Newbie Recently diagnosed with LC
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Newbie Recently diagnosed with LC
Hello! I would like to first give you a little info about myself. I am 35yrs. old and am a mother of 3. My last child just turned 1! I have been teaching kindergarten for the past 12 years. Stress is my middle name! As long as I can remember I have had issues with D, weight loss, and fatigue. This December I was at an all time stress level and I had a sudden hit of extreme D which sent me on a journey I don't want to repeat. After 1 1/2 months of many tests I finally had a colonoscopy. The biopsies should I had microscopic colitis (LC). I have had various symptoms throughout this process which has thrown the doctors off. My blood pressure which was perfectly normal before the onset of this, was now between 140/100 and sometimes even higher 170/130. I was also experiencing abdominal pain, nausea, no appetite, dizziness, fatigue, sleeplessness. When I got the diagnosis I was first tested for celiac sprue by the blood test and then had my 2nd upper GI scope within a months time to take biopsies which weren't done the first time. The biopsies also came up negative for Celiac Disease. I was then put on Aasacol which made me even sicker. I was then put on Entocort. The D was getting better but still had extreme nausea. The doctor decided to put me on an antidepressant/ anxiety med called Remeron that is also used to increase appetite and is also used as a sleep aid. This did bring me out of my extreme dark place of hoplessness because I started eating again. However, I am still left with some issues. I can now function through my day as a mother and teacher (with a little family help) now but only with sheer determination. I wake up early feeling sick everyday. I feel nauseated and have cramping that almost always lands me in the bathroom. My stools are no longer really loose but I still have on average 3 stools first thing in the morning and then maybe 1 to 2 sometime in the day. I have a general ill feeling throughout a lot of my day and feel really weak. I still have some anxiousness feelings (mostly about not feeling well!). I also have blurred vision and keep wondering if I have some vertigo going on (which I have had in the past). In the very beginning I tried my regular treatment of vertigo but didn't help. Through my journey I was also told I have a hiatal hernia and a vitamin d defiency. I take prilosec for the Hiatal hernia and just started a regimen of 50,000iu of vit. D twice a week. Everytime I take the vtiamin d I seem to feel worse the next day. I might have to stop it. Looking at all of your posts it looks like I might have to look more into my diet. I did try a GF and DF diet for about 3 weeks and wasn't getting any better and then my doctor put me on the remeron and told me he didn't care what I ate Just Eat! My big question to the GI doc was, is nausea and no appetite a complaint of MC suffers and he said that it wasn't. This then made me question what is wrong with me then? Can't wait to here what you all have to say. I'm 35 years young and looking forward to better days where I can REALLY enjoy what all life has to offer!
Your story is horrible, my god, you have being going trough a lot. It must be so hard getting to through the day. In response to your other message I saw already some very valuable advices. Things that I can add are only from personal experiences.
Entocort also makes me nauseous, dizzy and gives me headache (I call it a combination of being drunk and having a hang over together). But luckily enough only when I take two pills a day. I have no side effects with one pill a day. I don't know on which dosage you are on now, but maybe it is worth trying to lower the dosage. For a lot of people, one pill a day is not enough to suppress the symptoms, but for others it can be. If it makes a difference, you will notice it immediately. I am not saying it will work, but maybe it is worth trying it.
The abdominal pain, like cramping, after I start using entocort, the D left, the cramping entered, especially when I started to eat the gluten free food (I mean the replacements of gluten free food, bread, cereals and that kind of stuff). To solve problems like this don't count on your GI or GP. In general mainstream medicine believes there is no relation at all between food and IBD's (or they assume wrong relations like the use of insolvable fibers). This you have to figure our yourself, but this group can be of such great help. I did the enterolab testing, to figure to which foods I was intolerant too
In most cases, avoiding the enterolab intolerances are not enough to get the MC (with or without medication) under control. This is because the inflammation is still active. Insolvable fibers can be a problem causer. Some say don't use any fibers at all. I use apple fiber (=solvable one) without problems. How to adjust your diet, to have no more stomach/abdominal pain is not an easy one, it is a case of trail and error. For a lot of us this means simple plain (and quite often boring) food, especially in the beginning.
I hope information and support of this board will help you in the first place to get most of your symptoms under control and secondly of course to achieve remission.
Not sure I can add anything to harma's post except to encourage you to read, read, read and keep reading the info on this site. So many have been helped here by the experiences and research of others. So, as harma said, read and ask questions. Changes in diet have also helped many people here.
