Advice/Help Please Newbie

[Gabes-Apg]

if my skin is flaring the coconut oil is also helpful further back, whether you have D or C, it helps the skin cope with BM's

the main thing that will help for the LS and the MC is the bland, low inflammation eating/drinking plan, also stress management.

in line with all the diet changes you are making, you have to do a bit of mental and emotional work as well, acceptance, peace with what is, grieve the loss of favourite foods/cuisines, embrace the changes with willingness, if you react to stress, make time to calm the mind, calm the body each day.
There are loads of podcasts (free!) audiobooks etc that you can listen to.
I play them while I do my weekly cook ups or when doing housework. Some of the audiobooks I have played over 100 times. Each time i get a different meaning. You dont have to listen intently, just have it in the background and 'go with the flow' of what takes your attention. Sometimes when something takes my attention, I will pause, listen and then a few minutes later keep doing the chores...
Also podcast interviews with people that have overcome challenges, doesnt have to be health related, it can be sport, or career or someone that takes your interest.

if your Vit D3 levels are good (it would be handy to know the number as doctors interpretation of good, and our interpretation of good can be slightly different) then current form is ok.
when I was really bad, i used a lingual form to optimise absorption, now that my gut is alot better, tablet works fine (plus I spend time in the aussie sunshine everyday)

[tex]

i'm really trying hard not to drink so much Pepsi:) Daily struggle, but i will get there.....and even now, they taste too sweet to me most times anyway.

When my symptoms started, I was drinking at least a half dozen or more Cokes every day. And when I was on a trip, I drank even more, because I drank them instead of water (or anything else). Since I seemed to be sensitive to corn, and cokes were only available with high-fructose corn syrup sweetener, I stopped drinking them for about a year and a half while I was recovering. After I started adding foods back into my diet, I found that I could tolerate corn again, so I tried a Coke. To my amazement, it tasted so sweet that I didn't care for it at all, so I didn't resume drinking them.

Tex

[Kate0129]

Gabes Ryan,

Thanks for all this great advice.....that is an excellant idea, to listen to audiobooks...i will look into getting some for sure!!! I accept what it is....i have had these symptoms since 1984.....I am now 49 yrs old....it's hard to accept sometimes, but i do. I know my limits, but i am a very stubborn gal, just ask my husband:) , and tend to tempt fate...not so much anymore though. I can't win like that, and i have figured that out the hard way unfortunately. But I am alot nicer to myself now, and take the time to take care of myself alot better.

I am going to call the doctor to find out exactly what my Vit D level was at last check~My ? is i wonder if i should be using the spray Vit D w/K2? I just ordered the Mag spray that Erica suggested, and it arrived today!!! Should i expect any side effects from this spray? I'm a little scared of it, but hoping that it will be fine and work well for me. Enlighten me please:)

Tex~ i absolutely know how bad Pepsi is for me....as i stated above, the stubborness gets me everytime. I am slowly letting them go. And like you, they seem sooooooooo sweet now to me after drinking more water. I have some gingerale mixed with a small amount of orange juice, is this bad? I did it for the potassium. And you know i would have never even thought of the high fructose corn syrup being in there, and hello, i cannot eat corn, in any form, so it makes so much sense now. Wow.......yall are some smart people on here!!!!! Thanks for letting me in on that!

I've been eating alot of white rice, chicken, hamburger (plain) w/salt.....i'm about chickened out though, whew....but i will continue. Next time i'm at the store, i'm buying a turkey breast.....I am determined to get this under control.


TEX~ 1 last question~ Would it be worth my time and money to see a dietician? I have an appt. on Oct. 6th, but was just wondering if i really need it or not. Thanks!

[Erica P-G]

HI Kate,

The magnesium will not hurt you, with the spray you may feel a bit of a tingling or stinging sensation at first, but you can massage it on the skin and that usually stops that feeling. After you let it soak in for a good long spell, I wipe mine off with a wash rag. You should only see positive side effects Don't be afraid and do it morning and night.

As far as the K2 part of things the more I read about it the more I am finding it may not be necessary, so I am only using a lingual D3 spray 5-6000 mg worth every day.

