What next?

Lesley · Post by **Lesley** » Wed Mar 28, 2012 9:05 pm

OK, I have been following the enterolab results and the MRT instructions, adding one new food every couple of days.

I posted when I had a 2 day bout of D. After that I had a few days without a BM until I took the laxatives and then I got a loose BM with little pieces. No undigested food, or so it seemed. Cramps and bloating on and off, especially straight after eating.
Today I had that same sort of BM in the AM, bloated all day. When I ate my main meal (same foods - beef, potato, onion, which is on the MRT as my least reactive vegetable) my stomach blew up, and the cramps began immediately. Small BM - mucousy bits, with sort of ribbons floating off. In a way I wish it would keep coming and get out of me. Relieve the cramping and bloating.
I am horribly bloated, cramping and so tired.

The GERD has been as usual. Constantly painful unless I suck on something. Hurts to eat, but sometimes not as excruciatingly as others. Last night it woke me about 6 times, burning and hurting.

So. What next? Where do i back up to?

Post by **tex** » Wed Mar 28, 2012 9:10 pm

I would be suspicious of onion, unless you've tested them and found them to definitely be safe. Most of us have problems with onions.

Tex

Lesley · Post by **Lesley** » Wed Mar 28, 2012 10:08 pm

They seemed to be safe. Now I don't know. I don't know about anything any more.

I feel terrible tonight. Bloated, gurgling, cramping and the GERD is outrageous.

Martha · Post by **Martha** » Thu Mar 29, 2012 7:03 am

I'm so sorry you're still feeling bad, Lesley.

Love,
Martha

coryhub · Post by **coryhub** » Thu Mar 29, 2012 10:42 am

Dear Lesley,
Sorry you are having a bad day, I know it's frustrating but we don't give up. The bad days make us appreciate the good ones even more.
Out of the three foods you mentioned, onions was the one that sent up a red flag for me. I can tolerate them on a good day but not during a flare up.
Hope the day gets better for you.

Lesley · Post by **Lesley** » Thu Mar 29, 2012 1:18 pm

I know many MC people can't tolerate onion, but I have (I think) from early on, and the MRT supported it. I think I will give it a miss for a while and see if I improve.
I ate a few bites of my meal and literally blew up!

Thanks for your support people. I've said it before and I will say it again - without your support I do NOT know where I'd be today.

Joefnh · Post by **Joefnh** » Thu Mar 29, 2012 3:06 pm

Hi Lesley, I can appreciate the frustration. For the first 10 months after Dx of MC, I had several occasions even with the MRT results, that I did not know what was bothering me. What I ended up doing each time was to fall back to the basics. I would go back to just something simple like boneless skinless chicken and a steamed veggie like carrots and rice. I would then after a week of a simple diet, add one food back at a time while keeping a food diary. This really helped me refine my intolerances.

I would say that the most important ingredient in treating MC is patience and lots of it.

It seemed for me, that as I removed the main foods that I was reacting to, another less reactive one would pop up. This went on for about a year and it seems now that I've got the diet dialed in. I believe Tex and others here have mentioned similar processes of another reactive food popping up after a major one has been removed

Best wishes Lesley.

JLH · Post by **JLH** » Thu Mar 29, 2012 4:24 pm

Oh, Lesley, I am so very sorry. I told my dietician I need to hold off for a while in doing my LEAP program. Now I am really glad I did.

I am trying to get my dog through therapy dog class. She just got dx with hip dysplasia.

We see a specialist on Monday. Thank heavens, we have pet insurance (no meds or wellness) on both "girls." Of course, there is a deductible and co-pays.......The medicine the vet put her on is only $75 and change for 84 pills! He told us to look on the internet.

Lesley · Post by **Lesley** » Thu Mar 29, 2012 4:39 pm

Joan, Polly said the MRT helped her refine her diet and get to remission. I am sure it's good for some people.
I find some small correlation between it and Enterolab, (see chicken and rice) though there are foods the MRT tells me to eat to which I tested very sensitive with Enterolab.

I have to figure out what is upsetting me. Something is! I just ate, very simple, no onion, but I have blown up again.

My son's little dog is also going to a dog trainer/therapist. I keep nagging him to take out insurance on him, but he doesn't move it. Oh well, it's his money.

Hip displasia - no fun! I hope she gets better!

Kari · Post by **Kari** » Thu Mar 29, 2012 6:17 pm

Lesley,

So sorry you don't seem to be getting a break. MC is a horribly frustrating disease to deal with - at least from my own experience. I'm still struggling after Enterolab, MRT, Acupuncture, and other attempts at healing. My food sensitivities are not yet stable after 1 year and 8 months of working on it. My experience with LEAP was like yours. I quickly discovered that the dietitian could not help me at all and had to take charge of my own program. As it did for others here, MRT helped me narrow down my intolerances, but I'm still eating almost exclusively low green foods, and not all of those either.

I'm now trying to taylor my diet to considerations of MC, histamine intolerance and candida, and for me items that seem safe one day, do not the next. Additionally, I cannot eat a large meal, or I will react no matter what I'm eating. I have to keep the meals small, and not eat too much of any one ingredient. My experience is that I have to figure out my own way back to health, taking "outside" advise into consideration, but ultimately being my own judge on what to do.

