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It seems like for the past 4-5 weeks I've really been struggling with a flare, and I just can't seem to calm it down. I thought it was mainly related to the stress of the holidays, but those have come and gone and here I am, still trying to keep it together.
My stomach is just killing me.....every day, pretty much all day long. I'm using a heating pad at my desk at work just to get me thru the day. The old friend diarrhea of course is present here and there, and I'm having a very difficult time running at all, let alone doing any cardio workouts. When I do try to run I've been limited to the treadmill so I can be closeby to a bathroom. I can barely run 2 miles before I have to stop and go to the bathroom.
I did have some popcorn recently with some butter topping that I discovered contained soy, so I've eliminated that from my diet. It seems I can't even hardly eat a small bowl of plain white rice without incurring some type of pain and/or diarrhea lately. My diet hasn't changed at all since before the flare with the exception of the popcorn.
Does alcohol affect MC? I did have a glass of wine here and there over the weekend, but nothing over the top. I'm just scratching my head trying to figure out what the heck is going on. I've had wine before with no ill effects to my stomach, so maybe I am grasping at straws.
I seemed to be responding to the Entocort when I started.....I'm still on the full dose of 9mg a day. Is it possible to build up a tolerance to it?
I'm going to call the doc tomorrow and see if I can bump up my appointment....gee, I can't wait for that.
Anyway, just was curious about the alcohol issue....and any other insight anyone else may have. If nothing else it just helps to vent here to folks who truly do understand.
Awwwwwww Jill!!
I'm so sorry to hear that you're really in a flare.
As far as the wine, unless you are intolerant to yeast or sulfites, you should have no problem.
As of yet, I don't recall anyone building up a tolerance to it.
There are so many new members that I can't remember what you have eliminated from your diet.
Also, you can take Lomotil along with the Entocort to help stop the D. I did that when I initally started on the Entocort.
Popcorn might just be a little rough right now for your tummy..
I'm sure Tex will be along to offer more help..
Dee~~~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
I'm sorry to hear that you're still having a flare. If you've been taking Entocort continuously, ever since you started, back in - when was it? - November?, then something may be wrong, and it might even be causing your symptoms. On the other hand, if you stopped taking it, and then resumed again, quite often, it takes longer to get a response, with subsequent treatments.
Popcorn can be very irritating to your gut, when it's so sensitive. Also, most microwave popcorn contains lactose, and possibly other allergens in the "buttery" seasoning. You never can be sure what's in that stuff. About 7 or 8 years before my symptoms started, I tried a type of microwave popcorn that came with a "special" seasoning, that actually caused me to bleed. It took me a while to figure that one out - I thought I had cancer for sure, but after about 10 or 12 days, it finally dawned on me that every time I ate that popcorn, the next day I would bleed, just like clockwork.
There's also the possibility that you might have double DQ genes, which would mean that you would probably have a lot of intolerances. How long have you been taking Entocort?
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.
So sorry that you are doing so poorly and I know you are probably feeling extra bad since you cannot get any workouts or running in. That will come in time. For now, take care of yourself and hope the doc can figure this out. Would be surprised if the wine was aggravating but do agree that popcorn is so rough on the gut and agree with Tex that the flavored ones could have just about anything in them.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
I should clarify on the popcorn issue....it was plain air popped corn, made in my air popper at home. I was putting a little salt and then some butter flavored seasoning that I thought was safe, but I discovered on the label it contained soy, so I stopped using it. That being said, I haven't had any for a good solid week, and I've seen no improvement yet.
My GP had given me a script for Lomotil when I was first struggling with the diarrhea before my diagnosis. I asked my gastro for a refill at my last appt. and he wouldn't fill it, said he felt it was "too dangerous" and I should use Imodium instead, something about it crossing the brain/blood barrier. I'm seriously thinking maybe it's time to find a new doc? I'm going to push the envelope when I see him and if I'm not satifisfied I guess it's time to go doc shopping.
Tex, I've been on the Entocort since April of last year. Three times I had tried to wean down to 6mg a day, but each time I did I would flare up again. So, as of now, I'm on the full dose of 9mg a day. I have taken it continuously since April.
I just don't get it.....so frustrating! I had a dentist appointment yesterday afternoon and was dreading sitting in the chair with those horrific cramps. Funny thing is, when I was reclined back laying down they weren't as bad. As soon as my appt. was over and I was back upright they came back full force.
Is that weird or what???
thanks to everyone for their support & well wishes....it sure does help no matter how cruddy I feel!
