Update

Martha · Post by **Martha** » Sat May 21, 2011 3:46 pm

Lots of others have posted updates recently, so I think I'll chime in too.

I wish I could report spectacular success since since going GF in October, DF and mostly SF in January, and totally SF in March. But really I feel like I am just plodding along. Some days Norman is here, some days not, occasionally I have watery D, but it responds well to an Imodium. I don't have to do that very often. I took Entocort for 3 months (March-May of last year), and have not taken any since then. What was nice about the Entocort was that I felt confident that I wouldn't have problems, and using just diet I don't feel that confidence. I haven't been able to pinpoint what causes the D on the days that I have it.

What I wrote sounds like I am discouraged, and that isn't exactly true. Most of the time I feel fine. I've been brave (or foolhardy) enough to eat out twice this week. Vietnamese on Wednesday. I stuck with the fried rice which I asked them to make without soy or any other sauce. I was fine on Thursday, but had a headache and a little bit of D on Friday afternoon. That seems like a long reaction time, but maybe that's still a reaction. Then Friday evening we went out with a group from our church to a Mexican restaurant. I haven't had any reaction to that yet, but I'll keep a watch out tomorrow, in case a longer reaction time is going to be a norm for me. Of course, maybe I won't have any reaction at all, and that would be best!!

My family has been very supportive about my diet. My son in Pennsylvania just offered to buy some other grains at an Amish place where they shop and bring them to me, and help me learn to cook them. (He and his wife and baby are moving to Thailand, and will visit us for a few weeks on the way.) My other son and DIL, who live nearby, are very careful to cook things I can eat when I am at their house. DH is happy to eat whatever I cook, and doesn't object to DF, GF, SF meals. He adds his own soy sauce to stir-fries, which I now make with only garlic and ginger. So that's all good, and I don't really feel deprived at all. There are many other good things to eat, and so may GF things available now. I just bought some sesame rice crackers that are delicious.

Anyway, reading the posts that others have written encourages me. Kari, I am trying to take to heart what you said about not expecting perfection. If I don't have Normans every day, that's okay.

And Marliss, what you said a while back about realizing that you hadn't really accepted the reality of the disease hit home. I thought I had accepted it, but I realized that I was angry because I was following the diet carefully, I had given up gluten, dairy, soy, and I didn't cheat, and my body SHOULD be cooperating and producing perfect Normans. I think I've worked through that. Life isn't fair, none of us should have MC, but we do.

I know that giving up more foods may be in my future, but I'm not ready to go there yet.

Thanks to all of you, who share your experiences and your lives. I really appreciate it.

Love,
Martha

sarkin · Post by **sarkin** » Sat May 21, 2011 4:18 pm

Martha,

That sounds like a pretty good life - great family support, a diet that you've adapted to that's *mostly* working, and feeling pretty good a lot of the time. In all honesty, I think there are people walking around doing much worse who don't think they have a disease at all ;)

Really, I don't think the non-MC population out there is having perfect Normans every day and feeling fit as a fiddle... or the shelves wouldn't be full of digestive aids and NSAIDs and all the other things folks pop to keep their symptoms at bay (and avoid thinking about underlying causes).

But enough about them - it's very nice to hear from you, in this positive and thoughtful way. I know what you mean about no time off for good behavior. Or imperfect results from perfect compliance. I hope the overall trend is up, and that you'll gradually see more consistent improvement. I think all this takes considerably longer than we could guess, or would like.

Thanks for the update ;)

--S

hoosier1 · Post by **hoosier1** » Sat May 21, 2011 5:41 pm

I agree that many "normal" and "healthy" people don't have the best BM's either. Just go to a large public restroom if you need proof of this

annie oakley · Post by **annie oakley** » Sat May 21, 2011 7:55 pm

Most People who do not have mc may have and just accept what happens to them and never learn from it, I for one have to go thru an acceptance ritual every time I have a flare. It's a tough thing to relaize this desease Can and Will at time kick our asses, I just wish wellness for all for a long time/ I feel blessed that it has been at least 6 weeks since my last small flare.

