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Newbie looking for support!
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Newbie looking for support!
Hi Everyone. This is my first post. I feel so alone! I'm 38 and I started with the big D in May. Had the colonoscopy on July 3rd and was diagnosed with microscopic colitis. My GI doc says that he only sees about 6 patients a year with this. He gave me Colazal. I've been on this about 7 weeks and I don't notice a difference. He says I should keep taking it and then have bloodwork to check kidney and liver functions. Then, he won't call it a failure until I've been on it 3 months (if I tolerate it well.) I can't take any of the steriodal meds since I already have osteopenia from having a hysterectomy at age 29. I went for a 2nd opinion and didn't not get any more information about MC. This is so very embarassing and I can't take this anymore! Help? Does anyone feel totally exhausted all the time? I have no energy and I can't figure out if its the meds (Lomotil & Colazal) or if it's because of the D that I'm going on my 5th month of. I feel like it's taking all that I have to keep up with daily life and I feel like my family does not understand this. I get to the point where I'm walking around in a fog or I'm snippy, probably due to low blood sugar for not eating for long periods of time so I won't have to go to the bathroom when I'm busy. I have two jobs, two daughters (13 & 18) and a 17 year-old friend of my daughters who just recently moved in. My husband works until 8 pm during the week and on Saturdays, so I do most of the running around with the girls and volunteering for my 13 year-olds school activities. I feel like I'm whining about being tired all the time, so I'm wondering if it is a real symptom of MC????
You are NOT alone any more. We're so happy you found us and I'm sure you will be, too.There is a lot of GREAT information on this site as well as a lot of terrific people who have a great deal of experience with MC.
I found this site after finding Enterolab.com and trying to check out its legitimacy. The first thing I did after reading here is go gluten free. I would suggest that as a first step. Read as much on this site as you can. Use the site search feature (not the Google one.).
Check out EL, too. YES, I did all the testing there after reading all the positive information here.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Babsey,
Welcome to our online family. I'm sorry to hear that your symptoms are so bad, and the Colazal doesn't seem to be helping. I totally agree with you - when the realization of what was happening to me finally sunk in, I felt as though I were totally alone, and absolutely no one understood how I felt. I think that most of us go through that stage. You don't have to feel lonesome any more, though, because you are virtually the mirror image of most of us, as far as your symptoms are concerned, so I can guarantee that we understand how you feel - we've been there, done that.
As Joan has suggested, if you would like to get your life back without taking meds, that can be done by eliminating certain foods from your diet. Many of us here control our symptoms by diet alone, and we remain symptom free, as long as we don't slip up on our diet. Osteopenia, for example, is a common result of gluten sensitivity, (gluten is the primary protein in wheat). Many docs recognize that full-blown celiac disease is associated with osteopenia, but precious few even realize that most people with MC are gluten sensitive, (because we will always test negative to the classic celiac blood tests), let alone at risk of osteopenia. In fact, some of us are more sensitive to gluten than the average celiac.
For most people with gluten sensitivity, when gluten is totally eliminated from the diet, the oseopenia either slowly goes away, or at least does not get any worse, (depending on diet, of course - diet is very important for eliminating the risks associated with osteopenia). Sensitivity to casein, (the protein in dairy products), is almost as common as gluten sensitivity, and about half of those who are gluten sensitive, will also be sensitive to soy. The elimination of those three items from the diet will bring remission for most of us, but a few of us also have to track down and eliminate one or two additional intolerances in order to achieve remission.
The lack of energy, brain fog, etc., is due to the disease, (not the med), though in a few cases certain meds can also cause those symptoms, if a patient happens to be allergic to the med. It does take a while for the 5-ASA meds to work, (Colazal, Asacol, Pentasa, Rowasa, Lialda, etc.), though some individuals get relatively prompt results. We are all different in the way we respond to meds, diet, and virtually everything else. Sometimes, switching to a different brand of mesalamine can have benefits. For example, Lialda works better for some individuals, possibly because they are sensitive to dairy, and Lialda is not lactose-based, like some of the more popular 5-ASA meds. Colazal, though, does not contain lactose, and is typically one of the better forms of melsalamine, as far as benefits to the patient are concerned.