And, of course........
Shirley
And, of course........
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Dear GLJ
I cannot add much to others. Mild Dizzyness and a hiatus hernia with some reflux were symptoms I had for many years. Since going GF, DF, SG, EF, and legume free I have not had these symptoms. But it is a struggle.
Your choice if you use diet or diet and medications to get better. For now I am on diet and medication (Entocort). It will take time but, you will get better.
Love ant
I cannot add much to others. Mild Dizzyness and a hiatus hernia with some reflux were symptoms I had for many years. Since going GF, DF, SG, EF, and legume free I have not had these symptoms. But it is a struggle.
Well how dumb can some doctors be? If it goes right through you, you don't benefit from what you eat. Only when you are able to control the D, can you start to get enough nutrients back into your system. He needs to get up to date with research about how certain foods can cause inflammation (not just to officially diagnosed Celiacs). He should check out Dr Fine and Dr. Cordain for starters. But, he may respond, they are not "mainstream". Well, they are not "mainstream"- researchers seeking real cures threaten established revenue streams of the "mainstream" drugs companies.he didn't care what I ate Just Eat!
Your choice if you use diet or diet and medications to get better. For now I am on diet and medication (Entocort). It will take time but, you will get better.
Love ant
Hi - I'm new to this group also but was diagnosed three years ago. I'm having a flare up right now and on month 2 of entocort 2 pills a day. Yes, it does give me a headache. My question is I'm having a horrible gas attack right now and wondering if anyone has any suggesions to help with this? Thanks, N
Dear Nfancy
So sorry you have MC, but welcome to the family here. Gas, if I understand correctly, is from bacteria fermenting in your gut. It is a fairly common symptom of MC (along with D). I believe too much sugar can be one (of many) things that can make gas worse. I am sure other more knowledgeable people will post shortly.
Are you on any diet to treat your MC or are you just using Entocort? As you will have read, Entocort can be an effective way of treating symptoms, but alone is not likely to bring a lasting remission.
Again welcome, and hope your flare settles down soon.
Love, ant
So sorry you have MC, but welcome to the family here. Gas, if I understand correctly, is from bacteria fermenting in your gut. It is a fairly common symptom of MC (along with D). I believe too much sugar can be one (of many) things that can make gas worse. I am sure other more knowledgeable people will post shortly. Are you on any diet to treat your MC or are you just using Entocort? As you will have read, Entocort can be an effective way of treating symptoms, but alone is not likely to bring a lasting remission.
Again welcome, and hope your flare settles down soon.
Love, ant
Thank you for your support. I am learning a lot. The internet is the only place I really have got any info about MC. The doctors just told me this is what I have and thrown some medication my way. Then they send letters in the mail telling me about test results on various tests I've taken and always say "I hope this letter is finding you well" Well I have news for them. I am not well!
By the way I am on 9mg. of Entocort a day.
By the way I am on 9mg. of Entocort a day.
N,
As Ant mentioned, the gas is a byproduct of fermentation. Gas is a very common symptom with celiac disease, and the inflammatory bowel diseases, because the autoimmune reaction that causes the inflammation, interferes with proper digestion, and foods that do not digest properly, end up fermenting in the colon. The primary offenders are foods that contain gluten, and casein, (the primary protein in milk), but once the process starts, the enteritis that results, causes a suppression of enzyme production in the small intestine, so that lactose and other sugars are not properly digested, so that they add to the fermentation problem. Also, most fiber can only be digested by fermentation, (some fiber cannot be digested by humans at all, of course), so that if you have active MC, any fiber in your diet will virtually guarantee that you will have fermentation/gas/bloating.
Welcome to the board - it's good to see you posting.
Tex (Wayne)
As Ant mentioned, the gas is a byproduct of fermentation. Gas is a very common symptom with celiac disease, and the inflammatory bowel diseases, because the autoimmune reaction that causes the inflammation, interferes with proper digestion, and foods that do not digest properly, end up fermenting in the colon. The primary offenders are foods that contain gluten, and casein, (the primary protein in milk), but once the process starts, the enteritis that results, causes a suppression of enzyme production in the small intestine, so that lactose and other sugars are not properly digested, so that they add to the fermentation problem. Also, most fiber can only be digested by fermentation, (some fiber cannot be digested by humans at all, of course), so that if you have active MC, any fiber in your diet will virtually guarantee that you will have fermentation/gas/bloating.
