need to vent

willabec · Post by **willabec** » Thu Feb 24, 2011 5:28 pm

ok...still waiting for dr. to call me back...it's been over a week! he wanted me to call with an update on being on the asacol for 2 weeks...it has now been 3! things were actually good, even a bit better, until today. actually all day was pretty good...decently formed stool, not completely normal, but pretty darn close....and then at 4:00 today...holy cow! it was like it was months ago! 2 almost normal ones and then a loose yucky one! not complete d but not good! i know i have mentioned this frustration before, but when you have 3 decent weeks and a good day on top of it and then whamo- it's just makes me mad and frustrated! thanks again for listening....trying not to eat too much fiber, trying to figure out what it could have been...no clue!

TooManyHats · Post by **TooManyHats** » Thu Feb 24, 2011 5:39 pm

Are you waiting for him to call you back? Don't. Call till you speak to him. Don't be afraid to be a pest.

willabec · Post by **willabec** » Thu Feb 24, 2011 5:53 pm

i have...i have called a few times already.....supposedly he is in the office tomorrow...we shall see!!

Linda in BC · Post by **Linda in BC** » Thu Feb 24, 2011 10:29 pm

Hi Willabec:

Don't I know what you are feeling! But you know, whenever that used to happen to me, and I simply could not think of anything I ate that I had not been eating before, if I thought long enough about it, (sometimes it took a couple/three days) then whammo! it would hit me, and almost always there was something I could pinpoint it to that I had done differently. One time it was changing calcium brands ( to one with magnesium) Another it was a different GF baking flour mix that had tapioca. If you keep thinking, you might figure it out. I tried to look at those times as opportunities to identify my intolerances. When you have D all the time ( as I had for so many years) you can't figure out anything. Only when you start to have some good days , and then have a bad one, can you learn something new.

Linda

Gloria · Post by **Gloria** » Thu Feb 24, 2011 10:55 pm

Linda wrote:When you have D all the time ( as I had for so many years) you can't figure out anything. Only when you start to have some good days , and then have a bad one, can you learn something new.

Willabec,
I'm not sure if you're keeping a "Winning the Poo" diary where you write everything you eat and the number and type of BMs you're having. I have found that to be my most important tool in determining what's bothering me, particularly once you have some good days and some bad days, like Linda wrote.

Gloria

Gabes-Apg · Post by **Gabes-Apg** » Thu Feb 24, 2011 11:18 pm

even 14 months on in my MC Journey, i have a 'winning the poo' journal, noting BM's (quantity and description) other reactions/ symptoms, fatigue levels, along with detail on the foods, ie if i ate or drank things different if i ate earlier or later.

my experience with MC is that it is always changing, what works now may not work in 6 or 12 months time.

For the past 12 months, my main staple vegetable that i considered one of my always type vegetable had been sweet potato (or yam or kumara) in recent months i have had GERD quite bad, I have reduced the sweet potato intake to about 1/6th of what it was and in a week viola no GERD.

i have mentioned previously that via this type of diary i figured out that i could not eat carrot and cauliflower in the same meal, on their own they are ok, together is a bad combo....

willabec · Post by **willabec** » Fri Feb 25, 2011 9:14 am

i have been keeping poop diary....and a food diary....i don't know if i'm dumb but i just can't figure it out....i mean what really bothers and baffles me is how in one day can i go 2-3 times and have it be good and then the last time be horrible? i just don't get that issue? that's why i think i am having trouble figuring out what food i am reacting to- agree?? if i had d or loose stools the entire day, it might be easier, no?? i just don't know.....

Linda in BC · Post by **Linda in BC** » Fri Feb 25, 2011 11:05 am

It sounds like you are doing everything right, Willibec, and we do know how frustrating this can be. I have been reduced to tears on more than one occasion from exactly what is happening to you. I agree, it all points to that you are reacting to some specific food you're eating and not to the rest of what you eat. The problem is one has no idea of how fast or slow one's motility is.. ie that reaction could be from a food you ate two days ago, or just an hour ago. What i did was try to gauge how quickly food was going through me on average ( by bowl gazing, I'm afraid ). Trying to recognise something undigested ( ah.. that was the corn I ate last night!) Sometimes I was quite surprised at how long it was taking, like when I would see yesterday's lunch item but not until the next morning or afternoon. Then once you have a sense of that, you can start to think of what you ate then. Or try very hard to identify something in the offending pooh for clues.

