Still having troubles

Beth · Post by **Beth** » Sat Jan 13, 2007 9:23 am

Hi everyone,

For the last ten days I've been away at my graduate residency, and I've been struggling with my digestive system the whole time. This has been the pattern: I'm constipated, so I take 2 tbsps of MOM (or a laxative), and then the next day I'm running to the toilet all day long. Then the day after that I feel pretty good. Then the C starts again. I take a tablespoon of MOM, and the next day I'm still dealing with C. So, I take 2 tbsps of MOM, and then I'm running, running for the bathroom. Just now I had a bout of D that was so bad I thought that I was going to throw up, but I didn't have a BM all day yesterday (yesterday was one of the good days). I'm still taking the entocort, only because of the C, I reduced it to 1/day. I'm cooking all of my meals and have been eating an absolutely flawless diet the entire time. Protein, usually chicken or boiled eggs, and veggies, and sometimes buckwheat, sometimes potatoes and carrots. Lots of fruit (when I'm not having D). Today there are two hour and a half lectures that I really want to attend, but I think I'm not going to be able to make either of them. I feel horrible.

I was thinking when I was really struggling with C that I ought to do a colon cleanse. Has anyone heard of Colonix? (http://www.drnatura.com/product_pic/col ... m_pic.html) What do you think? Obviously I need to talk to my doctors about this before I start - but for people with MC, do you think this kind of thing is a good idea? And how can I be getting myself better? I feel like I'm running out of options here.

Thanks,
Beth

Post by **tex** » Sat Jan 13, 2007 10:48 am

Hi Beth,

Well, the fact that yesterday was one of the good days, tells me that you probably didn't take MOM before todays severe episode of D. That implies that one Entocort per day may not be controlling the D from your MC.

I think that you're dealing with two seperate, (though obviously linked), issues here - D from MC, and C from a slow motility problem, or possibly a combination of slow motility and a less than optimum diet. (Your diet might not be a problem, if it weren't for the fact that your GI system seems to be ultra-sensitive at this point).

Personally, my opinion of all these colon-cleansing programs that are currently offered on TV, in books, and on the internet, is that they are just schemes promoted by opportunistic individuals seeking to fatten their bank accounts. There is no such thing as "a" normal bowel movement schedule. "Normal" is whatever is typical for any given individual, and routines vary widely. Many of the "colonic health" opportunists advocate a BM after every meal, for example. To my way of thinking, that falls under the definition of diarrhea.

That said, many of us have experienced a cessation of D, immediately following a pre-colonoscopy prep cleanout. I suspect the reason for this is that a purging of that thoroughness, completely interrupts all current digestive processes, and forces the GI system to start over, thus interrupting the adverse symptoms/feedback/reactions cycle that the enteric nervous system is stuck in.

Maybe some of this will be helpful:

http://www.postgradmed.com/issues/1999/11_99/wong.htm

My thoughts are that you may need to increase the dosage rate of the Entocort again, in order to prevent the type of reaction you had today, and add more fruit, veggies, and water to your diet, to try to minimize the recurring C problem.

Wayne

mle_ii · Post by **mle_ii** » Sat Jan 13, 2007 12:10 pm

tex wrote:That said, many of us have experienced a cessation of D, immediately following a pre-colonoscopy prep cleanout. I suspect the reason for this is that a purging of that thoroughness, completely interrupts all current digestive processes, and forces the GI system to start over, thus interrupting the adverse symptoms/feedback/reactions cycle that the enteric nervous system is stuck in.

And here's another reason that a colonoscopy prep cleanout has helped with D. It changes the gut flora, recent studies have shown changes in what bacteria are present and the amounts of each.

It can significantly change the way the gut flora will be post cleanout. Thus it may have changed it just enough to be ok, perhaps removing enough of the bad bacteria immediately following. Problem is it's a crap shoot (haha) after that as to what you get. It could end up curing you because you have the right amounts/kinds, eat the right foods, take or don't take certain meds/supplements to get out of dysbiosis. But then it could put one into a worse situation as well.

Think of it this way. You have an alcoholic that gets a new liver. They're fine and dandy for some time, but depending on the environment they might get better or get worse.