Welcome to the board - it's good to see you posting.
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.
Hi GLH,
Your story sounds similar to my history. We are pretty close in age also. Aren't we too young for this??? I was diagnosed with LC last summer after months of being told that it was stress or a virus. Found this forum around the beginning of the year, and I have learned more about this disease than my doctor will probably ever know. He told me to cut out coffee and dairy. Whatever!
Anyway, I'm nauseaus all the time! I take Promethazine daily with very little relief. It's pretty much a nagging feeling of getting ready to lose my lunch all the time. I've even done that right in front of a client before. Embarrassing to say the least.
I started GF diet in January. I have not been religious about it even though I know that long term this is going to be what helps the most. I have been functioning at least. That is until last week. I started on the downward spiral of where I was last summer and just about lost it (mentally). My GI
doc was able to see me yesterday afternoon and prescribed Entocort. He said that he did not do this originally because "most people respond to Imodium and this stuff is really expensive". I filled it yesterday and was scared to take them. Just the thought of a steroid makes me crazy! I bit the bullet and took three capsules this morning. So far, so good. I know it's too soon to know anything for sure, but I was feeling as if this was my last option. I do intend on becoming more serious about the GF diet because I believe that it is going to be much more beneficial than drugs.
My advice to you about the nausea is to try and eat small meals throughout the day. Maybe that will help.
-Rebecca
Your story sounds similar to my history. We are pretty close in age also. Aren't we too young for this??? I was diagnosed with LC last summer after months of being told that it was stress or a virus. Found this forum around the beginning of the year, and I have learned more about this disease than my doctor will probably ever know. He told me to cut out coffee and dairy. Whatever!
Anyway, I'm nauseaus all the time! I take Promethazine daily with very little relief. It's pretty much a nagging feeling of getting ready to lose my lunch all the time. I've even done that right in front of a client before. Embarrassing to say the least.
I started GF diet in January. I have not been religious about it even though I know that long term this is going to be what helps the most. I have been functioning at least. That is until last week. I started on the downward spiral of where I was last summer and just about lost it (mentally). My GI
doc was able to see me yesterday afternoon and prescribed Entocort. He said that he did not do this originally because "most people respond to Imodium and this stuff is really expensive". I filled it yesterday and was scared to take them. Just the thought of a steroid makes me crazy! I bit the bullet and took three capsules this morning. So far, so good. I know it's too soon to know anything for sure, but I was feeling as if this was my last option. I do intend on becoming more serious about the GF diet because I believe that it is going to be much more beneficial than drugs.
My advice to you about the nausea is to try and eat small meals throughout the day. Maybe that will help.
-Rebecca
GL,
Your blood pressure issue should not be taken lightly. I'm speaking from experience, since I had some serious blood pressure issues due to drug interactions, in late January. I was taking a monamine oxidase, (MAO), inhibitor, (rasagaline), and my doctor, (a neurologist, who should know better), never mentioned any risk of drug interactions. After my blood pressure started increasing, and finally spiked to 225/121 one day, (in the ER), I looked it up, and found that rasagaline interacts with 625 other drugs, many of which are quite commonly used. Antihistamines, for example, are on the list, and I'm guessing that my high BP excursions were in response to an interaction with an antihistamine that I took for hayfever, a few days before my BP event peaked, (BP excursions due to MAO interactions, last for a while, and tend to peak 2 or 3 days after they begin). To add to the risk, most of the MAO inhibitors seem to have a very long half-life, so that they can prolong the risk for weeks, and even months. I can't prove the connection, of course, but the following week, I woke up with massive colonic bleeding, and wound up in emergency surgery, where my entire colon was removed, in order to save my life. Since all the rasagaline has finally been used up by my body, my BP has settled down, and I haven't had any more problems with it. Please don't think that I am suggesting that this will happen to you, because I had other issues with my colon, (including diverticulitis). I'm writing this to emphasize that drugs that have MAO activity, can have very sinister, (and unexpected), effects on BP, and very, very few doctors seem to be aware of the risks involved. Again, I'm speaking from my own personal experience, here.
The reason why I mention this, is because the tetracyclic antidepressants are closely enough related to the MOA inhibitors, that they have characteristics in common with them, and they significantly interact with them. It might be possible that the Entocort contributed to your high BP issues, but if that problem didn't show up until after you began taking the Remeron, then it is very likely to be the cause. If so, I would stop taking that stuff ASAP. Blood pressure spikes can cause strokes, heart attacks, bleeding, etc., and drug interactions are the stuff of which BP spikes are made.
