I don't know why but i feel sickest with my MC during the night. It is so frustrating....i am up all night long with abdominal pain, cramps & D...During the day it gets better but then starts up again the next night.
Just wondering if anyone else has this happen to them?
Also, does anyone else ever run low grade fevers during their 'episodes'? I almost always do.
Very frustrated as i have been on Entocort 6 weeks now and i feel as bad as i did before starting them. I have literally been sick every day since July 07 until today (other than the first two weeks on Entocort when i did feel good)....i am so sick of this damn disease!!!!
What time of day is your worst?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
What time of day is your worst?
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
I'm sorry things are so rough Erin. I sure hope that things get better for you soon and you find some relief.
I remember discussions of night problems and also slight temps during flairs. Yes, I have had the temps. I had the morning problems though, not night. I know many here did have the evening/night episodes and maybe they can offer some help.
Hang in there
Mars
I remember discussions of night problems and also slight temps during flairs. Yes, I have had the temps. I had the morning problems though, not night. I know many here did have the evening/night episodes and maybe they can offer some help.
Hang in there
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Hi Erin,
I'm sorry that you haven't been able to get relief by now. I'm beginning to wonder if the Entocort is going to do the job for you. I'm not sure what diet restrictions you're currently following. I seem to recall that you may be following an IBS type diet. If that's still the case, it could be part of the problem. Most IBS diet recommendations include high fiber content. Fiber and MC do not play very well together. Most of us find that the less fiber we have in our diets, the better off we are, (D-wise), at least until our gut heals.
If you're not already avoiding all gluten, (even trace amounts), you may have to consider trying that, (along with the Entocort), in order to get control. You would probably need to avoid all dairy products, also, at least until your gut has time to heal, (if you're not doing that already). For those of us with really severe symptoms, sometimes we have to pull out all the stops, in order to get control. Once you get control of your symptoms, then you can decide which direction you want to go with your treatment.
I had all of the problems that you describe. My gut was often so bloated at night that I was actually afraid that something was going to rupture. Besides the gut pain, my joints, and especially my neck, were so sore that I usually couldn't find a comfortable way to lie in bed. Often I was nauseated, and had a severe headache. It felt like the flu on steroids. I had previously always slept on my stomach, but that was no longer an option. Along with occasional fever, I often had hallucinations, and I would sweat like a pig, and then sometimes have chills. I was rarely able to get much sleep at night, when it was this bad, so I would try to doze during the day, whenever I had an opportunity, or when I was too sick to continue to work. I eventually developed a pattern of sleeping about four to five hours per night, (when I was lucky), and I have not been able to break that habit. I have been in remission for four years now, but I still sleep only four to five hours per night. <sigh> I was lucky, though, in that the D would usually give me a break from about 8 or 9 pm until about 5 or 6 the next morning, though occasionally it would hit at any hour.
It's a cruel disease, and when you finally break free from it's grip, and the last of the brain fog disappears, you'll feel like climbing the nearest hill, and shouting to the world, how happy you are to have your life back.
Tex
I'm sorry that you haven't been able to get relief by now. I'm beginning to wonder if the Entocort is going to do the job for you. I'm not sure what diet restrictions you're currently following. I seem to recall that you may be following an IBS type diet. If that's still the case, it could be part of the problem. Most IBS diet recommendations include high fiber content. Fiber and MC do not play very well together. Most of us find that the less fiber we have in our diets, the better off we are, (D-wise), at least until our gut heals.
If you're not already avoiding all gluten, (even trace amounts), you may have to consider trying that, (along with the Entocort), in order to get control. You would probably need to avoid all dairy products, also, at least until your gut has time to heal, (if you're not doing that already). For those of us with really severe symptoms, sometimes we have to pull out all the stops, in order to get control. Once you get control of your symptoms, then you can decide which direction you want to go with your treatment.
