Worse than I thought
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Worse than I thought
Hi all, I wasn't prepared for how painful this LC can be. I had decided to try diet alone, eliminating gluten, dairy. As long as I stayed on a rice/chicken jello bland diet, things were pretty good. Actually, it caused constipation. Then took one Senna tablet, followed by firm stool followed by mushy then water, all with bad cramps. I also later ate a handful of chocolate chips (my downfall) and the next day, watery chocolate with terrible cramps. I see a pattern here between D and constipation. Meanwhile I have lost five pounds in the last two weeks. Luckily, I have some to spare. Haven't been sleeping nights and Bp is up. Three years ago when I was first diagnosed with LC the Mayo doc prescribed Pepto Bismol. I took it for a couple days, and became normal again. I have a prescription here for 540 Asacols. I have not filled it yet. Today I went on Mayo's website dealing with MC and read about their treatment of this thing. They start with Immodium, then a course of Pepto, then Asacol and similar drugs, followed by steroids if still necessary followed (rarely) by surgery, trying each approach and going to the next, if needed. This is a conservative method, I guess. I am wondering if my local gastro by jumping immediately to Asacol has perhaps not considered the Pepto route first, or at least to try it. Have any of you had success using Pepto? I know Immodium if a quick fix and not a cure, but isn't Pepto a anti-inflammatory treatment? Went thru a particularly painful time this morning, in the bathroom. Afterwards, I could only lay on the bed and hope the cramping wouuld stop. Is this typical? Three years ago I had the explosive D but not the cramping. Actually, the cramping really appeared and worsened after the colonoscopy. Went and bought a bunch of chewable Pepto and going to give it a try. From what I have read on the internet, this is not as serious a condition as Crohns or ulcerative colitis, but one site said it could turn into ulcerative colitis (?) Not a cancer threat. One tends to not want to eat anything, but then just get weaker. Any input appreciated. Sylvia
Do good or do not
Sylvia,
Strangely, some of us have very little pain, and cramps are virtually never a problem, while others have horrendous pain and cramps that can bring us to our knees, when they roll over us. If you are old enough to have diverticulitis, that's another complicating possibility that can cause such symptoms, especially if you are having chills, fever, etc.
Like you, my reactions alternated between D and C, so yes, I experienced those cramps that you describe. I agree that they tend to immediately take all the wind out of your sails.
Yes, provided that you are not sensitive to bismuth subsalicylate, it will bring remission in about 80 to 85 % of cases. The proper treatment regimen is 8 to 9 tablets per day, (or the equivalent amount of liquid), for 8 weeks. Extending the treatment time past 8 weeks can impose a risk of bismuth toxicity, however, so be careful. If you are faithfully following the diet, at that point, you should be able to maintain remission by diet alone, from that point on. Without the diet, though, most members who have tried it, have found that a few days or so after the treatment ends, they will relapse, and be right back where they started, so be sure to carefully stick with the diet.
Asacol is a reasonably good treatment for ulcerative colitis. It is a relatively poor treatment for MC, thought it is reasonably effective for maintaining remission, once remission has been achieved. It is just as expensive as Entocort, for all practical purposes, but far less effective. Many of us react adversely to it, due to the fact that it contains lactose.
You are correct that Immodium is simply a narcotic-type drug, designed to reduce motility in the gut, and Pepto-Bismol does indeed possess certain antibiotic properties.
Many of the GI docs from the big-name hospitals, like to play the "game" from start to finish, hoping to collect data as they go, (IOW, you're the guinea pig for their treatment study program), instead of jumping to the chase, and prescribing Entocort, (where they might have a reasonable chance of success on the first try, so that they wouldn't need to try a dozen other possible treatments). To them it's a game - to us it's the most miserable time of our lives.
Note that if you are reacting to chocolate, you may also be sensitive to soy, (soy lecithin), but the problem could be limited to the chocolate itself, of course.