Mike

mle_ii · Post by **mle_ii** » Sat Jan 13, 2007 12:11 pm

Also, what fruits are you eating a lot of?

Beth · Post by **Beth** » Sat Jan 13, 2007 12:18 pm

oranges, pears, apples, occasional banana when I'm having D.

artteacher · Post by **artteacher** » Sat Jan 13, 2007 12:20 pm

I'm sorry Beth, I really sympathize. I was in the exact same situtation many years ago. I eventually quit taking MOM because I stopped having any constipation, ever. Just chronic D. All I can say is that it may help to give it more time and keep experimenting with the exact dosage of MOM and water, until you get it just right for you. I used to measure out the MOM with a measuring spoon - one level TBLspoon. Less didn't work, and more was too much, which made my body rebound to worse constipation. I think, too, that once you start taking it, you almost have to keep taking it, and taper off very gradually, because your body becomes used to the outside help.

Love, Marsha

mle_ii · Post by **mle_ii** » Sat Jan 13, 2007 12:37 pm

Beth wrote:oranges, pears, apples, occasional banana when I'm having D.

Have you tried entering your foods into something like fitday.com to see if you're getting enough fiber? Or kept a food diary to see any patterns?

I found myself alternating between C and D for a few weeks lately, though I seem to be back to normal. Still haven't traced the exact cause though I'm thinking it might be related to either the supplements I was taking, soy or possibly even potatoes. I hope it's not potatoes for me.

Also, colitis and/or dysbiosis can cause sugar malabsorption. Fructose included. Pears and apples are pretty significant contributors of fructose and if you're eating a lot of them they'll give you D, cramping, gas, not fun.

Mike

bobh · Post by **bobh** » Sat Jan 13, 2007 12:52 pm

Darn. I just haven't experienced the "C" problem - and don't have much to add to what others have said. Hope you are feeling better soon!

Mars · Post by **Mars** » Sun Jan 14, 2007 8:32 am

Hi Beth,

I don't have too much problem with C but when I do I generally eat foods that I know will "loosen" me up a little. Sauerkraut works doosies on me! I love it but know that it will cause trips to the bathroom so generally only eat it when I have a little C going on, which isn't too often now.

I hope you find a happy medium soon and start feeling better!

Love,
Mars

harvest_table · Post by **harvest_table** » Tue Jan 16, 2007 2:20 am

Beth,

For what it is worth, I took a 2 month round of pred, then 6 months of Entocort along with exploring diet. It seems like for some of us, nothing happens very quickly and I'm sure you have surmised that by now.

When I was having symptoms of D (never C) I could not partake of the whole fresh foods of a paleo diet that you are consuming now. They made my problems worse even though I was taking a medication. I think, my body was not use to eating healthy foods.

Maybe your gut is not healed enough? When we put up with a year, 2 years or even 5 years with chronic symptoms of MC we just can't expect miracles overnight but in the long run, I believe diet will be a saving grace for most of us.

Hope you feel better soon.

Love,
Joanna

moremuscle · Post by **moremuscle** » Thu Jan 18, 2007 9:26 pm

Hi Beth,

I am impressed with you - you are really taking the Bull by the horns (I am not sure this is an American saying but you get the picture, right); in other words you have a lot of courage.

Back when my MC was at it's worst I often thought how fortunate I was not to hold a regular job (my husband and I own our own business) - I would not have been able to go to work and perform under the circumstances. I had to stay at home so I could clean up the messes I made on the way from my chair to the bathroom or while driving the car etc. I don't know if it makes you feel any better to hear such personal anecdotes?

You are able to hold your job and perform at a relatively high level. This is amazing to me. It impresses me that you have the courage to show up at work while having symptoms. Please, when you feel bad about your situation and feel somewhat hopeless about the progress or lack thereof think of how amazing you are to be able to do as much as you are.

My husband wants me to go to the TV and watch a movie that just started about the Danish troups in Afghanistan (I am Danish) -so I have to run ASAP.

I want to chime in with Wayne and say concider upping the Entocort dosage for a while longer; when you have your symptoms under good control on a day to day basis you can proceed to gradually ever so slowly lower the dosage (please, I am not a doctor, as you know). It is important that you get control so you can do your job and enjoy it - I know you need the control ASAP. If you tolerate Entocort well it seems like a very good choice - we oldies have seen/heard a lot of success stories with Entocort; finding the right dosage is important.