You are not alone in experiencing this, nor in the frustration, believe me. But you are on the right track. Just keep being a food detective. It is most likely there that you will find your answers, in my experience.

Hang in there, Willibec!

Linda

Post by **tex** » Fri Feb 25, 2011 2:37 pm

willabec wrote:i mean what really bothers and baffles me is how in one day can i go 2-3 times and have it be good and then the last time be horrible? i just don't get that issue? that's why i think i am having trouble figuring out what food i am reacting to- agree?? if i had d or loose stools the entire day, it might be easier, no?? i just don't know.....

Unless you eat a high volume of food, it is not common to have more than 2 BMs per day, so the fact that you are having more, suggests that all is not well, even on your "good" days, (unless you normally had that many BMs before you developed MC, but even in that case, 3 is a lot). The reason why they deteriorate in quality, as the day wears on, is because overnight, your colon has plenty of time to extract water, in order to produce a properly formed stool. With additional BMs, though, not enough time elapses for your colon to recycle the water, so the consistency and quality of the stools will naturally deteriorate. IOW, if you're going to pass that many BMs per day, then it's not unusual for the latter ones to deteriorate in quality.

The problem is, you're probably still reacting even on your good days, though it may not be obvious to you. The Entocort is simply hiding your symptoms better on your "good" days. Whatever you are reacting to is probably something that you are eating every day, or at least often. Are you eating any dairy products or soy?

Tex

willabec · Post by **willabec** » Fri Feb 25, 2011 5:11 pm

according to my dietician, she said that is it not uncommon to go 3 times a day....?????? i do not eat dairy but i eat foods with soy....i am going to switch drs. b/c my dr.s ma called today....there seemed to be confusion at the office b/c nobody seemed to know what meds i was on and how much i was taking...after i told her what i was taking and how much, etc. she said she was going to run it by the dr. and get back to me by 4:30....it is now 6:09 and guess what.....no return call! i am pretty much done with this office....on to one i hope will help me more! i do feel that mc is somewhat diet related but i don't believe it is to such a large extent...i may be wrong but right now that is how i feel. sorry. maybe i will turn around at some point! part of it i think is me b/c i have a limited diet anyway (celiac and now adays it is not too bad) that i really am resistant to giving anything else up! i would prefer to go only 1 or 2 x day and don't feel that 3 x is all that bad.....and really the last 2 weeks i pretty much only went 1-2x i think only 1 day it went 3....

Post by **tex** » Sat Feb 26, 2011 11:02 am

willabec wrote:according to my dietician, she said that is it not uncommon to go 3 times a day....??????

Yes. that's true, especially for people with inflammatory bowel disease, or celiac disease, and people with food intolerances, or those who believe in "colon cleansing" programs, etc. For everyone else, it's rather uncommon, to say the least. 2 BMs per day is not unusual - 3 per day, is.

willabec wrote:i do feel that mc is somewhat diet related but i don't believe it is to such a large extent...i may be wrong but right now that is how i feel. sorry. maybe i will turn around at some point! part of it i think is me b/c i have a limited diet anyway (celiac and now adays it is not too bad) that i really am resistant to giving anything else up!

You should consider going to medical school, because most doctors also believe that diet has nothing to do with MC. That's the primary difference between most of us here, and most doctors. we're not GI specialists, so we're well aware that diet is the most important part of a valid treatment program for resolving the symptoms of MC.

You're certainly entitled to your opinion, and we all have to follow a treatment program that we feel is best for us, personally. You may be able to get by with limited problems, as long as you continue to take Asacol. Please let us know how well this works out for ya, in the long run.

Tex