Visit the Microscopic Colitis Foundation Website
I am so frustrated. I thought that I was doing really well, have solid bm and down to 4 or 5 a day. Then starting on Monday I have been in the bathroom everyday (and night) with watery d over 12 times a day. Monday night I wake up at 12:30 to make a conference call and I am swimming in a pile of poop (luckily I wore protection) and today nothing but mushy d. I have not eaten anything new as I tend stick to the same things since I know its safe.
Thank you for letting me vent.
Love,
Rose
Just a little frustrated
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
Hello Rose:
Don't get discouraged yet because it's going to take awhile for your intestines and bowels to heal. Your going to have good and bad days for quite sometime before the medications you are on really take hold. Following the medication treatment plan as well as watching your diet very closely with time the pain discomfort as well as the D will change. At first the length of time and how often it occurs daily will become less often.
I have CC and have been on Entocort for 9 months now. I started out taking only 12mgs daily and am now down to only 9mgs per day but when I tried to cut back to 6mgs the watery D came upon me full force so it didn't take a Rocket Scientist to tell me that I better not rock the boat just yet.
Everyone here will do their very best to be here for you and help you get through the many changes you will face as you fight for a remission if indeed this happens.
Love and God Bless:
Jodi
Don't get discouraged yet because it's going to take awhile for your intestines and bowels to heal. Your going to have good and bad days for quite sometime before the medications you are on really take hold. Following the medication treatment plan as well as watching your diet very closely with time the pain discomfort as well as the D will change. At first the length of time and how often it occurs daily will become less often.
I have CC and have been on Entocort for 9 months now. I started out taking only 12mgs daily and am now down to only 9mgs per day but when I tried to cut back to 6mgs the watery D came upon me full force so it didn't take a Rocket Scientist to tell me that I better not rock the boat just yet.
Everyone here will do their very best to be here for you and help you get through the many changes you will face as you fight for a remission if indeed this happens.
Love and God Bless:
Jodi
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
Hi Rose,
Microscopic colitis is a cruel disease. One of the problems is that even if we are close to remission, sometimes we will suffer setbacks, for no apparent reason, and the disease won't even give us a clue as to whether we did something wrong, or it is just being belligerent.
If you told us, I apologize, but I've forgotten whether or not you have tried any of the 5-ASA medications, in the past, (such as Asacol, Colasal, Pentasa, or Lialda). (The doctors have a big advantage on us here, since they always have a patient's complete file in front of them, when they are discussing a case). As a group, the 5-ASA meds are not particularly effective for inducing remission, but many patients find them helpful for maintaining remission, once it is attained. There's always a chance that in combination with the diet, one of them might help to relieve your symptoms, and speed up the remission process, if you can tolerate them, along with your other meds.
Really, the only "practical" meds available to fight inflammation, are the 5-ASA meds, (and their close relatives), and the corticosteroids. Virtually all the other meds used to treat IBDs are powerful immune system suppressants, or meds that have constipation as a side effect, such as some of the drugs used for lowering cholesterol levels, certain antidepressants, etc. These meds, of course, don't actually attack the problem, (the inflammation), they just mask the symptoms.
Anyway, the point is, the 5-ASA meds are generally low risk drugs, (from a side effect standpoint), for short-term use, at least, in case you should want to ask your doctor if he/she feels it would be safe for you to try one, since the Entocort didn't work out, due to adverse symptoms. Since you have a bona fide MC diagnosis, your PCP should be willing and able to prescribe one, (I'm guessing that you may not want to go back to your GI doc, in view of his lack of support). Asacol contains lactose, while none of the others do. In fact, none of the others appear to contain any known intolerance, except that Pentasa contains castor oil, which could be a problem for some of us, since the caster bean plant contains one of the most potent lectins known, (it's the source of ricin, which is poisonous, and is used to make the deadly ricin gas).
I just thought I would mention this as an option, in case you want to try another med, in place of Entocort.
Love,
Tex
That was before the Entocort wore off. Right?Rose wrote:I thought that I was doing really well, have solid bm and down to 4 or 5 a day.
Microscopic colitis is a cruel disease. One of the problems is that even if we are close to remission, sometimes we will suffer setbacks, for no apparent reason, and the disease won't even give us a clue as to whether we did something wrong, or it is just being belligerent.