There are other, non-steroid meds which are sometimes used to treat MC, but most of them are "big guns", (immune system suppressants), and they are probably not a good idea for someone as young as you, unless you absolutely can't find any other way to control your symptoms.
At any rate, you can definitely get your life back, if you are willing to do what it takes to control your symptoms, and diet control is by far the safest, (since all meds have undesirable side effects). You just have to fine tune your treatment program, to make it fit your lifestyle, while still controlling your symptoms. Some of us here use a combination of diet and meds, in order to speed up the process of achieving remission, or to maintain control in the most difficult cases.
Welcome aboard, and feel free to ask anything.
Tex (Wayne)
Welcome to our online family. I'm sorry to hear that your symptoms are so bad, and the Colazal doesn't seem to be helping. I totally agree with you - when the realization of what was happening to me finally sunk in, I felt as though I were totally alone, and absolutely no one understood how I felt. I think that most of us go through that stage. You don't have to feel lonesome any more, though, because you are virtually the mirror image of most of us, as far as your symptoms are concerned, so I can guarantee that we understand how you feel - we've been there, done that.
As Joan has suggested, if you would like to get your life back without taking meds, that can be done by eliminating certain foods from your diet. Many of us here control our symptoms by diet alone, and we remain symptom free, as long as we don't slip up on our diet. Osteopenia, for example, is a common result of gluten sensitivity, (gluten is the primary protein in wheat). Many docs recognize that full-blown celiac disease is associated with osteopenia, but precious few even realize that most people with MC are gluten sensitive, (because we will always test negative to the classic celiac blood tests), let alone at risk of osteopenia. In fact, some of us are more sensitive to gluten than the average celiac.
For most people with gluten sensitivity, when gluten is totally eliminated from the diet, the oseopenia either slowly goes away, or at least does not get any worse, (depending on diet, of course - diet is very important for eliminating the risks associated with osteopenia). Sensitivity to casein, (the protein in dairy products), is almost as common as gluten sensitivity, and about half of those who are gluten sensitive, will also be sensitive to soy. The elimination of those three items from the diet will bring remission for most of us, but a few of us also have to track down and eliminate one or two additional intolerances in order to achieve remission.
The lack of energy, brain fog, etc., is due to the disease, (not the med), though in a few cases certain meds can also cause those symptoms, if a patient happens to be allergic to the med. It does take a while for the 5-ASA meds to work, (Colazal, Asacol, Pentasa, Rowasa, Lialda, etc.), though some individuals get relatively prompt results. We are all different in the way we respond to meds, diet, and virtually everything else. Sometimes, switching to a different brand of mesalamine can have benefits. For example, Lialda works better for some individuals, possibly because they are sensitive to dairy, and Lialda is not lactose-based, like some of the more popular 5-ASA meds. Colazal, though, does not contain lactose, and is typically one of the better forms of melsalamine, as far as benefits to the patient are concerned.
There are other, non-steroid meds which are sometimes used to treat MC, but most of them are "big guns", (immune system suppressants), and they are probably not a good idea for someone as young as you, unless you absolutely can't find any other way to control your symptoms.
At any rate, you can definitely get your life back, if you are willing to do what it takes to control your symptoms, and diet control is by far the safest, (since all meds have undesirable side effects). You just have to fine tune your treatment program, to make it fit your lifestyle, while still controlling your symptoms. Some of us here use a combination of diet and meds, in order to speed up the process of achieving remission, or to maintain control in the most difficult cases.
Welcome aboard, and feel free to ask anything.
Tex (Wayne)
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!
Thank you for taking the time to give me all of the information. I have researched some info about the gluten-free. I've started eliminating the processed foods which I figured out made me worse, even before the gluten research. I've kept a food diary and tried to find triggers, etc. It seems like I'm the same everyday. Of course, I'm still in the beginning of this weird disease that I suddenly just got one day. I did test negative on the celiac blood test. I don't feel like my doctors are very knowledgeable or helpful.
