Hi everyone. I am a newbie to Microscopic Colitis with diagnosis confirmed last Tuesday, so 5 days ago. However, My pharmacist sounded an alarm to me questioning why my GI provider had me on Ranitidine so long and telling me I should get off it. I read studies that revealed Ranitidine could cause Microscopic Colitis then asked my GI provider why I was taking it and told her what my pharmacist and the studies reported. She said she shouldn't have prescribed it and to get off of it immediately. I never had MC symptoms until after 3 weeks of taking Ranitidine. Everything that was tried for the symptoms were constipating and I relapsed to the same all night, all day symptoms. After an urgent care visit with tests revealed the inflammation I had been complaining about,a colonoscopy confirmed my suspicion of MC. I was immediately put on Hyoscyamine for diarrhea and Budesonide 3x 3mg daily 4 weeks then 2 capsules 1 week and 1 capsule 1 week. I think I will return to former symptoms when I am off because that has been what has happened with every medication tried. Before the colonoscopy I was taking Curcumin enhanced with Turmeric which helped the inflammation so well that my pain was subsiding. Budesonide doesn't feel like it is healing the inflammation but maybe it is too soon. I am wondering if I could take the Curcumin/Tumeric in addition to the medication. The pain is so bad I am taking CBD Oil morning and night. I have also resumed taking Herbal Adrenal Factors to help me get moving before my day slips by as the fatigue is quite bad. I am concerned I will return to full blown symptoms when my medication is up/
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Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Thanks, Tex.... I absolutely remember Gloria and I remember both of those threads - I will go read them again as soon as I'm done with this reply. Spending time on this forum will help me silence some of the noise in my head: I've got way too many voices, people, doctors, etc. telling me contradicting things and my head is spinning (again). I need to go back to listening to MY BODY and listening to MY voice. I happen to know that Entocort works the best for me. Yes, there are some side effects, but there are side effects with just about everything.... we each have to decide what we can and choose to live with to get the best quality of life.
Yes, the risk of bone depletion is real, but it's also very real if we stay in an inflamed state 90% of the time and are losing nutrients on a daily basis. I have NEVER broken a bone (yet), I'm fairly active, my balance is good, and I don't partake in any activities that are likely to cause me to crumble.
I've got to get on a cross-country flight in 2 weeks and spend some time helping my daughter with a newborn and a toddler. I need to get this flare manageable before I go. I'm going up to one Entocort per day, maybe even two for a while.
I think a big part of my long-term decision will depend on what this recent blood test shows. If it tells me that I am currently close to a therapeutic dose of the 6MP then I'm going to know this stuff doesn't work for me. But if it tells me I should be taking a much higher dose, then I may try that for a few weeks to see what the side effects are and give that 3 months to kick in. If, after that trial, 6MP does not work for me, I will find a doctor who agrees to let me stay on Entocort for life.
Tex, your post brought me to tears (literally) because I was again reminded of how wonderful, helpful, caring, and giving you are. You are always here for us, you take the time for us, you do the searching and research for us, and you always give us a ray of hope. When I'm feeling down, remembering that there are people like you (although not enough of them!) restores my faith.
Sue
Yes, the risk of bone depletion is real, but it's also very real if we stay in an inflamed state 90% of the time and are losing nutrients on a daily basis. I have NEVER broken a bone (yet), I'm fairly active, my balance is good, and I don't partake in any activities that are likely to cause me to crumble.
I've got to get on a cross-country flight in 2 weeks and spend some time helping my daughter with a newborn and a toddler. I need to get this flare manageable before I go. I'm going up to one Entocort per day, maybe even two for a while.
I think a big part of my long-term decision will depend on what this recent blood test shows. If it tells me that I am currently close to a therapeutic dose of the 6MP then I'm going to know this stuff doesn't work for me. But if it tells me I should be taking a much higher dose, then I may try that for a few weeks to see what the side effects are and give that 3 months to kick in. If, after that trial, 6MP does not work for me, I will find a doctor who agrees to let me stay on Entocort for life.
Tex, your post brought me to tears (literally) because I was again reminded of how wonderful, helpful, caring, and giving you are. You are always here for us, you take the time for us, you do the searching and research for us, and you always give us a ray of hope. When I'm feeling down, remembering that there are people like you (although not enough of them!) restores my faith.
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Hi MamaBeabs,
Welcome to the forum. I'm sorry to hear that you have drug-induced microscopic colitis. Drugs prescribed by doctors are probably causing more cases of MC than any other factor. Doctors blindly prescribe various drugs without fully understanding the risks involved for the patient.
Regarding your treatment, you seem to be on the right track with diet changes except that you need to avoid all dairy products, not just lactose, It's the casein in dairy products that causes our immune system to produce antibodies. Also, about half or us are sensitive to soy and all it's derivatives and legumes, so it may be necessary for you to also avoid soy. Make sure your diet is absolutely 100 % gluten free, because even traces will cause most of us to continue to react. Drugs will not heal your digestive system. Budesonide helps to suppress the inflammation, but it cannot prevent additional inflammation from being generated if your diet includes any foods to which you react. Only a safe diet can prevent inflammation from being generated with each meal. But it takes the diet a while to heal the gut (our intestines heal slowly), so stick with the diet and don't give up.
