I've been on medical leave for a year and I miss being an elementary teacher and being able to live a normal life. I have had the big D ruining my life for over 30 years. Am 54 now. My doc informs me that Remicade won't do the trick.
What's a girl to do???
Cheryl
Remicade to treat collagenous colitis
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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ccruicks@shaw.ca
- Posts: 11
- Joined: Thu Feb 07, 2008 3:07 am
- Location: Edmonton, Canada
Interesting you posted this, i was just wondering if Humira or Remicade would also work for MC. It seems to do wonders for Crohns and UC. I have only found one other person on the board that used Humira (for something else) but it did clear up her MC...anyone else have any thoughts on these treatments?
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Hi Cheryl,
and welcome to the board. I'm very sorry to hear that you've been living with this for so many years without being able to find a treatment program that will bring relief. The sad fact is that most doctors just don't know how to treat CC.
Humira and Remicade are used by some doctors to treat Inflammatory Bowel Diseases, (IBDs), but those drugs are from a class of very powerful immune suppressing drugs that often have many life-altering side effects for many patients. They were developed for arthritis, and I have a local friend who has used them for that purpose. They worked great for a while, but they soon stopped working for her, and she is now in a wheelchair. Personally, I wouldn't touch drugs in that class with a ten foot pole, unless I was sure that I wouldn't live but a few more years, anyway, but that's just my personal opinion. Many people think they're the greatest thing since sliced bread.
If you really, really want to put the CC into remission, I would suggest that you ask your doctor for a two-week treatment with Prednisone, followed by a six-month prescription for Entocort. Also, I would suggest that when you begin the treatment, you eliminate all gluten and dairy products from your diet, (even trace amounts), or else get a test kit from Enterolab, (in Dallas, Texas), to verify whether or not you are gluten sensitive and/or casein sensitive. The celiac blood tests are not reliable for people with microscopic colitis, (MC). Many of us are very gluten sensitive, but the classic celiac blood tests will not detect it, nor will an upper endoscopy exam that checks for villous atrophy.
Many of us here have had no luck with trying to find someone in the medical profession who is able to come up with a treatment program that actually works to control our symptoms. We share experiences here, and each of us finds the best way to control our symptoms. There is more than one way to skin this cat, but the program that I suggested above seems to work best for the most severe cases. Many find relief with Entocort alone, and many have achieved remission by diet alone, but there is a treatment program that will bring relief for you too - you just have to find it, and experiment with it until you get it fine tuned. You can get your life back, and I wish you the best of luck on your way back to health.
Please feel free to ask any questions, and we will do our best to answer. We've all been there, and done that.
Again, welcome to the group.
Tex
and welcome to the board. I'm very sorry to hear that you've been living with this for so many years without being able to find a treatment program that will bring relief. The sad fact is that most doctors just don't know how to treat CC.
Humira and Remicade are used by some doctors to treat Inflammatory Bowel Diseases, (IBDs), but those drugs are from a class of very powerful immune suppressing drugs that often have many life-altering side effects for many patients. They were developed for arthritis, and I have a local friend who has used them for that purpose. They worked great for a while, but they soon stopped working for her, and she is now in a wheelchair. Personally, I wouldn't touch drugs in that class with a ten foot pole, unless I was sure that I wouldn't live but a few more years, anyway, but that's just my personal opinion. Many people think they're the greatest thing since sliced bread.
If you really, really want to put the CC into remission, I would suggest that you ask your doctor for a two-week treatment with Prednisone, followed by a six-month prescription for Entocort. Also, I would suggest that when you begin the treatment, you eliminate all gluten and dairy products from your diet, (even trace amounts), or else get a test kit from Enterolab, (in Dallas, Texas), to verify whether or not you are gluten sensitive and/or casein sensitive. The celiac blood tests are not reliable for people with microscopic colitis, (MC). Many of us are very gluten sensitive, but the classic celiac blood tests will not detect it, nor will an upper endoscopy exam that checks for villous atrophy.
