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Cran3
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Post by Cran3 »

Hi, everyone!

My name is Stephen. I'm 24 years old and I live in Seattle, WA. I've been peeking at this website for almost a year now and I finally decided to post my story in hopes that someone may help.

My earliest symptoms started at age 15, after having many uncomfortable constipation reactions to foods like pizza, beans, milk, ice cream, etc. Everyone assumed it was because I was lactose intolerant but it also seemed to happen if I ate a burger without cheese or even spicy foods like buffalo wings. For the longest time, I assumed it was IBS because I was young and Google was available. I went and got checked, and my doctor also assumed it was IBS and told me to stay away from the foods I thought were causing trouble. I did that with little progress, and I was young and my body was changing. I also was a teenager and loved my pizza, I just endured the symptoms. Instead of having constipation, I began to have diarrhea more frequently. It was a running joke with my friends that I never had to use the bathroom, but that soon became the opposite.

Fast forward to college, I turned 21 and noticed that wine and other alcohol gives me horrible runs. I saw a new doctor, and he gave me medicine to help with IBS specifically, but it also made it harder for me to urinate and I didn't like that at all. I still had diarrhea without the cramps.

It started to finally get to me after many years of eating nearly anything that I was still getting diarrhea losing weight, getting fatigued more often, and I just didn't feel the same anymore. I also got a little tired of everyone commenting on my weight, as I was near 115 at one point. Naturally, my mom expressed her concerns and constantly tried to get me to go to a new doctor, but admittedly I was afraid because I was starting to think I didn't have IBS, but I also didn't think it was life threatening since it was nearing 7 years later and I wasn't dead yet. I'm pretty stubborn sometimes... :oops: It also didn't help to be on a college budget and eating university food...

I finally made a visit to a GI doctor and got a colonoscopy in December 2016, with my doctor telling me it was indeed IBS, and we would make an appointment when he got my lab results back to discuss anything further. For the next 2-3 months, I didn't hear anything back and assumed I was in the clear. I called for a follow-up and when I went to see him he asked me how my medication was working, but I was confused. Long story short, the office didn't properly contact me, nor did he tell me to my face until then, but I was finally diagnosed with Collagenous Colitis. I truly thought I was going to die, but he told me that it's better in some ways because it's treatable. However, he prescribed me some Budesonide and told me to just take it and hopefully, I'd be good after 3 months. That didn't happen.

I moved to Seattle last summer, and I took the medicine as prompted, but I'm a bit more knowledgeable now on why it didn't work after I stopped. I am seeing a new GI out here and she is wonderful, but I am still having trouble and I'm on the verge of a breakdown trying to figure the next option. I mainly eat tuna and salmon with brown rice and have eliminated gluten, dairy, soy, nuts, shellfish, and eggs for the time being.

It's been so difficult and I still have many negative reactions. Every once in a while I will have a normal solid stool and I celebrate internally although it doesn't last long. I'm a very positive and upbeat person but oh man does this process suck. I go to the gym 4 nights a week at least, and I see my progress coming through, which is a bit of hope since my body is absorbing protein I put into it.

I wanted to join this forum so I could talk to other people like me and stop relying on what people think they know to help me when they are really talking about something else like just Celiac, Crohn's, etc. I do realize that everyone is different and our bodies all have different triggers. It's just getting really old to go into a store and check the ingredients to something and almost have a breakdown every time because it's just another thing I can't have. Changing a diet is a huge mental struggle and something I have a really hard time with.

I'm also considering being a Pescetarian. Chicken and turkey are good but I'm not really as big of a meat eater as I am with tuna and salmon. I think I need to try a proper elimination diet, as I just cut out many foods to see what would happen, without even knowing if they cause a reaction. Except dairy and spicy foods. I know that for SURE.

Anyway, I've rambled on long enough. Getting this all out has helped me already. It's a pleasure to meet you all. :)
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tex
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Post by tex »

Hi Stephen,

Welcome to the group. Yep, this disease isn't much fun. It alters our lives and tries to dominate our thinking if we let it, but the symptoms are controllable in most cases if we are willing to track down our food sensitivities and eliminate them completely from our diet.

