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adoptbc4
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New here and looking for help. . .

Post by adoptbc4 »

:neutral:

Hi all,
I'm really happy to have found this forum and have already read most of Wayne's book., as well as a few posts. I'm hoping you can help me figure out a starting point.

Here's my background:
I have two chronic illnesses that are stable but limit my energy and activity level.
In January, I had a round of chemo for a recurrence of gastric lymphoma and struggled tremendously with nausea and side effects ( off work 8 weeks).
I had just started to feel human again in May when I slipped and fell at work, breaking a bone in my back. Two weeks later, constant migraines, nausea and diarrhea hit me like a ton of bricks. After suffering for a few weeks, I went to see my GI dr who suspected colitis.

In the meantime, I started taking Immodium and returned to work with restrictions from the back injury. I was horrified to realize over time that I always had to know exactly where a bathroom was located and how quickly I could reach it, of course. My first week back at work I barely missed having 2 accidents and we are required to wear khaki pants, sigh.
I have a demanding job in healthcare and returning to work with lifting restrictions and colitis was not what I had planned! The colonoscopy confirmed that it is lymphocytic colitis.

I'm not in denial, but alternate between being sad and angry that I have a recurring lymphoma that causes nausea and constipation, and now colitis that causes nausea and diarrhea. I have had all of the symptoms, abdominal pain, weight loss, anemia, bloating, insomnia, and always, NAUSEA.
I have a wonderful supportive husband who is helping me get out the door to work every day. Also the added stress of two teenagers who are emotionally impaired--need I say more?

I would appreciate any and all suggestions to help simplify the process of starting to heal my gut. I return to see my GI on 8/06. My exhaustion and current flare-up has been very discouraging--sick of being sick and tired

Thank you for allowing me to vent,

Robin (53 y/o who feels 90 today)

:sad:
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Gabes-Apg
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Post by Gabes-Apg »

Robin
Welcome - sympathies that you had you find us....

in the early days, I used to have spare set of clothes in a locker at work, and carried a set in the car.... part of the motivation to sticking to the right eating plan is having minimal accidents or need to rush to the loo...

Alot of your symptoms are linked to nutritional deficiencies, like Vit D3, Magnesium, Vit B12. Have you had your Vit D3 and B12 levels checked?

As you may have seen from some of the posts that you have read, going back to a bland, low inflammation, gut healing eating plan is the best starting point. alot of the symptoms will reduce quickly once you do this...

grab a cuppa, and keep reading.
have you read the stories in the member success area? this will give you an idea of what others did, and how long it took...
another good post to read is
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173

Erica joined us a couple of months ago, this is her journey of transition to the best eating plan, embracing the mental changes, emotional changes, acceptance etc and coming out the other side with reduction of symptoms and feeling better...

hope this helps
take care
Gabes Ryan

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tex
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Post by tex »

Hi Robin,

Welcome to our Internet family. I'm very sorry to read that so many things have happened recently to impose on your life. Any one of the issues you are dealing is enough to be overwhelming, so it's no wonder that you are exhausted.

I will assume that your doctors checked for celiac disease, but if they are like most physicians, when your test results for celiac disease were negative, they told you that you could not be gluten-sensitive. That's incorrect. The celiac diagnostic tools used by doctors are so primitive and have such poor sensitivity that they will only show a positive result if the small intestine is severely damaged by years of damage to the villi. Virtually all of us here are very sensitive to gluten, even though most of us would show a negative result on the classic celiac tests.

I have no way of knowing the actual cause of your gastric lymphoma, but if T-cell lymphoma was involved, please be aware that T-cell infiltration is the source of inflammation that causes LC. It is well known among celiacs that untreated gluten sensitivity can lead to intestinal lymphoma. Although I am unaware of any medical research that has been conducted to either establish or rule out a connection with gastric lymphoma, it doesn't take much of an imagination to recognize that there could be a gluten connection. Similar to Crohn's disease, LC can affect any organ in the entire digestive tract, from mouth to anus. So if you are not already avoiding gluten (including tiny trace amounts), please remove it from your diet, because among other things, it will prevent you from being able to control your MC symptoms.

FWIW, I had migraines, persistent nausea, uncontrollable diarrhea, stiff arthritic joints, and various other symptoms when I was reacting. The diet changes resolved all those symptoms, and I am still in remission, 11 years later.

In the meantime, you might want to consider this: some of us wear adult diapers as insurance, if we absolutely have to go out, or work, or whatever. They help to reduce some of the stress, until we can get our symptoms under control. And of course as Gabes suggested, a change of clothes might save the day, if worse comes to worst.