Do you know if calcium supplements help or make it worse?
Do acidophillus tablets help?
What is a sample daily menu for gluten, soy, etc-free?
(You'll be sorry you said I could ask anything!!!) LOL
Do you know if calcium supplements help or make it worse?
Do acidophillus tablets help?
What is a sample daily menu for gluten, soy, etc-free?
(You'll be sorry you said I could ask anything!!!) LOL
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jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
Welcome Babsey: 
You're with family now who have been or are still going through much of the same symptoms you are discribing. You are not loosing your mind and feeling tired, exhausted and mental spent discribes all of us during a Big D flare.
We come from all over the world here and even though some of us have MC, LC, CC or any IBD's we are all battling the same battle. You mentioned how you just can NO LONGER live this way. Well Sweety....here you can manage and we'll all do our part to help you through.
I'm a Newbie myself and have CC just like you when the Big D hits my whole intire day is a bust! I just want to curl up into a ball and shut everyone out. I still do this quite often but Tex, Barb, Joan and Angy along with so many others help bring me back so I don't fall into a severe depression.
Now read as much as you can and ask "Tex" our walking, talking encyclopidia of knowledge. Without his constant updates and his passion for all of us on this board we wouldn't gain the knowledge we need to understand what our bodies are doing to us. Infact just today he posted an article for us called;"Inflammatory bowel disease linked to depression" So Sweety, don't give up because there is a lot of knowledge here and a whole lot of love as well.
I'm not as knowledgeable as I would like to be but I've only been here about 2-3 months now. The medication I'm taking for CC is 9mgs of Entocort daily which has helped me tremendously with the Big D. I'm also taking Zoloft and Xanax for my depression and anxiety. I only take the Xanax as needed. I am also taking Levsin 0.125mgs every 8 hours as needed. If I'm having a "flare" day and I have to take the Xanax and Levsin it does make me very tired and I'm not much good for anyone let alone myself.
Tex will be your life line on what medications seem to work with what diagnosis as some medications work for one but not for others. What we do have in common is the embarrassment we feel having to deal with these illnesses daily. Keep in mind that some have even gained remission and for some of us remission is along ways off. I thought going on Entocort was only going to be a 6 to 8 week treatment...........DAH boy was I WRONG!!!!!!!!!! I still haven't been able to go to a lower dosage but at least I'm not running to the toilet 15-20 times each day.
For me, the more upset I get the worse the Big D is for me. So even though it's hard to do, we need to calm down for our own well being.
Good Luck Babsey! Keep comming back!
Love and God Bless:
Jodi
You're with family now who have been or are still going through much of the same symptoms you are discribing. You are not loosing your mind and feeling tired, exhausted and mental spent discribes all of us during a Big D flare.
We come from all over the world here and even though some of us have MC, LC, CC or any IBD's we are all battling the same battle. You mentioned how you just can NO LONGER live this way. Well Sweety....here you can manage and we'll all do our part to help you through.
I'm a Newbie myself and have CC just like you when the Big D hits my whole intire day is a bust! I just want to curl up into a ball and shut everyone out. I still do this quite often but Tex, Barb, Joan and Angy along with so many others help bring me back so I don't fall into a severe depression.
Now read as much as you can and ask "Tex" our walking, talking encyclopidia of knowledge. Without his constant updates and his passion for all of us on this board we wouldn't gain the knowledge we need to understand what our bodies are doing to us. Infact just today he posted an article for us called;"Inflammatory bowel disease linked to depression" So Sweety, don't give up because there is a lot of knowledge here and a whole lot of love as well.
I'm not as knowledgeable as I would like to be but I've only been here about 2-3 months now. The medication I'm taking for CC is 9mgs of Entocort daily which has helped me tremendously with the Big D. I'm also taking Zoloft and Xanax for my depression and anxiety. I only take the Xanax as needed. I am also taking Levsin 0.125mgs every 8 hours as needed. If I'm having a "flare" day and I have to take the Xanax and Levsin it does make me very tired and I'm not much good for anyone let alone myself.