The treatment regimen your doctor has prescribed for budesonide is very likely too short to allow you to heal. Most of us need about 6 months or so (including the taper) on budesonide if we want it to keep from relapsing when we end the treatment. A more realistic schedule is to take the full dose for 3 or 4 months, before starting the taper. And each step of the taper should be continued for about 3 or 4 weeks before lowering the dose to the next level. Most of us have the best luck if we lower the dose at the first signs of constipation, rather than doing it on a fixed schedule. after tapering the dose to 1 capsule per day, it helps to go to 1 capsule every other day for a week or longer, and then 1 capsule every third day, etc, for as long as necessary until you feel secure to end the treatment.
Budesonide doesn't work for everyone. If you start having side effects from it you may need to stop using it. Curcumin/Tumeric usually doesn't help enough to justify the risk. Some people may even react to it simply because we seem to react to many supplements when we are in a flare. I have no idea what's in Herbal Adrenal Factors, but be very, very careful about taking any supplements when trying to stop a flare. When treating active MC, less is more (the simpler and blander our diet, the more likely we are to recover).
I hope this helps. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the forum. I'm sorry to hear that you have drug-induced microscopic colitis. Drugs prescribed by doctors are probably causing more cases of MC than any other factor. Doctors blindly prescribe various drugs without fully understanding the risks involved for the patient.
Regarding your treatment, you seem to be on the right track with diet changes except that you need to avoid all dairy products, not just lactose, It's the casein in dairy products that causes our immune system to produce antibodies. Also, about half or us are sensitive to soy and all it's derivatives and legumes, so it may be necessary for you to also avoid soy. Make sure your diet is absolutely 100 % gluten free, because even traces will cause most of us to continue to react. Drugs will not heal your digestive system. Budesonide helps to suppress the inflammation, but it cannot prevent additional inflammation from being generated if your diet includes any foods to which you react. Only a safe diet can prevent inflammation from being generated with each meal. But it takes the diet a while to heal the gut (our intestines heal slowly), so stick with the diet and don't give up.
The treatment regimen your doctor has prescribed for budesonide is very likely too short to allow you to heal. Most of us need about 6 months or so (including the taper) on budesonide if we want it to keep from relapsing when we end the treatment. A more realistic schedule is to take the full dose for 3 or 4 months, before starting the taper. And each step of the taper should be continued for about 3 or 4 weeks before lowering the dose to the next level. Most of us have the best luck if we lower the dose at the first signs of constipation, rather than doing it on a fixed schedule. after tapering the dose to 1 capsule per day, it helps to go to 1 capsule every other day for a week or longer, and then 1 capsule every third day, etc, for as long as necessary until you feel secure to end the treatment.
Budesonide doesn't work for everyone. If you start having side effects from it you may need to stop using it. Curcumin/Tumeric usually doesn't help enough to justify the risk. Some people may even react to it simply because we seem to react to many supplements when we are in a flare. I have no idea what's in Herbal Adrenal Factors, but be very, very careful about taking any supplements when trying to stop a flare. When treating active MC, less is more (the simpler and blander our diet, the more likely we are to recover).
I hope this helps. Again, welcome aboard, and please feel free to ask anything.
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 Carol,carolm wrote:Hi Lisa,
I just wanted to mention that when I was on Entocort I was able to eat eggs and as I titrated off of it, I realized I was reacting to eggs but the Entocort was masking that. I had to eliminate eggs until I was in remission. (I was already gluten, dairy and soy free while on Entocort so most of my irritants had been eliminated.)
So there may be a chance that you are still reacting to something in your diet, but it isn’t obvious until you are on the lowest dose. If you have strong reactions there may be more than one irritant that keeps the inflammation going.
Good luck and I hope you don’t have to be on Humira for long. I have no doubt that it was a tough decision to make.
Carol
Thanks for the suggestion. I've actually never been able to eat eggs, so unfortunately I don't think that's part of the problem. I am still on a very strict diet and I'm thankful that something is working (keeping my fingers crossed that it stays that way!) I'm still doing a lot of diet sleuthing as the long-term plan is to be on as few meds as possible, so I appreciate the suggestions :)
Sue,
You have me blushing from your kind words. Thank you, I appreciate that.
I think you've done a great job of summing up the choices many of us have to make regarding selecting the lesser of two evils. After all, we're not just dealing with MC here — inflammation is the cause of all autoimmune diseases.
Many of us find that in order to get a response from budesonide during a flare, we have take a full dose. Once control is reestablished, it may be possible to taper the dose rather quickly (especially if constipation becomes a problem) but this isn't true in every case. Some flares can be very persistent. You may need to consider your past history with using budesonide. Since you're taking 6MP, it's difficult to guess how much it might be helping to suppress the inflammation, which makes it very difficult to decide how much help you might need from budesonide. And another part of the equation will be whether you view the traveling and babysitting as stressful or relaxing.
Good luck.
Tex
You have me blushing from your kind words. Thank you, I appreciate that.
I think you've done a great job of summing up the choices many of us have to make regarding selecting the lesser of two evils. After all, we're not just dealing with MC here — inflammation is the cause of all autoimmune diseases.
