Update on latest flare

[Ginny]

I have been on a roller coaster since my latest flare. This disease continues to rule my life even with my strict diet and using Entocort. I am discouraged and know that some of you have been in my shoes for this length of time. I can get the D stopped with Imodium (not sure how much Entocort is helping anymore), but my weight loss continues and now hovering near the 100 mark (5'5"). I never seem to gain back; just level off.

My eating habits have not changed much since last Aug when I went to a low fiber, low histamine diet along with avoiding all my intolerances; which means I am eating pretty much meats, rice, few veggies, and some fruit. I alternate the best I can. I sure did feel sorry for myself at Thanksgiving. I can have a good week and then a bad week; nothing consistent. What I am beginning to believe is the stress of working is keeping me from getting better. I can go weeks doing really well and then BAM it happens and it takes awhile to get on an even path again.

Naturally my concern is to stop the weight loss and if I saw my GI right now, he would put me on a high dose of prednisone to get it under control. So for now, I am going to up the daily Imodium with the Entocort, keep on the diet, think positive and plan on retiring within a year if I can last that long. Ginny

Ant, glad you are doing better; keep me posted.

Gloria, I just read your latest "log" and you give me hope! So do you GrannyH!

[Polly]

Hi Ginny,

Sorry to hear about the continuing flare. How much Entocort are you on now?

Until a few months ago, I would not have guessed that stress could be a significant underlying problem, but I now know differently based upon my own experience. Have your tried to work out an aggressive plan for stress reduction? For me it was upping the length and intensity of exercise each day, building in quiet time for just sitting or meditating each day, and turning off the "auditory" media. I don't miss the media circus at all - all of that doom and gloom and fear-mongering. Even if I didn't think it affected me, it did.

I think one of the problems we MCers have is that we are wired so that those stress chemicals go preferentially to our gut nerves and muscles. When we experience fear or stress, it goes right to the gut, instead of to the heart/cardiovascular system like in non-MCers. So I have been consciously trying to recognize the early signs of stress in myself (like tense neck, raised shoulders) and immediately implement relaxation techniques, like focusing on deep breathing or really trying to live in the present moment (instead of in my mind). The more I practice this, the easier it becomes. Essentially I am learning to "hijack" stress and diffuse it before it attacks my gut full force. But I'm not saying it is easy......I am a work in progress. It may, in fact be necessary for some of us to pay as much attention to these areas as to meds and diet as far as MC is concerned.

I hope things settle down soon.

Love,

Polly

[MBombardier]

Good advice, Polly. Between my first grandchild being born last week half the country away, and all the family/friend activities around Thanksgiving, I found myself Friday and Saturday in a very bad place. Thankfully, I had about three hours Saturday night all by myself to evaluate how I got there.

I realized that I was not living life purposefully. I have seen this in myself before--life is living me rather than me living life. Socrates said that the unexamined life is not worth living, and that's my life. I realized that I was forsaking the best for the better, or even just the good (and sometimes the bad, of course). I have made a commitment to myself to stop just plunging into things, but to take a moment and decide if that is the best thing for me to be doing. Even in just the few days since then, I have seen a difference in my stress level.

Now I have to learn to let others own their feelings about my saying no for the sake of my health (physical/mental/emotional), and not take responsibility for their feelings. Gabes has given wonderful advice about this, and it is very encouraging.

[Ginny]

Polly, totally agree with your philosophy. I have increased my workout level of exercise and honestly I have never been much of a TV watcher, but if I do, I focus on the positive if there is any! But, again with the weight loss there is only so much energy to go around. I try to put time aside at the end of the day for things I like to do for relaxation. I am only taking one Entocort right now; two is the max of what I can handle. Three will make me ill.

I have gone through a lot of self examination over the last two years and try to keep everything in focus, but I am a worrier. To be honest my goal was to retire at the end of this year and that's not going to happen, so I think the reality of doing this job for another year has set in and upset the apple cart. I promised my DH today that 8/31/11 would be it no matter what. I carry the insurance for my family and that is the main consideration.

Even with that said, I have never been able to go more than a couple of months doing well (with medication) and then I go backwards. Usually I don't complain, but there are times when I feel helpless. Your suggestion about becoming aware of the oncoming stress triggers is something I am going to start working on now. Thanks for listening. Ginny

[JoAnn]