Tex
Strangely, some of us have very little pain, and cramps are virtually never a problem, while others have horrendous pain and cramps that can bring us to our knees, when they roll over us. If you are old enough to have diverticulitis, that's another complicating possibility that can cause such symptoms, especially if you are having chills, fever, etc.
Like you, my reactions alternated between D and C, so yes, I experienced those cramps that you describe. I agree that they tend to immediately take all the wind out of your sails.
Yes, provided that you are not sensitive to bismuth subsalicylate, it will bring remission in about 80 to 85 % of cases. The proper treatment regimen is 8 to 9 tablets per day, (or the equivalent amount of liquid), for 8 weeks. Extending the treatment time past 8 weeks can impose a risk of bismuth toxicity, however, so be careful. If you are faithfully following the diet, at that point, you should be able to maintain remission by diet alone, from that point on. Without the diet, though, most members who have tried it, have found that a few days or so after the treatment ends, they will relapse, and be right back where they started, so be sure to carefully stick with the diet.
Asacol is a reasonably good treatment for ulcerative colitis. It is a relatively poor treatment for MC, thought it is reasonably effective for maintaining remission, once remission has been achieved. It is just as expensive as Entocort, for all practical purposes, but far less effective. Many of us react adversely to it, due to the fact that it contains lactose.
You are correct that Immodium is simply a narcotic-type drug, designed to reduce motility in the gut, and Pepto-Bismol does indeed possess certain antibiotic properties.
Many of the GI docs from the big-name hospitals, like to play the "game" from start to finish, hoping to collect data as they go, (IOW, you're the guinea pig for their treatment study program), instead of jumping to the chase, and prescribing Entocort, (where they might have a reasonable chance of success on the first try, so that they wouldn't need to try a dozen other possible treatments). To them it's a game - to us it's the most miserable time of our lives.
Note that if you are reacting to chocolate, you may also be sensitive to soy, (soy lecithin), but the problem could be limited to the chocolate itself, of course.
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, Tex for your helpful input. Is there some opinions, then, that Entocort should be the first treatment of choice for LC flareups, or only when other things fail? There sure is a mixed bag of opinions. We are lucky to have a gathering of sufferers here with accumulative experience to share their opinions on what worked for them and others. Today my son-in-law stopped by and shared how his lactose intolerance affects him. I know he uses a LOT of Immodium, and he said if he strays away from his lactose free diet, he sits on the pot with excruciating cramps, so I know others suffer this discomfort, but boy, when it is yourself, they are killers. I had remembered that I ate ice cream and milk last night so that might have added to the problem, but until this flareup, I was eating almost anything I wanted without symptoms, only minor bloating with dairy. Gluten always gave me heartburn, but not D. So it is hard to understand why suddenly these things are problematic. When it started, I felt a headache one day, followed by pain and soreness in the side of my face and mouth (like trigeminal neuralgia, which I get from being in wind) and within the hour I had a broken blood vessel in my eye, and fatigue set in, etc etc. I thought it was a virus. Also the explosive D started same day. So maybe it was triggered by a virus.?? At the same time the place where I was working became just unbearable when two key people left and I was supposed to cover with them with absolutely no instructions or clue what to do, as it was very specialized work. I could feel my blood pressure zooming up and there was no letup in sight as coworkers would not be back for months. It's like it was a "perfect storm" of things all happening at once, and I quit the job but the fallout continues (literallyl). And yes, the gastro mentioned a large amount of diverticuli and that I should eat a LOT of fiber in some form. What to do what to do. Ain't it fun? Well....here's to a better tomorrow. Sylvia
Do good or do not
Sylvia,
The choice of Entocort as the most effective med, (for those who choose to use a med), is the consensus of opinion of the members of this board, (which won't mean anything to your GI Doc, of course). It doesn't work for everyone, but it is by far the most effective, "safe" drug that can be used to treat MC. Everything else is either significantly less effective, or has a much higher risk of adverse side effects, or carries some other "unacceptable" risk.