Breath....and it sounds like you are on the right track It will take a few days to notice a difference depending on how depleted your Mag has been in your body.

Hugs
Erica

[Kate0129]

Thank you Erica!!! Do you get the lingual spray from Vitacost as well?

[Erica P-G]

I've been getting mine at Mercola.com....but I did order one recently from Vitacost.com to try, so the verdict is out on who I will continue to purchase from

Your very welcome,
Erica

[Kate0129]

Ok, thanks so much Erica......i really appreciate all your advice and opinions!!!

[Kate0129]

9/08/2015 Vitamin D, 25-Hydroxy, Total, Serum Vitamin D, 25-Hydroxy: 47.7 NG/mL Final


This is what was on my report from my doctor about my Vit D.....is this good, normal, low or what?

[Gabes-Apg]

at that level I would say 'okish' having conditions that react to inflammation (which depletes Vit D3) it is good to ensure it is in the higher range of good.

Also - if you have a period of major stress, levels can drop very quickly in a short period of time (ie go from high to mildly deficient in a 3 month period)
Starting the magnesium spray, and maintaining supplementation for while, especially as you make the diet changes and your body adjusts...

[Kate0129]

Gabes Ryan,

thank you again! Gosh i don't know what i'd do without yall on here.....much more info than the doctors give you or even know. So high five to all of you. I will start my mag spray tonight before bed then, and then continue on in the morning and night. I'm looking forward to knowing i have the right amount in my body!!! Boy do i know all about stress!!! I have gotten rid of tons though by moving to the beach:) And not having to work!!! Thanks to my fantastic hubby that is!!! So right there is 90% of my stress levels gone!!! But living with my health issues i guess there will always be "some" stress around.....however, less is better right! Right now, life is pretty good.....just get this mess under control and it will be even better....and thanks to you all, i might just get it accomplished!

Thanks again sweet girl!!!

[tex]

Kate,

If the orange juice doesn't sour your stomach or cause D, it may be OK. Some of us can't handle much citrus juice while we are recovering, but small amounts might not cause any problems.

TEX~ 1 last question~ Would it be worth my time and money to see a dietician? I have an appt. on Oct. 6th, but was just wondering if i really need it or not. Thanks!

Unfortunately, it's just about impossible to find a dietician who knows anything about treating MC patients, unless they happen to have the disease themselves (which would be extremely rare). A few are familiar with Crohn's disease or UC, but what works for those diseases usually won't help much for MC. IOW, many of the foods they tend to recommend cannot be tolerated by most MC patients. With few exceptions, most members here who have consulted with a dietician have been disappointed in the results.

You're most welcome,
Tex

[Kate0129]

Thanks Tex I figured as much about the dietician anyway, but just thought i'd ask to be sure.....my main thing is this...i know what foods i basically cannot eat, but i just don't know about all the supplements i should be taking. I def know Vit D, Magnesium, and Potassium....but wasn't sure about anything else i needed in my body. I don't want to leave anything important out of my daily doses.....

[mcardle3]

Hi.....

My name is Kate....i'm have not been officially diagnosed yet, but through research and just knowing all my symptoms, i think i may have some form of colitis. I'm feeling very very scared & lost right now. I have been dealing with stomach issues for 25+ years. Have had 2 colonoscopies & 1 endoscopy. I don't believe my gastro doctor biopsied for MC. I am very fearful of having another one now...it's been about 5 years since my last one. I am dealing with daily watery diarrhea, very low cramping/weird feelings in my colon. I stay tired all the time. I cannot hardly eat much at all. Naturally with all that diarrhea, my vitamin levels are extremely low. I am taking Vit D supplements. I take pepto and immodium sometimes. The pepto helps some, but doesn't stop the diarrhea, the immodium will stop it usually, but then i'll be constipated for too long, and then a diarrhea relapse worse than before. I'm just feeling so scared that something horrible is wrong with me. I know i need to get to the gastro doctor again, but i also have panic disorder along with emetophobia....so it's very hard for me to do this again. I need some help here, advice, comfort, anything. I would greatly appreciate. I have recently tried to start going GF...i do not eat dairy, any vegetables, any fruit, no spicy foods. Basically my diet has to consist of meat, potatos, rice, pasta. I cannot eat anything green at all, goes right through me. Sometimes i feel so hopeless i would rather not even be here anymore. I would never do anything like that, but it's just the way it makes me feel sometimes. Helpless, and hopeless. I went to a doctor this am, and am having my vitamin levels rechecked. I have been hospitalized twice for such low potassium/magnesium and calcium. I was on IV's for 4 days for it. I had diarrhea so bad and couldn't eat or drink. Very scary stuff.....thanks for listening and i'll take any advice you have for me.

