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I haven't been on lately because of work. I've been traveling again ... Louisville and Los Angeles last week alone. This week is Indianapolis. That should be the end of it for the year.
I have been having problems with both my MCC and headaches from the neurological issues I'm dealing with. Last week the hotel served me a supposedly GF meal, but it wasn't. Within about 10 or 15 minutes I was dashing to the restroom and barely made it in time. Lots of explosive, watery D. Then two days later I got a massive headache. I suppose it could be triggered by gluten, but the headache was in a different location than my usual gluten-instigated migraines. When I was flying home Friday, I was standing in line near tears waiting for security. It wasn't the worst headache I have ever had, but it was bad and the chronic pain was wearing me down. I still had the headache yesterday, but gratefully today it is gone.
I'm experiencing constant diarrhea in piles and "soft serve," interspersed with watery. I'm trying to be very careful of what I eat. I went off Entocort in mid-September when I fell ill from the neurological issue. I like being off it because my air isn't falling out as much as it was on the medicine. Yet, I have a sense that I may be missing something. I did take Imodium after getting glutened and it gave me peace for a couple of days. Would taking Imodium as needed be as effective as Entocort?
I need to get a grip here. I am frustrated, tired, and concerned that I am not getting enough nutrients.
I'm sorry to hear that you've had such a rough week. I hope your digestive system settles down pretty soon.
Sharaine wrote:Would taking Imodium as needed be as effective as Entocort?
Imodium can certainly help to limit the D, but it works by slowing down motility, not by suppressing the inflammation that is causing the D, (which Encocort can do). While D is mighty inconvenient, remember that it's a procedure used by the body to remove toxic items from the system as quickly as possible, so in a sense, it's possible that D may help to limit inflammation. Of course, there are exceptions, because at times, chronic D seems to be self-perpetuating.
I hope this proves to be a much better week.
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.
I couldn't remember what Entocort did exactly. Now I understand. I do have a bottle full of Entocort. I am seeing the neurologist tomorrow. After I talk with him about the headaches and get a sense of where I'm at in that regard, I'll contemplate returning to Entocort. I just HATE that it makes my hair fall out so fast. I like my hair. I don't want it going away.
Oh, Sharaine, I'm so sorry - the stress of juggling health conditions, along with the wear and tear of travel, are already enough, without being served stealth gluten. I'm so sorry you had to deal with pain in an airport (which always strikes me as a place with all the charm of a hospital, without hope of actual help).
Hope things are looking up. I can see why you'd be concerned about your hair falling out, and not only out of concern for appearance (but that, too!).
Wow, I didn't know hairloss was a side effect of entocort. I don't do well with immodium because it feels like I'm simply putting a plug on the D. It may delay things enough to travel and do things, but I start to get gassy and eventually the D makes it's way out, usually explosively. It just seems to delay the eventual D, and add discomfort along the way. I do much better on Pepto tablets, but I think I recall it didn't do anything for you? Maybe now that you're GF and have progressed to soft piles (yes, that's good progress!), it might help somewhat?
So sorry you've been having a rough time. Interesting how different we all are in our response to medication. I used to be fine with Pepto, but somewhere along the line, it stopped working for me, and started to make me worse instead of better.
As for imodium, it tends to give me a little bit of bloating and stomach pain, but not enough to outweigh the benefits. It not only slows down the motility for me, but actually firms up the BM's for a couple of days.
This all gets back to the idea that we each have to figure out what works best. I have also noticed that reactions to various foods and medications change as time goes by - it is a very fluid process, as what works today may not work tomorrow.
My personal experience has taught me that staying flexible with this disease is of utmost importance. The very positive thing is that I feel strongly that I'm moving in the right direction, even though there are ups and downs along the way.
Good luck with figuring out what works for you in the next chapter of your MC management .