If you told us, I apologize, but I've forgotten whether or not you have tried any of the 5-ASA medications, in the past, (such as Asacol, Colasal, Pentasa, or Lialda). (The doctors have a big advantage on us here, since they always have a patient's complete file in front of them, when they are discussing a case). As a group, the 5-ASA meds are not particularly effective for inducing remission, but many patients find them helpful for maintaining remission, once it is attained. There's always a chance that in combination with the diet, one of them might help to relieve your symptoms, and speed up the remission process, if you can tolerate them, along with your other meds.
Really, the only "practical" meds available to fight inflammation, are the 5-ASA meds, (and their close relatives), and the corticosteroids. Virtually all the other meds used to treat IBDs are powerful immune system suppressants, or meds that have constipation as a side effect, such as some of the drugs used for lowering cholesterol levels, certain antidepressants, etc. These meds, of course, don't actually attack the problem, (the inflammation), they just mask the symptoms.
Anyway, the point is, the 5-ASA meds are generally low risk drugs, (from a side effect standpoint), for short-term use, at least, in case you should want to ask your doctor if he/she feels it would be safe for you to try one, since the Entocort didn't work out, due to adverse symptoms. Since you have a bona fide MC diagnosis, your PCP should be willing and able to prescribe one, (I'm guessing that you may not want to go back to your GI doc, in view of his lack of support). Asacol contains lactose, while none of the others do. In fact, none of the others appear to contain any known intolerance, except that Pentasa contains castor oil, which could be a problem for some of us, since the caster bean plant contains one of the most potent lectins known, (it's the source of ricin, which is poisonous, and is used to make the deadly ricin gas).
I just thought I would mention this as an option, in case you want to try another med, in place of Entocort.
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.
Thank you Tex and Angel,
Tex I was on Asacol right after I was diagnosed and I think b/c of the lactose in it, it did not work. I have not tried any other anti-inflammatory meds. As you stated, I do not want to go back to my GI and your suggestion of contacting my PCP is a great one and I will do that today. Yesterday was crazy, 16 times. It seems that everyday the count goes up a little.
I did start on the Procardia on Tuesday for my Raynauds (which has nothing to do with Monday or Monday nights blow-out). I had to start it b/c my middle finger were starting to turn dark red/black at the tip. As far as I can tell there is nothing in there that might cause a reaction.
Anyway, I will call my PCP and Thank you all again for the support. It is so wonderful to have all of you to vent to. I never feel alone anymore.
Love,
Rose
Tex I was on Asacol right after I was diagnosed and I think b/c of the lactose in it, it did not work. I have not tried any other anti-inflammatory meds. As you stated, I do not want to go back to my GI and your suggestion of contacting my PCP is a great one and I will do that today. Yesterday was crazy, 16 times. It seems that everyday the count goes up a little.
I did start on the Procardia on Tuesday for my Raynauds (which has nothing to do with Monday or Monday nights blow-out). I had to start it b/c my middle finger were starting to turn dark red/black at the tip. As far as I can tell there is nothing in there that might cause a reaction.
Anyway, I will call my PCP and Thank you all again for the support. It is so wonderful to have all of you to vent to. I never feel alone anymore.
Love,
Rose
That is one of the reasons for this board family, Rose. So people don't have to feel like they are living a horror story all by themselves. If that's working for you then HooRay!! And I'm sure there will be other positives also. Sometimes it takes quite a while to get your particular solution worked out.
Love, Shirley
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
More frustration and need to vent.
Last night was just the worst. I was up all night in my "office" from about 11:00 pm to 1:00 am I went 11 times. I am exhausted. I got on the treadmill to do my daily 6 mile run and started gurgling so I went to the bathroom and I had already went and did not even feel it come out. Talk about lack of control. I did not eat anything different and am having just water and food coming out.
Well thank you all for listening. It is so hard for my dh to listen to me vent b/c he just wants to "fix it" as most men do and he knows he can't fix this problem.
Anyway, thanks again.
Love,
Rose
Last night was just the worst. I was up all night in my "office" from about 11:00 pm to 1:00 am I went 11 times. I am exhausted. I got on the treadmill to do my daily 6 mile run and started gurgling so I went to the bathroom and I had already went and did not even feel it come out. Talk about lack of control. I did not eat anything different and am having just water and food coming out.
Well thank you all for listening. It is so hard for my dh to listen to me vent b/c he just wants to "fix it" as most men do and he knows he can't fix this problem.