Kate,

I'm Karen and I'm new to diagnosis and just found my way here myself.

I read your post and that bit, "Sometimes i feel so hopeless i would rather not even be here anymore. I would never do anything like that, but it's just the way it makes me feel sometimes. Helpless, and hopeless. " screams me at times. I think we've found a good place to land. I've not had the time to read through all the posts in this thread, but know that I'm here with you, cheering us both on.

I've gone gluten free so far, and next week will be on the old turkey and tater diet for a few until I get this figured out. The idea of turkey and taters for breakfast/lunch and dinner for 2 weeks sounds less than exciting, but think of the things we can do with taters. We can fry a few in olive oil, roast em, grill em, mash em and make some sort of funky conglomeration of turkey and tater casserole (can one make a casserole with just two ingredients?)

If you'd like, we can do it together and see how we do. I'll report, you'll report and before you know it, and who knows...in 6 to 10 months perhaps we'll have this thing figured out.

I want to hug you. I feel the same things right now.

I read here and get overwhelmed, freaked out AND uplifted. It's quite a ride.

I'm sitting in my office crying right now because my abdomen hurts to bad, I'd take pain pills but figure they'd be on that massive "NO NO" list of things to get away from.

Yep, I'm in...whole hog. I'm here if you need to talk of if you want a phone call some day...I can do that too.

Soft hugs (because our guts hurt...if they didn't I'd hug you hard) and we can do this...it isn't going to be easy, but we can!

Karen

[Kate0129]

Thank you Karen,

You are so ride, this is quite a ride for sure.....i am so grateful for finding this wonderful support site and for all the caring people on here. It's a God send for sure.

I'm so sorry you are in pain today:( No good at all....i don't have a lot of pain, thank God, but i do experience an overwhelmingly amount of diarrhea....and pain occasionally. Pain pills no good for us, unfortunately...or i would be taking them too. It just seems so unfair to have to suffer, and not really be able to do anything much about it. It makes no sense at all...this disease. I hate it....Soft hugs to you too dear....we are all in this together.

I'm on a rice kick....i think i'm potatoed out for a while....i do love potatos in the oven though, with olive oil and salt.....yum! I could eat those many times a day!!!!! I use lactose free butter some too....hard to tell if it really works or not, but i use it anyway:) And yes, you can make a casserole with 2 ingredients:) We can anyway:)

Tell me about how you got diagnosed? I have not been officially diagnosed yet, but my "gut" tells me i already know.

[tex]

Thanks Tex I figured as much about the dietician anyway, but just thought i'd ask to be sure.....my main thing is this...i know what foods i basically cannot eat, but i just don't know about all the supplements i should be taking. I def know Vit D, Magnesium, and Potassium....but wasn't sure about anything else i needed in my body. I don't want to leave anything important out of my daily doses.....

Usually, while we are trying to recover, the fewer supplements we take, the faster we are likely to recover (because so many supplements contain ingredients that can make us worse, or prevent us from reaching remission).

After we are in remission, and our digestive system is working better, then we are better able to balance out our nutritional needs. While we are still reacting, most of what we eat goes right through us anyway, so it does little good to worry about proper nutrition until after we get the inflammation under control.

In your case, since you have been reacting for many years, the vitamin and mineral supplements that you mentioned are probably a good idea, and if I were in your situation I would continue to take them. And then after I reached remission I would decide whether I needed any additional supplements, based on my diet at the time.

Tex