop, then they tend to perpetuate the symptoms. This makes the disease very difficult to control unless certain diet changes are made.

But the bottom line is that if we stop the antibodies from being produced (by avoiding the offending foods or drugs), then we can stop the inflammation from being produced and the symptoms will begin to fade away. And the symptoms will stay away as long as we are very careful with our diet (and the medications we use).

MC is a very complex disease, and it is not easy to control because of the fact that reliable long-term control requires diet changes that are are often unique to the individual. In other words, there is no one-size-fits-all diet that will control the disease. But virtually every MC patient is sensitive to gluten. For most, it's a form of non-celiac gluten sensitivity, so that the celiac screening tests used by doctors are worthless for detecting the type of gluten sensitivity that is typically associated with MC.

Many, many doctors have mistakenly informed many, many MC patients that they are not sensitive to gluten based on a negative celiac test result. That simply is not true, because doctors have no way to officially diagnose non-celiac gluten sensitivity. A positive celiac test result can confirm gluten sensitivity, but a negative celiac test result cannot rule out gluten sensitivity. Every patient has to customize their diet to fit their own specific food sensitivities. And note that stress (whether physical, chemical, or mental/psychological) has a major effect on MC. Very intense stress, or in many cases, chronic stress. can even trigger a relapse of symptoms in many cases. Therefore it's also important to find ways to minimize stress, otherwise stress can perpetuate the symptoms.

Treating this disease is rarely easy. For many of us it may be the biggest challenge that we will ever face. It requires major lifestyle changes and discipline in order to achieve and maintain remission by diet. Some patients find it very difficult to accept and adhere to the strict diet changes necessary to control the disease. For them, medications are their only option. And if medications are the only option to be considered, then experience shows that budesonide is currently the most practical choice for treating the disease. But unfortunately it doesn't work for everyone, and even when it does, it loses effectiveness with repeat treatments.

some of us are sensitive to the sugar alcohols, especially sorbitol. Whether or not it's a problem may depend on how much is actually in those pills.

I hope that some of this is helpful.

Tex