Tex will be your life line on what medications seem to work with what diagnosis as some medications work for one but not for others. What we do have in common is the embarrassment we feel having to deal with these illnesses daily. Keep in mind that some have even gained remission and for some of us remission is along ways off. I thought going on Entocort was only going to be a 6 to 8 week treatment...........DAH boy was I WRONG!!!!!!!!!! I still haven't been able to go to a lower dosage but at least I'm not running to the toilet 15-20 times each day.
For me, the more upset I get the worse the Big D is for me. So even though it's hard to do, we need to calm down for our own well being.
Good Luck Babsey! Keep comming back!
Love and God Bless:
Jodi
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
Welcome to the club. <sigh>Babsey wrote:I don't feel like my doctors are very knowledgeable or helpful.
Unfortunately, you said a mouthful there. However, there are a few GI docs beginning to pop up here and there, these days, who are open-minded, willing to learn from their patients, and any other credible sources of information they can find, (such as the internet), and they are definitely a breath of fresh air, for those of us fortunate enough to locate one of them. Usually, the first indication that you have found a "keeper", is when you realize that your "new" doc is actually aware that one of the primary triggers of MC, (among others), is food sensitivities, primarily gluten, and dairy. (Sadly, most of them still deny any connection, and laugh at the suggestion that a diet change could alleviate the symptoms.)
Frankly, as out of date as the general thinking of mainstream medicine is on this disease, I don't see how a GI doc could possibly stay on the leading edge of technology these days, unless they research the internet regularly. Traditional channels of learning sometimes require decades for changes to trickle down to the doctors practicing in the field, (medical schools have to add it to their course work, before some doctors will accept it), and technology is changing far too rapidly for that to be an acceptable approach to learning how to treat MC. When research reports arrive, most of them are probably thrown on top of an already tall stack of reports waiting to be read. On the the other hand, in a few minutes, a cyber-savy doc can search for, and read, any new research reports that apply to his field of interest. Sorry, I got sort of side-tracked, there.
We have one or two members, (artteacher comes to mind), who have found that Caltrate 600 Plus helps them to get over an MC flare, (in addition to it's advertised benefits). If you are interested in an explanation of why it might help to end a flare, I would be happy to offer my thoughts on that, but since it's a long and detailed discussion, that requires a lot of background information, I won't bore you with it, unless you specifically want to hear it.
Here are some very good references for keeping osteopenia under control, especially if you need to cut dairy out of your diet:
http://www.paleodiet.com/losspts.txt
http://www.womentowomen.com/bonehealth/ ... rosis.aspx
http://www.beyondveg.com/cordain-l/prot ... s-1a.shtml
Incidentally, a diary containing daily entries of foods, times, reactions, general well-being, etc., is an excellent way to keep track of all that data.
According to the most qualified experts we are aware of, in theory, a good probiotic is recommended to help establish a proper bacterial balance in the gut, and to facilitate healing. In reality, though, none of us here, nor even Dr. Fine himself, (he is one of the foremost researchers on MC, and the founder of Enterolab), have ever been able to find a probiotic that actually seemed to help us, in the long run, and a few experiences were even somewhat disasterous, (Polly, for example, felt like there was a war going on in her gut, when she tried one, and, of course, it temporarily ended her remission). One usually has to use one of the most potent, refrigerated probiotics available, in order to see much effect at all, though, YMMV.
Here are some ideas of what we eat:
http://www.perskyfarms.com/phpBB2/viewt ... +breakfast
http://www.perskyfarms.com/phpBB2/viewt ... +breakfast
http://www.perskyfarms.com/phpBB2/viewt ... +breakfast
http://www.perskyfarms.com/phpBB2/viewt ... +breakfast
http://www.perskyfarms.com/phpBB2/viewt ... +breakfast
http://www.perskyfarms.com/phpBB2/viewt ... +breakfast
http://www.perskyfarms.com/phpBB2/viewt ... +breakfast
Keep in mind that some of these suggestions will not be safe for some individuals, since we do not all have the same intolerances.