I had all of the problems that you describe. My gut was often so bloated at night that I was actually afraid that something was going to rupture. Besides the gut pain, my joints, and especially my neck, were so sore that I usually couldn't find a comfortable way to lie in bed. Often I was nauseated, and had a severe headache. It felt like the flu on steroids. I had previously always slept on my stomach, but that was no longer an option. Along with occasional fever, I often had hallucinations, and I would sweat like a pig, and then sometimes have chills. I was rarely able to get much sleep at night, when it was this bad, so I would try to doze during the day, whenever I had an opportunity, or when I was too sick to continue to work. I eventually developed a pattern of sleeping about four to five hours per night, (when I was lucky), and I have not been able to break that habit. I have been in remission for four years now, but I still sleep only four to five hours per night. <sigh> I was lucky, though, in that the D would usually give me a break from about 8 or 9 pm until about 5 or 6 the next morning, though occasionally it would hit at any hour.
It's a cruel disease, and when you finally break free from it's grip, and the last of the brain fog disappears, you'll feel like climbing the nearest hill, and shouting to the world, how happy you are to have your life back.
Tex
Thank you for the encouraging words, i am so discouraged right now. 
I am currently taking 3 MG Entocort daily and i am on a Gluten & Dairy Free diet. I was doing the IBS diet when i was first on here but stopped as soon as i heard from Tex and how it isn't good for MC.
Tex, i can't believe how much my symptoms are like yours were. I have the same feelings. My whole body HURTS at night. I can't get comfortable, especially my legs and shoulders, my stomach hurts, i have cramps, D, sometimes nausea, low grade fever, it is just miserable. During the day i am 'ok' but not great. I miss a lot of days going into work but luckily my boss is very understanding and lets me work from home on those days i just can't make it in.
I have a feeling the GI is going to put me on Prednisone as he thought the Entocort may not be strong enough for me but i am nervous about that, especially with all the side effects
I am so glad to hear others with the same issues so i don't think i am going insane. Thank you for your input!!!
I am currently taking 3 MG Entocort daily and i am on a Gluten & Dairy Free diet. I was doing the IBS diet when i was first on here but stopped as soon as i heard from Tex and how it isn't good for MC.
Tex, i can't believe how much my symptoms are like yours were. I have the same feelings. My whole body HURTS at night. I can't get comfortable, especially my legs and shoulders, my stomach hurts, i have cramps, D, sometimes nausea, low grade fever, it is just miserable. During the day i am 'ok' but not great. I miss a lot of days going into work but luckily my boss is very understanding and lets me work from home on those days i just can't make it in.
I have a feeling the GI is going to put me on Prednisone as he thought the Entocort may not be strong enough for me but i am nervous about that, especially with all the side effects
I am so glad to hear others with the same issues so i don't think i am going insane. Thank you for your input!!!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
My symptoms were worse at night before I was diagnosed. Mostly nausea & D at that time. Body aches came later.
I was originally treated with Prednisone and Asacol. The prednisone did stop the MC symptoms. My problem with it was that it did increase my appetite (that was it was "invented" for according to my SIL who has very bad RA and a lot of experience with pred) and I gained about 40 lbs in 3 months. Still haven't lost it. I did have a little trouble coming off pred but finally the Doc had me transition over to Entocort & Asacol and I did that with no problem. I was on pred about 3 months and then Entocort for another 3 months. Since then have maintained on Asacol.
Anyway, I guess I'm saying that you may need to go the pred for a short while (hopefully not 3 months) then transition back to Entocort. I took both for a short while during the transition. Cutting down on pred while increasing Entocort.
Don't know if this helps you at all, but I thought I'd say that although I really hope I never have to go on pred again.........I guess I would if I really needed it.
Shirley
P.S. Isn't 3 mg Entocort a very low dose? Perhaps you could try increasing that.
I was originally treated with Prednisone and Asacol. The prednisone did stop the MC symptoms. My problem with it was that it did increase my appetite (that was it was "invented" for according to my SIL who has very bad RA and a lot of experience with pred) and I gained about 40 lbs in 3 months. Still haven't lost it. I did have a little trouble coming off pred but finally the Doc had me transition over to Entocort & Asacol and I did that with no problem. I was on pred about 3 months and then Entocort for another 3 months. Since then have maintained on Asacol.