Many of us find that in order to get a response from budesonide during a flare, we have take a full dose. Once control is reestablished, it may be possible to taper the dose rather quickly (especially if constipation becomes a problem) but this isn't true in every case. Some flares can be very persistent. You may need to consider your past history with using budesonide. Since you're taking 6MP, it's difficult to guess how much it might be helping to suppress the inflammation, which makes it very difficult to decide how much help you might need from budesonide. And another part of the equation will be whether you view the traveling and babysitting as stressful or relaxing.
Good luck.
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.
-
MamaBeabs
tex
Thank you so much for your reply! I have anticipated that making dietary changes will be a lifelong change for me and am somewhat mentally prepared because my family is very supportive as is my GI Nutritionist. I will look up casein as I don't know what dairy products have that. I can also ask my nutritionist who I am able to send messages to. I have just returned from a trip to Arizona with my 82 year old Mom who lives alone. She was great about grocery shopping for gluten and dairy free products. AZ seems more consumer friendly to special diets in the grocery stores than here in Wisconsin, and the two restaurants we went to made special meals from scratch that were not on the menus.
This is my first weekend since being diagnosed that I could look up information on Microscopic Colitis and learn what this is that I now have. I am still in shock and dismay that drugs will not heal my digestive system and I will definitely bring up to my doctor that what I am learning is that a longer dose of Budesonide is needed and that each dose should be 3 to 4 weeks to keep from relapsing. It is relief to find someone like you who knows firsthand what works best in general.
I have found dealing with doctors to be frustrating and a major cause of my stress. I first had to fire two PCP's for not hearing or taking the next step toward getting me the help I needed, then my insurance company (they are fantastic and have been a huge support) stepped in and allowed me to get GI providers without a referral. Unfortunately the first one was the APNP who prescribed Ranitidine. Before that I had alternating constipation/diarrhea but mostly constipation. Ranitidine was prescribed for a not so bad case of acid reflux. Three weeks into taking it (I have no idea why I needed to take it that long) I had my first episode of nocturnal diarrhea. My pharmacist (the best one I have ever met) alerted me that I needed to stop taking the Ranitidine immediately and that it could cause Microscopic Colitis. The GI APNP said that he was correct, that she should not have prescribed it or had me take it that long and apologized. It was too late. I became more and more ill and was so inflamed and exhausted, with constant trips to the bathroom day and night.
I saw her again on July 20th which was a useless visit. By mid-August I could barely function and was not able to get another appointment until a month later. At that visit she ordered an x-ray and an ultrasound and prescribed Cholestyramine which was terrible. The following weekend I went to Urgent Care and the test that doctor ran revealed the inflammation. I was immediately scheduled for a colonoscopy. So that was my saving grace after living a nightmare that lasted from April 23rd to my diagnosis on October 16th. At least a half dozen trials of treatments later, I now have a GI doctor who presented me with the MC diagnosis, and it seems I cannot trust his judgement either from what you are saying. My plan is to present him with information I have learned, to go in prepared this time.
It is very draining and stressful to have to learn so much myself in so little time and have to confront doctors about their treatments. I am a nanny and I could never be so irresponsible in taking care of children. I hope this new doctor will listen. I suppose it may take a relapse for him to hear me.
My GI Nutritionist recommended a lactose free, gluten free, low FODMAP, low residue diet plan. I don't eat soy and have never cared for legumes. I am not going to resume any supplements. I trust the Nutritionist more than the doctors! I apologize for the length of this post. I feel so isolated despite the support I have at home. I haven't learned how to best cope with this illness, and have been sleeping a lot, so not much family time. The pain is relentless and laying down feels best.
Like you, I enjoy nature photography and I hope to get back out there soon. I used to hike several times a week. I did go on one photo trip while in AZ. I appreciate your patience and kindness as I debriefed my journey to where I am now. I have really had this all bottled up for these past six months, trying to be strong and advocating for myself. I am grateful to have found this site. I think now I can breathe having found somewhere to be among others who have gone through this. Just reading your other posts, like to Sue, is very helpful. I resonated with her traveling across country and being with young children. Thank you so much for reading all this. I feel like I can take another step forward now, and know that with this Forum I won't fall through the cracks. You are a Godsend!
Thank you so much for your reply! I have anticipated that making dietary changes will be a lifelong change for me and am somewhat mentally prepared because my family is very supportive as is my GI Nutritionist. I will look up casein as I don't know what dairy products have that. I can also ask my nutritionist who I am able to send messages to. I have just returned from a trip to Arizona with my 82 year old Mom who lives alone. She was great about grocery shopping for gluten and dairy free products. AZ seems more consumer friendly to special diets in the grocery stores than here in Wisconsin, and the two restaurants we went to made special meals from scratch that were not on the menus.
This is my first weekend since being diagnosed that I could look up information on Microscopic Colitis and learn what this is that I now have. I am still in shock and dismay that drugs will not heal my digestive system and I will definitely bring up to my doctor that what I am learning is that a longer dose of Budesonide is needed and that each dose should be 3 to 4 weeks to keep from relapsing. It is relief to find someone like you who knows firsthand what works best in general.