Many of us here have had no luck with trying to find someone in the medical profession who is able to come up with a treatment program that actually works to control our symptoms. We share experiences here, and each of us finds the best way to control our symptoms. There is more than one way to skin this cat, but the program that I suggested above seems to work best for the most severe cases. Many find relief with Entocort alone, and many have achieved remission by diet alone, but there is a treatment program that will bring relief for you too - you just have to find it, and experiment with it until you get it fine tuned. You can get your life back, and I wish you the best of luck on your way back to health.
Please feel free to ask any questions, and we will do our best to answer. We've all been there, and done that.
Again, welcome to the group.
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.
Cheryl,
I've had this for over 8 years and am just now on Prednisone for it. Tried other drugs to no avail. Sorry, Tex, but 2 weeks won't do it for me. I have been on it (40 mg) for 2 weeks tomorrow and I am not nearly out of the woods. It is helping but not normal by any means. The doc's plan is 3 months. Then put me on something else. Immuran, Entocort. Don't know yet. Cheryl, if your doctor won't help you go to someone else. Don't be afraid to go anywhere. Even fly somewhere if possible, but get help! Have you had Enterolab testing? Please get help.
Pat
I've had this for over 8 years and am just now on Prednisone for it. Tried other drugs to no avail. Sorry, Tex, but 2 weeks won't do it for me. I have been on it (40 mg) for 2 weeks tomorrow and I am not nearly out of the woods. It is helping but not normal by any means. The doc's plan is 3 months. Then put me on something else. Immuran, Entocort. Don't know yet. Cheryl, if your doctor won't help you go to someone else. Don't be afraid to go anywhere. Even fly somewhere if possible, but get help! Have you had Enterolab testing? Please get help.
Pat
Hi Cheryl
Sorry to hear you have been suffering for so long with CC.
After a number of years suffering I am now on a treatment programme that started with Prednisone 40mg and a gradual reduction each week over 6 weeks. I have to say although it took away the dreaded D the side effects were really horrid and within 5 days off this medication the D started to return.
Now I am on Entocort 9mgs for 3 months until I go back for my review with the gastro. I think the time and medication varies from person to person so many factors to take into consideration with this illness. Do you have any other problems resulting from the CC apart from D?
Anyway welcome to the group I am new also and this forum is very good so much information and links.
Sorry to hear you have been suffering for so long with CC.
After a number of years suffering I am now on a treatment programme that started with Prednisone 40mg and a gradual reduction each week over 6 weeks. I have to say although it took away the dreaded D the side effects were really horrid and within 5 days off this medication the D started to return.
Now I am on Entocort 9mgs for 3 months until I go back for my review with the gastro. I think the time and medication varies from person to person so many factors to take into consideration with this illness. Do you have any other problems resulting from the CC apart from D?
Anyway welcome to the group I am new also and this forum is very good so much information and links.
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ccruicks@shaw.ca
- Posts: 11
- Joined: Thu Feb 07, 2008 3:07 am
- Location: Edmonton, Canada
Hi Pat,
Thanks for welcoming on board.
Other problems/complaints include abdominal cramping and an aching pain on the right side that wears me down. It feels like menstrual cramps. I'm up thru the night. It seems like as soon as I get ready to settle down for the night, then my guts start to act up, making loud churning noises like there is some kind of monster inside of me. I get hot, I get cold, I get up and down a zillion times to the toilet. Sometimes I have what I refer to as a hot nail pain on the right side of my abdomen.
Bone scans showed osteoporosis and osteoarthritis in my hands, feet, and lower back. I frequently get charley horses-muscle cramping in my gut and in my feet.
I get super thirsty at night, drink water and then end up with more bouts. I take ratio codeine tablets, loperamide-Immodium and Questran and still the waters flow.
I take Prozac to help deal with anxiety and depression.
Does this sound familiar? I am 54 and had a hysterectomy in my 40's, so my hormones are at play too.
Have you got any coping strategies?
Thanks for welcoming on board.
