At least it keeps me humble...

[Courtney]

I've seen it said on this board (and I have thought it myself many times before that) that MC is a very humbling disease. It's hard to get too full of yourself when you're constantly reminded of your humanity in such an obvious way

I'm a bit frustrated with Entocort this morning. I know it can take awhile to see results, but I was seeing results a little bit (or so I thought, but it could have just been the natural cycle of MC), but this week I've had a number of "leaks" and yesterday morning and this morning I've had sort of medium-sized accidents (hope that's descriptive enough, although you've probably heard, seen, and experienced it all ). What a way to spend the weekend! I tend to have the most problems in the morning. Is that true for anyone else?

I'm thinking I may be one of those people for whom Entocort doesn't work. (60-70% doesn't seem like a very high success rate. That's 1-2 people out of 4 for whom it won't work.) I'm already GF, and have to be bc of the celiac. Any other suggestions for managing this with diet? I think that may be my best bet, and I'm willing to make any sacrifices that requires. I'm going to check out the Enterolab option as well.

Thanks for your help. I would feel so alone if I hadn't found this board. (AND I would have felt like I had to trust my GI, which, with as little as he knows about MC, would not be a good thing )

Courtney

[JLH]

I mostly (but not always) experienced D in the mornings, too.

[JLH]

I do not care to be humble on this matter..........

[tex]

Morning, Courtney,

Yep, most of my problems were in the mornings also. Eventually I found that if I got up early enough, (to begin the bathroom ritual), I could usually get by without any significant accidents, and by mid-morning, (after three or four "events"), I would be in pretty good condition to last until about mid-afternoon, and after a brief sojourn to "do my duty again", after that, one trip before bed would usually do the trick. Everyone has a different routine, though, I'm sure.

Most doctors may not be aware of this, and if they are, they may be afraid to try it, but according to the manufacturer's original trials, Entocort can be safely used at double strength, to boost the success rate to around 85%. The trial results that I saw, showed no significant increase in the risk of side effects at that rate, (18 mg per day), than at the normal rate of 9 mg per day. Obviously, though, you wouldn't want to use that rate for any long-term treatment. I can't site a reference on that though, because I lost the bookmark, and I haven't been able to relocate it. It's possible that the manufacturer removed it from the internet, but I doubt that, because it always was very difficult to locate. I found it one day, by accident, while I was looking for something else. I have the bookmark on an old computer, and one of these days, if I think about it, I need to see if I can locate it, because is was a very interesting trial report.

According to Dr. Fine's research, (as noted on his website), virtually all cases of celiac sprue that are not responsive to the GF diet, are due to the concurrent presence of MC, implying that there are probably other food intolerances that need to be discovered and removed from the diet. I've forgotten exactly what you are avoiding with your diet, but dairy products are the main suspect, (next to gluten), and soy is the next in line. If you are already avoiding them, then you might need to consider eggs or corn. It does take longer to achieve remission with MC, than with celiac sprue, however, even if gluten is the only intolerance, (presumably due to the inflammation problem).

Tex

[Gloria]

I see from a prior post of yours that you've been on Entocort for 6 weeks. I think you should be getting pretty stablized by now. The frequency and urgency should be less, but the type of stool you're having will depend a lot on how well you're avoiding your food intolerances. We are all different, but that was my experience.

Entocort manages the symptoms of this disease, but diet is what allows your intestines and colon to return to normal. We take Entocort so that we can resume living a fairly normal life until the diet can take over.

I didn't have more problems in the morning. Mine seemed to be spread throughout the day. Even on Entocort, I never had just one BM a day; usually it was two. Now that I'm getting off the Entocort, I seem to be going back to one per day.

Gloria

[Andi]

Courtney,
You are so NOT alone, probably most everyone here knows how you feel. Morning are the worst for me as well. Even if the rest of my day is ok for MC, every single morning without fail I am miserable. I get up an hour before I need to be anywhere (gym, work, etc...) to take anti-diarrhea pills. I spend a good deal of that time in the bathroom, and then I can usually leave my house. I get to my gym at 5am so for the past year or so I have to get up at 4am just so I can leave my house for the gym. I then have to take more anti-diarrhea pills when I get home just so I can get to work. By the time I get to work I am usually ok for a few hours. During the worst part of the MC cycle I am never ok, I cannot go for more than a few minutes without needing a bathroom for any part of the day. Luckily the worst cycle only seems to happen a couple of times a year.
You are so correct in that it is a humbling condition. I had to tell my boss about it because there are parts of my job I cannot always do (go out in the woods for hours, go on long car trips to meetings and such). It is horrible to have to tell you boss about your bodily functions.
How do others handle the humiliation that this condition can cause?
I am sorry about your accidents, I can sympathize so much with you.