Anyway, I guess I'm saying that you may need to go the pred for a short while (hopefully not 3 months) then transition back to Entocort. I took both for a short while during the transition. Cutting down on pred while increasing Entocort.
Don't know if this helps you at all, but I thought I'd say that although I really hope I never have to go on pred again.........I guess I would if I really needed it.
ShirleyP.S. Isn't 3 mg Entocort a very low dose? Perhaps you could try increasing that.
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
I noticed that 3 mg dosage also. The normal dosage rate for Entocort EC is 9 mg daily. Each capsule should have the name and 3 mg imprinted right on the capsule. I'm guessing that you meant 3 capsules, but if you really are taking only one per day, then that's your problem. Actually, according to trials done before it was released on the market, a patient can safely take up to 18 mg per day, without any significant additional risk of side effects, and that dosage rate will increase the success rate from about 60% or so, up to about 75 to 80%. I would assume that most doctors are unaware of that though, since it's probably not mentioned on the label.
Otherwise, it appears that you've already pulled out all the stops, so obviously it's time for some improvement. Diverticulitis can also cause the same symptoms, (speaking from experience), but you're pretty young for that to be a problem, and if it were present, surely your doc would have mentioned it after the colonoscopy.
If the pred treatment doesn't last for more than about six weeks, (two weeks would be better), it probably won't cause any serious problems. Long-term treatment is fraught with peril, though, because of it's effects on the adrenals.
Tex
Otherwise, it appears that you've already pulled out all the stops, so obviously it's time for some improvement. Diverticulitis can also cause the same symptoms, (speaking from experience), but you're pretty young for that to be a problem, and if it were present, surely your doc would have mentioned it after the colonoscopy.
If the pred treatment doesn't last for more than about six weeks, (two weeks would be better), it probably won't cause any serious problems. Long-term treatment is fraught with peril, though, because of it's effects on the adrenals.
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.
Erin,
Please let your doctor know you are running fever. That is not normally associated with MC, at least from what I have read. Anything is possible, though. If you need Prednisone please don't be afraid of it. I have been on it for over 3 weeks now and still have not gained a pound, and no moon face. I have a little trouble sleeping sometimes. I take Ambien for that when I need to. I am only 102 pounds so I only take a quarter of a pill. It helps. I feel wired most of the time. So I am getting a lot of stuff done and I exercise and that helps with sleep and general feeling of well being. The Pred is beginning to help. I have had MC for over 8 years and so it is ( I guess this is why) slow going. I still take Lomotil but am down to 2 a day from 8. It keeps me from going at night and helps during the day. Sleep is so important to healing. Don't be afraid to take Lomotil or immodium to help while you are healing. Of course talk to your Dr. about it and get their ok. My doc recommended it. BTW, anytime of day is bad when this is bad.
Pat
Please let your doctor know you are running fever. That is not normally associated with MC, at least from what I have read. Anything is possible, though. If you need Prednisone please don't be afraid of it. I have been on it for over 3 weeks now and still have not gained a pound, and no moon face. I have a little trouble sleeping sometimes. I take Ambien for that when I need to. I am only 102 pounds so I only take a quarter of a pill. It helps. I feel wired most of the time. So I am getting a lot of stuff done and I exercise and that helps with sleep and general feeling of well being. The Pred is beginning to help. I have had MC for over 8 years and so it is ( I guess this is why) slow going. I still take Lomotil but am down to 2 a day from 8. It keeps me from going at night and helps during the day. Sleep is so important to healing. Don't be afraid to take Lomotil or immodium to help while you are healing. Of course talk to your Dr. about it and get their ok. My doc recommended it. BTW, anytime of day is bad when this is bad.
Pat
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annie oakley
- King Penguin
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When I was first Diagnosed My worst time was all the time. After I was put on Asacol the worst was early morning. I also had fevers during flares and terrible loss of sleep. Now the only time I have a problem or a flare is if I eat something I know is wrong and once in a great while for no reason, I think to let me know it's still there. I take Rozerem for sleep when I can't get rest, because it's the least adictive and you can use it as you need.
