Ditto on Gabes and Tex. I have found that sticking to a simple set of easy to digest foods to be a absolute key part of my health, even with the entocort.
--Joe
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Thank you, Gloria, Gabes, Tex, Joe. I was having a bad day obviously. The information you all post makes perfect sense.
I am going to try the every other day thing with the Entocort and change up my diet some. I get the simple foods, but have to admit it ain't always easy.
Also, I was thinking about the association between what is going in my mouth and my anxiety about how it is going to come out. I am working on not stressing about it so much. I guess I just need to be reminded about that and start practicing what I preach.
Anyway, I'm feeling a bit better and hopefully on the right track.
I do have a question though. This last week has been the worst that I have felt since all this started over a year ago. Recap of how I got to where I am today. Last April 2009, I started going to my PCP with complaints of diarrhea, fatigue, stomach pain, nausea. She told me that it was stress or a virus. Blah, blah, blah. I knew that something was wrong with me, but I wanted to believe that she was right. Several months later, I ended up in ER with blood in my stool and worst stomach pain ever. There they did some tests and sent results to my PCP that I was positive for C-diff. She Rx'd Flagyl once for 10 days and then again for 14 days. Against her advice, I followed up with a GI specialist (waste of time and money she said). He recommended scopes due to my age and the fact that I had not been on antibiotics recently. Biopsies showed LC. I went six months taking Imodium and tweaking my diet. I scheduled another appointment with GI and that is when he thought I should try Entocort. I have been feeling much improved until recently. I have since fired that PCP and found a new one. He is alright, but he wants me to go through GI for any issues that pertain to this.
My question is, and I think I know the answer, should I have been tested again to ensure that the C-diff was gone? Could I still have infection all this time? I was given the supplies from the lab to do a follow up test, but at the time I did not have D. I figured I would know it when/if I still had it. I was concerned about the possibility of false negatives and how long I should be off of the Flagyl before I was tested again.
Again, thanks to all. It really is reassuring to hear from others who are actually going thru this and understand. I believe I would be crazier than I am if it were not for this group!
Happy 4th of July-
Rebecca
I am going to try the every other day thing with the Entocort and change up my diet some. I get the simple foods, but have to admit it ain't always easy.
Also, I was thinking about the association between what is going in my mouth and my anxiety about how it is going to come out. I am working on not stressing about it so much. I guess I just need to be reminded about that and start practicing what I preach.
Anyway, I'm feeling a bit better and hopefully on the right track.
I do have a question though. This last week has been the worst that I have felt since all this started over a year ago. Recap of how I got to where I am today. Last April 2009, I started going to my PCP with complaints of diarrhea, fatigue, stomach pain, nausea. She told me that it was stress or a virus. Blah, blah, blah. I knew that something was wrong with me, but I wanted to believe that she was right. Several months later, I ended up in ER with blood in my stool and worst stomach pain ever. There they did some tests and sent results to my PCP that I was positive for C-diff. She Rx'd Flagyl once for 10 days and then again for 14 days. Against her advice, I followed up with a GI specialist (waste of time and money she said). He recommended scopes due to my age and the fact that I had not been on antibiotics recently. Biopsies showed LC. I went six months taking Imodium and tweaking my diet. I scheduled another appointment with GI and that is when he thought I should try Entocort. I have been feeling much improved until recently. I have since fired that PCP and found a new one. He is alright, but he wants me to go through GI for any issues that pertain to this.
My question is, and I think I know the answer, should I have been tested again to ensure that the C-diff was gone? Could I still have infection all this time? I was given the supplies from the lab to do a follow up test, but at the time I did not have D. I figured I would know it when/if I still had it. I was concerned about the possibility of false negatives and how long I should be off of the Flagyl before I was tested again.
Again, thanks to all. It really is reassuring to hear from others who are actually going thru this and understand. I believe I would be crazier than I am if it were not for this group!