Your GI doc seems to be more concerned about Lomotil than most docs, however, he is correct, in that Lomotil, (diphenoxylate), does indeed cross the blood brain barrier, while Immodium, (loperamide), does not, (to any significant extent). That's why Lomitil contains atropine, (because if a patient tries to overdose on Lomotil, in order to get the opioid effect on the brain, the atropine will cause sickness). Both of these drugs are opioid agonists, and they help to control diarrhea by slowing intestinal contractions and peristalsis, which provides the colon with more time to draw moisture from the intestinal contents, thereby reducing the formation of loose and liquid stools. It's possible that either one could cause physical dependence, but theoretically, at least, they shouldn't cause addiction, (though the diphenoxylate could, if the atropine were not present). Obviously, the risk of addiction or dependence could be greater with Lomotil, than with Immodium. If the Immodium is not effective for you, then it should be safe to go back to Lomotil after a reasonable withdrawal period, (daily, long-term use of Lomotil is probably not a good idea).
The bottom line is that Immodium is probably a better choice, since it is somewhat safer, and does not require a prescription. They seem to be pretty much equivalent in effectiveness, though some individuals find that one works better for them than the other.
I didn't realize that you've been taking Entocort that long. Hmmmmmm. I'm beginning to wonder if you might be developing an allergy to it. Were the cramps just as bad back when you started taking it?
I assume that you're avoiding gluten and dairy products, (and soy). Is that correct? If so, how long have you been avoiding all sources of gluten?
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.
Hi Tex,
Thanks for explaining the issues with Lomotil. My doc could certainly learn a thing or two from you on bedside manners and how to explain things in layman's terms.
I was taking Lomotil once a week for my scheduled long runs during my marathon training last year and had pretty good success with it. It seems like when I am running for longer distances I definitely need something stronger to control the diarrhea.
Now if I can just get these darn stomach cramps to go away. The severity of them is certainly a newer development. When I first started on the Entocort I think I responded fairly well, with little to no side effects.
I've been gluten free since April/May last year.....I'm certain I've had slip ups here and there (just like the butter topping I was using last week) but for the most part I think I have done pretty well with the diet. No gluten, dairy, soy.....I'm eating very bland, and have been for some time.
I can't help but think something else is going on.......
After soaking up all the information that you've provided, I have a few thoughts, but remember that this is just my opinion, and I'm certainly not a doctor.
First off, concerning your experience in your dentist's office, I have a hunch that the way your abdominal pain behaved, may be related to possible inflammation of your peritoneum, together with mesenteric stretch.
I don't know how common this is among patients with MC, because I don't recall ever seeing it mentioned in the literature, (though several of us have at least mentioned it, on this board), but when I was reacting, I frequently had severe pains that had to be related to peritoneal inflammation, and/or mesenteric stretch, because sometimes when I was extremely bloated, I had intense pain, often targeted at my belly button, and pelvic region, that felt as if something was on the verge of being torn in two.
The peritoneum is the lining of the abdominal and pelvic cavity, and it both supports the abdominal organs, and serves as a conduit for their blood vessels, lymph channels, and nerves, through the extensions of our mesenteric system, which consists of strands of membranous connective tissue. In effect, our major abdominal organs, including the liver, stomach, small and large intestines, etc., are hung via cords connected to the diaphragm above.
You're probably familiar with the term "stitches", which refers to the upper-abdominal pains that can occur during athletic events, due to repeated cyclic impact on the body, and the negative effect of habitually timing breathing, (IOW contractions of the diaphragm), out of sync with the impacts, (such as the impacts that occur when a runners feet strike the ground). If so, then you're probably aware that a "stitch" can be rather quickly relieved, simply by lying on the ground, to give the diaphragm and the mesenteric system a few seconds to recover, without any pressure from the internal organs pulling down on the diaphragm, and then by changing the synchronization pattern between breathing and foot strike, after resuming the race.
Anyway, I'm guessing that by assuming a prone position, the pressure on your mesenteric system was relieved, which noticeably reduced the pain. I know that when I was having issues such as that, lying down definitely helped to reduce the pain, though it usually wouldn't totally eliminate it.
Regarding the cause for the pain in the first place, as I mentioned before, you may have the genes that predispose you to additional food intolerances, but we don't have gene test information available to verify that, so we'll have to try to eliminate all other potential problems, first. Have you carefully checked any supplements or medications that you may be taking, for the major allergens?
There's certainly a chance that you may have developed an intolerance for budesonide, because as long as you have been taking it, you should be having only minor problems by now, regardless of minor diet indiscretions. Gluten damage can take a long time to heal, but after 8 or 9 months on the GF diet, your gut should have healed enough to at least minimize reactions. It sounds as though you are having a full-blown reaction, though.