Other problems/complaints include abdominal cramping and an aching pain on the right side that wears me down. It feels like menstrual cramps. I'm up thru the night. It seems like as soon as I get ready to settle down for the night, then my guts start to act up, making loud churning noises like there is some kind of monster inside of me. I get hot, I get cold, I get up and down a zillion times to the toilet. Sometimes I have what I refer to as a hot nail pain on the right side of my abdomen.
Bone scans showed osteoporosis and osteoarthritis in my hands, feet, and lower back. I frequently get charley horses-muscle cramping in my gut and in my feet.
I get super thirsty at night, drink water and then end up with more bouts. I take ratio codeine tablets, loperamide-Immodium and Questran and still the waters flow.
I take Prozac to help deal with anxiety and depression.
Does this sound familiar? I am 54 and had a hysterectomy in my 40's, so my hormones are at play too.
Have you got any coping strategies?
Hi Pat
Oh now the side effects I would first of all say that week one I felt reasonable fine, full of energy! Now by week two it had seriously started to effect my sleep or should I say the lack of sleep I would go maybe 48 hours and then only sleep for about 4 or 5 hours.
The mood swings were horrid, and I would fly off for no real reason, extremely emotional bursting into tears so easy. My weight gain was really quite small about 5lbs in 6 weeks but, I did resist most of the cravings for food.
Moon face was also quite bad even after 3 weeks of finishing the course I still have some of the swelling. Also my vision was blurry.
By the time I finished the course I really felt in a state of depression!
From what I have been told this is all quite normal for Prednisone I have to say I would only take this drug again in a life or death situation.
I have been on Entocort now for just over two weeks so far very little side effects I am actually starting to sleep again. However, maybe it was needed although it was horrid to take I would have taken anything to stop the D by that point.
Oh now the side effects I would first of all say that week one I felt reasonable fine, full of energy! Now by week two it had seriously started to effect my sleep or should I say the lack of sleep I would go maybe 48 hours and then only sleep for about 4 or 5 hours.
The mood swings were horrid, and I would fly off for no real reason, extremely emotional bursting into tears so easy. My weight gain was really quite small about 5lbs in 6 weeks but, I did resist most of the cravings for food.
Moon face was also quite bad even after 3 weeks of finishing the course I still have some of the swelling. Also my vision was blurry.
By the time I finished the course I really felt in a state of depression!
From what I have been told this is all quite normal for Prednisone I have to say I would only take this drug again in a life or death situation.
I have been on Entocort now for just over two weeks so far very little side effects I am actually starting to sleep again. However, maybe it was needed although it was horrid to take I would have taken anything to stop the D by that point.
Hi Cheryl
you say
"Other problems/complaints include abdominal cramping and an aching pain on the right side that wears me down. It feels like menstrual cramps. I'm up thru the night. It seems like as soon as I get ready to settle down for the night, then my guts start to act up, making loud churning noises like there is some kind of monster inside of me. I get hot, I get cold, I get up and down a zillion times to the toilet. Sometimes I have what I refer to as a hot nail pain on the right side of my abdomen"".
This is exactly the same symptoms as I had and I feel for you. I was on Prozac also but did notice that the D was worst when I did take it and really feel this is not the best anti depressant to take with CC.
Not sure on coping strategies, until I got treatment I just tried to carry on life as normal as possible. Like you I also used loperamide-Immodium to control the D however, it reached the point in August 2007 that this no longer worked the D was like a waterfall.
I think you need to go back and see a gastro again to get another treatment programme going.
you say
"Other problems/complaints include abdominal cramping and an aching pain on the right side that wears me down. It feels like menstrual cramps. I'm up thru the night. It seems like as soon as I get ready to settle down for the night, then my guts start to act up, making loud churning noises like there is some kind of monster inside of me. I get hot, I get cold, I get up and down a zillion times to the toilet. Sometimes I have what I refer to as a hot nail pain on the right side of my abdomen"".
This is exactly the same symptoms as I had and I feel for you. I was on Prozac also but did notice that the D was worst when I did take it and really feel this is not the best anti depressant to take with CC.
