Just Bummin'

[jillian357]

Hi everyone,
Hope I'm not too much of a downer, but I'm really bumming today. I just need to vent I guess....

I'm still on the Entecort 9 mg a day, and gluten free. Feeling good for the most part, I would say I am feeling 75% better than I was when I was diagnosed in April with MC.

Anyway, I'm training for my first 1/2 Marathon in Oct of this year, and I'm REALLY struggling with the dreaded "d" during my runs. I've ramped up my training considerably with mileage, and suddenly it seems I can't even run a measely three miles without the D kicking in. Last night was horrible....I was out 30 minutes and had to make a beeline for home to take care of business (just barely made it). I did get back out there to finish up my run, but I was just totally drained...I had forgotten about how a dose of sudden D can really wipe a person out. Plus it's really crummy to have to run the same loop in my neighborhood "just in case" I need to use the bathroom.

I'm worried to death about running 13.1 miles, and having no where to go but in the woods with other runners around.....I shudder at this thought to be totally honest. I can't even begin to imagine how awful that will be.......I'm a very modest person.

I'm thinking maybe I am eating too much fiber? We have a lot of tomatoes, cucumbers, squash in our garden, and I have been enjoying them in cautious moderation. I've tried to be so careful not to eat TOO much veggies, but maybe even a little bit is too much at this point.

Would it be beneficial to try to simply eat more lean protein until my training and this race is over? I can't imagine eating JUST protein, but at this point I'm willing to try anything. Running this race means the world to me.

I have started taking one Lomotil before my long endurance runs on Saturdays, and they do seem to help with the urgency, but it doesn't make it totally disappear....just makes it a little more manageable. However, I really don't want to have to take this before EVERY single run, but maybe it's something I need to consider.

Again, I guess I just needed to vent a bit. I did PM moremuscle last night as I know she is an athlete and run several marathons, so I am hoping she checks her messages as well......if anyone else has ANY ideas I would sincerely appreciate it!

Thanks guys and gals!
Jill

[tex]

Hi Jill,

I wish I could help, but I'm not a runner, so I don't know if it's possible to train for a marathon on a diet of only protein. I suspect, though, that you're going to need some carbs to keep your energy level high enough.

In general, we seem to do much better on a low fiber diet, and some of us are more sensitive to fiber than others. I believe that some members have found tomatoes, in particular, to be a significant problem, for example.

I checked Karen's profile, and when she set it up, she deselected the option for the system to send her an e-mail notifying her about new PMs. Since she hasn't logged onto the board in a very long time, (over a year), she is not likely to ever see your PM. I suggest that you send her an e-mail. Since running is so important to both of you, I'm sure she would be very, very interested in hearing from another runner who has MC.

If you would like to copy the text from your PM, (to save having to re-write all of it), you can find it by going to your PMs, and clicking on the "Outbox". Unless she has opened the PM, it will still be in your Outbox, and you can edit it if you want, and you can copy and paste the text into an e-mail.

Unexpected "nature calls" are the pits, but they're a fact of life, until we can get our symptoms under control. You must be quite a runner, if you can run home in time to use the bathroom. I'm not sure if Lomotil will significantly affect a runner's performance, or not, (it's an opiate-based medication), but, of course, an "accident", or a threat of an "accident", will surely affect one's performance, also, so it's hard to win when dealing with active MC.

Tex

[jillian357]

Thanks Tex.....I see my PM in my outbox...but sadly, I don't see Karen's email address listed under her profile.
Obviously I understand for privacy reasons you can't give me her email address in this venue....is there any way you can recommend that I can email her (as in, perhaps I could send the PM to you or another administrator and you/they could forward it to her?)

Would that be an option if it's not too much trouble?

Thanks as always for the help!
Jill

[tex]

Hi Jill,

I'm not sure why you can't access her e-mail address. You should be able to click on the "Memberlist" link above, and in the page that opens, there should be an "E-mail" button to the right of her username, that you can click to open an e-mail window.

I'll PM you the address that she has listed. She changed her e-mail address a couple of years ago, and I'm not sure if this is the undated address or not. If it doesn't work, please let me know, because I have an e-mail from her which she sent when she made the change, but it's on another computer, and it's not networked with my system, so I'll have to check it later. Anyway, I'll verify that this is the correct address, and if it isn't, I'll PM you an updated e-mail address.