Regarding the Prilosec, consider this quote, from a doctor who does know how to treat MC:
http://www.modern-diets-and-nutritional ... art-2.html
Another problem with Prilosec is the fact that it is a PPI, (Proton Pump Inhibitor), and it has been shown to actually cause MC, and other inflammatory bowel diseases. Also, there are other risks - according to research, patients taking proton pump inhibitors (Prilosec and Prevacid) were almost three times more likely to have a C-diff infection than non-users.
And finally, regarding the "I hope this letter is finding you well", remark - that does seem kind of ironic, considering that most of them don't have much success in treating MC, in the long run.
Tex
Your blood pressure issue should not be taken lightly. I'm speaking from experience, since I had some serious blood pressure issues due to drug interactions, in late January. I was taking a monamine oxidase, (MAO), inhibitor, (rasagaline), and my doctor, (a neurologist, who should know better), never mentioned any risk of drug interactions. After my blood pressure started increasing, and finally spiked to 225/121 one day, (in the ER), I looked it up, and found that rasagaline interacts with 625 other drugs, many of which are quite commonly used. Antihistamines, for example, are on the list, and I'm guessing that my high BP excursions were in response to an interaction with an antihistamine that I took for hayfever, a few days before my BP event peaked, (BP excursions due to MAO interactions, last for a while, and tend to peak 2 or 3 days after they begin). To add to the risk, most of the MAO inhibitors seem to have a very long half-life, so that they can prolong the risk for weeks, and even months. I can't prove the connection, of course, but the following week, I woke up with massive colonic bleeding, and wound up in emergency surgery, where my entire colon was removed, in order to save my life. Since all the rasagaline has finally been used up by my body, my BP has settled down, and I haven't had any more problems with it. Please don't think that I am suggesting that this will happen to you, because I had other issues with my colon, (including diverticulitis). I'm writing this to emphasize that drugs that have MAO activity, can have very sinister, (and unexpected), effects on BP, and very, very few doctors seem to be aware of the risks involved. Again, I'm speaking from my own personal experience, here.
The reason why I mention this, is because the tetracyclic antidepressants are closely enough related to the MOA inhibitors, that they have characteristics in common with them, and they significantly interact with them. It might be possible that the Entocort contributed to your high BP issues, but if that problem didn't show up until after you began taking the Remeron, then it is very likely to be the cause. If so, I would stop taking that stuff ASAP. Blood pressure spikes can cause strokes, heart attacks, bleeding, etc., and drug interactions are the stuff of which BP spikes are made.
Regarding the Prilosec, consider this quote, from a doctor who does know how to treat MC:
Please read all of the article that quote comes from. It's about inflammatory bowel disease in general, (not just MC), but it is an excellent article, with suggestions that actually work:As the symptoms become worse, a visit to a physician may be deemed necessary. Frequently the physician will write a prescription for Nexium or Prilosec. The most common side effects of Nexium are headache, diarrhea and abdominal pain. Which is what you are experiencing. So the question could be asked how is this drug supposed to help?
The reason given for prescribing Nexium or Prilosec is an overproduction of HCl, which Dr. Dahlman says is a misdiagnosis. Nexium and Prilosec reduce the amount of stomach acid which only makes stomach and colon problems in Colitis, IBS, and Crohn's worse.
http://www.modern-diets-and-nutritional ... art-2.html
Another problem with Prilosec is the fact that it is a PPI, (Proton Pump Inhibitor), and it has been shown to actually cause MC, and other inflammatory bowel diseases. Also, there are other risks - according to research, patients taking proton pump inhibitors (Prilosec and Prevacid) were almost three times more likely to have a C-diff infection than non-users.
And finally, regarding the "I hope this letter is finding you well", remark - that does seem kind of ironic, considering that most of them don't have much success in treating MC, in the long run.