Babsey wrote:(You'll be sorry you said I could ask anything!!!) LOL
Never! Believe me, we're serious about trying to help newly-diagnosed members, (and anyone else), to achieve remission just as soon as possible. Once you have this disease, you never forget just how miserable, humilating, and life-altering it can be. Every GI doc should have to spend at least a few months dealing with a full flare, (in their own body), before receiving a license that allows him or her to treat MC. There are a few of those around - Dr. Fine, for example, (of Enterolab), decided to devote his research to gluten sensitivity and MC, after he developed it himself. Many of us are often short on time, but we still try to offer support here, whenever we can, to the extent our schedule allows us, because we will never forget just how much the support we ourselves received has meant to us, over the years.Tex
P S Please remember that most of us are not doctors, (although a few of us are either doctors or other medical professionals), and we cannot offer specific medical advice on this site. All the same, we have accumulated what is arguably the largest MC database in the world, with the most up-to-date information on MC and related issues, and we have done so simply by sharing experiences and research. IOW, we learn from each other, so all feedback is much appreciated, whether good or bad. Who has the most experience with dealing with MC? Why the people who have it, of course. MC is barely a blip on the radar of most GI docs. We hope that will eventually change.
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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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Welcome Babsy,
The others have said a lot. But I wanted to add my been there, done that (except you and I seem to be doing our illnesses opposite...I got MC at 30, and had a hysterectomy at 33). My trigger was ibuprofen. Once I stopped using that as my pain reliever of choice (at that time), my D went away. I went gluten free later, and was pleasantly surprised to find that many muscle aches I had started to ease up. My energy is better now too. But I credit that largely to my hysterectomy. Maybe the gluten free thing helped too.
While your gut is trying to heal, you'll probably find you have trouble digesting fresh veggies and other fiberous foods. Lettuce is the worst. But give things time. Unfortunately there is not an overnight cure for this. And it is a bit trial and error as we all have slight twists on what works for us individually.
Keep us posted on what you are trying and how you are doing and we'll add our 2 cents along the way.
Katy
PS: What part of upstate NY? I can recommend a great gluten free bakery in Troy, and I hear there is a new restaurant in Poughkeepsie called Shadows that has a gluten free menu.
The others have said a lot. But I wanted to add my been there, done that (except you and I seem to be doing our illnesses opposite...I got MC at 30, and had a hysterectomy at 33). My trigger was ibuprofen. Once I stopped using that as my pain reliever of choice (at that time), my D went away. I went gluten free later, and was pleasantly surprised to find that many muscle aches I had started to ease up. My energy is better now too. But I credit that largely to my hysterectomy. Maybe the gluten free thing helped too.
While your gut is trying to heal, you'll probably find you have trouble digesting fresh veggies and other fiberous foods. Lettuce is the worst. But give things time. Unfortunately there is not an overnight cure for this. And it is a bit trial and error as we all have slight twists on what works for us individually.
Keep us posted on what you are trying and how you are doing and we'll add our 2 cents along the way.
Katy
PS: What part of upstate NY? I can recommend a great gluten free bakery in Troy, and I hear there is a new restaurant in Poughkeepsie called Shadows that has a gluten free menu.
THANK YOU, EVERYONE! Tomorrow is my day off so I cannot wait to go thru all the info and read everything!
Don't worry, Tex, I work in healthcare and understand about medical advice, etc. At this point, I'm just open to trying a new diet or anything else that might help. Unfortunetly, I'm not a patient person and I'm trying to adjust in this trial and error to see if something helps me. I realize it will take time.
I appreciate that fact that I have received more information and support from this site in the last two days, than I have in the past five months from three different physicians. You are all so great!
Don't worry, Tex, I work in healthcare and understand about medical advice, etc. At this point, I'm just open to trying a new diet or anything else that might help. Unfortunetly, I'm not a patient person and I'm trying to adjust in this trial and error to see if something helps me. I realize it will take time.
I appreciate that fact that I have received more information and support from this site in the last two days, than I have in the past five months from three different physicians. You are all so great!