When someone has lactose intolerance, the lactose passes on, (unsplit), into the colon, where it ferments, causing a lot of gas, which, of course, causes the cramps, bloating, and D. Those of us with MC who have a lot of gas, bloating, and cramps, probably have enzyme deficiencies, (due to the inflammation in our small intestines), and various fermenting sugars in the colon, compound the misery that we experience from the primary reactions caused by the inflammation due to MC.
MC can sometimes behave like Crohn's disease, in that spontaneous remissions can occur, but once the disease becomes active again, all bets are off. You obviously experienced one of those remissions, but you are now back in a fully active mode of the disease. Very, very few of us experience spontaneous remissions, but we do have several other members here who experience spontaneous remissions with some degree of regularly. The timing and duration of spontaneous remissions are impossible to predict, of course.
Yes, that does sound like a "perfect storm" for triggering an IBD flare. And yes, viruses can trigger MC flares.
If I ever had an attack of diverticulitis, I didn't detect it, because I never really had the symptoms that go with an attack of active diverticulitis. I had plenty of MC symptoms, though, and I had to get most of the fiber out of my diet, to allow my gut to heal, so that the MC would resolve. So, you may have to cut the fiber out of your diet, until you can get the MC under control, and then you may be able to slowly reintroduce it back into your diet, after remission returns - especially avoid nonsoluble fiber, with active MC.
Yes, it does get better, and hopefully, spring will be here soon.
Tex
The choice of Entocort as the most effective med, (for those who choose to use a med), is the consensus of opinion of the members of this board, (which won't mean anything to your GI Doc, of course). It doesn't work for everyone, but it is by far the most effective, "safe" drug that can be used to treat MC. Everything else is either significantly less effective, or has a much higher risk of adverse side effects, or carries some other "unacceptable" risk.
When someone has lactose intolerance, the lactose passes on, (unsplit), into the colon, where it ferments, causing a lot of gas, which, of course, causes the cramps, bloating, and D. Those of us with MC who have a lot of gas, bloating, and cramps, probably have enzyme deficiencies, (due to the inflammation in our small intestines), and various fermenting sugars in the colon, compound the misery that we experience from the primary reactions caused by the inflammation due to MC.
MC can sometimes behave like Crohn's disease, in that spontaneous remissions can occur, but once the disease becomes active again, all bets are off. You obviously experienced one of those remissions, but you are now back in a fully active mode of the disease. Very, very few of us experience spontaneous remissions, but we do have several other members here who experience spontaneous remissions with some degree of regularly. The timing and duration of spontaneous remissions are impossible to predict, of course.
Yes, that does sound like a "perfect storm" for triggering an IBD flare. And yes, viruses can trigger MC flares.
Here's the rub: Fiber makes MC flares worse, and can make them last much longer, (because fiber irritates the mucosa of the colon, which is already hypersensitive, due to the inflammation caused by MC). I'm not the perfect person to be offering advice on eating fiber for diverticulosis, because I chose to minimize fiber for the last 10 years or so, because of MC, and my colon is now probably attracting flies in some hospital dumpster.Sylvia wrote:And yes, the gastro mentioned a large amount of diverticuli and that I should eat a LOT of fiber in some form. What to do what to do. Ain't it fun? Well....here's to a better tomorrow.
If I ever had an attack of diverticulitis, I didn't detect it, because I never really had the symptoms that go with an attack of active diverticulitis. I had plenty of MC symptoms, though, and I had to get most of the fiber out of my diet, to allow my gut to heal, so that the MC would resolve. So, you may have to cut the fiber out of your diet, until you can get the MC under control, and then you may be able to slowly reintroduce it back into your diet, after remission returns - especially avoid nonsoluble fiber, with active MC.Yes, it does get better, and hopefully, spring will be here soon.
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.