Ginny, I'm so sorry you're still battling this flare. It seems like once it starts it can go from a small flame to a raging forest fire in no time. Financial situations certainly don't help the stress level of trying to balance all the things we mc'ers have to balance. My heart and prayers go out to you and I hope you'll see some relief soon. I think the holidays just magnify our struggles especially being around so many foods and people that seem to be able to do whatever they want and of course all the extra demands on our time and energy. Sometimes it all seems like too much. My holidays last year were spent in a flare and I tried and tried to get things under control, but finally had to give into a low dose of pred. for a week and then shift over to the full dose entocort. Have you considered upping your entocort to the 2 capsules? It might help you turn the corner. Working is a two edged sword with stress knowing it provides insurance and income on one hand, but a lot of energy and mental drain on the other. In my job (teaching), there are days I can't wait to retire and there are other days that I'm grateful because it takes my mind off myself. I know all jobs aren't like that and certainly can cause a lot of grief. I have wondered the same as you have about getting well, how much does working contribute to set backs? I've been off the last few weeks (it's called a track off in year round schools) and go back Friday. I find myself dwelling a lot more on my problems when I'm not in the classroom, so for me it's better I work now, although I do look forward to retiring in a few years. When you're in a flare it's hard to manage everything and anything. I had to take some medical leave when I was first diagnosed. I had 12 weeks paid leave and was grateful for it. Is there a possibility that you can take some leave?
It might give you a breather to sort things out. Well, I don't know that I've helped much, but I hope and pray for things to get better for you, and know you are not alone. We've all had those lonely stretches of trying to figure out what to do while managing everyday life and feeling totally overwhelmed. Your answers will come and you'll know what to do. Love JoAnn

[Ginny]

JoAnn, thank you for your usual kind comments and suggestions. I was on 2 Entocort after the flare started and when I took the week off over Thanksgiving my system calmed down and was acting more normal, but as soon as I came back to work this week...........well you know the rest. I also took 2 months off when I was first diagnosed 2 yrs ago; and it helped which leads me to believe that this job is the #1 problem. I said in the past that I got 2 promotions within 3 months and didn't want either one of them. I've changed the scope of this job as much as I can. I just need to suck it up till August; I am so ready to be home. I have many things I want to do, and people waiting for me to retire so I can participate in projects.

I made up my mind over Thanksgiving that I would take whatever I needed to stop the cycle. My mission of getting off Entocort has passed, at least until I can put on 10 pounds so if I need to go back to 2 & Imodium, you bet I will. I sometimes wonder about my intolerances, because the week I was off I tried a potato and had no reaction as well as for a baked item with an organic egg. Now I wouldn't try either one............go figure!

Anyhow, you know you are in my prayers. Love Ginny

[klhale]

Hi, have you tried eliminating meat? That became a big no no for me.
In fact, I am in a flare right now, and I have different intolerances this time. It's really a weird illness, isn't it?
Something you are eating now is making you sick.
Try the food diary again. I know it's a drag, but you know it's the only way to stop the D.

Good luck,
karen

[Gloria]

Ginny,

I'm so sorry you're struggling with a flare. The up and down course of MC can be extremely frustrating. Watching your weight drop to 100 lbs. can be pretty frightening.

I know how you feel about working - I was pretty happy to be done with my stressful job. It's not easy to prepare meals when you work, either. Sometimes I wonder how I did it. I thought for sure that once I retired, I'd be able to better manage my diet, and thus MC, and would be in remission in no time. That didn't happen of course, but I am making progress.

I don't know if you've considered the MRT testing, but it was helpful for me. I don't think I would ever have suspected chicken without the test. I would suspect you have additional food intolerances because your progress is inconsistent. I know it's hard to think about eliminating any more foods, especially when you desperately need calories. It may be that you should increase Entocort to 6 mg/day until you retire. After that, you'll be able to devote attention to your MC full-time. It sounds like you have a more difficult case than most here.

In March after the elimination diet made things worse, I decided I was going to take Entocort as long as necessary until I figured out all of my intolerances. I stopped thinking that I only had one more intolerance to find. I reduced Entocort for about a month in the summer and the D promptly returned, so I knew that I still had more foods to consider, and it was back to the drawing board.

FWIW, I would be suspicious of the fruits. I'm sure you've considered them as a culprit, and it seems many here have problems with at least a few.

If you're not keeping a food diary - and I know it's hard when you're working - I've found it to be invaluable, as Karen pointed out.

The hardest thing to do is to regain the weight, or keep from losing additional pounds when you're on such a restrictive diet. I've written that the way I decided to stop the weight loss was to eat pudding, waffles, pancakes and muffins, all as low-sugar as possible. It's worked for me, but it's tricky, mainly because GF mixes require at least 2 starch flours and 2 grain or seed flours. It took time for me to determine which starches and flours were OK because of the four ingredients. I figured it out by eating pure buckwheat cereal, pure millet cereal, and pure tapicoa pudding on different days. Eating a rotation diet also helped because 3 days pass between each food, giving enough time to determine the offensive food. Also, I eat the same meals every three days, so the problematic food is concentrated into just one day.

I'm certainly no expert, but you might find some of the tools I've used to be helpful for you. I appreciate your kind comments. I'm just another MCer struggling the best I can to obtain remission.