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 read that article. It was very interesting! I am getting confused of what I should do! These are the meds I am on right now. Prilosec 40mg in morning, Entocort 9mg in morning, I usually take Zofran for nausea in morning. At night I take 15mg. of Remeron, and Zyrtec 10mg for allergies, vitamin D 50,000iu, a probiotic, 1 pepto chewable tablet. I have lomotil on hand if I need it. I haven't used it for awhile since I take the pepto. I also take some dietary supplements that a homeopathic/medical doctor put me on. She thinks I need detoxed. These include 1 tsp. of vitamin C powder, 1 tsp. Glycine, 1 tsp. of Electrolytes in 1 quart of water twice a day, 1 scoop of medical food (ultra Clear PH), 1 tsp. of Glutagenics that repairs mucous lining of intestine 2 to 3 times a day in some water. Still having some D, burning in stomach, belchy, nausea, blurred vision, weakness in legs, burning sensation in my ears, neck, shoulders, arms (maybe due to some anxiety?) I also have been seeing a chriopracter too. My hopes are eventually through more homeopathic methods and chiropractic care that I can be med free. They say that they can make it happen. The last time I was at my homeopathic doc she did some microcurrent procedure on me. 1 was done for colitis and 1 was done for stress. I don't know much about it and I am not sold on that method. My chiropractic doc wants to run some food allergy tests. I can see why I am confused because I am seeing different docs with different methods. My homeopathic/medical doc (She specializes in autoimmune diseases) and chiropractor are more on the same page and both know of all of the meds I am on. My GI doc is not aware of the dietary supplements that I have went since the last time I seen him.
I know everyone suggests diet changes according to entreolab results. (I have to convince my husband on this first due to more money!) He is not sold on the diet issue because he has heard the GI docs tell me it doesn't matter.
Confused on what to do. I'm just trying to do whatever I can to get better. (Maybe too much) I'm just so tired of being sick!
I know everyone suggests diet changes according to entreolab results. (I have to convince my husband on this first due to more money!) He is not sold on the diet issue because he has heard the GI docs tell me it doesn't matter.
Confused on what to do. I'm just trying to do whatever I can to get better. (Maybe too much) I'm just so tired of being sick!
Hi "G" and
First, I want you to know that you WILL get your MC under control - there IS a light at the end of the tunnel!
Second, I hear you that you would like to control your MC without meds. I felt the same way and have successfully managed my MC (despite MANY associated food intolerances) with diet alone for 10 years now. BTW, I am an M.D. and totally frustrated with my colleagues for knowing very little about treating MC with diet. I am also open to alternative methods. Please keep in mind, however, that the only alternative method that has worked consistently for most of us here has been diet.
You do not have to get Dr. Fine's tests to get well. Here's a suggestion. Read L. Cordain's book on the Paleo Diet and give it a try for 3-4 weeks. I know it's difficult, but I'll bet anything if you can stick with it for a few weeks you will see improvement. Then you can add back in new foods one at a time to see which ones you have trouble with. I will bet that you have a gluten intolerance and perhaps dairy too. (Soy is the 3rd most common).
I would also recommend stopping all homopathic meds for now. It's not that I don't believe in them -it's just that they most likely contain all kinds of impurities/intolerances that your gut can't handle right now. (I am intolerant to carrageenen and even Pepto Bismol, of all things, so you never know . I also can't tolerate probiotics ). It's best to eat only pure, fresh foods - nothing processed or with unknown additives. You might even want to check the meds your doc prescribed to make sure they don't contain gluten or dairy. Also, proton pump inhibitors, like Prilosec, have been thought to cause MC. As you know from Ant's post, gluten can cause the symptoms of GERD.
Anyway, great to have you aboard. Looking forward to further chats. And remember, this too shall pass (no pun intended).
Love,
Polly
First, I want you to know that you WILL get your MC under control - there IS a light at the end of the tunnel!
Second, I hear you that you would like to control your MC without meds. I felt the same way and have successfully managed my MC (despite MANY associated food intolerances) with diet alone for 10 years now. BTW, I am an M.D. and totally frustrated with my colleagues for knowing very little about treating MC with diet. I am also open to alternative methods. Please keep in mind, however, that the only alternative method that has worked consistently for most of us here has been diet.
You do not have to get Dr. Fine's tests to get well. Here's a suggestion. Read L. Cordain's book on the Paleo Diet and give it a try for 3-4 weeks. I know it's difficult, but I'll bet anything if you can stick with it for a few weeks you will see improvement. Then you can add back in new foods one at a time to see which ones you have trouble with. I will bet that you have a gluten intolerance and perhaps dairy too. (Soy is the 3rd most common).
