13 Months Post-Diagnosis and Treatment

DJ · Post by DJ » Wed Jul 16, 2014 8:57 pm

Hello All, It's been a while. I last posted in early March when I finished weaning off of Entocort. With my extremely limited diet and exhaustion, my traveling job became quite impossible. The short story is that I applied for a Reasonable Accommodation and I was granted a job change. There was a price to be paid but it all worked out in the end. I had to continue traveling to complete my first job while starting the second very intense job. So, for a while I had two jobs. Now I have one and my traveling days are over.
My exhaustion has improved a little bit but I'm not back to myself yet. I'll happily take the improvement.
The diet gets easier as time passes. I even eat out once in a while at a Chinese buffet. I eat boiled shrimp with my own cocktail sauce, steamed rice, cantaloupe, and jello. It allows me to eat out with my hubby once in a while.
I've fallen of the wagon only once since early March. I ate french fries at a concert. Frying oil is usually partially or completely soybean oil. The short story is that it didn't go well and it took a while to bounce back. All that for french fries that were not as good as my own.
My ability to eat fiber has improved considerably. I eat all cooked fruits and veggies in almost any quantity. I have not tried raw apples or grapes lately because I had problems the last time I tried but I eat many raw fruits. If I get too carried away with fruit it can be a problem. I don't eat raw veggies yet with the exception of small amounts of baby lettuce.
My severe cough is back but I can control it to a degree by controlling my food and liquid volume. I think my upper GI damage is more severe that my colon damage and will take longer to improve.
My doctor took me by surprise at my recent visit. She said; "Sometimes patients have to figure things out on their own and that happened to you." I told her that I have two list of food that I can't eat. One list is a forever list and the other is a list of food I'm working toward eating. She said that she agreed that I will "unfortunately have a forever list". Not only did she take the time to research MC, she was totally up front. Wow!
I think of Polly's words often. She said it took her two years to feel like herself again. It gives me hope that my exhaustion will continue to improve. When I first joined the group, a member in the NYC area spoke of members getting together. At that time, I thought she was joking. I couldn't imagine dragging my bones to do one more thing and I imagined everyone else feeling the same way. Now I get it! I'm coming back to life.
I'm not done with my work life yet but I'm exploring new ideas for retirement. The food situation takes planning. Who knows maybe I'll buy a camper.
Thank you for your help and support. You changed my life. A special big thanks to :tex:

Post by **tex** » Wed Jul 16, 2014 9:25 pm

It's great to see an update from you. I've been wondering what happened to you, and how you came out with your work change request. I'm glad to hear that things are finally going your way at your workplace, and you're "coming back to life". It's nice to hear that your doctor is beginning to understand the disease, also.

And yes, if you've been recovering for "only" 13 months so far, I'm sure that after another year you'll be kicking much higher, and feeling more like yourself again. I hope that you won't forget to update us again at that point.

Thanks for the upbeat update, and I hope that your recovery continues.

Tex

DJ · Post by DJ » Wed Jul 16, 2014 10:11 pm

Hi Tex! I think of you often. I'll be back from time to time now. I intentionally pulled back in as many places as possible so I could get by and make the changes I needed to make. We are almost finished putting the house back together after the January attic problem. I'm moving a bit slower but I'm moving in a good direction. Things are on the upswing.
Your bird pictures are beautiful. We pitched a screen tent in our back yard next to two bird feeders. It seems that the birds can't see through the gray screen so we have an up-close view from our outdoor recliners. Nature is so relaxing.

Keep moving. It's harder to hit a moving target!

Gabes-Apg · Post by **Gabes-Apg** » Wed Jul 16, 2014 10:23 pm

DJ
thanks for posting the update, improvement does take time, and sometimes we dont notice the progress. Great news that you are feeling better and coming back to life!

Are you taking Vit D3? Keep taking good doses, it will help.
I recently posted some information about magnesium, and symptoms of magnesium deficiency. (there is a sticky at the top of the Main Message Board) I understand that most D dominate MC'ers avoid Magnesium due to the laxative risk. there are derma spray options that can deliver high doses of magnesium without causing laxative effect.

hope your journey to wellness continues to flourish

DJ · Post by DJ » Thu Jul 17, 2014 5:45 am

Hi Gabes, It's great to hear from you. The last I knew, you had just moved. I hope you are doing well.
I am taking a multivitamin, a small amount of calcium, vitamin c, and 250 mg per day of magnesium. Like most others on this board, I pay very close attention to my diet or pay the consequences. Also, like most, I need to work on stress reduction. Things are going in a positive direction. I'll take it.

coryhub · Post by **coryhub** » Thu Jul 17, 2014 2:01 pm

Hi DJ,

Thanks for your progress report. Glad you are feeling less exhausted. Planning meals does take time and and I understand why you would want to explore retirement options. Good luck with that. I too am looking into early retirement options because of the time it takes to cook and because when I don't cook from scratch I spend all my $$ on pre-made gluten free items.