[tex]

Andi,

MC is an inflammatory bowel disease, (in the same class as Crohn's disease and ulcerative colitis), but it does not get anywhere near the publicity, (nor the research funding), that the other IBDs get. Almost everyone you will meet, will never have heard of it, let alone know anything about it. The truth is, though, that MC can be just as debilitating, and life-altering as the other IBDs, so you might point out that fact, if someone tries to tell you that "a little diarrhea" shouldn't keep you from doing your job, (or anything else, for that matter).

During a flare, many of us carry spare clothes, and even wear "Depends", if we absolutely have to be out and about on those days when we shouldn't be.

Tex

[Courtney]

Thanks for all your support and suggestions. Tex, I've definitely been there with carrying the extra clothes around. I've been lucky, though, in that the mornings are definitely the worst times, and I'm usually okay for at least a few hours after the initial bathroom visit.

I wonder if, when explaining MC, anyone relates it to Chron's or UC? It might help people to understand, although I think the symptoms of those are quite different. Although I could see that that might also only serve to again divert attention, and research funding and understanding, away from MC. In the meantime, I'm working on figuring out my food intolerances and figuring out what's in which foods! Gluten, dairy, and soy (all of which I know are problems) are in everything! Good thing I like to cook. I see quite a bit more of it in my future.

Courtney

[Babsey]

I also have a big problem first thing in the morning. Weekends are terrible since it's the only time to sleep in longer and the second I start to wake up, I have severe cramps and have to run to the bathroom. That goes on at least three times and by then, I'm wide awake. For the past couple of weeks, I've eliminated eating dinner and that has helped for the following morning, but I know it's unhealthy and I cannot continue to skip dinner night after night. My eating has become very sparatic and although it helps with the D, it helps nothing else as far as fatigue and feeling unhealthy.

In the very beginning of this nightmare, I was going all day long. Once I stopped the Colazal, I can usually make it most of the afternoon without having to go. Funny how I got into a schedule almost. I think I'm part of the small percentage of people where the meds made me worse.

Tex, to answer your question in a previous post, I thought that this started becuase I had taken Buspar for anxiety for about three days. I thought it was a side effect of that, but when I stoped taking that, the D never went away. I had taken about a three-month course of antibiotic last October for a root canal abscess. Do you think I would start the MC 6 months later? I have racked my brain trying to figure out why I got this. At first, my PCP said, "IBS" due to nerves with trying to build the house, my older daughter graduating high school and starting college, etc. I never had C-diff or any other bacteria, that is what they tested me for first, before the colonoscopy and biopsy and the MC diagnosis.

I can't remember if it was Andi or Courtney or someone else who mentioned trying to manage families and jobs with this disease and finding it difficult at times. I work for a neurologist and it is only him and I in the office, so I did have to mention this so he would be aware of it. Thankfully, he is pretty understanding and also has some training as an Internist so it's been okay. But, being alone in the office and trying to time out when I have to go, which you all know is nearly impossible, with patients coming and going and the phone, etc. I have found that the less I think about it and worry, the better it is.
My family still doesn't quite get the whole picture. I feel like a loser at times when i cannot volunteer for school things and marching band trips with my younger, etc. But, I tel myself that I can only do what I can only do.

Thank goodness for this site and for Tex and the others who maintain it on a daily basis! My husband just asked if I was on my potty club site! LOL
I said, "YES, I love these people!"

[tex]

Courtney,

I often mention that the symptoms of MC are very similar to the symptoms of Crohn's and UC. The main difference is that with Crohn's or UC, patients often pass blood, which never happens with MC, (unless a C. diff infection is present, or something of that sort). Of course, with the lesions in the epithelia of the colon, Crohn's and UC patients sometimes have to resort to surgery, in order to get rid of sections where excessive blood loss, or perforations might become a serious risk, and that is also something that never happens with MC.


Babsey,

There isn't enough information available on Buspar to statistically determine if it might be a risk for causing MC, but I note that while it is not an SSRI, it works in a similar manner, and SSRI's have definitely been linked with triggering MC.

On the other hand, it's certainly possible that the antibiotic treatment could have resulted in a gut bacteria imbalance that degenerated to the point where MC was triggered. It's difficult to say, since six months is a rather long time, but I think that it could also be possible for MC to be triggered by a combination of things.

Considering the history that you described, leading up to the onset of symptoms, I would be rather suspicious of the Buspar. While it's true that D caused by meds will often stop when the med is discontinued, that doesn't necessarily hold true if MC is triggered, because MC can result in a self-sustaining reaction.

Tex

[JLH]

How interesting. I took Prozac for quite a while.............

I probably would be on it except that I read that it, like so many other drugs, can cause hair loss.