I have found dealing with doctors to be frustrating and a major cause of my stress. I first had to fire two PCP's for not hearing or taking the next step toward getting me the help I needed, then my insurance company (they are fantastic and have been a huge support) stepped in and allowed me to get GI providers without a referral. Unfortunately the first one was the APNP who prescribed Ranitidine. Before that I had alternating constipation/diarrhea but mostly constipation. Ranitidine was prescribed for a not so bad case of acid reflux. Three weeks into taking it (I have no idea why I needed to take it that long) I had my first episode of nocturnal diarrhea. My pharmacist (the best one I have ever met) alerted me that I needed to stop taking the Ranitidine immediately and that it could cause Microscopic Colitis. The GI APNP said that he was correct, that she should not have prescribed it or had me take it that long and apologized. It was too late. I became more and more ill and was so inflamed and exhausted, with constant trips to the bathroom day and night.
I saw her again on July 20th which was a useless visit. By mid-August I could barely function and was not able to get another appointment until a month later. At that visit she ordered an x-ray and an ultrasound and prescribed Cholestyramine which was terrible. The following weekend I went to Urgent Care and the test that doctor ran revealed the inflammation. I was immediately scheduled for a colonoscopy. So that was my saving grace after living a nightmare that lasted from April 23rd to my diagnosis on October 16th. At least a half dozen trials of treatments later, I now have a GI doctor who presented me with the MC diagnosis, and it seems I cannot trust his judgement either from what you are saying. My plan is to present him with information I have learned, to go in prepared this time.
It is very draining and stressful to have to learn so much myself in so little time and have to confront doctors about their treatments. I am a nanny and I could never be so irresponsible in taking care of children. I hope this new doctor will listen. I suppose it may take a relapse for him to hear me.
My GI Nutritionist recommended a lactose free, gluten free, low FODMAP, low residue diet plan. I don't eat soy and have never cared for legumes. I am not going to resume any supplements. I trust the Nutritionist more than the doctors! I apologize for the length of this post. I feel so isolated despite the support I have at home. I haven't learned how to best cope with this illness, and have been sleeping a lot, so not much family time. The pain is relentless and laying down feels best.
Like you, I enjoy nature photography and I hope to get back out there soon. I used to hike several times a week. I did go on one photo trip while in AZ. I appreciate your patience and kindness as I debriefed my journey to where I am now. I have really had this all bottled up for these past six months, trying to be strong and advocating for myself. I am grateful to have found this site. I think now I can breathe having found somewhere to be among others who have gone through this. Just reading your other posts, like to Sue, is very helpful. I resonated with her traveling across country and being with young children. Thank you so much for reading all this. I feel like I can take another step forward now, and know that with this Forum I won't fall through the cracks. You are a Godsend!
-
MamaBeabs
Sue777
Hello Sue, I am very new to this forum and new to Microscopic Colitis. I read your post about traveling across country and helping with your daughter's little ones. I traveled from Wisconsin to Arizona two weeks ago and had not yet been diagnosed. I got the diagnosis while I was there.
What helped me a lot on the plane was making sure I had big ziplock baggies with foods I can eat to carry on the plane. What was not helpful on the second leg of my flight- 4 hours- was that I was in a middle seat and the passengers on either side of me fell asleep. I could not get to a bathroom and feared I would have an embarrassing mess to deal with. Before the return flight I upgraded to an aisle seat for more money but it was worth every penny. I also had plenty of foods I could eat bagged up as well as clothes, and went through the inspection with ease. Buckled in a seat belt so long is the worst! On the way back I positioned my seat belt above my tummy and leaned my seat back so it would not hurt so bad.
I did not know anything about how to manage a flare up or what one even was, but I did listen to my body. I related to you in your post about your head spinning, and the need to listen to your own voice. It really helped to do that on my trip.
I went to bed early when I needed to, and took naps when I needed to. I packed extra undies and pants, and pads. I was lucky to be able to send a grocery list to my Mom before I arrived so foods I could eat were on hand. I picked up my first prescription of Budesonide at a local pharmacy.
I am a nanny so I know what it's like to care for young children while having a flare up. Hopefully your toddler will take a nice long nap. I take care of a toddler and a four year old. The toddler takes about an hour and a half nap. The four year old, only a half hour rest. I change the toddler, put her down, then four year old to the potty then to rest. Then me to the potty before she gets up. She has quiet reading time and a some simple art or quietly playing with toys until her sister wakes up. I can either get some dishes done or relax and watch the older one play, and still have time to use the bathroom again before the toddler awakes.
One thing to keep in mind is that carrying a toddler is backbreaking so make sure you aren't overexerting yourself. I have to do stairs where I work now, but have taught the toddler how to do stairs with me keeping her safe.
I am fortunate to have a family that is okay with me serving their children the same lunch that I can eat. It may seem impossible, but sitting with the toddler, even if holding a newborn feeding a bottle, is more relaxing than keeping busy with chores while they eat.
With a newborn, you might be more active than you feel you're up to, but children are so cuddly and snuggly. I have had newborns rest on my chest and their breathing feels quite calming! The nice thing is that you get to rock a lot which is also soothing. I can't sing in tune whatsoever, but I sing to the children and they love it more than reading a book. Singing in a dark room is relaxing too. If the children are resting it is okay for you to rest! You might want to do everything for your daughter, but I hope you will also take care of yourself. (As a nanny, the families I work for make sure I take time to eat and have a break even if I rest with one of them on the sofa.) Also, I have a a couple of books and some little toys I bring out only when I am there, and only for quiet time. Then I put them away.