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jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
You are very welcome Babsey and we are all looking forward to hearing from you and how you are doing.
Being impatient is a huge problem for many of us. Just like you we'd like for this to just go away once given medication and Pooffff! No more problems. I can tell you, that's not going to happen because I thought 6-8 weeks on Entocort and my life would go back to normal. WRONG!!!!!!!!!!!!!!!!!!!!!! Still have to do my best to stay on a GF diet and watch very closely what I eat.
Having the family here has really helped me alot. Believe me they do keep a close eye on you and if they don't hear from you for a few days they have ways of checking on you to make sure you're okay.
Have a great day and hope to hear more from you soon.
Love and God Bless:
Jodi
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
Welcome, Babsy! 
I have osteoporosis, though I'm much older than you. I questioned my GI about taking Entocort, a steroid, and he said that only a small part of it (I believe 10%) reaches the rest of the body. The rest is concentrated in the intestines. Entocort worked for me within 3-4 weeks and I have had pretty good control of my symptoms since I began taking it. I believe that Entocort is the most commonly prescribed drug for this disease, though certainly others are prescribed.
I began taking 9 mg. of Entocort per day about 13 months ago and am presently on 3 mg/day with the hope that I'll soon be able to taper off of it. I'm carefully monitoring my diet and after 1 1/2 years, am honing in on my last few intolerances.
MC is an autoimmune disease and as such can contribute to osteopenia and osteoporosis. I noticed that as soon as I began the Entocort, the arthritic pain in my fingers went away, making me realize that my pain was the result of the autoimmune disease.
I decided to take the Entocort because it usually immediately reduces the D. I thought I'd be able to taper off of it much sooner, but I have many intolerances and have had a longer path to remission than most. I'm interested in seeing how my osteoporosis tests will be once I've eliminated the autoimmune reactions. I've also stopped taking Fosamax and have begun an exercise program to strengthen my back bones. I've taken calcium/vitamin D supplements for years, along with eating three servings of dairy each day (I've had to eliminate dairy because of MC, however). Apparently the calcium and the dairy weren't enough to offset the damage due to the MC. IOW, I think the larger issues are the autoimmune reactions associated with MC.
Gloria
I have osteoporosis, though I'm much older than you. I questioned my GI about taking Entocort, a steroid, and he said that only a small part of it (I believe 10%) reaches the rest of the body. The rest is concentrated in the intestines. Entocort worked for me within 3-4 weeks and I have had pretty good control of my symptoms since I began taking it. I believe that Entocort is the most commonly prescribed drug for this disease, though certainly others are prescribed.
I began taking 9 mg. of Entocort per day about 13 months ago and am presently on 3 mg/day with the hope that I'll soon be able to taper off of it. I'm carefully monitoring my diet and after 1 1/2 years, am honing in on my last few intolerances.
MC is an autoimmune disease and as such can contribute to osteopenia and osteoporosis. I noticed that as soon as I began the Entocort, the arthritic pain in my fingers went away, making me realize that my pain was the result of the autoimmune disease.
I decided to take the Entocort because it usually immediately reduces the D. I thought I'd be able to taper off of it much sooner, but I have many intolerances and have had a longer path to remission than most. I'm interested in seeing how my osteoporosis tests will be once I've eliminated the autoimmune reactions. I've also stopped taking Fosamax and have begun an exercise program to strengthen my back bones. I've taken calcium/vitamin D supplements for years, along with eating three servings of dairy each day (I've had to eliminate dairy because of MC, however). Apparently the calcium and the dairy weren't enough to offset the damage due to the MC. IOW, I think the larger issues are the autoimmune reactions associated with MC.
Gloria
You never know what you can do until you have to do it.
Great post, Gloria, those are some very good points.
Babsey, as hard as you are working, (you obviously don't have any time that you can set aside to just be sick), a course of Entocort would probably eliminate most of the worst symptoms, so that you could function pretty much normally, while allowing time for the diet to take effect. Several members have found that, (in combination with the paleo diet, or at least a diet that eliminates the most common problem foods), something like a six month course of Entocort is often adequate to allow the gut to heal.
