Two Years - Remembering Fear, Frustration, and Exhaustion

DJ · Post by DJ » Wed Jun 10, 2015 5:04 am

I am now two years post-diagnosis. I found this site the following October, 2013. I just looked back on my first post and it certainly told the short version of the whole story. By the time we get to this site, we are entirely worn out. I was exhausted, traveling for a living, and trying to figure out what to eat. Once I found this site, I visited nearly every day. Each person had a different experience with a common theme. The initial theme, of course, was a complaint of extreme, frequent, watery diarrhea with dehydration and exhaustion. The recovery theme seemed to be that people could not eat gluten at all and often could not eat dairy, soy, and eggs. Many people had other food sensitivities also. Others experienced the extreme exhaustion I was feeling. Some said it took a long time to improve their energy level but that it eventually improved. It gave me hope. I listened to the stories of others and came to an understanding that the key to recovery had a common theme but beyond that, the path would be trial and error.
I always had gut problems so I had done an elimination diet in the past. From that I learned that I had difficulty with gluten, dairy, soy, eggs, etc. As time passed I learned that I could not tolerate tapioca and xanthan gum. Being on Entocort allowed the diarrhea to calm down, giving me time to LEARN how to eat. I weaned off of Entocort very slowly, making my own lower dose pills by emptying half of the contents of Entocort capsules into blank capsules found in health food stores. It's been a long journey. Gluten is everywhere.
I eventually changed jobs from a traveling job to an office job. Eating in restaurants is very high risk. My energy level very slowly improved. My blood pressure was dropping very low after dinner to the point that I had to lie down. I rarely need to lie down after dinner now but my energy is limited in the evening. Prior to MC, I had a very high energy level. Now I have to be very careful to avoid overextending myself but I'm far more functional that I was two years ago. I've learned that being polte is not top priority. I took time, but now I never eat food offerings to be polite! People try to accommodate me at times but they don't know how. How could they?
My journey continues. I continue to look for new foods and new ways of preparing what I eat. I continue to look for new ways of eating away from home. Travel is challenging. I may buy a camper when I retire so I can carry and make my own food. I spend very little time in hotels now but when I must visit a hotel, I use a location that has a kitchen. The major chains (Marriott, Hilton, Intercontinental) all have a brand with a kitchen.
I visit this site occasionally now. I have tremendous warmth and appreciation for the people who helped me. I don't like to think about what my life would be like without the information and support I found here.

Post by **tex** » Wed Jun 10, 2015 8:27 am

DJ,

Excellent post, with some great insight. And I certainly agree with you that we will surely be fine-tuning the ways we deal with the disease for the rest of our life.

Thank you for sharing your thoughts and your very helpful insight.

Tex

Erica P-G · Post by **Erica P-G** » Wed Jun 10, 2015 10:40 am

DJ, I wish there was a like button for your post

I feel the hill getting a little steeper now, and everything you said I've felt most of them, but I still need to heal, have a Norman, and learn which foods I CAN eat. This syndrome certainly has given me a setback to life right now.

Travel, I wanted to, that was in my 30's when my husband and I dreamed about how we would spend time when our kids moved out...that doesn't seem to be a very real dream at this moment, maybe one day, but it wont be the traveling I was hoping to do like going to a different country, heck even going to Hawaii being a US state could have it's issues. I suppose if I am able to think about this topic one day I will know if I am capable of traveling, I can only wish so. We have a small ToyHauler perhaps that is what I need to be happy with and just be happy in general that this condition isn't more dire than it is.

Thanks for the post,
Cheers

Erica

Gabes-Apg · Post by **Gabes-Apg** » Wed Jun 10, 2015 11:54 am

DJ
Beautiful post....

I think the two year mark is a good stage... so glad to hear of the improvements etc

Travelling takes a bit of planning, but is worth the effort!!
Camper is an awesome idea. Can I join you on the trip??

Wishing you wellness and happiness for many years ahead.

Sheila · Post by **Sheila** » Wed Jun 10, 2015 3:00 pm

Thank you for the great post, DJ. I check in to the site pretty regularly because I still feel a connection to Tex, Polly, Gabes and all of the other Potty People. Without this site and the help I received, I would still be sick. My youngest son is now showing signs of MC and I'm hoping he will visit and listen to the experts. Mom's advice tends to be ignored.

My diet is pretty well fixed. I've given up experimenting after lots of disappointments. However, zucchini noodles are a new favorite and a welcome addition. My energy level isn't what it used to be either and that's just the way it is.

So glad you're doing well.