The absolute worst part of my trip was the long flights. Sure, I was exhausted while visiting, but being with people you love and who love you, everyone will be in good hands! I hope you feel a little better before you go, and that most of all you have a memorable and special time with your family.
Thank you for your post! I felt from reading it that I wasn't alone in my struggle with doctors and illness.
Good luck!
Hello Sue, I am very new to this forum and new to Microscopic Colitis. I read your post about traveling across country and helping with your daughter's little ones. I traveled from Wisconsin to Arizona two weeks ago and had not yet been diagnosed. I got the diagnosis while I was there.
What helped me a lot on the plane was making sure I had big ziplock baggies with foods I can eat to carry on the plane. What was not helpful on the second leg of my flight- 4 hours- was that I was in a middle seat and the passengers on either side of me fell asleep. I could not get to a bathroom and feared I would have an embarrassing mess to deal with. Before the return flight I upgraded to an aisle seat for more money but it was worth every penny. I also had plenty of foods I could eat bagged up as well as clothes, and went through the inspection with ease. Buckled in a seat belt so long is the worst! On the way back I positioned my seat belt above my tummy and leaned my seat back so it would not hurt so bad.
I did not know anything about how to manage a flare up or what one even was, but I did listen to my body. I related to you in your post about your head spinning, and the need to listen to your own voice. It really helped to do that on my trip.
I went to bed early when I needed to, and took naps when I needed to. I packed extra undies and pants, and pads. I was lucky to be able to send a grocery list to my Mom before I arrived so foods I could eat were on hand. I picked up my first prescription of Budesonide at a local pharmacy.
I am a nanny so I know what it's like to care for young children while having a flare up. Hopefully your toddler will take a nice long nap. I take care of a toddler and a four year old. The toddler takes about an hour and a half nap. The four year old, only a half hour rest. I change the toddler, put her down, then four year old to the potty then to rest. Then me to the potty before she gets up. She has quiet reading time and a some simple art or quietly playing with toys until her sister wakes up. I can either get some dishes done or relax and watch the older one play, and still have time to use the bathroom again before the toddler awakes.
One thing to keep in mind is that carrying a toddler is backbreaking so make sure you aren't overexerting yourself. I have to do stairs where I work now, but have taught the toddler how to do stairs with me keeping her safe.
I am fortunate to have a family that is okay with me serving their children the same lunch that I can eat. It may seem impossible, but sitting with the toddler, even if holding a newborn feeding a bottle, is more relaxing than keeping busy with chores while they eat.
With a newborn, you might be more active than you feel you're up to, but children are so cuddly and snuggly. I have had newborns rest on my chest and their breathing feels quite calming! The nice thing is that you get to rock a lot which is also soothing. I can't sing in tune whatsoever, but I sing to the children and they love it more than reading a book. Singing in a dark room is relaxing too. If the children are resting it is okay for you to rest! You might want to do everything for your daughter, but I hope you will also take care of yourself. (As a nanny, the families I work for make sure I take time to eat and have a break even if I rest with one of them on the sofa.) Also, I have a a couple of books and some little toys I bring out only when I am there, and only for quiet time. Then I put them away.
The absolute worst part of my trip was the long flights. Sure, I was exhausted while visiting, but being with people you love and who love you, everyone will be in good hands! I hope you feel a little better before you go, and that most of all you have a memorable and special time with your family.
Thank you for your post! I felt from reading it that I wasn't alone in my struggle with doctors and illness.
Good luck!
MamaBeabs,
Casein is the main protein in milk, so it's in all dairy products, unfortunately. It's possible that you're not sensitive to casein — about 15 to 20 % of us are not. But it's safer to eliminate it from your diet while you are trying to recover, and then you can try it again after you are in remission, to see if you can tolerate it.
This discussion and support board has been here for over 13 years promoting diet changes to treat this disease, and we are just now beginning to see a few gastroenterologists here and there who realize that diet changes are important when treating MC. It seems to be taking forever for many of them to see the light, but someday maybe they will all learn how to treat the disease.
I believe that you are the first member here who has received an apology from their GI doc for causing the disease. She may not know how to treat MC, but I have to respect her honesty. By contrast, most gastroenterologists continue to pretend that they understand the disease, and they never apologize for their mistakes (or their ignorance).
We have to be tactful with our doctors, because these days, everyone seems to be telling them how to do their job . . . the insurance companies, the drug companies, the department head, the hospital administration, and most importantly, the hospital lawyers. Burnout rates among doctors appear to be at record highs. The last thing doctors want to see is their patients telling them what to do. Doctors like to feel as though they are in charge (even though we know that we have the final say), so we have to avoid appearing to be confrontational. Many of them are uncomfortable discussing MC anyway, because subconsciously, they feel insecure due to their inability to adequately treat it. So they can become belligerent, if we question their treatment methods.
Consequently, many of us have much better luck suggesting a treatment or a treatment change if we start the conversation with, "How do you feel about . . . ", or "Would you be open to . . ."
Speaking of photography, I became interested in photography when I was about 8 or 9 years old. This was back about 1950. So I spent many decades using manual cameras, and eventually, auto-exposure, manual focus SLRs. Getting good photographs (especially good wildlife photos) wasn't exactly easy back in those days. Technology has made it so easy now that it's almost embarrassing, because it's so easy to get good pictures. Why oh why couldn't all this nifty stuff have been developed before I got to be too old to really appreciate it?