As Gloria mentioned, she, (and a few others with the same genes), has more food sensitivities than the rest of us here. She has what we refer to as Double DQ1 genes,
HLA-DQB1 Molecular analysis, Allele 1 05xx
HLA-DQB1 Molecular analysis, Allele 2 06xx
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6),
which makes her prone to multiple intolerances, and heightened sensitivity.
Note that most doctors seem to feel that an eight-week regimen of Entocort is sufficient, (and it will indeed bring remission, in most cases), but the patient will virtually always relapse, as the corticosteroid level in the body diminishes, unless the treatment is continued long enough to allow sufficent healing of the intestines. For most of us, six months seems to be a reasonable choice, though some of us can begin tapering the dosage sooner than that.
As Gloria pointed out, Entocort EC is encapsulated, so that it does not become active until it reaches the ileum, and the colon. That means that most of the draconian side effects that are seen with Prednisone, (due to Prednisone's systemic effects), are either absent, or greatly diminished, with Entocort, including the osteopenia/osteoporosis issue.
I'm not trying to convince you to use Entocort, but as Gloria mentioned, it's a relatively safe med, especially for short-term use, or even long-term use, at reduced dosages. It would allow you to feel much better, (assuming that it works for you), while the diet has time to take effect.
When deciding on a treatment program, each of us weighs the facts, and then we pick what appeals to us, and fine tune it as we go, (actually, we pick what strikes us as the lesser of two evils, because, let's face it, none of this stuff is fun, but virtually any treatment beats the heck out of chronic, uncontrollable D).
Tex
Babsey, as hard as you are working, (you obviously don't have any time that you can set aside to just be sick), a course of Entocort would probably eliminate most of the worst symptoms, so that you could function pretty much normally, while allowing time for the diet to take effect. Several members have found that, (in combination with the paleo diet, or at least a diet that eliminates the most common problem foods), something like a six month course of Entocort is often adequate to allow the gut to heal.
As Gloria mentioned, she, (and a few others with the same genes), has more food sensitivities than the rest of us here. She has what we refer to as Double DQ1 genes,
HLA-DQB1 Molecular analysis, Allele 1 05xx
HLA-DQB1 Molecular analysis, Allele 2 06xx
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6),
which makes her prone to multiple intolerances, and heightened sensitivity.
Note that most doctors seem to feel that an eight-week regimen of Entocort is sufficient, (and it will indeed bring remission, in most cases), but the patient will virtually always relapse, as the corticosteroid level in the body diminishes, unless the treatment is continued long enough to allow sufficent healing of the intestines. For most of us, six months seems to be a reasonable choice, though some of us can begin tapering the dosage sooner than that.
As Gloria pointed out, Entocort EC is encapsulated, so that it does not become active until it reaches the ileum, and the colon. That means that most of the draconian side effects that are seen with Prednisone, (due to Prednisone's systemic effects), are either absent, or greatly diminished, with Entocort, including the osteopenia/osteoporosis issue.
I'm not trying to convince you to use Entocort, but as Gloria mentioned, it's a relatively safe med, especially for short-term use, or even long-term use, at reduced dosages. It would allow you to feel much better, (assuming that it works for you), while the diet has time to take effect.
When deciding on a treatment program, each of us weighs the facts, and then we pick what appeals to us, and fine tune it as we go, (actually, we pick what strikes us as the lesser of two evils, because, let's face it, none of this stuff is fun, but virtually any treatment beats the heck out of chronic, uncontrollable D).
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 am definetly checking into the Entocort. I had an appt with my gastro guy last Friday, but I cancelled it because I did not feel like paying a co-pay and paying for parking so he could tell me, "there is nothing more that I can offer you" once again. I will to inquire about the Entocort and then if I'm not happy with the response, I'll start moving on to another doc.