Sheila W

DJ · Post by DJ » Wed Jun 10, 2015 4:42 pm

Tex, As you can see by my post, you rank very high on the list of supportive men in my life. My husband ranks number one. He has helped me through this PLUS, his #1 ranking is in the contract

Erica, You will heal! M/C gave me an excuse to eat lots of bacon. Eat bacon! Can you eat potato chips? Be sure they don't contain soybean oil and eat plain potato chips. Unless you have high blood pressure, don't worry about the salt. The fat is good for you right now. I visited Hawaii before M/C and stayed in a hotel with a kitchen. I think dealing with M/C in HI would be similar to here. If you visit foreign countries, avoid countries with foreign languages. Rent an apartment and shop in a supermarket. Read labels! I'm already taking "mental vacations" in preparation for retirement. I went to Australia (mental vacation) last weekend. I actually found apartments on line. One of the apartments advertised as a fisherman's dream. Fresh fish! I'm headed to San Francisco and the Redwood Forest soon (really). We will fly, rent a car, buy a cooler, and cook. It's more effort but we are ok with it. If I had to do it frequently, I would be far less enchanted. My husband has recently lost 35 pounds by eating meat and veggies. We eat in a similar way now. Concerning your children, if you find them exhausting, eat them!!

Gabes, Thank you for your support during the M/C Flood of 2013. I was on "mental vacation" in NSW Australia just last weekend! If I make my way there in real life, I'll look you up and invite you to my rental apartment. I will offer you tea or coffee with bacon and potato chips. You will be one of the few people who understand me.
Sheila, I completely understand your feeling of connection to the people who helped you. I feel it too. I hope your son gets checked. I recently had the same conversation with my son. Unfortunately, he is following in my footsteps.

I also have an older sister who has likely been seriously damaged by gluten. She's the poster girl for autoimmune illnesses. She is too sickly now to even consider change. My grandmother had the symptoms too. We are fortunate to be armed with information and support. I hope your energy level continues to improve.

Erica P-G · Post by **Erica P-G** » Wed Jun 10, 2015 4:56 pm

Oh DJ, you made me laugh, what a perfect way to end this day. Your optimism is contagious and puts a smile on my face. I absolutely love the 'mental vacations'.

Thank you, thank you for the kind words, an broke out in a huge smile referring to eating the kids..LOL ;-)
Erica

DJ · Post by DJ » Wed Jun 10, 2015 6:09 pm

Hi Erica, I'm happy to hear that you find humor in eating the kids. We MC'ers are all hungry carnivores. Be sure to the kids are aware of that, and if they fall out of line, show your teeth!

On a more serious note, along with learning how to fully eliminate gluten, I spend time rearranging my thinking. As we all know, life has chapters. We begin with ideas of how life should be and where life will take us, then life takes us to an entirely different place and we need to learn adaptive skills along the way. My "mental vacations" are fun and adaptive. I'll eventually use the information for real excursions.

Greengoddess · Post by **Greengoddess** » Thu Jun 11, 2015 3:32 am

The title says it all. I think the effects of this on the mind are as difficult as the body. My GI said in a casual way that most MC sufferers spend a lot of time being anxious about their illness. All these tests....

On the other hand there is a lot of humour on this site too and somehow we have to learn to laugh at ourselves. Who else but a traveling mcer would go into a state of near ecstasy to discover a GF entire eatery next to their hotel! Travelling is more difficult and requires strategic planning.
The site is an important place for many reasons. Not least to give us a sense of control. I also believe there is a great deal of research material available potentially in it.

My biggest memory is of course reading Tex' book at 2am in a hotel and realising that, no I did NOT have to go to a hospital right then and there and YES I needed a colonoscopy and YES I needed to insist on a biopsy.

DJ · Post by DJ » Thu Jun 11, 2015 4:49 pm

Hi Greengoddess,
I agree that laughter is important. I didn't find humor in pooping my brains out several times a day but I found comfort in finding others like me. My sense of humor is returning. I'm pooping circus clowns now ..... hahaha

I agree that Tex's book is a great fast track to understanding MC. Doctors should own a copy!

Gabes-Apg · Post by **Gabes-Apg** » Fri Jun 12, 2015 2:26 pm

DJ, depending where in NSW your Fishermans dream unit was, it may have been nearby to me!!!

I currently live near the coast, and my brother has a holiday house in a fishing town. During the summer if he went fishing I would get fresh flathead fillets, caught that day. (Which sell at the farmers markets for $47 a kilo) Keep up the planning!!! It's a long plane trip to get here but soooooo worth it!!!

Getting to the USA is on my wish list...

Patricia · Post by **Patricia** » Sat Jun 20, 2015 10:27 am

Plan that trip to the USA, Gabes!

You are more than welcome to stay with us (and eat MC safe food)!!! I am sure many more grateful MC'ers would open their homes to you! This will be the MC version of Airbnb or Homeway, but it will be free and include safe food

Love, Patricia