Cameras today are awesome.
Tex
Casein is the main protein in milk, so it's in all dairy products, unfortunately. It's possible that you're not sensitive to casein — about 15 to 20 % of us are not. But it's safer to eliminate it from your diet while you are trying to recover, and then you can try it again after you are in remission, to see if you can tolerate it.
This discussion and support board has been here for over 13 years promoting diet changes to treat this disease, and we are just now beginning to see a few gastroenterologists here and there who realize that diet changes are important when treating MC. It seems to be taking forever for many of them to see the light, but someday maybe they will all learn how to treat the disease.
I believe that you are the first member here who has received an apology from their GI doc for causing the disease. She may not know how to treat MC, but I have to respect her honesty. By contrast, most gastroenterologists continue to pretend that they understand the disease, and they never apologize for their mistakes (or their ignorance).
We have to be tactful with our doctors, because these days, everyone seems to be telling them how to do their job . . . the insurance companies, the drug companies, the department head, the hospital administration, and most importantly, the hospital lawyers. Burnout rates among doctors appear to be at record highs. The last thing doctors want to see is their patients telling them what to do. Doctors like to feel as though they are in charge (even though we know that we have the final say), so we have to avoid appearing to be confrontational. Many of them are uncomfortable discussing MC anyway, because subconsciously, they feel insecure due to their inability to adequately treat it. So they can become belligerent, if we question their treatment methods.
Consequently, many of us have much better luck suggesting a treatment or a treatment change if we start the conversation with, "How do you feel about . . . ", or "Would you be open to . . ."
Speaking of photography, I became interested in photography when I was about 8 or 9 years old. This was back about 1950. So I spent many decades using manual cameras, and eventually, auto-exposure, manual focus SLRs. Getting good photographs (especially good wildlife photos) wasn't exactly easy back in those days. Technology has made it so easy now that it's almost embarrassing, because it's so easy to get good pictures. Why oh why couldn't all this nifty stuff have been developed before I got to be too old to really appreciate it?
Cameras today are awesome.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 Mamabeabs.
Welcome to a forum where you will never be ignored or feel alone. And if you ever want to chat privately, feel free to PM me and we can exchange e-mail addresses.
Yes, on the planes I always have ziplocks of safe food, but with the increased pressure in my tummy from the altitude and from the anxiety and stress of traveling, I'm not sure there really are any "safe" foods for me. I ALWAYS book an aisle seat, and I also carry a card in my wallet that states I have a medical condition that may require me to use a restroom immediately so that if the seat belt sign is on or I am in a place with no public restrooms, it gets me access pretty quickly.
I was shocked and rather upset that the last time I was out visiting my daughter and her child that I actually fell asleep during the toddler's nap! I NEVER nap during the day but for some reason I was extra drained this trip and on two days when I decided to hit the couch and watch TV after getting him down I fell asleep. I guess I should cut myself a break and accept that it's OK to do that, but I was horrified. I guess I have a hard time accepting that not only do I have a disease, but I'm also not a spring-chicken anymore.
As much as I love being with my daughter and her children, the trips are always stressful and exhausting. It's time off from work, it's time away from my homelife, it's a LONG trip both ways, and it's non-stop action once I hit the ground. Then I come back exhausted, with tons of catch-up both at home and at the office, and it takes a lot out of me. As much as it saddens me, I think I'm going to have to start limiting my trips out west. I have to think about ME more often (wish me luck!)
Thanks to all for being here. We're a tight-knit group and the support is priceless.
Sue
Welcome to a forum where you will never be ignored or feel alone. And if you ever want to chat privately, feel free to PM me and we can exchange e-mail addresses.
Yes, on the planes I always have ziplocks of safe food, but with the increased pressure in my tummy from the altitude and from the anxiety and stress of traveling, I'm not sure there really are any "safe" foods for me. I ALWAYS book an aisle seat, and I also carry a card in my wallet that states I have a medical condition that may require me to use a restroom immediately so that if the seat belt sign is on or I am in a place with no public restrooms, it gets me access pretty quickly.
I was shocked and rather upset that the last time I was out visiting my daughter and her child that I actually fell asleep during the toddler's nap! I NEVER nap during the day but for some reason I was extra drained this trip and on two days when I decided to hit the couch and watch TV after getting him down I fell asleep. I guess I should cut myself a break and accept that it's OK to do that, but I was horrified. I guess I have a hard time accepting that not only do I have a disease, but I'm also not a spring-chicken anymore.
As much as I love being with my daughter and her children, the trips are always stressful and exhausting. It's time off from work, it's time away from my homelife, it's a LONG trip both ways, and it's non-stop action once I hit the ground. Then I come back exhausted, with tons of catch-up both at home and at the office, and it takes a lot out of me. As much as it saddens me, I think I'm going to have to start limiting my trips out west. I have to think about ME more often (wish me luck!)
Thanks to all for being here. We're a tight-knit group and the support is priceless.
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
My H.R. director who has Crohn's tells me that if she does not have an aisle seat close to the rest room she will request one
when she gets to the airport or when she gets to the gate. She says she has a medical condition that requires her
to be seated very close to the restroom preferably on an aisle. Believe me, no one but us ever wants to sit near a restroom.