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
I personally know how rough this disease is with business travel, hang in there. If you decide to do Entocourt again maybe you could "move thru the levels" a little quicker to get down to one pill quicker. I too had the hair loss, particularly at 3 pills. I was prescribed 4 weeks at the typical dose of 3 pills, 4 weeks at 2 and 4 weeks at 1. I had severe dizziness with the 3 pills moved onto 2 pills after only 3 weeks and then was on two pills for two weeks and just today I'm trying one pill for the first day. I'll try to be on one pill for awhile. From the get go I had severe side effects and knew I had to move thru the levels quicker.
Kari wrote:As for imodium, it tends to give me a little bit of bloating and stomach pain, but not enough to outweigh the benefits. It not only slows down the motility for me, but actually firms up the BM's for a couple of days.
I've found that the trick with Imodium is to use the right dosage for your body. When I first tried it, I took two a day as the packaging suggested. I felt bound up and lost interest in it for a few years. Now, I take 1/2 pill when bathroom trips are unpredictable and one may not be available. It seems to take away all gas and bloating, and, like Kari, firms up the BMs for a couple of days. It's great when I use the right dosage.
Gloria
You never know what you can do until you have to do it.
I am right now on one Entocort a day. I take Imodium about every other day just to be sure I can get out and around and have a life. It doesn't bother me at all. All I'm shooting for is predictability; let me know that I'm getting up in the AM and know I will be able to get out of the house in a reasonable amount of time, and if I have to go during the day, give me enough time to get to a restroom. That's my new normal.
Dee advised me to go on entecort. I am hanging behind because I so don't want another steroid med inside me. OTOH I can see the benefits of doing it to contain the inflammation so I can "fine tune" my diet.
Between the C caused by the Norco, and the D caused by...who knows? I need to find out and get myself onto a better track.
I so don't want the side effects. I am just beginning to recover from the prednisone.
Tomorrow is another day said Scarlett O'Hara. For me too.
You will likely find that Entocort is sooo much easier on your body than prednisone. My prescription for Entocort sat for a month before I initially filled it. I was so reluctant to take a steroid, especially after experiencing the jitteriness, restless sleep, etc. from prednisione.
I've had literally no side effects from Entocort, no problems withdrawing from it, other than my MC symptoms return in time. Some here have had dizziness and headaches, but I believe that the majority who take it find it to be a very easy steroid to be on.
Both Dee and I have been on Entocort for several years w/o any problems. I've also thought you should try it so that you can better tweak your intolerances.
Good luck with your decision.
Gloria
You never know what you can do until you have to do it.
Thank you so much Gloria.
I am thinking about it. Waiting (and hoping) for the diet to begin to help. If I suppress my symptoms how will I get the diet right? How will I find out what bothers my gut?
It's pretty impossible to figure out what foods are causing problems until you begin having some good days as you've noticed by now.
The best way to use Entocort is to see it as your partner in determining your food intolerances, not as an immune suppressant. Once your symptoms are stabilized, you can begin reducing the dosage until you begin having periodic symptoms that you can identify with a food you've eaten. This is more easily determined using a food/BM results diary.
Midnight here - time to go to bed.
Gloria
You never know what you can do until you have to do it.
Sorry to hear you got glutened. It's always a risk when eating out. Do you take a "care" package of foods to have on hand when you are traveling? I am one who has no problem taking my own (full) plate of food from home to a restaurant! I just nuke it as I leave the house. If the wait staff questions me, I just explain that I have allergies and can't trust any food I don't prepare myself. My hubby and friends are no longer embarrassed by this behavior, luckily!
I agree with Gloria and Kari about the value of Imodium. For me, 1/2 pill once or twice a day helps to keep me on track when I am going through major stress (even though my MC is in full remission). I use it preventively. By slowing gut motility, this allows for more water to be absorbed in the colon, thus firming up the BMs.
Good luck. Now that your travaling is over, you will have a chance to stabilize.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Visit the Microscopic Colitis Foundation Website
I don't want it going away. 
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