Happy 4th of July-
Rebecca
Rebecca,
Yes, you really should have done some followup testing. The reason is that many strains of C. diff are tolerant of Flagyl these days. Most members of this board who have had C. diff, and who tried treating it with Flagyl, ended up using Vancomycin, anyway, and several of them had to repeat the Vancomycin treatment, in order to resolve the problem, even though Vancomycin is a much more expensive antibiotic. The main question is, "How did you feel after the treatment?" Did you feel well? Or did you still feel sick? If the D had stopped, then obviously the infection was mostly under control, but of course, that doesn't mean that they were totally eradicated.
IOW, it's possible that the treatment might have left a persistent, low-level C-Diff infection, that might be becoming worse, again, or you might have become reinfected, so it might be a good idea to get tested, again. Anytime your symptoms suddenly become noticeably more severe, that raises the possibility of a C. diff infection.
Happy 4th,
Tex
Yes, you really should have done some followup testing. The reason is that many strains of C. diff are tolerant of Flagyl these days. Most members of this board who have had C. diff, and who tried treating it with Flagyl, ended up using Vancomycin, anyway, and several of them had to repeat the Vancomycin treatment, in order to resolve the problem, even though Vancomycin is a much more expensive antibiotic. The main question is, "How did you feel after the treatment?" Did you feel well? Or did you still feel sick? If the D had stopped, then obviously the infection was mostly under control, but of course, that doesn't mean that they were totally eradicated.
IOW, it's possible that the treatment might have left a persistent, low-level C-Diff infection, that might be becoming worse, again, or you might have become reinfected, so it might be a good idea to get tested, again. Anytime your symptoms suddenly become noticeably more severe, that raises the possibility of a C. diff infection.
Happy 4th,
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.
Joe,
Yes, the symptoms are similar, but usually the cramps are more severe. Fever is usually a symptom, and once the infection gets to a certain level of severity, blood often shows up in the stool, (though not always). Most people notice more frequent BMs, also. Frequently there is a persistent pain, often described as a "burning" pain, since the bacteria produce a toxin that causes severe inflammation.
Tex
Yes, the symptoms are similar, but usually the cramps are more severe. Fever is usually a symptom, and once the infection gets to a certain level of severity, blood often shows up in the stool, (though not always). Most people notice more frequent BMs, also. Frequently there is a persistent pain, often described as a "burning" pain, since the bacteria produce a toxin that causes severe inflammation.
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 feel a ton better this morning. I wouldn't say good, but I do feel human.
To answer the question you asked, Tex, about how I felt after completing two rounds of Flagyl..... Well, my symptoms had improved. I never did have a fever, as far as I can recall, but the blood was gone and I stopped getting up 10 times during the night to go. I still had D, mostly in the morning, and my stomach pain decreased from constant to almost bearable. I did have side effects from the Rx also (headache).
I think that has been what I am struggling with currently. What's MC? What's side effects from prescription and OTC meds I'm taking? And what's possibly C-diff? My diagnosis of C-diff and MC were so close together that who knows. Oh, I was also diagnosed with gastritis by ER doc.
Seriously, the last time that I can actually remember feeling "well" was over a year and a half ago. It's not whether I feel "sick" or not, it's more to what degree, depending on the day. I'm currently functioning. I guess that accounts for something. Even as I was typing the above information, I was thinking about that horrible period of time when I was getting up at night either with D or not being able to sleep due to pain. I remember going to my first appointment with GI and when I told him that he said, "That's not normal". Really? What's normal?
Am I going to feel unwell forever? I'm considering discontinuing all medications and picking a few food items to eat and starting from scratch. Is that crazy?
-Rebecca
To answer the question you asked, Tex, about how I felt after completing two rounds of Flagyl..... Well, my symptoms had improved. I never did have a fever, as far as I can recall, but the blood was gone and I stopped getting up 10 times during the night to go. I still had D, mostly in the morning, and my stomach pain decreased from constant to almost bearable. I did have side effects from the Rx also (headache).