Love,
Karen

Beth · Post by **Beth** » Sun Jan 21, 2007 11:55 am

Hi everyone,

Thanks so much for you all of your responses. I haven't been checking the board since I got home from my graduate residency last week. Now, wouldn't you know it, I'm completely back in the land of D. It's not horrible - about twice/day, but I feel like my stomach can't handle anything. My naturopath had me add in acidopholus last week, and I think I'm not handling it well. I looked at the bottle and it said that it contains rice powder, so I'm not sure whether it's the rice or the acidopholus - or maybe both. Yesterday I forgot to take the prescribed dose in the morning, and so I took it at night, a few hours after I'd eaten, and within ten minutes I was completely bloated and crampy. The cramps are still going as I write, thought not as bad as last night. I know that my case of MC is nothing compared with what some of you have described, but I'm almost tempted to go back on the prednisone for another ten days, because clearly the imflammation hasn't healed enough yet for me to handle much at all. I'm still eating very, very plain foods - staying away from all grains, including rice and corn, dairy, soy, and oil (though sometimes I add a tiny bit of flax seed oil to my potatoes). I also eat an avocado in the morning for breakfast with a banana and boiled eggs. Do you think the avocado might be too rich at this point? Eating lots of fish, pototoes, cooked carrots, eggs, bananas, and sometimes some cooked zucchini. And all of it's going straight through me. Any advice?

Thanks,
Beth

mle_ii · Post by **mle_ii** » Sun Jan 21, 2007 12:24 pm

Why is your Dr giving you acidopholus? Was a stool test done to determine what bacteria you're missing? If you already have enough of this type of bacteria then it's going to make you worse rather than better.

bobh · Post by **bobh** » Sun Jan 21, 2007 2:02 pm

Have you been steady on the Entocort? How much? Did you take a "break" during the times of constipation? From what you are saying, I would be taking 3 Entocort first thing in the morning, all together. And to "put the fire out" I would take 2 immodium before bed, and 2 upon rising for up to 2 days in a row, just to stop the rapid transit time. That tends to put undigested food where it doesn't belong, causing more irritation, on and on.

Beth wrote:... My naturopath had me add in acidophilus last week, and I think I'm not handling it well. Thanks,
Beth

I agree with Mike, a lot of people get gas etc. from acidophilus, and it is a "change" for you so it could be time - coincident. I could be wrong, but I doubt that the lack of flora is the #1 reason for your "D" so I would shelf the acidophilus til you stabilize out, then play with it and see what it does.

With my 4+ month remission, I find I can tolerate just about anything, but still try to eat as healthy as I can. When you are flaring, you react to just about everything - because everything going in your mouth is hitting inflamed guts and it's just hard right now. If ANYTHING has helped in the past, Pepto-Bismal, whatever, I would add that just to HALT the fire. And then the Entocort should help maintain the calm.

I see from your post last week on 1-13-07 you cut the Entocort to one pill a day at that time because of the "C". I'm not a Dr, but Entocort is an anti-inflammatory. I don't see how it would "stop you up". Some meds focus on motility, but I don't think this is one of them. I suspect that the "C" is something that has come & gone in the past, and is just part of the big picture.

I doubt that the Entocort "caused" it, and accordingly, would just keep a stead dose of Entocort so you don't lose momentum on keeping the inflammatory condition under control. If I had to sum up my MC misery in one word, it would be inflammation. That is my enemy, and Entocort is currently my friend.

Beth · Post by **Beth** » Sun Jan 21, 2007 9:20 pm

Hi Bob - yes, I did lower my dosage of entocort a couple of weeks ago, but I went back to 3/day as of last week when I found that I was having D again. Good idea about the immodium. I'll give it a whirl and see if it helps. I've actually never really struggled with C before, but I think that's because I was eating gluten for so many years and ignoring the fact that I wasn't feeling that great while I was eating it. But it certainly kept me regular! I agree with you that the imflammation is the number 1 problem right now - so I'll try the immodium and keep going with the 3 entocort/day, and then if that doesn't help I might have to try the prednisone again.

Thanks for the suggestions and support.

Best,
Beth