She has never had a problem being accommodated.
On line seat selection is ridiculous the way it works now.
when she gets to the airport or when she gets to the gate. She says she has a medical condition that requires her
to be seated very close to the restroom preferably on an aisle. Believe me, no one but us ever wants to sit near a restroom.
She has never had a problem being accommodated.
On line seat selection is ridiculous the way it works now.
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MamaBeabs
Thank you all for your information about how you handle MC when traveling and on use of the bathroom card. I am wondering about the books on Microscopic Colitis. Which book is most valuable to read first? I prefer Kindle books but I think one is not available in Kindle. I am trying to absorb everything about Microscopic Colitis as my diagnosis was one week ago and it is all so new, disturbing, upsetting and also time consuming to learn everything about dietary changes especially having a knowledgeable GI Nutritionist who has been spot on for the most part but disagrees with removing casein from the diet. It helps to read everyone's posts.
Your nutritionist apparently is not as knowledgeable about MC as she/he pretends to be.
If you doubt that most of us are casein-sensitive, look at some of our test results.
Food Sensitivity Test Results For Names A–J
Food Sensitivity Test Results For Names K–Z
Regarding the books, they should both be available on Kindle, but Kindle is currently . . . let's just say "kind of screwed up" as they attempt to incorporate createspace's printed books into their system. If you can't find a Kindle version of either book, try Smashwords.com. They carry versions of both books for every type of mobile device.
The first book (Microscopic Colitis) contains all the basics of the disease, including a complete description of the disease and the various forms, diagnostic information, conventional medical treatments, and non-medical treatments such as controlling the disease by dietary changes. You need to read it first in order to understand the discussions in the second book. The second book takes up where the first one leaves off, with additional information about various issues that affect people who have MC. It does not include much of the information that's contained in the first book, except where more recent medical research has provided additional information about these issues.
There's a huge amount of information to be learned about MC. Don't try to absorb it all at once. We have to take it one step at a time and learn as we go.
Tex
If you doubt that most of us are casein-sensitive, look at some of our test results.
Food Sensitivity Test Results For Names A–J
Food Sensitivity Test Results For Names K–Z
Regarding the books, they should both be available on Kindle, but Kindle is currently . . . let's just say "kind of screwed up" as they attempt to incorporate createspace's printed books into their system. If you can't find a Kindle version of either book, try Smashwords.com. They carry versions of both books for every type of mobile device.
The first book (Microscopic Colitis) contains all the basics of the disease, including a complete description of the disease and the various forms, diagnostic information, conventional medical treatments, and non-medical treatments such as controlling the disease by dietary changes. You need to read it first in order to understand the discussions in the second book. The second book takes up where the first one leaves off, with additional information about various issues that affect people who have MC. It does not include much of the information that's contained in the first book, except where more recent medical research has provided additional information about these issues.
There's a huge amount of information to be learned about MC. Don't try to absorb it all at once. We have to take it one step at a time and learn as we go.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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MamaBeabs
Thanks Tex,
Yes, my GI nutritionist and I have not agreed on some things in the past, but I have other resources like my pharmacist who today backed up what you said about needing a lot more time to heal on the Budesonide than the 6 weeks my doctor has scheduled. He knows so much and looks out for me. I am not going to consume casein. The nutritionist is uw health care employee so she tows the line. She anti-magnesium, anti-vitamin D and has said to go ahead and eat tomatoes and strawberries which both have seeds and tomatoes have skin. I am a bit aggravated today trying to coordinate services between two providers and it is like herding cats. This group of providers is part of a mega health care system, a virtual monopoly here and the providers stick together except the alternative and integrative medicine clinic where I found my PCP. In less than 1 year I have experienced two major HIPPA violations and fought the health care system tooth and nail as my own attorney. I became my own paralegal, documented everything, reporting to every oversight agency outside the system including the Office of Civil Rights and the licensing boards for doctors. One doctor was asked to leave the clinic. They tried to beat me with their huge legal staff, but lost. It was grueling, but even at only 5' tall, and just me against all of them they were proven wrong, wrong wrong! I learned (because i like to write like you) that I could copyright all the written communication I had with doctors and uw health system staff, including my medical records that contained anything that was ever said in person or over the phone and written down. Now no one except me can access anything about me. The doctors do not like that, and I think some of them and their staff are intimidated. If they want to know something, they have to ask me. Wowee, they actually have to communicate in person! What a concept! I have moved some of my support outside their system to professionals who they can't access notes from, professionals that are holistic and think outside the confines of a broken system. Someday, when I get my stamina back, I want to write a book for others how to advocate for yourself when the health care system is nothing more than a clearing house for bullies with medical degrees who have no clue how to be compassionate, or what harm the treatments they prescribe cause their patients. I let them share their advice, but I always check into it. I was so surprised that there was a Foundation just for Microscopic Colitis. The problem for the medical personnel is that if their solution is not the answer, they lose a patient. I want to educate myself as much as I can before November 8th which is when I see my doctor. I think he a good doctor, willing to listen, I think he would be open to hearing my thoughts. If this site was only about you, one person, I would be skeptical, but their are hundreds and hundreds of stories written by victims of this insidious disease. I am learning from their journeys. I will learn the medical jargon from your book. I currently have chosen a few good support providers, but as I said, coordinating just a couple of people within this system is like herding cats, and that is once you get past their gatekeepers: the switchboard, the schedulers, and the nurses. The more comfortable I am with my knowledge, the more relaxed I can be in discussion with my doctor. As much as I rally against the health care system, I was, for ten years, a hospital chaplain at tow hospitals, the person who showed up in emergency rooms, ICU, Neuroscience, Adult Psych, Cardiac, and especially with the dying. I do have another voice I use in person with a medical professional that is gentle and conversational, and I have empathy for all living humans. So I keep my guns holstered unless I have been misdiagnosed, mistreated, or demeaned, belittled and insulted. Today is just one of those days where the medical staff isn't sure who is supposed to see me for what. It would be nice if they could be good business people. Sigh. I'm ordering my first book tomorrow. I'll get the Kindle version so I can have it on Cloud Reader, and supplement it with the heart-wrenching stories, and the success stories on your incredible forum. For stress relief, I am going to share my photography with other photographers tonight. That will bring back to my fun and creative self, just in time for bed tonight. Thank you for writing the books! I look forward to all you have to share.