Sorry for the problem.

Tex

[jillian357]

Thanks Tex, I got it and forwarded my email on to Karen.

Thanks for ALL the help!

Jill

[tex]

You're most welcome. I hope that she or you will share any advice that she might offer, since there are surely others who would find the information helpful.

Tex

[tex]

I checked my records on the other computer, and that is indeed the latest e-mail address that we have.

Tex

[Polly]

Aw, Jill,

This is the pits! As you may recall, I run regularly too, but I'm not really in the marathon class. The longest race I ever ran was 10 miles. However, like most of us here, I do feel like somewhat of an expert on MC. Sigh.

I haven't had time to read the Board much lately, so forgive me if I ask questions about info that you have already posted. First of all, have you been tested for dairy intolerance? If not, you might try eliminating it for now. It is the 2nd most common intolerance after gluten around here. And I see that you also have soy intolerance (common in about half of all gluten-sensitives).

How long have you been on the Entocort now? Exactly what are you eating? If you have a minute, why don't you post some sample menus from the last few days? It always helps to have others look at one's food intake to help spot possible sources of contamination.

Have you considered bagging this Oct. race and aiming for a later half-marathon? Maybe you could do a 5K in the fall instead. It sounds to me that your gut may not yet be healed enough to undertake a full running schedule. (When it's not healed, fiber can be very irritating). You say you are "worried to death" about having an accident during this race, and I can't blame you one bit! Not to mention the fact that worry/stress always make MC worse to begin with. My other concern is that these kind of distances are not healthy when one is still having any having D - it is a set-up for dehydration and electrolyte imbalances - especially since we will still be still having hot weather for some weeks.

Just some thoughts. I know how much you want to reach this goal, but you need to give your body all of the optimal conditions to heal, too.

Love,

Polly

[jillian357]

Hi Polly,
Yes, I remember you telling me that you are also a runner....10 miles is nothing to sneeze at, by the way!! That's awesome!

I am already registered and committed to lining up on the starting line for this race, God willing. Last year I planned to run it, and had an onset of full blown asthma, which ended up taking months to get under control. I was worried I would never be able to run again, but thankfully, it's much better now. I am hoping history will repeat itself and I can get the CC under control as well.
Even if I have to poop in the woods, walk, crawl, whatever...I am determined to cross that finish line.

I've been taking the Entocort since April, (3 tablets) totalling 9 mg a day. In June my gastro wanted me to experiment with reducing down to 2 a day, and he said it was ok to go back to three if needed. Well, 2 a day didn't cut the mustard.....so I am back to 3 now. I hate taking meds, but it's better than the alternative. My goal right now is to get thru my training and this race in the best way possible.....

I haven't been tested for intolerances ($$), but I have felt volumes better since eliminating gluten from my diet. I also suspect dairy is another offender, so I'm going to follow your lead and eliminate that as well and see if it helps.

Funny thing is...cheese doesn't seem to be a trigger....but milk does.
Is that possible, or am I crazy??

Here's a small sampling of what I have been eating lately:

Breakfast:
2 rice cakes with 2 TB organic peanut butter
or
three egg whites with 1 slice of 2% american cheese
or
1/2 cup GF cereal with 1 TB melted coconut oil (I try to get this in several days a week to support my thyroid)

Snack:
1 apple or banana

Lunch:
2 oz chicken
or
1 cup brown rice with 2 egg whites mixed in
or
1 cup veggie casserole (cooked broccoli, squash, cauliflower, onions, with GF bread crumbs & parmesan cheese)

I usually graze and eat small amounts during the workday...an hour later I may also have:
2 piece of GF MSG free no nitrates added lunchmeat (turkey or ham)
sliced cucumbers (could be an offender!)

snack:
cheese stick 2% milk
or
3 oz cut up carrots (another offender?)
or
another rice cake
or
1 jar of baby food-fruit flavor (if my tummy is acting up)

Snack, pre-run or pre-workout at the gym
1/2 of a Lara bar

Dinner:
4 oz turkey burger with GF ketchup
or
4 oz chicken
or
a medium baked potato
with:
small salad with olive oil, mushrooms, tomatoes, parmesan cheese....(I think I need to eliminate this for now?)
3 oz roasted sweet potatoes
or
1 cup roasted green beans

Snack (occasional)
yogurt
or
100 calories worth of GF pretzels

I have been averaging around 1300-1400 calories a day eating like this. I may also have some Gatorade on run days when it's really hot out, so add another 100 or so calories for that.

