Retired, less stress but still fighting MC

[Ginny]

It's been awhile since I posted so let me welcome all the newbies and wish you well. Short story; in Dec we got a new VP for our facility who had unrealistic and unobtainable goals. My days went to 10+ hours, a huge amount of stress and MC wickedness! In April I retired and for the the first 3 days I was completely normal and then all hell broke lose! It took me around 3 weeks to get it under control again.

As my normal pattern appears to be, I go a couple of months of near normalcy with the help of Entocort and Imodium, but then out of know where the BM's change consistency and the battle begins. I keep eliminating foods and not adding any back. I took the MRT test and have eliminated all the "yellows" and "reds"; will post. I've changed my calcium to a vegetarian formula due to the trace of Polysorbate 80 in Caltrate and have also eliminated any histamine releasing foods.

As of recently, I'm in the battle again. I was down to 1 Entocort every third day and I took a 1/2 Imodium in the AM & PM. Actually the bowels were beginning to improve with less medication, but something has kicked in again. I'm down to around 20 food items I can eat and have managed to keep my weight at 104. I also rotate but feel like this is not working if my body has become intolerant to another one of my food items. I have found a wonderful supplement for depression called Mood Elevator by Nature's Sunshine. It is 12 chinese herbs and it works for me.

To all the newbies I want you to understand that there is no one solution and you have to keep looking for what works for you! Sometimes we get hung up on what works for one but doesn't for us. So keep trying different foods and supplements. As an example, my score for soy was 64 and yet I can eat green beans. The theory being if you scored high in soy you probably do not tolerate any legume. I have found a probiotic that is dairy, soy and gluten free and am going to try it and then I will report.

I had always sworn that my job was the cause of my disease. My hubby and I were sure I was going to get better once I quit, but not so ! But at least now, if I get nauseated (which is common for me) I can go to bed !

On the happy note, we did buy an RV so I could see the world; so to speak, and do my own cooking. Wishing everyone good health! Ginny

[mbeezie]

Good to hear from you Ginny. I was so hoping you were going to say that not working was the answer. Sigh. Are you having other symptoms besides nausea and D? Like some others on here I guess you will need to stay on entocort to manage symptoms.

What trips do you have planned for the RV? At least that will make travelling (eating away from home) much easier.

Mary Beth

[tex]

Hi Ginny,

It's good to see a post from you again, but I sure wish that it were for a better reason. I agree that the RV will pay dividends, in the long run, because I still believe that stress is the wild card that often trips the balance for many of us. It's not easy to pinpoint any flaws in your treatment program, because you appear to have covered all the bases.

One question - experience has shown that some/all of the "green" foods on the MRT list are not necessarily safe. Have you carefully tested each of them, individually, to make sure that they are absolutely safe for you? Gloria has had experience with that, so maybe she can offer some pointers. I would assume that Mary Beth is familiar with that possibility, as well.

I doubt that your body has suddenly become intolerant to a "new" food. More likely, continued, (or expanded), use of a food to which you have always been slightly sensitive, has caused it's status to "mature" into a fully-developed intolerance. As you know, the more we are exposed to an allergen, the more heightened our response becomes, over time. Of course, the difference is sort of a moot point, because it means eliminating another food, all the same.

I think that it is quite noteworthy, though, that following your retirement, you experienced 3 glorious, symptom-free days. That suggests that stress does indeed play a large role in the etiology of your MC episodes. It's possible, (IMO), that for those 3 days, you were so relaxed, and your mind was so isolated from stress, that your immune system might have even been able to ignore other issues that would have normally caused symptoms. (I'm just thinking out loud here, and I don't know what the implications of this might mean, in the long run, but I truly believe that it might be a factor in your symptoms, or lack thereof, at any point in time).

Hopefully, we can all put our heads together, and come up with some ideas that may uncover the reason for your continuing symptoms.

Tex

[sarkin]

Ginny,

I hope you find your smoking gun quickly and settle in for a delightful retirement.

It crossed my mind that even positive change, like retiring from a job you're glad to leave behind, can result in stress. Obviously not as severe as crazy-boss-stress, but it must still be an adjustment. I hope you're feeling better soon, and look forward to getting to know you (and hear about your RV adventures).

All my best,

Sara

[Ginny]

Tex, you are so correct on the stress. I am sure that is why I improved the first three days; too tired and so relaxed. I have corresponded with Gloria and I think we are two peas in the same pod! Yes, I do suspect the "high green" on the MRT. My problem is that they are pork and rice and eliminating those will bring me down to only turkey and lamb (I can not eat lamb every other day) and rice is my only carb. There is my weight factor. What I think I am going to try first is to make sure I am not eating the "high greens" on the same day, then if that doesn't work, I will start with the rice and eliminate for two weeks to see if that makes a difference and then go from there. Mary Beth, what do you think about the two weeks or should it be longer? To answer your question Mary Beth, I usually get loose bowels and nausea only. I also follow a path where I don't have any urges one day and the next it is loose. This happens a lot when things are wrong.

I did become stressed out a few weeks ago when I discovered there was no Imodium to be had at the stores. Prior to that I was really making some progress. Anyhow, I have since ordered and received but the damage was done.