If you are going to do an elimination diet, keeping a journal with a record of what you eat and how you react will help you to detect foods that might not cause prompt or obvious reactions. At your young age, it will be a huge advantage to be able to control the symptoms without taking any medications.

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

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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Cran3
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Post by Cran3 »

Hi Tex,

Thank you for that. It's reassuring to hear some good advice and words of wisdom. I'll definitely get going on the elimination diet and start the journal.

Glad to be here! :grin:

Stephen
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Erica P-G
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Post by Erica P-G »

Welcome Stephen,

I know you are just starting out and that you need to distinguish a good safe food plan, which includes becoming gluten, dairy, potentially soy and egg free also. Since you do have a diagnosis of CC and it hasn't been to long ago I have added two links worth looking into that may be something your body is missing and could help you on your daily healing process.

Also be sure you are getting your foundation of VitD3 and Elemental Magnesium program going as well, that is very important.

I feel I am breaking food down and digesting it much better in the last 6 days after starting the items posted below than I have in the whole time of learning how to heal my own gut with LC. As with everyone on this forum, we are all different, and this may be something you consider a few months or years down the road, if you do not see your safe foods working in your favor (they may just need to be broken down even more in order for your body to handle them).


https://www.mygenefood.com/saccharomyce ... probiotic/


https://wellnessmama.com/36209/betaine- ... mach-acid/

You are so young, but at least you have come to a great place to learn how to get your life back!
Cheers
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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Cran3
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Post by Cran3 »

Hi Erica,

Thank you for all of this. It really means a lot to have such a warm welcome and I feel better to know I'm not alone. Missing out on VitD3 was a big concern of mine to begin with, and my mom and girlfriend both are concerned about me getting proper nutrients too. I had no idea about the Elemental Magnesium so I will look into that as well.

I'm beginning to wonder if I have a leaky gut that needs to be contained on the side of my CC? I made salmon last night with coconut oil and that turned out fine on me. It's all trial and error I guess.

Thank you again, I love the atmosphere here already! :)

Stephen
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tex
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Post by tex »

We all have leaky gut (when we're reacting). That's the cause of the food sensitivities.

I was going to suggest that you learn to cook so that you can minimize processed foods in order to expedite your healing, but I see you're doing it already. Good for you. Eating whole foods cooked from scratch eliminates all of the troublesome ingredients found in most processed foods.

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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Erica P-G
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Post by Erica P-G »

Your welcome Stephen, I also wanted to say that the magnesium can either be external and/or internal depending on if it gives you diarrhea. External will not give D. So some people will soak their body or feet in Epsom salt or apply magnesium lotion or spray oil. Internal the one most recommended is Magnesium Glycinate as it will not cause D unless you take a whole bunch of it at once. Most people take 5000iu VitD3. And for men the daily dose of magnesium is 400 mg a day, but you may need 400-500mg spread out thru the day.

Leaky gut is what created your CC and it was most likely due to the gluten intake or perhaps a medicine?? I attributed my Dx of LC to lots of stress, and over consumption of gluten products plus I had lots of antibiotics during my lifetime. So it all added up for me by the time I turned 40, that was 10 years ago and I just started healing myself 3 yrs ago. So I know we can all get our life back if we try, have patience and accept we need to change a few things in order to feel good again 😉👍🏻

So glad you are comfortable here! Feel free to ask anything.
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
Maximus74
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Post by Maximus74 »

Hi Stephen,

Welcome to the forum. As Tex noted, being able to cook is a necessary skill, even if it's just being able to boil things up, as all processed foods will have ingredients that are potential irritants. Over time you can build a better understanding of what works for you but that will be really hard to do on processed foods as it might not be the primary ingredient that's making you unwell but one of the additives. I have issues with corn and soy so I have to make sure that if I eat processed food that none of the additives/preservatives are derived from these items.

It's great that you've worked up the courage to join and I encourage you to get Tex's books (top right corner) as well which will help consolidate some of the information you'll find here on the forum.
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carolm
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Post by carolm »

Hi Stephen, welcome to our internet family, although I’m sorry you had to find us.