I'm aware of and monitor every single ingredient that goes into my body, including "flavor enhancers" and meds/vitamines, and have found that the less complicated and plainer I keep everything, the better I do. For someone who had to learn how to cook in this process, it has been a very trying and frustrating experience, and I suspect the process will never end. However, I feel I'm coming to better terms with the fact that my lifestyle has changed dramatically, and will never go back to the way it was.

All that said, I feel sooo much better than I did before starting down this road of diet modification (both physically and mentally), and there is no doubt in my mind that diet works for me to alleviate the various MC symptoms. When people here speak of "remission", I don't really understand what that means, as it seems like those who have reached that very elusive state, still suffer setbacks due to dealing with hyper sensitive digestive systems. I may be wrong, but that's my own take-away from following people's stories here.

Well, I didn't mean to go on for so long, but I just want you to know that I understand your frustration 100%. I wish there was something I could say or do that would make things easier for you, but unfortunately, it seems like we each have to find our own way through the MC maze. I wish you all the best and hope that with time and lots and lots of patience you will start to experience more consistent symptoms relief.

I'm sure you can use a couple of these:

:bigbighug:

Love,
Kari

Post by **tex** » Thu Mar 29, 2012 8:38 pm

Kari wrote:When people here speak of "remission", I don't really understand what that means, as it seems like those who have reached that very elusive state, still suffer setbacks due to dealing with hyper sensitive digestive systems. I may be wrong, but that's my own take-away from following people's stories here.

You're quite right, of course. Speaking for myself, I consider myself to have been in remission for 8 years now, BUT, that doesn't mean that I haven't had a reaction or two, here and there, or even an episode that lasted longer than a day or two, over the years. What I mean by remission, is that I am fine, unless I somehow slip up, and gluten slips into my diet. I had a drawn out episode, a few months ago, due to a cross-contamination problem, but after doing an Enterolab test, to verify it, I finally got it sorted out.

Anyway, the point is, virtually all of us have occasional setbacks - the disease is forever, so we have to be forever vigilant, and in some cases, we have to continue to fine-tune our diet, because the longer we react, the greater the risk that a new food-sensitivity may develop, (IMO).

Love,
Tex

Lesley · Post by **Lesley** » Thu Mar 29, 2012 9:24 pm

Kari,
Thank you for your long and thoughtful answer.

I know this is going to be a lifetime thing, and that I will have to monitor everything I eat for the rest of my life. I know it will continue to be a struggle, and I will have to deal with it daily.

I can't eat much at once. I get filled up very quickly, and stay that way, but I can feel when I need to eat again, hard as it is.
I am SO bloated my clothes are tight and uncomfortable. I am absorbing food, because I am not losing weight. When I bloat like this I seem to put on weight. Its SO weird.

I wish the GERD would improve because that is one of the worst things to deal with.
I even took a Nexium last night in desperation, so I could sleep.

Again, thanks! And I am glad you are feeling so much better. I remember the picture you posted of you hiking. It's wonderful you can do that. I can't. I am full of admiration!

JLH · Post by **JLH** » Thu Mar 29, 2012 10:24 pm

I am training Jazz in a class to become a therapy dog like our other Borzoi. She visits nursing homes, hospitals, a cancer center and many other places including a shelter where 300 tornado survivors were living. She works with OT, PT and Speech Therapists and their patients.

Even if a miracle occurs and she pases Basic (nursing homes, assisted living), I doubt we will be able to go much farther (Public Access=hospitals, Clinical Access=therapists) because of my MC. How can we schedule appointments and not be able to go to them?

starfire · Post by **starfire** » Fri Mar 30, 2012 8:43 am

Leslie, I'm very sorry to hear that you don't seem to be getting any better. I don't know how you stand the GERD. I think I took a Nexium one time during the week I was bad after quitting Nexium cold. I'd be back on Nexium if it had gone on as long as you have been fighting it. For me, the Rhizinate (found out they make a German Chocolate Flavor which isn't nearly as bad tasting as the original and now I can't wait to use up the original) does a good job of controlling the heartburn. I know it has ingredients which I normally wouldn't consume but I know I want to get off the Nexium and thats the only way I know works for me. I can't afford to have the acid doing damage since I've had Barrett's. I don't have heartburn much anymore but I chew a couple Rhizinate whenever I think it might be coming. I can usually tell. I am also taking some digestive enzymes with meals and probiotics. Just thought I'd try to cover the bases. I'm not asking or encouraging you to try my way. I'm just telling everyone that I'm doing pretty good (I think).

Joan, I'm very sorry about the hip dysplasia. I sounds quite painful, poor thing. I hope the treatment will help.

Love, Shirley

ant · Post by **ant** » Fri Mar 30, 2012 10:25 am

For Lesley and all who are not 99%

I pray for you to get back into some sort of life balance....

For me the definition of "remission" is you "have your life back", but I think that never means we can "let are guard down".

Love, ant