Interestingly the foods that I now eat are ones I never ate or rarely prior to MC with the exception of carrots & broccoli.

Sara, thanks for your kind words. I'm just one of those tough cases!

Ginny

[mbeezie]

Ginny,

Two weeks seems reasonable to notice something, maybe even less time.

I agree . . .you and Gloria and Pat are very difficult cases. I wish we had more answers for you.

Mary Beth

[Gloria]

Hi Ginny,

I didn't respond yesterday because I was/am in a flare myself and I'm not too encouraging. You are correct that we are two peas in a pod. I also scored borderline green on rice (1.9) and strongly suspect that it's causing me problems. I am hoping that I will improve by eliminating brown rice flour, but continuing to eat white rice, milk and flour. Ie., I hope it is a fiber issue, or an irritant and not another intolerance. I seem to have a similar problem with almonds - I can eat almond milk and flour, but not almond butter. I could be wrong - I could be intolerant to almonds, too. It's beginning to feel like my list of intolerances won't end until I stop eating altogether. I just had a perfect Norman last Thursday.

Like you, I am reluctant to eliminate any more foods from my list of 12, particularly something high in calories such as rice or almond flour. I am beginning to have pain in the tendons in my hands and wrists. I'm concerned that I'm not getting adequate nutrition with this minimal diet and my body is beginning to pay the price. I need to enter my foods into a nutritional program and see what percentages I'm getting. I think I will ask my PCP for another comprehensive blood test.

I took 1/2 Imodium yesterday and 1 Imodium today. So far today it's kept the D at bay, but the 1/2 pill didn't yesterday. I woke up at 4:30 a.m. with explosive D and a small accident.

The good news is that I've been off Entocort for 12 weeks now, or 84 days. The bad news is that I could be back at square 1 again. I am not planning to resume Entocort right now. I'll see if I can get this under control without it. I've never noticed any correlation between stress and my MC. I may be different in that respect.

Gloria

[Ginny]

Ah Gloria..............I hate you've had a relapse! I personally think our bodies like foods for awhile and then that's it. All we keep doing is eliminating! Well I have become much more willing to take Imodium on a regular basis and keep the Entocort to every three days, but if I don't get better in the next week or so, I will up the Entocort again. I keep adding a 1/2 Imodium each day I do not have something solid. I am now up to 2 1/2 a day with pencil thin BM's that fall apart. I wish there were some answers for us; it is depressing.

I'm going to try and keep the "high greens" separate for awhile and see if that helps. Good thought about the brown and white rice. Before this episode I found that more fiber was actually allowing me to have firmer BM's. I scored low on Millet and am going to try that. Also I use a book called "The Yeast Connection Cookbook" by William G. Crook & Marjorie Hurt Jones. Yes, it is for yeast problems but the recipes are for people who have food intolerances. I am also going to try some plantain (it's a fruit) but used as a substitute for hash browns. Anything for a change.

In the end, we might just have to resolve that we will always need help. At least Gloria, you have really made progress with the Entocort. It does not seem to work as well for me because since last Sept. I have taken Imodium with it for control. My GI told me the last time I visited him for a prescription that he had five of us that were not responding to the treatment like he hoped. We are not alone.

Thanks Mary Beth, I wanted to hear that and maybe try 10 days instead.

Love, Ginny

[Gloria]

Ginny,

Yesterday and today I've been fine, thanks to Imodium. I haven't taken any for almost 36 hours. That is the difference between this time and other times that I've gone off Entocort. I am able to recover fairly quickly from a relapse. I hope that holds true this time.

I suspect that histamines were responsible for this relapse. I ate some bacon on Sunday, not thinking that they are high in histamines. It made my turkey burger more tasty, though. Then I made some maple muffins and put cinnamon in them. Cinnamon is high in histamines, as you probably know. I've handled both before without a problem, but everything is different now that I'm completely off Entocort. All remaining foods are suspect again.

I also took a Zyrtec pill at bedtime last night. I haven't taken any for a few months. I stopped taking Claritin because I was having problems and wasn't sure if Claritin was responsible. The Zyrtec knocked me out and I slept like a baby for the first time in more than a week. I think I might take it again tonight, just as insurance.

I hope that someday we'll both be able to add some foods to our diet. It's really hard in the summer to not eat fruit, ice cream and fresh vegetables. I tasted some fresh strawberries from my garden. They were delicious, but I paid a small price for them. Next to ripen are my raspberries. I hope I can resist.

Gloria

[Ginny]

Good news Gloria. I really think you are on the right track. I also use the gel Zyrtec on occasion, but it knocks me out as well.

I still have pencil BM's this morning, but the tummy growling was not so bad yesterday. Obviously I still need to remove items from my diet because I do not recoup from relapses. I've decided to go back to one Entocort a day plus the Imodium and see if we can get this under control. I am also going to watch the "high greens" and rotate so they are not being eaten on the same days and go from there. Pork was my highest, but I just can not imagine eating lamb and turkey only.

My hope is that we stop having relapses one day! But for now, I am a long ways off.

Ginny