I have a couple of suggestions:
Be careful when you choose vitamin supplements that they are free of gluten and soy (which often shows up as tocopherols). I take Drs Best Vit D3 and Drs Best Chelated magnesium as do others here and I tolerate this brand well.
When I did an elimination diet, I treated it like a research study. I ate only my safe foods (baseline) then added only 1 new food. Keeping everything else the same, I tried a small portion of the new food. If I was okay the next day, I ate a serving again. If I tolerated it I ate another serving on day 3. If I had no reaction after 3 consecutive days then it went on my list of safe foods. Then I’d drop back to my baseline safe foods for a couple of days before challenging another new food. Keeping a food log will help you keep track of foods and reactions.
Be aware too that fiber may be an irritant to your gut so you might have to substitute something for the brown rice if you find you are reacting to it. In my case when I was reacting my diet had to be sugar free, low fiber, no caffeine, and low fat too. I just had to eat very cleanly- baked chicken, turkey or fish and over cooked (soft vegetables) like carrots and green beans. I could tolerate red potatoes but not everyone can tolerate potatoes. The fewer ingredients the better. A slow cooker/ crock pot can be very helpful when you are doing so much cooking at home. I tolerated seasonings well, like sage, rosemary, thyme... you just have to try and see.

The other thing to be aware of is that seasonal allergies, lack of sleep and stress can also bring on reactions. Pace yourself and listen to your body- rest when you need to. It can take 2 years to heal the gut and that’s the journey you are on. As you can see you are not alone.

Best wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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Post by kroekatoa »

Hi Stephen! Loved reading your story because we definitely have a lot in common. I can totally empathize with you regarding most people trying to give you advice more suitable for IBS/Crohn's/ulcerative colitis. I know a LOT of people with Crohn's and ulcerative colitis in RL and it's true that MC is a different beast entirely. I've had symptoms of MC since I was born, and my friends also made fun of me for having to go the bathroom frequently and often joked I was pregnant because my symptoms were worse in the morning like I had "morning sickness." :razz: I had a colonoscopy when I was 16, and another this past year at 21 because my symptoms got worse during college too- a definite testimony that this disease is highly connected to stress. I feel you on the difficulty remaining positive... but joining this forum will help you immensely, as well as just being open about what you're going through with your family and friends. I lived for years TERRIFIED every time I said "I'm going to the bathroom" and one of my girl friends would say "let me come with you" ya know, cause girls always go in packs to the restroom. I was mortified when I had to use the restroom at my high school boyfriend's house because I didn't want him to hear me poop/fart or smell it afterwards. :lol: But since I was diagnosed and started being sarcastic about it and cracking jokes at myself things got a lot better. Now I poop in public without shame or without waiting until no one is in the restroom to let it out. I openly talk about how I'm feeling day to day, and I find people are actually really understanding of it and don't always find it gross and weird. I can't even tell you the last time I had a solid stool; maybe when I was five years old I remember looking in the toilet and thinking my poop looks like how it does on TV and thinking THAT was weird! So hopefully that makes you feel a little better lol! Welcome to the forum!
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Cran3
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Post by Cran3 »

Thanks again, everyone! It really means a lot. :grin: I actually just got some bloodwork done Tuesday and I'm getting tested to see if my body is missing any essential vitamins or nutrients so hopefully, that'll get me on the right track.

@Carol, I've also been hearing a lot about the VitD3 deficiency and I'm going to look more into that once I get my blood results back. My girlfriend and I are looking into getting a crockpot because I was trying to find gut healing dinners to stop the leaky gut, and almost all of what I found were crockpot bone broth recipes. I actually cut out high fiber like beans a while back, and I'm using white rice all the time. I've been hearing good things about black rice, but I want to look more into it first. Asian food seems to resonate with me the most when soy and gluten aren't present. Thank you for the recommendation. :grin:

@kroekatoa, I've been through most of those scenarios myself, (not the pregnancy one but) I know what you mean! It used to be very embarrassing to go to the bathroom in front of other people but now I don't care as much. I'm glad now we can embrace what we have to make the best of it. For example, I'm using this as a blessing in disguise to say that I am very careful about what I'm putting in my body. I no longer eat any artificial sugar, and 90% of what I eat is organic. :grin:

-Stephen
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