I think that has been what I am struggling with currently. What's MC? What's side effects from prescription and OTC meds I'm taking? And what's possibly C-diff? My diagnosis of C-diff and MC were so close together that who knows. Oh, I was also diagnosed with gastritis by ER doc.
Seriously, the last time that I can actually remember feeling "well" was over a year and a half ago. It's not whether I feel "sick" or not, it's more to what degree, depending on the day. I'm currently functioning. I guess that accounts for something. Even as I was typing the above information, I was thinking about that horrible period of time when I was getting up at night either with D or not being able to sleep due to pain. I remember going to my first appointment with GI and when I told him that he said, "That's not normal". Really? What's normal?
Am I going to feel unwell forever? I'm considering discontinuing all medications and picking a few food items to eat and starting from scratch. Is that crazy?
-Rebecca
Rebecca,
I'm glad to read that that you're feeling much better this morning. Just like the other IBDs, this disease can wax and wane. Of course, as we zero in on our optimal treatment plan, the flares should become less and less of a problem. You're quite correct that it's sometimes/often difficult to tell what is causing which symptoms. The fact that you had/have gastritis suggests that your small intestine is probably inflamed, also, which will definitely tend to amplify your MC symptoms.
Most GI doctors' interpretation of "normal", (for MC), and the experience of most members of this board, are world's apart - it almost seems as if we're talking about a completely different disease, sometimes. Of course, most doctors lean toward the "official" description of the disease, (which grossly understates the number and severity of possible symptoms), whereas we have to live with the reality of the disease, and it's debilitating consequences.
The problem with taking more than one medication, (like testing too many food ingredients at once), is that if any one of them causes adverse symptoms, (and many of them do - diarrhea is listed as a possible side effect for many, many medications), then it will be virtually impossible to determine what is causing the problems. Entocort usually helps to suppress the symptoms, (except for a few individuals who cannot tolerate it), but many of us have achieved remission by diet alone, and the key to effective treatment by diet, seems to be to keep it simple, safe, and when in doubt, don't take chances. Doing our own cooking, from scratch, and avoiding cross-contamination in the kitchen, is the safest way to go, by far. Eating out, (and eating processed foods), can be done, of course, but it is fraught with peril, because it requires putting our trust in people who may not know near enough about food ingredients, and the proper handling of those ingredients, to actually be qualified for our trust.
So, no, what you have proposed, is definitely not crazy. It is what many of us have done, to find remission. (I floundered around with the diet, for example, for over a year and a half, keeping a food journal, and experimenting with cutting out all sorts of things, before I finally buckled down, threw out the processed foods, and stuck with a very simple diet. It took almost 2 years before I had healed sufficiently that I could begin to reintroduce foods, but just a couple of weeks after making this change, I could see that I was on the right track, because it was clear that I was doing much better.
A few of us are lucky, and occasionally, achieving remission may be as simple as discontinuing the use of a PPI. For the rest of us, though, it tends to be much more difficult, and requires serious changes, and stubborn perseverance. We have to have the dedication of a crusader, in order to win this battle, but that makes the victory so much sweeter. You'll get your life back, because you're obviously motivated.
Tex
I'm glad to read that that you're feeling much better this morning. Just like the other IBDs, this disease can wax and wane. Of course, as we zero in on our optimal treatment plan, the flares should become less and less of a problem. You're quite correct that it's sometimes/often difficult to tell what is causing which symptoms. The fact that you had/have gastritis suggests that your small intestine is probably inflamed, also, which will definitely tend to amplify your MC symptoms.
Most GI doctors' interpretation of "normal", (for MC), and the experience of most members of this board, are world's apart - it almost seems as if we're talking about a completely different disease, sometimes. Of course, most doctors lean toward the "official" description of the disease, (which grossly understates the number and severity of possible symptoms), whereas we have to live with the reality of the disease, and it's debilitating consequences.