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

Tex (Wayne)
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Erica P-G
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Post by Erica P-G »

Hi Robin :-)

As Gabes mentioned I'm pretty new to this journey but I am finding new ways of helping myself daily. I have a couple thoughts to throw out there, are you able to take Benedryl? I have been told by many nurses, practitioners and Drs it is one of the best in a pinch nausea treatments OTC right now. I know it can create sleepiness in some so it maybe best to take it when you can take a nap or go to bed. The other is do you find yourself dealing with any hormone ups and downs? I am 48 and in the throes of that as we speak and just learned today that the progesterone I have been taking for the last year has bovine gelatin and Soy in it....two things that I react to, so I am in the process of learning if I have any alternatives available to me.

Also eat lots of protein....Turkey, turkey and more turkey, along with everything else Gabes and Tex said above.

One uplifting note is where I work they made Falafels and I asked them every ingredient that was in it and I could HAVE it, I was so elated! So I added it to my home made Cornish hen bone broth noodle soup I brought with me, was the best lunch ever :grin:

Keep asking the questions...I love this support group! You will feel better soon :wink:
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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Post by Lilja »

Hi Robin,

Regarding the constant nausea you feel. I think this was the worst thing about the disease: the awful nausea no matter what I ate and what I did.

Until I got some very good advice from Tex (as always). After having followed his protocol of B-vitamins, my nausea disappeared after a few weeks. We lose a lot of vitamin B, due to malabsorption and medications that deplete the vitamins.

When you get the time, you should read this post:

http://www.perskyfarms.com/phpBB2/viewt ... highlight=

Best of luck,

Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
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ldubois7
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Post by ldubois7 »

Robin,

I feel for you! Your story reminded me of whenmy MC journey began three years ago.
I was an elementary teacher (K-3), and the panic I lived with as far as making it to the restroom was very very stressful.

The stress makes things worse, too. Everyone around you expects for you to do the same thing you've always done because you look the same on the outside.
But, your life is upside down right now. Share with others and maybe you can get some help. Try to take more time off work, if possible. I did better when I just ate my safe meats, and a small portion of well cooked veggies. Drink water. The simpler your diet, the quicker your gut can start to heal.

We know how you feel. We are here to take the journey with you. You are not alone.

💚
Linda :)

LC Oct. 2012
MTHFR gene mutation and many more....
adoptbc4
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Thank you, everyone for your replies. . .

Post by adoptbc4 »

I so appreciate the advice and feedback! I wanted to respond to everyone individually, but was up again all night, so one post it is :)

I have not been tested for celiac disease, but will ask my GI about that tomorrow. Wayne, my lymphoma
is a rare type that is caused by and continues to recur due to my drug resistant H. Pylori. So my poor gut has more than a few reasons to be churned up and that is another reason for my persistent nausea.

I'm sticking right now with a few meats, veggies, rice, and occasional banana, almond milk, and a little almond bread. I can eat hard boiled eggs, correct? I'm at a loss as to breakfast foods that appeal to me right now due to the overwhelming nausea--used to love breakfast!

Another question, if I take Immodium twice a day, 4 days a week ( workdays) how on earth will I ever go to the bathroom normally? It really constipates me, but if I only take 1 pill, I can't function at work due to the diarrhea.

I'll look into the vitamins and continue to read on this forum--a wealth of information--thank you!

Robin
:grin:
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tex
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Post by tex »

Robin,

General Mills makes 6 different types of gluten-free breakfast cereals (Rice Chex, Corn Chex, Vanilla Chex, etc.). They are good with almond milk. Be sure to look for the gluten-free label though, because they also make Wheat Chex, and possibly other types that contain gluten.

Maybe 1 and a half Imodium pill might work. Eventually, as your gut begins to heal from the diet changes, the D will cease to be a problem.

Regarding eggs, approximately half of us are sensitive to eggs.

Incidentally, are you aware that there is some evidence that H. pylori can be protective of allergies, food sensitivities, and even celiac disease? That's not an iron clad rule, and I would guess that it doesn't apply if MC is diagnosed.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
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Post by Gabes-Apg »

almond bread might be a bit too harsh in the early stages of healing.
double check the almond milk, for any soy ingredients

stick with safe proteins, and well cooked veges.... (no more than 3 veges)
Make some home made bone broth, cook your veges in it, this is full of gut healing goodness.
make a stew with the bone broth, few veges and safe protein.

if you get onto the foods that are right for you, you will feel better way quicker!
meat and veges 3 times a day is not forever, but it works soo well in the early days. Especially where there is demanding jobs, stress, etc

are you taking Vit D3? or had the level checked - this is crucial for managing inflammation levels and healing...
Gabes Ryan

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Dalai Lama
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