Hello Norman!
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Norman!
Norman showed up yesterday morning and again today! Woo Hoo! For the first time since September 17th, I feel normal.
Norman has been a faithful houseguest for over a week and I'm grateful, but now I'm starting to have the opposite problem. While I'm not constipated, I'm having to strain to go and I seem to be going very little each day. I'm wondering if this is a pendulum effect and my digestive system will swing back to the middle? I've got a call into the GI to see if I should cut back on the entocort already rather than waiting for another six weeks. Mind you, I'm not complaining; I just want to find a good balance for recovery. Did anyone else experience this on entocort?
That's somewhat common with Entocort. Assuming your GI doc understands how to use Entocort to treat MC, he'll recommend that you lower your dosage. If he doesn't, and I were in your shoes, and I wanted to avoid the problems of increasing constipation, I would lower it anyway.
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
with Tex.Got the OK to lower to 2 a day and if it doesn't produce any changes, he says he'll lower it to one. My goal is to get off them completely with no relapse. I'm so grateful to get to lower the dosage before any side effects kick in. The two I was most leery of were moon-face and losing my hair. So I'd be comfortable on one entocort a day for six months to let everything heal. Which brings up something I've been thinking about. I read somewhere in one of the threads about relapses and how some people defined them as having bouts of D or soft stools a couple times a week while others defined them as ongoing D several times a day. Is there a clinical definition for relapse, or is it, as I suspect, defined by each one of us when we're in that place somewhere between normal and all out D. For me sometimes having bouts of D or soft stools two or three times a day a few days a week was normal; so until recently I wouldn't have thought that to be a relapse. Perhaps I need to redefine what normal is. Also, since the immediate problem has been solved and Norman is hanging around, I've found myself starting to think about how I redefine my life now that MC is a part of it. I'm not going to let it define me, but I'm not sure how it fits in my life in the long run. I guess that will depend on what remission looks like for me.
To me, a relapse is a return of symptoms on a chronic level. IOW, a setback of a few days may be annoying, and it is indeed a setback, but it's not necessarily a relapse, unless the reaction becomes chronic. I base that definition of a relapse on the definition of the disease - MC is a syndrome of chronic symptoms, often, (but not necessarily always), marked by watery D. That doesn't mean that symptoms must be present every day, it just means that they must recur on a continuing, (often cyclic), basis, (IOW, a chronic schedule).
When we're in the healing stage, it's common to have setbacks from time to time. Whether or not we consider them to be relapses is sort of moot, because usually they are short-lived. If they are not, and they can't be resolved, then they constitute a relapse.
That's a good sign, that you're pondering your future, because we each have to reconcile the disease with our lifestyle. We have to always remain aware of our need to avoid doing anything that might cause a relapse of symptoms, but after a while, it becomes second nature, so that we automatically make the right decisions, on a day to day level. We eventually become comfortable with living with MC, and while we will always continue to respect it, we certainly don't allow it to define us, and we don't allow it to micromanage our daily lives. While we can't totally ignore it, we eventually come to treat it in pretty much the same way that we would treat any bad habit - we reluctantly put up with it.
Tex
When we're in the healing stage, it's common to have setbacks from time to time. Whether or not we consider them to be relapses is sort of moot, because usually they are short-lived. If they are not, and they can't be resolved, then they constitute a relapse.
That's a good sign, that you're pondering your future, because we each have to reconcile the disease with our lifestyle. We have to always remain aware of our need to avoid doing anything that might cause a relapse of symptoms, but after a while, it becomes second nature, so that we automatically make the right decisions, on a day to day level. We eventually become comfortable with living with MC, and while we will always continue to respect it, we certainly don't allow it to define us, and we don't allow it to micromanage our daily lives. While we can't totally ignore it, we eventually come to treat it in pretty much the same way that we would treat any bad habit - we reluctantly put up with it.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex, this is a helpful way of thinking about this, and it matches my experiences. People not living with a chronic condition have ups and downs, and "off days," and think nothing of it. It does behoove us to ponder on an off day whether there's something we should take note of (diet, stress, some other change... luck...) - but it's not always possible to be certain what exactly caused a particular 'flicker' in the MC firmament.
I think my overall experience is a more important indicator than where I am exactly on a scale from XD to Norman, on any given day. If I'm somewhere in the middle heading in a Normanly direction, but I have discomfort, poor energy, urgency/frequency - something's up. If I'm somewhere "imperfect," but feel like a million bucks, and barely think about my internal organs because I don't need to - well, maybe I ate something, and it's good to make a note, but I don't worry about it too much. I'm looking for the bigger 'themes' in the picture, if you now what I mean. I hope I'm paying attention to the details, but not over-weighing them (because sometimes a bad day might just be a bad day, and not a sudden new intolerance... unless it is).
Sara
I think my overall experience is a more important indicator than where I am exactly on a scale from XD to Norman, on any given day. If I'm somewhere in the middle heading in a Normanly direction, but I have discomfort, poor energy, urgency/frequency - something's up. If I'm somewhere "imperfect," but feel like a million bucks, and barely think about my internal organs because I don't need to - well, maybe I ate something, and it's good to make a note, but I don't worry about it too much. I'm looking for the bigger 'themes' in the picture, if you now what I mean. I hope I'm paying attention to the details, but not over-weighing them (because sometimes a bad day might just be a bad day, and not a sudden new intolerance... unless it is).
Sara