No, if you are motivated, (and obviously, you are), you will definitely not feel unwell forever. I once felt that same way, but fortunately, I discovered a way to climb out of that pit, (the diet), and though it took a while, I knew I would make it, eventually, and I did - and so will you. When the damage is so extensive, it takes a long time for the intestines to heal, but as long as you are very careful with your diet, you will make steady progress. That's not to say that there won't be occasional setbacks, but they will become fewer, less severe, and less frequent, as you heal.Rebecca wrote:Am I going to feel unwell forever? I'm considering discontinuing all medications and picking a few food items to eat and starting from scratch. Is that crazy?
The problem with taking more than one medication, (like testing too many food ingredients at once), is that if any one of them causes adverse symptoms, (and many of them do - diarrhea is listed as a possible side effect for many, many medications), then it will be virtually impossible to determine what is causing the problems. Entocort usually helps to suppress the symptoms, (except for a few individuals who cannot tolerate it), but many of us have achieved remission by diet alone, and the key to effective treatment by diet, seems to be to keep it simple, safe, and when in doubt, don't take chances. Doing our own cooking, from scratch, and avoiding cross-contamination in the kitchen, is the safest way to go, by far. Eating out, (and eating processed foods), can be done, of course, but it is fraught with peril, because it requires putting our trust in people who may not know near enough about food ingredients, and the proper handling of those ingredients, to actually be qualified for our trust.
So, no, what you have proposed, is definitely not crazy. It is what many of us have done, to find remission. (I floundered around with the diet, for example, for over a year and a half, keeping a food journal, and experimenting with cutting out all sorts of things, before I finally buckled down, threw out the processed foods, and stuck with a very simple diet. It took almost 2 years before I had healed sufficiently that I could begin to reintroduce foods, but just a couple of weeks after making this change, I could see that I was on the right track, because it was clear that I was doing much better.
A few of us are lucky, and occasionally, achieving remission may be as simple as discontinuing the use of a PPI. For the rest of us, though, it tends to be much more difficult, and requires serious changes, and stubborn perseverance. We have to have the dedication of a crusader, in order to win this battle, but that makes the victory so much sweeter. You'll get your life back, because you're obviously motivated.
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.
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Gabes-Apg
- Emperor Penguin
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- Location: Hunter Valley NSW Australia
This sums it up!it tends to be much more difficult, and requires serious changes, and stubborn perseverance. We have to have the dedication of a crusader, in order to win this battle, but that makes the victory so much sweeter. You'll get your life back, because you're obviously motivated.
and you know what - you find out who your true friends are. when you do have a victory over the MC demon, both MC friends and non MC friends will celebrate the win with you!
(or they will offer to do your shopping, boil you some rice when you are having a crappy day)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Joefnh
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- Location: Southern New Hampshire
Rebecca wrote: ....What's MC? What's side effects from prescription and OTC meds I'm taking? And what's possibly C-diff?.... Seriously, the last time that I can actually remember feeling "well" was over a year and a half ago. It's not whether I feel "sick" or not, it's more to what degree, depending on the day. I'm currently functioning...... Am I going to feel unwell forever?
Rebecca what Tex and Gabes have echoed really sums this up -- They really are some of the most informed people on this website.
I was in quite a bad way last April when I was diagnosed and had basically the same thoughts that you listed. It can be overwhelming at times, and as I am learning this is a path that is marked by ups and downs, but overall I am seeing a light at the end of the tunnel. For the most part I am seeing results by sticking with the medications prescribed which for me is Entocort and a simplified diet of whole unprocessed foods.
It has taken me 10+ years to achieve a diagnosis which was driven by the symptoms of D, cramping and pain. Prior to that like your experience, I suffered and really never felt good, it was just degrees of bad. During those years there were hints of MC accompanied by fatigue, back pain and leg pains almost on a daily basis.
I was quite thankful for finding this website and more importantly the people here, they are some of the finest individuals that I have had the opportunity to be associated with. I owe more to this group of people than I will ever be able to reciprocate.
Hang in there and certainly stick to the path that works for you, each of us is different and will respond to medications and diets somewhat differently, but at the same time there are a lot of similarities that you can draw experiences from.
Best Wishes Rebecca
--Joe
Joe