I hesitate to suggest that you try to taper off the Entocort, to see if it's the problem, (since I'm not a medical professional), but you might want to check with your doctor to see what he/she thinks about doing that. If you can spare $149 for a gene test at Enterolab, that test result would give us some information on just what you might be up against, as far as your genes are concerned, and might shed some light on whether or not you might be prone to numerous intolerances. The test only requires swabbing the inside of your cheeks with a cotton swab, to gather DNA material, so it's quick and easy. It takes about two weeks to get the results. It's certainly not essential, though, if you don't want to do that.
Also, if you feel that Lomotil would be more helpful than Immodium, you could probably get your GP to renew that prescription for you. GPs are usually a lot more understanding than GI docs.
As you mentioned, we're probably overlooking something here, but maybe if we put our heads together, we can figure out what it might be.
Love,
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.
Thanks for all the great information....lots of food for thought. Your explanation of the stomach cramps and the mesenteric stretch is quite interesting. I can totally understand the comparison of side stitches, I've had my share of them!
I haven't been able to get a call into the doc yet, as they had a water main break and they have been closed. It's good because now I have a list of things to discuss with him.
Another question, if you can stand it..... I haven't had any testing at Enterolab simply because of price. Can I still have just the gene testing for $149.00 you mentioned? Would that give me an idea of the intolerances, or do I need to have all the other testing done first?
Thanks, as always, for all the information, support, and guidance. Caring people such as yourself and the members here make the world so much sweeter.
Some insurance companies will pay for those tests, if a doctor orders them. The bad news is that a lot of doctors are prejudiced against stool tests, because in the past, there were apparently some companies offering stool tests that were petty much rip-offs. Consequently, a lot of doctors still don't realize that these tests not only work as advertised, but they're much more accurate than even the best blood tests, for determining food intolerances. A doctor might be more willing to order the gene test, since it's not a stool test.
At any rate, yes, you can order just the gene test by itself. The gene test will not tell you if you are intolerant of anything, it will only tell you if you have any celiac genes, or any other genes that predispose to gluten-sensitivity. Also, the test specifically pinpoints exactly which celiac and/or gluten-sensitive genes you have. The gene test is most helpful, IMO, for the most difficult cases, because it gives us an idea of what to look for when a treatment plan isn't working. IOW, about 27% of those tested so far, have double DQ genes, which means that we need to look for many intolerances, in those cases. For most other combinations, there will usually be fewer intolerances, so we may need to look for possible overlooked gluten, or a change of meds, or something of that sort. There's still a heck of a lot that we don't know about this disease, so a lot of this is just guesswork, or trial and error, until we get a better idea of why some things work the way they do, and why things work for certain people, but not for others.
If we knew in advance what the gene test would show, it would be easy to decide whether or not it would be worth the money. As it is, though, it's a toss of the dice, because it might not show us anything that is helpful. If you have to pay for it yourself, that's certainly something to consider.
You're most welcome - I just wish that we could find the key that would bring you remission tomorrow.
Love,
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 finally got an appt. for tomorrow morning with the gastro to see if he is going to be willing to help me resolve this problem. It could be an interesting day to say the least. I don't expect a positive reaction when I tell him of my plans to run a 1/2 marathon in April and a full marathon in the fall, especially with the problems I am having now.
Maybe I will get lucky and he will drop me as a patient.
I've got to get things under control again, the sooner the better. I doubt he will order the gene test, but I will at least bring the subject up.
I just can't really swing the extra expense now if I have to pay for it....but with time I may be able to save up for it if things aren't better by then. Money is very tight for us right now, just like for a lot of folks. But, we'll get by & find a way if things aren't improving!
I'll let you know how tomorrow goes. Thanks again!
Gallbladder pain is the result of eating a meal that contains fat, (when the gallbladder isn't functioning properly), and the pain usually begins soon after eating, and lasts for several hours or more, but I believe that for most gallbladder patients, the pain will usually resolve completely, after a while. The pain should be centered just under the ribcage, just a little right of center, and it often radiates through the body, so that it can be felt in back. It's often described as an excruciating pain, and rather steady, until it finally fades away.
Gallbladder disease seems to be connected with MC, as a number of us have had our gallbladders surgically removed. However, it is best not to undergo gallbladder surgery unless the gallbladder is actually diseased and malfunctioning, because gallbladder surgery often results in chronic problems with D, for many patients, because bile, (in the proper amounts), is required for the proper digestion of fat. You are correct, of course, in saying that D can be caused by a malfunctioning gallbladder.
Good luck with your appointment tomorrow.
Love,
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.
Visit the Microscopic Colitis Foundation Website
Awwwwwww Jill!!