Anyway, thanks again.
Love,
Rose
Rose,
Wow! You are definitely having a full throttle flare. We are overlooking something, and I have no idea what it is.
I can certainly understand how your hubby feels, because I'm frustrated as hell over your situation, and I'm a thousand miles away. We may have to start over, analyzing your diet.
Love,
Tex
Wow! You are definitely having a full throttle flare. We are overlooking something, and I have no idea what it is.
I can certainly understand how your hubby feels, because I'm frustrated as hell over your situation, and I'm a thousand miles away. We may have to start over, analyzing your diet.
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.
Tex,
Thats how I live my life, at full throttle. It is draining, but this is how I was last year ago. Then I found this group. It is amazing how easy we forget what we were like b/f. I was doing really good and then back to the old drawing board. So far today I have gone 11 times so hopefully I will slow down (there can't be much left in there to get out).
As far as my diet goes, I just don't know what else to eliminate - air maybe. LOL. I don't eat eggs, corn or rice. I stopped eating peas last week. What really amazes me how much poop comes out when you don't put in that much.
I think that I need to put toothpicks between my eyelids to keep them open. The worse thing is (if there is such a thing besides sleeping in the bathroom) its spring break for my kids. I feel so bad b/c they want to do things and I can't take them. Luckily, my dh took the week off as well, but we can't do things as a family since mom is always in her office.
Love,
Rose
Thats how I live my life, at full throttle. It is draining, but this is how I was last year ago. Then I found this group. It is amazing how easy we forget what we were like b/f. I was doing really good and then back to the old drawing board. So far today I have gone 11 times so hopefully I will slow down (there can't be much left in there to get out).
As far as my diet goes, I just don't know what else to eliminate - air maybe. LOL. I don't eat eggs, corn or rice. I stopped eating peas last week. What really amazes me how much poop comes out when you don't put in that much.
I think that I need to put toothpicks between my eyelids to keep them open. The worse thing is (if there is such a thing besides sleeping in the bathroom) its spring break for my kids. I feel so bad b/c they want to do things and I can't take them. Luckily, my dh took the week off as well, but we can't do things as a family since mom is always in her office.
Love,
Rose
You are having what's known as secretory D, which is, (I think), the exclusive domain of the IBDs, in which the colon actually secretes water into the lumen, rather than taking it out. IOW, the colon is operating in reverse mode.Rose wrote:What really amazes me how much poop comes out when you don't put in that much.
Lack of sleep can have a huge negative effect on healing, also, which makes the disease sort of self-perpetuating. MC is a very cruel disease, in that it can negatively affect our lives in so many ways, and one thing leads to another.
There's always a chance that you are not intolerant to some of the foods that you have eliminated from your diet. The body can send confusing signals at times, during reactions, which are very difficult to interpret, because there are so many conflicting and confounding signals, because of the variations in transit time, and other considerations. Also, sometimes we seem to be intolerant to certain foods, and yet, at other times, we seem to tolerate them just fine. Sometimes, the quantity matters, and even the temperature. For example, while I was trying to fine-tune my diet, it finally dawned on me that very cold items, (such as slushies, slurpees, icees, etc.), would cause me to react, (IOW, a thermal trigger). I have no idea why, except that possibly the thermal shock to the stomach, somehow triggered an adverse event.
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.
Tex,
Wow, I have never heard of secretory d. I will have to look into that. I definitely do not get enough sleep. I am always in the bathroom every night. I usually eat dinner around 5:00 with the kids (they are early birds as well and eat earlier than my dh), so my reaction times vary in the evening. Sometimes its about 45 min after I eat my stomach starts the gurgling or the "big flush" as my dh likes to call it and the d starts. Usually it really kicks in when I lay down to go to sleep (about 8:00 most nights b/c I am so exhausted from lack of sleep). Last night there were no episodes of d until about 8:00, but it was just once until around 11:00.
That is something about your thermal trigger. Mine is just everything. My dh says that I breath air and I have gas or d. I don't drink really cold things unless it's water, which I drink a lot of. As far as
I am having a lot of acid reflux lately, like throwing up a little in my mouth at least 4 or 5 times a week and I have never had that happen before.
I really appreciate your help and concerns. Thanks.