I have had an OBSESSION with craving sugar lately, and it's driving me crazy. No joke, I could eat it by the spoonfuls I crave it so bad.
Could that be related to my flare in any way??

thanks for taking a look at this...any and all suggestions are totally welcomed!!!

thanks again!
Jill

[Polly]

Hiya Jill!

Just saw your response. Will write tonight when I have more time! Until then.........

[jillian357]

Hi Polly,
Thanks, I will keep my eyes peeled for your response...thanks so much for taking a look at this.

I need as much help as I can get!!

Love,
Jill

[tex]

Hi Jill,

While you're waiting for Polly's response:

That sudden sugar obsession is a big red flag concerning candida. Yeast overgrowth can certainly cause, or contribute to, D problems, also. Does your tongue seem to have a sort of furry white coating on it? If it does, scrape a fingernail across it and look at the path it carves. A big groove could indicate a problem. A very furry tongue typically indicates an overgrowth of Candida albicans.

See how you fare on this questionaire:

http://cassia.org/candida.htm

Tex

[Polly]

Hi Again Jill!

You are not crazy with the cheese/milk thing. LOL! There are 2 major types of dairy intolerance:
1. problem with the milk SUGAR (lactose)
2. problem with the milk PROTEIN (casein)

In the former case, one can tolerate things with low levels of lactose. Or, they may be able to tolerate items with lactose if they take some Lactaid with it. You will be interested to know that cheeses aged over 6 months are usually free from lactose! Many cheeses tell how long they've aged right on the label. You might want to switch the American cheese slice for an aged cheddar. Some with MC/gluten intolerance have a TEMPORARY lactose intolerance because of the damaged gut. Once the gut heals, there may be no further problem.

In the latter case, it is a permanent problem and one must avoid ALL dairy products. YEP, no milk, butter, ice cream, yogurt, cheese, NADA. This is the type I have. Lets's hope you have the temporary problem since you seem to do OK with some cheeses.

You have really done well diet-wise from what I can see. It's great that you are avoiding most processed foods - one can never be sure about them. Even if they claim to be GF, they may not be. The law allows manufacturers to claim GF if the gluten fraction is less than 0.5% (or is it 0.05%?). Thus, those who are sensitive to even very small amounts of gluten can be sickened. I am a case in point!

Re more high-cal snacks - how about guacamole, olives, tuna, nut butters? Can you do nut butters (other than peanut)? I have almond, walnut, pecan, and macadamia nut butters - a great snack is to spread nut butter on apple slices.

In general, it's best to avoid peanuts/peanut butter for now. Likewise the other members of the legume family (soy-which you already avoid, as well as green beans, peas, dried beans, chickpeas). Unfortunately, members of the legume family contain "lectins", which are compounds known to open up those little gates in the intestine and let more/larger foreign proteins into the body - exactly what we don't need.

If prone to food intolerances, it is often best to try and rotate potentially troublesome foods. In other words, try to eat enough variety that you can go 3 days or so without repeating a food. No easy task for folks like us, I know! I wouldn't worry too much about veggies/fruits but I would be careful with eggs. Any protein really, including other grains and meat/seafood. Rotating also helps you to get a better handle on exactly what food may be making you sick.

Just a word about oil. Have you tried stopping the tablespoon of coconut oil to see what happens? Oils in general can lead to diarrhea. In fact, in Pediatrics we often treat severe constipation with large doses of mineral oil. Plus if you have gut damage, you will not absorb the oil anyway - you may see it (and the poop) floating.

My hunch would be that if you are still on the full dose of Entocort after 4 months, along with the diet, that you may indeed have other food intolerances. Have you thought about testing - for yeast, casein, egg, soy, etc., as per Dr. Fine's lab?

Hey, have you ever tried running with Depends? Not the prettiest visual image, but it may at least provide some temporary protection until you could get to a place to poop. Is it possible to drive the race route ahead in order to map out potential places to poop? Always good to be prepared, right?

Enough already! I can ramble on forever. I admire your determination and guts (no pun intended)!

Love,

Polly

[JLH]

What about an all the time sugar obsession? (Especially for chocolate?)

[tex]

Joan,

Do you have "thrush" on your tongue?

Tex