Cory

dfpowell · Post by **dfpowell** » Thu Jul 17, 2014 2:53 pm

DJ

Thanks for your update, I was wondering what happened to you as I've missed your sense of humor and posts on your progress. It's good to hear you have not had any major set backs and are continuing to move in the right direction!

DJ · Post by DJ » Thu Jul 17, 2014 3:46 pm

Hi Cory, It's nice to hear from you. I know what you are saying about the cost of our diet. Yikes! I spend $14 per week on coconut beverage alone. I don't spend much on baked goods because they all have at least one ingredient I can't tolerate. I have a $12 bag if xanthan gum and three cake mixes to toss. Since my diagnosis, I've given away or tossed lots of expensive food. In any case, it sure beats pooping water non-stop for three months!

Hi Donna, Thanks for being here for my return. I've told so many people about this group. You are all wonderful! I don't think my good recommendation will draw a big crowd. I don't think the general population has a keen interest in how our pooping is progressing.

It's great hearing from all of you!

Sheila · Post by **Sheila** » Thu Jul 17, 2014 5:39 pm

Hello DJ, thanks for the update and I'm so glad your life is settling down, as well as your nether regions. Not to be a party pooper, it took me about 3 years to get off budesinide and feel almost normal. Almost normal is wonderful! I hope you achieve normalcy much more quickly. You are so right to have the two lists of food, the Never list and the Maybe list. I am a coward and haven't added anything totally new in a long while. I tried chicken a month or so ago and had WD the next day. Very sad about chicken, but it's off the list completely and so is any further experimentation for a while.

Wishing you good luck,
Sheila W

DJ · Post by DJ » Thu Jul 17, 2014 6:56 pm

Hi Sheila, Three years is a long time but I'm guessing that you spent three years moving in the right direction in general, with good spells and bad, sort of like the stock market. I have added potato chips as an entire food group and I'm pretending that they are good for me.

I consumed more potato chips and coconut in the past few months that in the rest of my life. Coconut is a wonderful thing but it's time to reduce my potato chip consumption by 90%, still leaving me with a fairly high consumption.
It's time for me to try small amounts of raw veggies again. It would help a lot if I could begin eating salad as a meal. That would be a quantum leap right now but maybe I can work my way up over time. I don't think you are a coward for holding off on adding foods. Full blown MC is exhausting and the memory of it keeps us from making big mistakes. It's ok to avoid pooping your brains out. It's ok to move slowly. It's nice hearing from you Sheila! Thank you.

Sheila · Post by **Sheila** » Thu Jul 17, 2014 7:37 pm

I think Leslie eats potato chips, too. Chips are a bad memory. I tried "healthy" veggie chips and had WD, felt awful, early the next morning. I'm on a modified paleo diet and nightshade vegetables are not allowed. I've kept several food diaries and, in desperation, tried the paleo diet. Bingo! I have to add in some grain (quinoa & rice) in order to keep my weight stable. I also eat homemade GF, SF chocolate chip cookies. Definitely not paleo but so good. Baby greens are okay every once in a while and such a treat. For me, and some others on the Board, a paleo or modified paleo diet allowed me to have a reliable diet that doesn't make me sick. I was not a big meat eater so the transition was tough but definitely worth it.

Sheila W

DJ · Post by DJ » Thu Jul 17, 2014 7:50 pm

Sheila, I can't eat veggie chips either. For some reason, they make my belly churn. I eat regular potato chips that don't contain soybean oil in any quantity without difficulty. During my early MC recovery, I at potato chips in hope of gaining weight. Well, my wish came true! I need to join Potato Chips Anonymous!

CathyMe. · Post by **CathyMe.** » Fri Jul 18, 2014 5:12 am

Hi DJ
Glad things are going well for you! I am just over two years post diagnosis and continue to feel better and stronger all of the time. The fatigue was the worst part for me and it feels so good to be able to clean house, do yard work and just LIVE!

DJ · Post by DJ » Fri Jul 18, 2014 3:42 pm

Hello Cathy, I'm happy that your energy level continues to improve. I needed to hear that! My exhaustion has improved but I miss my old energy level. I understand the need to JUST LIVE. I want a social life but I am just now starting to believe that I'll find the energy for it. I used to enjoy overnight guests but the thought of having the house ready, cooking, and changing the sheets after they leave is overwhelming. Eating out doesn't work well either. I need to join a group of people with a common interest. I'm thinking of becoming a gang member.