I would also recommend stopping all homopathic meds for now. It's not that I don't believe in them -it's just that they most likely contain all kinds of impurities/intolerances that your gut can't handle right now. (I am intolerant to carrageenen and even Pepto Bismol, of all things, so you never know . I also can't tolerate probiotics
). It's best to eat only pure, fresh foods - nothing processed or with unknown additives. You might even want to check the meds your doc prescribed to make sure they don't contain gluten or dairy. Also, proton pump inhibitors, like Prilosec, have been thought to cause MC. As you know from Ant's post, gluten can cause the symptoms of GERD.Anyway, great to have you aboard. Looking forward to further chats. And remember, this too shall pass (no pun intended).
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly, I ordered the book on-line. It is suppose to arrive Wed. or Thurs. I have been thrown on and so many meds through this mess that going back to the basics is what I think I need to do. Although the Remeron and Entocort I'll have to wean off and probably not simutaneously. I might try to go to 2 Entocort a day for starters. Do you think that is a good idea? I also think I am going to discontinue the Prilosec. I didn't take it today and no difference. I didn't take it for about a months period of time and my GI doc actually encouraged me to go back on it due to some complaints of the burning in my stomach. I told them I had went off of it because I didn't think it was helping anything and they said to continue taking it even if I didn't think it was working. Now that I'm typing this that sounds like a really stupid statement! It is crazy how I just listen to whatever they say. I am looking forward to summer (I'm a teacher) so I can concentrate on getting myself better. Right now I am so busy taking care of my 3 children and a full time job that it is hard to worry about what I put in my mouth. This week we have parent teacher conferences two evenings on top of teaching the school day. I'm not sure how I am going to manage the stress of all of it but I have no choice to try and work through it.
Rebecca,
I never wrote back to your response above. Keep us informed on how Entocort is going for you and YES we are way to young for all of this! I do notice I have to eat small amounts of food throughout the day or else I feel worse.
Thanks for all of your input!
GLJ
Rebecca,
I never wrote back to your response above. Keep us informed on how Entocort is going for you and YES we are way to young for all of this! I do notice I have to eat small amounts of food throughout the day or else I feel worse.
Thanks for all of your input!
GLJ
Hi again G!
I think you are wise to go back to basics!
Some here have done Entocort and diet together. Those who have done this have usually been able to eventually wean off the Entocort and then go with diet alone. And some have been able to go with diet alone - it depends on how much inflammation you have in your gut, how long you have had it, and how well you are able to avoid the foods that are making you sick. It took me 9 months of diet only to see my first formed B.M., but don't be alarmed. Long before that I saw significant improvement - less frequency, urgency, bloating, fatigue, etc. - so I knew I was on the right track.
The reason I like jumping directly to the caveman diet is because there is no thinking involved. LOL! IOW, you don't have to learn about gluten substitutes, where it is hidden, etc., which can be overwhelming. What could be more healthy than eating pure food? It's a major lifestyle change but definitely doable. If you decide to go that route, folks here will be happy to assist. I know it will be a challenge shopping and cooking for your hubby, 3 kids, and now you with a new diet. But again, I think if you could do it faithfully for a few weeks, you will begin to notice some changes. I hope you like the book - it is very scientifically accurate, with over 400 references to studies.
Are you really taking 50,000 IUs of vitamin D each day? That's a hefty dose. I thought I took a lot, and i'm doing 6000 IUs per day.
Love,
Polly
I think you are wise to go back to basics!
Some here have done Entocort and diet together. Those who have done this have usually been able to eventually wean off the Entocort and then go with diet alone. And some have been able to go with diet alone - it depends on how much inflammation you have in your gut, how long you have had it, and how well you are able to avoid the foods that are making you sick. It took me 9 months of diet only to see my first formed B.M., but don't be alarmed. Long before that I saw significant improvement - less frequency, urgency, bloating, fatigue, etc. - so I knew I was on the right track.
The reason I like jumping directly to the caveman diet is because there is no thinking involved. LOL! IOW, you don't have to learn about gluten substitutes, where it is hidden, etc., which can be overwhelming. What could be more healthy than eating pure food? It's a major lifestyle change but definitely doable. If you decide to go that route, folks here will be happy to assist. I know it will be a challenge shopping and cooking for your hubby, 3 kids, and now you with a new diet. But again, I think if you could do it faithfully for a few weeks, you will begin to notice some changes. I hope you like the book - it is very scientifically accurate, with over 400 references to studies.
Are you really taking 50,000 IUs of vitamin D each day? That's a hefty dose. I thought I took a lot, and i'm doing 6000 IUs per day.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.