Not sure on coping strategies, until I got treatment I just tried to carry on life as normal as possible. Like you I also used loperamide-Immodium to control the D however, it reached the point in August 2007 that this no longer worked the D was like a waterfall.
I think you need to go back and see a gastro again to get another treatment programme going.
Cheryl,
Please go back to the doctor, maybe a new doctor. I had the churning too. I was given a hydrogen breath test and found to be fructose intolerant. I eat no fructose now. That means no fruit or sugar. (There is a hydrogen breath test for bacterial overgrowth and lactose intolerance) Within a week all the churning was gone, including gas and some muscle aches. It has been hard not eating fruit but I enjoy no churning, gas, or aches. I still had the D though and immodium quit working so I used Lomotil, a prescription drug. It worked pretty good. I had to take 8 a day. Now on Prednisone I am down to 4 and hoping to continue to reduce the amount. I had the charley horses too and they are better now. Questran didn't help me either. Hey, I am 54 too but still have my uterus and am menopausal. I do have warm flashes. Yoga helps, I take Ambien to help sleep but I don't think it lasts all night. You are not alone, Cheryl. But I must stress to you to get help.
Pat
Please go back to the doctor, maybe a new doctor. I had the churning too. I was given a hydrogen breath test and found to be fructose intolerant. I eat no fructose now. That means no fruit or sugar. (There is a hydrogen breath test for bacterial overgrowth and lactose intolerance) Within a week all the churning was gone, including gas and some muscle aches. It has been hard not eating fruit but I enjoy no churning, gas, or aches. I still had the D though and immodium quit working so I used Lomotil, a prescription drug. It worked pretty good. I had to take 8 a day. Now on Prednisone I am down to 4 and hoping to continue to reduce the amount. I had the charley horses too and they are better now. Questran didn't help me either. Hey, I am 54 too but still have my uterus and am menopausal. I do have warm flashes. Yoga helps, I take Ambien to help sleep but I don't think it lasts all night. You are not alone, Cheryl. But I must stress to you to get help.
Pat
Mini,
I seem to be having the mood swings now too. I think it is tied to the lack of sleep. The Ambien doesn't last the whole night. I am going to ask my doctor for something else. Not looking forward to the moon face, but a little weight would be nice. Glad the Entocort works better for you. This disease is the pits! Are you on any special diet?
Pat
I seem to be having the mood swings now too. I think it is tied to the lack of sleep. The Ambien doesn't last the whole night. I am going to ask my doctor for something else. Not looking forward to the moon face, but a little weight would be nice. Glad the Entocort works better for you. This disease is the pits! Are you on any special diet?
Pat
I had been on Prozac for Post Partum Depression after my daughter was born and i also found it made the D much worse.
I had a hysterectomy early in life (34) for Endometriosis, Adhesion problems. I felt great for 2 years, symptom free of everything including the MC and then it hit with a vengence last summer and i have yet to get into any sort of remission.
I am currently taking 9mg of Entocort per day and it has helped, yet not 100%. I am 4 weeks into the treatment at this time. I have a follow up appt with my GI on Monday so i will see what he has to say. Have not had many side effects from the Entocort, a couple of nights where i had really bad leg cramping and i do find that i cry a lot easier but that is it.
Hope you can find some relief soon!
I had a hysterectomy early in life (34) for Endometriosis, Adhesion problems. I felt great for 2 years, symptom free of everything including the MC and then it hit with a vengence last summer and i have yet to get into any sort of remission.
I am currently taking 9mg of Entocort per day and it has helped, yet not 100%. I am 4 weeks into the treatment at this time. I have a follow up appt with my GI on Monday so i will see what he has to say. Have not had many side effects from the Entocort, a couple of nights where i had really bad leg cramping and i do find that i cry a lot easier but that is it.
Hope you can find some relief soon!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Erin,
FYI, the leg and foot cramping, and crying too easily, must be a part of the "side benefits" that we get from MC. I have never taken any cortocisteroids, and yet I had all those symptoms, and they were pretty significant, too.