Yes, my GI nutritionist and I have not agreed on some things in the past, but I have other resources like my pharmacist who today backed up what you said about needing a lot more time to heal on the Budesonide than the 6 weeks my doctor has scheduled. He knows so much and looks out for me. I am not going to consume casein. The nutritionist is uw health care employee so she tows the line. She anti-magnesium, anti-vitamin D and has said to go ahead and eat tomatoes and strawberries which both have seeds and tomatoes have skin. I am a bit aggravated today trying to coordinate services between two providers and it is like herding cats. This group of providers is part of a mega health care system, a virtual monopoly here and the providers stick together except the alternative and integrative medicine clinic where I found my PCP. In less than 1 year I have experienced two major HIPPA violations and fought the health care system tooth and nail as my own attorney. I became my own paralegal, documented everything, reporting to every oversight agency outside the system including the Office of Civil Rights and the licensing boards for doctors. One doctor was asked to leave the clinic. They tried to beat me with their huge legal staff, but lost. It was grueling, but even at only 5' tall, and just me against all of them they were proven wrong, wrong wrong! I learned (because i like to write like you) that I could copyright all the written communication I had with doctors and uw health system staff, including my medical records that contained anything that was ever said in person or over the phone and written down. Now no one except me can access anything about me. The doctors do not like that, and I think some of them and their staff are intimidated. If they want to know something, they have to ask me. Wowee, they actually have to communicate in person! What a concept! I have moved some of my support outside their system to professionals who they can't access notes from, professionals that are holistic and think outside the confines of a broken system. Someday, when I get my stamina back, I want to write a book for others how to advocate for yourself when the health care system is nothing more than a clearing house for bullies with medical degrees who have no clue how to be compassionate, or what harm the treatments they prescribe cause their patients. I let them share their advice, but I always check into it. I was so surprised that there was a Foundation just for Microscopic Colitis. The problem for the medical personnel is that if their solution is not the answer, they lose a patient. I want to educate myself as much as I can before November 8th which is when I see my doctor. I think he a good doctor, willing to listen, I think he would be open to hearing my thoughts. If this site was only about you, one person, I would be skeptical, but their are hundreds and hundreds of stories written by victims of this insidious disease. I am learning from their journeys. I will learn the medical jargon from your book. I currently have chosen a few good support providers, but as I said, coordinating just a couple of people within this system is like herding cats, and that is once you get past their gatekeepers: the switchboard, the schedulers, and the nurses. The more comfortable I am with my knowledge, the more relaxed I can be in discussion with my doctor. As much as I rally against the health care system, I was, for ten years, a hospital chaplain at tow hospitals, the person who showed up in emergency rooms, ICU, Neuroscience, Adult Psych, Cardiac, and especially with the dying. I do have another voice I use in person with a medical professional that is gentle and conversational, and I have empathy for all living humans. So I keep my guns holstered unless I have been misdiagnosed, mistreated, or demeaned, belittled and insulted. Today is just one of those days where the medical staff isn't sure who is supposed to see me for what. It would be nice if they could be good business people. Sigh. I'm ordering my first book tomorrow. I'll get the Kindle version so I can have it on Cloud Reader, and supplement it with the heart-wrenching stories, and the success stories on your incredible forum. For stress relief, I am going to share my photography with other photographers tonight. That will bring back to my fun and creative self, just in time for bed tonight. Thank you for writing the books! I look forward to all you have to share.
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MamaBeabs
No one here is going to criticize your syntax or spelling, because most of us are often short on time and so our typing is often way short of perfect. Your posts look great, compared with most.
I agree that the health care system is broken and badly in need of repairs. A book about how to advocate for yourself would probably appeal to a lot of people. More and more individuals are taking a serious interest in their long-term health.
Photography is a great way to cultivate stress relief, and sharing it with others surely multiplies the benefits. I hope your session goes well tonight.
Tex
I agree that the health care system is broken and badly in need of repairs. A book about how to advocate for yourself would probably appeal to a lot of people. More and more individuals are taking a serious interest in their long-term health.
Photography is a great way to cultivate stress relief, and sharing it with others surely multiplies the benefits. I hope your session goes well tonight.
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.