Any suggestions, please

[Jskaggs]

Gabes,
Give your mum a big kiss and I hope everything goes great as you begin your new adventure.

Jane

[tex]

The awesome part, all my belongings got there a few days ago, So far, my bed is built, dirty washing has been done, bathroom boxes unpacked and mc essentials are by the toilet, this morning mum is making fresh batch of gabe safe bone broth... does it get any better than that??!!??

How could it get any better than that?

Tex

[Jeanemcl]

I have been wondering when you were moving Gabes.... Sounds like your mum is sooooo ready for you to come home! Good luck and safe travels.

[Gabes-Apg]

It's all a bit surreal, as mum hasn't lived in this area for 30 years, (she moved back here in Dec 2013)
Both of us are going through change, transition, the unsettlement of setting up with new doctors and specialists. We both have left towns/communities we loved.

The other fascination to my family is my strict GF DF YF SF -MC eating plan...
And all the sneaky places that soy is!! Egg shells, outside of vegetables etc...

Interesting days ahead.....

[DJ]

I have not tried antihistamines but will certainly try it. Since you mentioned meds, I checked my meds and found my coq10 and vit. D-3 both contain soy. What a stinky thing for drug makers to add! Could that be the only problem or should I completely start over with my diet? You know, you think you are doing a good job in reading ingredients only to find that you have missed so many things. I think I am still in denial concerning MC.

Hi Jane,
I would choose detective work over Entocort! Take a second look at all of your foods and medications. Read every label. And I'm with Leah on keeping a journal. Don't move toward a complicated diet too quickly.

I am currently taking only a micro-dose of Entocort (I make my own) and should be off by mid-March at the latest. It's frustrating if you try more than one new ingredient at a time because that leaves you not knowing for sure what the problem is. For example, I reacted twice to baked goods containing tapioca BUT each of those baked goods also contained one or more other "new" ingredients. So, although I reacted twice, it leaves me asking if it was the tapioca or another ingredient. My brain is more accepting when there is a precise action and reaction. At some point in the future, I will eat tapioca flour again. I will likely react. Then I can tell myself that tapioca makes me sick and scratch it from my diet.

Can you back up to what was working well for you and add one food at a time while keeping a journal? It's a pain but gaining stability is worth it!

[Mimi]

Hello Jane,

I was diagnosed with MC four years ago but suspect it was present long before that time. When first diagnosed, my doctor prescribed Entocort and the only thing that changed was that my hair started falling out. Now, through trial and error, I have found what works for me. I take 1 gm. Colestipol twice a day and 2 Immodium at bedtime. I started this in August of last year and as long as I am consistent with this plan all works well. As far as healing the inflammation, my GI says that the inflammation is always there hence, no cure. Even on the Entocort I had 10-12 watery stools per day, sometimes without warning. I don't understand all the talk on the website about food intolerances. I can have water and still have D if I don't stay on my plan. I think what you will discover is that doctors don't have all the answers and sometimes none at all. The drugs they prescribe are expensive and long-term use is not the answer. For the first time in years I almost feel normal. My gut still makes a lot of noise and sometimes when I open my mouth I hear gurgles from my stomach but I can handle that if the D doesn't happen. Too many sheets, clothing and carpeting ruined in the past. It is the most helpless feeling I have ever known. If you follow the advice from most of the posts on this website you will be convinced that you are intolerant to most foods and will end up living on water. Find what works for you and let your body be your guide. If I can find a plan that works for me then you certainly can. Just remember this never goes away and it could always be something worse. I don't understand how people can constantly post to this website and dwell on the condition. The same folks are on here everyday. That in itself is depressing. The severity of the condition varies from person to person and there seems to be no clear cut solution. Just like my diabetes, MC never takes a vacation. Best of luck as you move forward.

[JFR]

Hello Jane,

If you follow the advice from most of the posts on this website you will be convinced that you are intolerant to most foods and will end up living on water. Find what works for you and let your body be your guide. If I can find a plan that works for me then you certainly can. Just remember this never goes away and it could always be something worse. I don't understand how people can constantly post to this website and dwell on the condition. The same folks are on here everyday. That in itself is depressing. The severity of the condition varies from person to person and there seems to be no clear cut solution. Just like my diabetes, MC never takes a vacation. Best of luck as you move forward.

I am glad you have found something that works for you. What works for me is to avoid the foods I have discovered that I am sensitive too. I live on a lot more than water. I come here nearly every day not because I am dwelling on my condition but because the advice that I got here helped me to get my life back and now I want to pay it forward by sharing what I have learned with others.

Jean

[Pat]

I agree with Jean!

Pat

[Jskaggs]

I do agree that everyone handles this dreaded disease in their own way. My brother who had a disease called PXE which took his eye sight, then shortly after that was diagnosed with diabetes, then very soon after that was diagnosed with esophageal cancer said before he died - it is what it is- then he would say- why not me? He was so special as was my sister who died from kidney cancer 6 months after my brother. They were strong and went through so much.

I am so grateful for all of the responses to this question. I am learning to muddle through this, but I don't feel like I could get through this without the dear people on this forum. I have learned from what others have gone through. I think I didn't take seriously the meaning of trying one food at a time. I want to be well again and have energy. I am going to need the energy because I am getting a puppy next month! Yea!

So making a chocolate (enjoy life) flourless, black bean torte probably wasn't the smartest thing to do. It sure was good. No eggs, soy, gluten, or dairy. As expected, BLOATED!

Thank you all again.
Jane

[Leah]

Wow Mimi, I don't know if I should be insulted by that last remark about those of us who are on here all the time. I don't check this site almost daily because I am "dwelling" on anything. I'm now here to help others who aren't having an easy time with this whole process. Plus, I always am learning new things to better understand MC…. to better help others. …. I also really enjoy most of the people I have met here :)

Leah

[Gabes-Apg]

Mimi,
It may seem that people are dwelling on this condition, in amongst all the discussions, there is care, support, advice, hugs, a listening ear, someone to have a cyber cuppa and a chat...and people who are being realistic and honest on some of the long term issues.
All of which are major essential elements of getting a good mc management plan in place.

Like watching the news, or reading the paper, it is up to the individual to filter what is presented.
Take what interests them or applies, discard what doesn't apply.

Yes Mc is for life, but it doesn't have to be a burden or overwhelming challenge for life.

And like Leah mentions... For many it is a pay it forward type system, we want to share our learnings and help others...

[DJ]

Drive safely, Gabes, I look forward to hearing about your new beginning.