Love,
Rose
Wow, I have never heard of secretory d. I will have to look into that. I definitely do not get enough sleep. I am always in the bathroom every night. I usually eat dinner around 5:00 with the kids (they are early birds as well and eat earlier than my dh), so my reaction times vary in the evening. Sometimes its about 45 min after I eat my stomach starts the gurgling or the "big flush" as my dh likes to call it and the d starts. Usually it really kicks in when I lay down to go to sleep (about 8:00 most nights b/c I am so exhausted from lack of sleep). Last night there were no episodes of d until about 8:00, but it was just once until around 11:00.
That is something about your thermal trigger. Mine is just everything. My dh says that I breath air and I have gas or d. I don't drink really cold things unless it's water, which I drink a lot of. As far as
I am having a lot of acid reflux lately, like throwing up a little in my mouth at least 4 or 5 times a week and I have never had that happen before.
I really appreciate your help and concerns. Thanks.
Love,
Rose
Hi Rose!
I'm so sorry that you are having such a flare!
Update me a little bit on what meds you are taking, if any.
Can you take Lomotil?
My DH was just like yours and felt helpless because he couldn't fix my health problem.
Love
Dee~~
I'm so sorry that you are having such a flare!
Update me a little bit on what meds you are taking, if any.
Can you take Lomotil?
My DH was just like yours and felt helpless because he couldn't fix my health problem.
Love
Dee~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
Rose,
The increased acid reflux activity is certainly a clue. H. pylori is known to cause burping in a lot of patients. Since the bacteria can also cause gas, I wonder if it might be a cause of your acid reflux.
That shouldn't cause the type of D that you are experiencing, though. With that kind of frequency, I'm beginning to think that there's a very good possibility that you may have a C. diff infection. It's especially somewhat rare for MC to cause that many "sessions" during the night. I would suggest that you ask your doctor to test you for C. diff. If the first test result is negarive, please ask to be retested, if they don't automatically ask to do that, because C. diff cultures are notorious for showing false negative results.
If you do get a positive test, ask for Vancomycin. Most doctors want to start with Flagyl, first, and all it does is to prolong the suffering. Most C. diff strains are antibiotic-resistant these days, and Flagyl will just make them mad.
Love,
Tex
The increased acid reflux activity is certainly a clue. H. pylori is known to cause burping in a lot of patients. Since the bacteria can also cause gas, I wonder if it might be a cause of your acid reflux.
That shouldn't cause the type of D that you are experiencing, though. With that kind of frequency, I'm beginning to think that there's a very good possibility that you may have a C. diff infection. It's especially somewhat rare for MC to cause that many "sessions" during the night. I would suggest that you ask your doctor to test you for C. diff. If the first test result is negarive, please ask to be retested, if they don't automatically ask to do that, because C. diff cultures are notorious for showing false negative results.
If you do get a positive test, ask for Vancomycin. Most doctors want to start with Flagyl, first, and all it does is to prolong the suffering. Most C. diff strains are antibiotic-resistant these days, and Flagyl will just make them mad.
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.
Yes, usually. I forgot to ask. Good point.Dee wrote:Wayne, would she have the symptom of pain with C-Diff???
I've got to get back to work, so I'll be AWOL for a while, possibly until tonight.
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 Tex and Dee,
Dee to answer your question, I am not on any meds except Effexor for anxiety/depression (go figure). I took Welchol, Asacol, Lomitol, Entocort and the only thing that worked was the Entocort, but the s/e were just too much to bare. It made me dizzy, foggy vision, nauseated 24/7, etc, so I had to go off it.
As far as pain goes, the only pain I have is sometimes cramping with the d and occasionally the pain in my right side below my breast bone and of course the pain in my butt from the cc. But Tex, I will ask my GP on next Thursday for the test.
Tex, I saw on a health web site the secretory d is common with cc.
Thanks again for all of the information.
Love,
Rose
Dee to answer your question, I am not on any meds except Effexor for anxiety/depression (go figure). I took Welchol, Asacol, Lomitol, Entocort and the only thing that worked was the Entocort, but the s/e were just too much to bare. It made me dizzy, foggy vision, nauseated 24/7, etc, so I had to go off it.
As far as pain goes, the only pain I have is sometimes cramping with the d and occasionally the pain in my right side below my breast bone and of course the pain in my butt from the cc. But Tex, I will ask my GP on next Thursday for the test.
Tex, I saw on a health web site the secretory d is common with cc.
Thanks again for all of the information.
Love,
Rose