Funny you should mention not having time to be sick. My office manager just looked at me, told me how terrible I looked and said to go home soon. So, I think I will and try to just get into bed and relax for the afternoon. Although, the guilt I will feel. Oh well. It's a little chilly and rainy here in Central NY today, so it will be a good day to try to catch up on some well needed rest!
My thoughts will be with all of you in the hurricane area! I've never been thru that and I can only imagine how horrific it must be. Stay safe and I'll check back with you all later!
Funny you should mention not having time to be sick. My office manager just looked at me, told me how terrible I looked and said to go home soon. So, I think I will and try to just get into bed and relax for the afternoon. Although, the guilt I will feel. Oh well. It's a little chilly and rainy here in Central NY today, so it will be a good day to try to catch up on some well needed rest!
My thoughts will be with all of you in the hurricane area! I've never been thru that and I can only imagine how horrific it must be. Stay safe and I'll check back with you all later!
I'm kind of surprised that he never offered Entocort, unless he just thinks it's too soon to give up on the Colazal, (you should be seeing some improvement by seven weeks, though, if it's going to help you). It does sometimes take longer, though. Maybe he thinks all corticosteroids are alike, and he's concerned about the osteopenia.
As Gloria mentioned, the main concern about osteopenia/osteoporosis, as far as MC is concerned, is the malabsorption problem. The sooner your gut heals, the sooner you will be able to properly absorb calcium, and all the other nutrients, again. IOW, the sooner, the better.
I just remembered that you mentioned in your first post that you were "snippy". Of course that can be caused by any one of several things, but a prime suspect is potassium deficiency. Potassium deficiency is often a frequent problem during extended periods of D. I've been there several times myself, and never realized how it affected me, but on one occasion, my mother became potassium deficient, and she was not only "snippy", but downright belligerent. IOW, the personality effect is very obvious to others.
Tex
As Gloria mentioned, the main concern about osteopenia/osteoporosis, as far as MC is concerned, is the malabsorption problem. The sooner your gut heals, the sooner you will be able to properly absorb calcium, and all the other nutrients, again. IOW, the sooner, the better.
I just remembered that you mentioned in your first post that you were "snippy". Of course that can be caused by any one of several things, but a prime suspect is potassium deficiency. Potassium deficiency is often a frequent problem during extended periods of D. I've been there several times myself, and never realized how it affected me, but on one occasion, my mother became potassium deficient, and she was not only "snippy", but downright belligerent.
IOW, the personality effect is very obvious to others.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.
?
Should I be thinking of the Entocort....it was one of the two offerings from my GI doc? Lialda was the other. I was doing so well just going GF and then soy raised it's ugly head. I was thinking about just trying to control the D (and noises) with diet but since I don't yet know of any more foods, food colorings or other additives maybe I should go the drug route. I hate to do that but I would like my life back.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Joan,
Well, since you had such a good initial response to the diet, I don't think there is much question that it will work for you, in the long run. If the D seems to be persistent, then yes, you can probably stop it with Entocort, but if it works, then you won't know if you are on the right track with your diet, until you stop taking the Entocort. Usually, Entocort is taken by those who don't show any initial response to the diet, (or those who choose to start the diet and the med at the same time, or those who aren't concerned about diet). If the D is really getting on your nerves, then you might try Entocort for a few weeks, and after regaining control, see if you can taper off of it, and maybe the diet will hold you in remission by then. If not, you may have to use it longer. You have to do what you feel is best for you.
Tex
Well, since you had such a good initial response to the diet, I don't think there is much question that it will work for you, in the long run. If the D seems to be persistent, then yes, you can probably stop it with Entocort, but if it works, then you won't know if you are on the right track with your diet, until you stop taking the Entocort. Usually, Entocort is taken by those who don't show any initial response to the diet, (or those who choose to start the diet and the med at the same time, or those who aren't concerned about diet). If the D is really getting on your nerves, then you might try Entocort for a few weeks, and after regaining control, see if you can taper off of it, and maybe the diet will hold you in remission by then. If not, you may have to use it longer. You have to do what you feel is best for you.
I hear you - few things are more miserable and life-altering, than world-class D.I hate to do that but I would like my life back.
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.