Hang in there girl, it will get better. I thought it never would. But The people here on this site were the biggest help of all. And God Bless Tex for all his research! Love Oma
Hang in there girl, it will get better. I thought it never would. But The people here on this site were the biggest help of all. And God Bless Tex for all his research! Love Oma
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
There is a lot of misinformation about MC on the net, (and in doctors offices, also). (For that matter, there is a heck of a lot of misinformation about a lot of things on the net, and in doctors offices. LOL). Here are some quotes taken from the website of a leading hospital. (I haven't cited the reference, since it is a well known hospital, that generally provides a high level of care, but obviously they need to update their website concerning MC - I can list the reference if you would like to see it).
The point is, there can be a lot of difference in the the ways that some of us react, and our symptoms are often different, and with all the misinformation floating around, it's no wonder that the doctors are having a tough time working out treatment programs that work reliably. That's why being able to compare notes with others who have the disease, and shareing experiences with them, can be so valuable.
Tex
Considering the rate at which new cases are being diagnosed these days, obviously that figure is way, way low. Even just five or six years ago, the prevalence was listed at three to five times that level, and new cases are popping up everywhere - even children are now being diagnosed with MC.The incidence of this disorder is approximately 1.8 cases per 100,000 population.
Some old sites even claim the disease is self-limiting, and remission will automatically occur in approximately 36 months or less, without treatment. If that is true, why does virtually everyone who is a member of this site still have to either follow a strict diet, or continue to take meds, in order to control their symptoms, even though they have had MC for five or ten years, or longer? The 20 year limit that they mention is kind of a cruel joke, since the disease hasn't even been described for much longer than that, and for many of the early years, virtually no one was diagnosed, because doctors had never heard of it, and didn't know how to diagnose it. Besides, if you have had it for 20 years without relief, do you think that you would still be wasting your time going back to your doctor to try to get treatment?Patients describe 5–10 watery bowel movements per day persisting for an average of five years, but as long as 20 years.
I seriously doubt that nocturnal pain with MC is rare, in fact, I would say that it is quite common. Just a few years ago, a lot of doctors claimed that there was no pain associated with MC. I'm sure that a lot of the founding members here remember those days.Diarrhea is usually accompanied by cramps and diffuse abdominal pain, which rarely occurs at night.
The point is, there can be a lot of difference in the the ways that some of us react, and our symptoms are often different, and with all the misinformation floating around, it's no wonder that the doctors are having a tough time working out treatment programs that work reliably. That's why being able to compare notes with others who have the disease, and shareing experiences with them, can be so valuable.
Tex
Thank you for all the good words, especially about the prednisone (as i am so afraid to start if he suggests it)...
Sorry, i did a typo on my Entocort dosage
i meant to say i take (3) 3mg pills each morning so a total of 9mg daily so i am already taking the maximum dose. Do they ever dose higher than the 9mg?
it is just so frustrating. My husband and i did have to cancel our trip to Ireland. There was just no way i am able to travel, never mind out of the country. Hubby has been great about it, but of course i am feeling terrible
Sorry, i did a typo on my Entocort dosage
i meant to say i take (3) 3mg pills each morning so a total of 9mg daily so i am already taking the maximum dose. Do they ever dose higher than the 9mg?it is just so frustrating. My husband and i did have to cancel our trip to Ireland. There was just no way i am able to travel, never mind out of the country. Hubby has been great about it, but of course i am feeling terrible
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Hi Erin,
I seriously doubt that any doctors have prescribed the higher dose for any patients with MC. The trial was for Crohn's patients, and while it's possible that there may have been some treatments at that rate for Crohn's patients, I doubt that many doctors are even aware of the option, and even if they are, they would likely be afraid to risk the liability, if that rate is not on the label. The information might be available to them in the form of published guidelines that the manufacturer sends out to doctors, but I have no way of knowing that, since I'm not a doctor.
I'm sorry to hear that you and your husband had to cancel your trip. Maybe you can do the trip later, after you get the MC under control.
Incidentally, did you notice the post that I slipped in just ahead of your last post. Apparently I was editing it when you wrote your post.