I've been in remission for several years now, but I still find that just reading a lot of the posts here, will make me all misty-eyed sometimes, or worse. Before the advent of my symptoms, I never cried, and I do mean never, (well, except as an infant, of course). I firmly believe that MC makes permanent changes not only to our bodies, but to our mindset, and our way of thinking, as well.
Tex
FYI, the leg and foot cramping, and crying too easily, must be a part of the "side benefits" that we get from MC. I have never taken any cortocisteroids, and yet I had all those symptoms, and they were pretty significant, too.
I've been in remission for several years now, but I still find that just reading a lot of the posts here, will make me all misty-eyed sometimes, or worse. Before the advent of my symptoms, I never cried, and I do mean never, (well, except as an infant, of course). I firmly believe that MC makes permanent changes not only to our bodies, but to our mindset, and our way of thinking, as well.
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 Cheryl,
I had some of the very same symptoms as you. I'm curious if your GI had you try any antibiotics. Perhaps Rifaximin (sp) or neomycin, though for D Rifaximin would be better. And then take a high does probiotic and perhaps some sort of prokinietic. The reason I ask is that I was recently diagnosed with Small Intestinal Bacterial Overgrowth as determined by a Lactulose breath test, testing for both Hydrogen and Methane. All of which got much better (though not cured yet) by taking an antibiotic, I noticed the most improvement on Neomycin but then I had a bowel that went back and forth between Diarrhea and Constipation. I'm fairly sure that SIBO had something to do with my diagnosis of LC.
Thanks,
Mike
I had some of the very same symptoms as you. I'm curious if your GI had you try any antibiotics. Perhaps Rifaximin (sp) or neomycin, though for D Rifaximin would be better. And then take a high does probiotic and perhaps some sort of prokinietic. The reason I ask is that I was recently diagnosed with Small Intestinal Bacterial Overgrowth as determined by a Lactulose breath test, testing for both Hydrogen and Methane. All of which got much better (though not cured yet) by taking an antibiotic, I noticed the most improvement on Neomycin but then I had a bowel that went back and forth between Diarrhea and Constipation. I'm fairly sure that SIBO had something to do with my diagnosis of LC.
Thanks,
Mike
Hi Pat
Not on any special diet as such but, I am a vegatarian and eat a low fat diet. My GP nor the GI has not ordered any other test as such and told me to continue eating what I normally do unless it presents a problem.
Since taking the pred and entocort the D is not present so I am making the most of this time to eat fruits, vegtables etc. On Monday I have to have a liver and kidney function test lol as by all accounts my GP feels I am not looking well at all? Hum after 3 solid years of D is it any wonder I look ill lol.
I think you might be correct about the moods from the lack of sleep, my partner called it 'The Pred Bull' as I would snap so quickly and really feel quite angry. I did not have anything for the sleep problem as my GI said it was best to avoid all other medications while on the pred due to the possible interactions.
Try not to worry about the moon face not everybody has that problem mine seemed quite bad for the dosage I was on, when I had to leave the house I wanted to place a paper bag over my head. I think it looked worst as due to the lack of sleep I had and still have to a degree large black circles around my eyes.
Anymore question Pat feel free to PM
Not on any special diet as such but, I am a vegatarian and eat a low fat diet. My GP nor the GI has not ordered any other test as such and told me to continue eating what I normally do unless it presents a problem.
Since taking the pred and entocort the D is not present so I am making the most of this time to eat fruits, vegtables etc. On Monday I have to have a liver and kidney function test lol as by all accounts my GP feels I am not looking well at all? Hum after 3 solid years of D is it any wonder I look ill lol.
I think you might be correct about the moods from the lack of sleep, my partner called it 'The Pred Bull' as I would snap so quickly and really feel quite angry. I did not have anything for the sleep problem as my GI said it was best to avoid all other medications while on the pred due to the possible interactions.
Try not to worry about the moon face not everybody has that problem mine seemed quite bad for the dosage I was on, when I had to leave the house I wanted to place a paper bag over my head. I think it looked worst as due to the lack of sleep I had and still have to a degree large black circles around my eyes.
Anymore question Pat feel free to PM