MBombardier · Post by **MBombardier** » Sat May 21, 2011 9:32 pm

Joe said in response to my acceptance post that he had discovered there were levels of acceptance that he passed through, and I know what he meant. I feel like the last couple of days have marked my coming to another level of acceptance. I read a really encouraging response from Mary Shomon to someone who was discouraged that nothing she did seemed to make any difference in her hypothyroid symptoms. That's how I feel, struggling with hypothyroidism where no matter what I eat or what I do makes the scale move at all. But as Mary urged, and I understand now, you do what you know best to do and accept that you may never feel (or look) like you did before you fell ill. You live your life deliberately, and cherish it and are grateful. You probably understand when I say that I find myself quoting Romans 8:28 a lot.

Gloria · Post by **Gloria** » Sat May 21, 2011 10:11 pm

Martha,

Your progress sounds pretty similar to mine, and I've accepted that this is the way it will be. I told DH today that some days are normal, some days are not, so we are both having similar experiences. Except he's having his ups and downs with a much wider variety of foods than I am.

I'm hoping that I will suddenly have a spontaneous remission like Grannyh and Maggie have. Not that they didn't do their part, but their MC didn't cooperate for many years.

Gloria

Zizzle · Post by **Zizzle** » Sat May 21, 2011 10:28 pm

Martha,
Ditto. Your progress sounds just like mine. And yes, I also get frustrated when doing all the right things and being careful still results in D. I always find myself wondering if I should ask for a prescription to get instant results.

But I pull up my bootstraps, accept that stress is a major player in my symptoms, and I promise to treat myself better tomorrow. But it sucks, almost never having normans, despite knowing my diet is doing me a lot of good. I feel great in every way 90% of the time, except for those pesky unformed stools in the bowl...

ant · Post by **ant** » Sun May 22, 2011 4:35 am

Dear Martha

He and his wife and baby are moving to Thailand

I travel to Thailand about once a month from Hong Kong (it is just 2 hours away). Where will they be? And what will they be doing? I have a few connections there.

Accepting less than BM perfection is what many, including me, are struggling with now. I am upset when BMs are soft or D.....but what is almost impossible to deal with socially are urgent BMs.

Thankfully, 90% of the time I can avoid that embarrassment. I think uncontrollable urgency would destroy me life.

Best, ant

Kari · Post by **Kari** » Sun May 22, 2011 7:07 am

Dear Martha,

I so enjoyed reading your thoughtful update. It sounds like you have a lot of good things going for you, especially with your supportive family. You also have norman visits - that's pretty amazing in and of itself, so you most certainly are on the right track with your treatment method.

Yesterday, I came across a notebook someone gave to me when I retired and moved from NYC to Colorado, and on the cover is the "serenity prayer". Although everyone here probably knows it, I'm indulging my urge to write it in my post, so here it goes:

God grant me the serenity to
accept the things I cannot change,
courage to change the things I can,
and the wisdom to know the difference.

Learning to accept and live peacefully with the ups and downs of MC, while at the same time doing everything in our power to heal, is such a difficult, but worthwhile, psychological endeavor.

You said:

"I know that giving up more foods may be in my future, but I'm not ready to go there yet."

That seems like a wise approach to me, as I have found that no matter how many foods I give up, I cannot force the results. Healing is a process, and it takes time and patience. When remission is finally achieved, life will still not be perfect, and neither will there be perfect 'normans' every day.

Thanks for your update - keeping my fingers crossed that you don't react to the Mexican food. Have a wonderful Sunday.

Love,
Kari

Martha · Post by **Martha** » Tue May 24, 2011 12:49 pm

Thank you all for your kind words. I do indeed have a great deal to be thankful for.

The Serenity Prayer is something that I have loved for years, even though accepting what I can't change is hard, because I like to fix things.

Ant, my son and his family will be in the southern part of Bangkok. Katie has accepted a job teaching at International Community School of Bangkok. We don't yet know what Steven will do. But they are very excited, and looking forward to this new challenge and opportunity. They spent their first year of marriage in Taipei. I hate for them to be so far away, but since my husband and I lived in Indonesia and the Philippines during all our kids' growing up years, I can hardly complain that they are taking my granddaughter away!

I survived my Mexican meal Friday night with no problems. I had jury duty today, and got through that okay too. They sent my group home shortly before noon. I was glad not to get picked to be on a jury. One less thing to worry about with MC.