Tex
I seriously doubt that any doctors have prescribed the higher dose for any patients with MC. The trial was for Crohn's patients, and while it's possible that there may have been some treatments at that rate for Crohn's patients, I doubt that many doctors are even aware of the option, and even if they are, they would likely be afraid to risk the liability, if that rate is not on the label. The information might be available to them in the form of published guidelines that the manufacturer sends out to doctors, but I have no way of knowing that, since I'm not a doctor.
I'm sorry to hear that you and your husband had to cancel your trip. Maybe you can do the trip later, after you get the MC under control.
Incidentally, did you notice the post that I slipped in just ahead of your last post. Apparently I was editing it when you wrote your post.
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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greengirl78
- Adélie Penguin
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Erin I am so sorry to hear of your recent flare. It must be so frustrating to have had control for the 3 weeks that you did, and now be back to square 1.
I have found that prior to the colonoscopy I had the hardest times in the mornings, however I did have a mild temp often at night, with cramps/pain, and lots of noise (gurgling sounds). Lately (the past week or so) I have had a hard time sleeping along with the same symptoms (pain, noises, sometimes a mild fever). New to me is the urgency at night, which wakes me up, and wakes me often. I'm a little uncomfortable with this because now I am even more tired all the time.
I am so sorry to hear you had to cancel your trip. Can you reschedule? I hear the best season to visit Ireland is the summertime - less rain. Please don't beat yourself up... and take care.
I hope things get better for you soon.
I have found that prior to the colonoscopy I had the hardest times in the mornings, however I did have a mild temp often at night, with cramps/pain, and lots of noise (gurgling sounds). Lately (the past week or so) I have had a hard time sleeping along with the same symptoms (pain, noises, sometimes a mild fever). New to me is the urgency at night, which wakes me up, and wakes me often. I'm a little uncomfortable with this because now I am even more tired all the time.
I am so sorry to hear you had to cancel your trip. Can you reschedule? I hear the best season to visit Ireland is the summertime - less rain. Please don't beat yourself up... and take care.
I hope things get better for you soon.
If we are peaceful, if we are happy, we can blossom like a flower, and everyone in our family, our entire society, will benefit from our peace. - Thich Nhat Hahn
Erin,
I forgot to tell you that I took Entocort a year ago in Jan and Feb for 6 weeks same dose as you. It helped some but really didn't work. I was not on any specific diet then either. I really think diet is important. You have to find what your intolerances are and go from there. Tex is right, most doctors and internet sites really don't have a clue about this disease. We have to speak up and educate them. Sorry you had to postpone your trip. I'll call it postpone because I hope you will still get to go someday. Hang in there. We're gonna get through this together!!! I hope and pray!!!
Pat
I forgot to tell you that I took Entocort a year ago in Jan and Feb for 6 weeks same dose as you. It helped some but really didn't work. I was not on any specific diet then either. I really think diet is important. You have to find what your intolerances are and go from there. Tex is right, most doctors and internet sites really don't have a clue about this disease. We have to speak up and educate them. Sorry you had to postpone your trip. I'll call it postpone because I hope you will still get to go someday. Hang in there. We're gonna get through this together!!! I hope and pray!!!
Pat
Ah yes, those infamous gurgling sounds that seem to be unique to MC. Thanks for mentioning them, Greengirl78, because I completely forgot about them when I was listing my symptoms.
In fact, I would be willing to bet that just about any member here, would be able to accurately diagnose MC in a stranger, just by noticing those loud gurgling sounds. Forget the colonoscopy, all you need for an accurate diagnosis is reasonably good hearing. Heck, most of us could diagnose someone on the other side of the room. I can remember turning many a head in a crowd, on some days when my guts were really "speaking up". LOL.
Tex
In fact, I would be willing to bet that just about any member here, would be able to accurately diagnose MC in a stranger, just by noticing those loud gurgling sounds. Forget the colonoscopy, all you need for an accurate diagnosis is reasonably good hearing. Heck, most of us could diagnose someone on the other side of the room. I can remember turning many a head in a crowd, on some days when my guts were really "speaking up". LOL.
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.