Gloria

[JoAnn]

Ginny, your job situation sounds a lot like my sister's. She's very good at what she does and is always getting promotions she doesn't want. She finally got fed up last year and decided things had to change or she had to quit. Fortunately an opening came up in the same company which she applied for and got. Her life is much happier now and with much less stress. I'm sure you're very good at what you do thus all the promotions. It's wonderful that you can look forward to August as a quitting date. Just knowing something is going to end can give you extra boost to get through things. I'm sure it will be so much better to work out your diet without having to worry about work. I always have to plan my "experiments" when I track off from school to allow for reactions and recovery.

Gloria, my doctor had me do a Comprehensive Food Allergy Test through The Great Plains Laboratory last August. I haven't given it much credibility though because it shows that wheat and wheat gluten are clinically insignificant. It also shows sweet potato clinically insignificant and I just recently had a bad reaction to one. This was a blood test and checked about 100 foods. I wonder how it compares to the test you had done?

Mary Beth, do you know if the test I took has any validity?

Love to all of you, JoAnn

[Gloria]

Hi JoAnn,

Here is what Dr. Lewey (The Food Doc) wrote about the MRT test: http://thefooddoc.blogspot.com/search?q=MRT.

In my other thread (Weaning off Entocort), I discussed the validity of the test results. It seems to be valid in determining problematic foods, but those that are deemed OK should be tested by the patient before assuming they are OK. The administrators of the test state as much in their explanation of the results. For example, the test showed that I tested OK for most fruits, dairy and grains containing gluten. But I already knew from Enterolab and my own experience that they were not OK, so I avoided them. The value of the test is in revealing the highly reactive foods. The test does not look for antibodies, as Enterolab, but it is a mediator release test. Mary Beth can probably explain it better than I can.

Occasionally, the same thing occurs with Enterolab, though they only test for 5 foods. Some members have "passed" the test for casein, for example, but they know that they aren't able to eat dairy. That may mean that they are intolerant to dairy for a different reason.

I think that the MRT testing would be better off reporting only the offensive foods, so that there would be less confusion.

Gloria

[MaggieRedwings]

Morning Ginny,

So sorry to hear you are in a flare and that the stress of the job - I totally understand that - and the weight loss are making it so hard to deal with.

I agree with Polly on her techniques and have adapted them to my life and have found that I am not on a more "routine" course for the CC and have not been flaring like before.

Hope things start to work out for you and when the stress gets to much, just walk away from it - work included. You have to do it for yourself and your well being.

Love, Maggie

[Ginny]

You are all so kind, thanks for all your input.

Gloria, it was your threads about the Cleveland Clinic that I initially got interested and suspected that I could have Mast cell issues and still think that I do. I have had conversations with MaryBeth about the MRT testing; she lives close by. There is a new "version" coming out in January, so I had decided to wait and then take the tests. The sole purpose for me in taking the test is to know which foods produce the high reaction. I have a food diary that is a year old now and it has helped to some degree. I too have decided to take whatever I need in order to get some consistency. As I had stated, I was amazed how much better the bowels behaved when I was home on vacation this time so I know retirement will be a good thing for me to do. Thanks for all your wonderful recipes; I am going to try your waffles.

JoAnn, I made the decision over four years ago to change my career direction because of money and retirement. It has not been worth the price I have paid for the success. Yes, I worked hard and had a lot of passion for my job (not so much anymore), hence the promotions in a very difficult field. Sad to say but each time I got a promotion, I would get that empty feeling in my gut ...........I should have listened to it then!! That's water over the damn as they say. Now that I have committed to next August, I am already beginning to plan and be excited. That alone should help my gut!!

Maggie, the weight loss is the toughest! I can't find anything to wear except for Juniors and at 63 I don't look to spiffy in those type of clothes. I took to heart what Polly said and started thinking about how I was falling back into my old rut of worrying about everything and feeling like I was the only one responsible for my family's well being. I just can't go there anymore. Back to the breathing exercises and one day at a time.

Love, Ginny

[Kari]

Hi Ginny,

So sorry to hear about your continued problems, including weight loss issues. However, in your last post, it sounds like you're feeling more hopeful and have a plan in place.

I know just how you feel about taking on too much of the responsibility with family. I did the same thing last year and this year's spring, culminating with my realization that I simply HAD TO stop trying to take care of everyone else (including a dear friend) and start caring for myself. Coincidentally, that's when I figured out the gluten connection with MC and started the healing process. I had to have some hard talks with my loved ones, and they were very supportive of my need.

As I have said here before, I feel very fortunate to be retired, so I have the time to give very focused attention to my MC. I'm sure that once you're home, things will be much easier for you to manage. Meanwhile, I agree that you should take any measures you see fit to get you through the last few months before you retire. Lots of luck to you - sending healing thoughts your way.

Love,
Kari