Hi all,
I just want to say what a blessing it is to have found this site!
I thought I'd caught a bug when I started having chronic D several months ago. When all tests came back negative, I had a colonoscopy. The GI, right after the procedure said that the tests must have shown false negatives, because it definitely looked like inflammation from a bug so he put me on Flagyl right away. Not only did it not help, it seemed to make things worse.
A week later when the biopsies came back, his nurse called me and said I had CC (while giggling because she didn't know how to pronounce it). She said I should just take Pepto-Bismol four times daily and come back in six weeks.
Since then I've called the office several times to try to get help. I felt like I was on colonoscopy prep all day, every day. I've already tried several meds which of course did nothing.
Meanwhile I found this site, started to read and immediately went off gluten and dairy. I was going to say I haven't had any relief yet, but that's not entirely true - I no longer wake up at night having to go, and the urgency seems to have diminished some although I still have on average 14 BMs a day.
But this site has given me such hope. I ordered magnesium oil and it has helped with the leg cramps. I ordered the MC book, received it today and just reading the first few pages made me feel like less of a freak. I can't wait to read the rest!
I saw the GI today at the 6 week mark, and he hardly talked to me other than giving me yet two other drugs to try. When I asked him if this was a chronic thing, he said not necessarily, it might just "fizzle out" after a while.
So thank you all, if I hadn't found this site and the book, I might not have much hope for regaining my life but I'm a believer now and I will do whatever it takes to get better.
New here
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome Susanne.
You've come to the right place! We're all in this together. Pull up a chair, get cozy, and do a lot of reading. You'll find a wealth of information on here.
What medications did the GI doctor give you?
You've come to the right place! We're all in this together. Pull up a chair, get cozy, and do a lot of reading. You'll find a wealth of information on here.
What medications did the GI doctor give you?
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Hello Susanne,
Welcome to our Internet family. When your gastroenterologist's nurse doesn't know how to pronounce the disease you've been diagnosed with that's definitely a bad sign. You can bet that neither one of them has much experience with treating it.
It's very gratifying to see that you're motivated and you've jumped right in and you are already on your way to recovery. It takes a while for the damage to the intestines to heal so that the inflammation will fade away, but the correct diet changes will allow you to get your life back. If you have already eliminated trips to the bathroom during the night, you are definitely making progress. Good for you.
One thing to be aware of is medications that can trigger CC. If you are taking any NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, beta blockers, ACE inhibitors, and possibly others that don't come to mind at the moment, please be aware that they can perpetuate the inflammation and prevent remission.
Thank you for the kind words. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. When your gastroenterologist's nurse doesn't know how to pronounce the disease you've been diagnosed with that's definitely a bad sign. You can bet that neither one of them has much experience with treating it.
It's very gratifying to see that you're motivated and you've jumped right in and you are already on your way to recovery. It takes a while for the damage to the intestines to heal so that the inflammation will fade away, but the correct diet changes will allow you to get your life back. If you have already eliminated trips to the bathroom during the night, you are definitely making progress. Good for you.
One thing to be aware of is medications that can trigger CC. If you are taking any NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, beta blockers, ACE inhibitors, and possibly others that don't come to mind at the moment, please be aware that they can perpetuate the inflammation and prevent remission.
Thank you for the kind words. 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.
Thank you so much. You know, my PCP put me on some different SSRI's last year to deal with anxiety/panic attacks last year and it gave me D so I stopped it. But I suspect that they might have triggered this. I got a bit better after stopping them but never really got back to normal.
I also suspect that Aspartame has something to do with it. I was drinking Diet Coke/Coke Zero a lot before I got sick. When I recently had one, I had the worst reaction ever.
The GI first prescribed Balsalazide, then Apriso, and now Lialda and Diphenoxylate/atropine.
Honestly, I never took the Apriso, I had more faith in what I read on here than what the Dr said.
Again, thank you for caring and understanding.
I also suspect that Aspartame has something to do with it. I was drinking Diet Coke/Coke Zero a lot before I got sick. When I recently had one, I had the worst reaction ever.
The GI first prescribed Balsalazide, then Apriso, and now Lialda and Diphenoxylate/atropine.
Honestly, I never took the Apriso, I had more faith in what I read on here than what the Dr said.
Again, thank you for caring and understanding.
You are like most of us. We are no longer able to tolerate artificial sweeteners, and aspartame seems to be the worst.
It's odd that your doc would have you try Balsalazide, Apriso, and Lialda. They all have the same active ingredient, (mesalamine), except that balsalazide is a mesalamine pro-drug — IOW the body will create mesalamine from balsalazide. So if 1 doesn't work, the others probably are not going to work either.
Your anxiety/panic attacks were almost surely caused by a magnesium deficiency. How do I know? I learned the hard way — by personal experience. These days, most people in the general population have a magnesium deficiency. Virtually all IBD patients have a moderate to fairly severe magnesium deficiency (because of the malabsorption problem that comes with IBDs). I suffered with various degrees of magnesium deficiency for roughly 10 years before it finally got so bad (after I took an antibiotic for dental work) that I figured it out and resolved it. Doctors never detect magnesium deficiency. It's never on their radar. In my case even the Emergency Room docs ignored it, even though the blood tests were flagged for a magnesium deficiency.
If we have a magnesium deficiency, we have to figure it out for ourselves, no matter how severe the symptoms, because for some unknown reason it's invisible to physicians.
You're most welcome,
Tex
It's odd that your doc would have you try Balsalazide, Apriso, and Lialda. They all have the same active ingredient, (mesalamine), except that balsalazide is a mesalamine pro-drug — IOW the body will create mesalamine from balsalazide. So if 1 doesn't work, the others probably are not going to work either.
Your anxiety/panic attacks were almost surely caused by a magnesium deficiency. How do I know? I learned the hard way — by personal experience. These days, most people in the general population have a magnesium deficiency. Virtually all IBD patients have a moderate to fairly severe magnesium deficiency (because of the malabsorption problem that comes with IBDs). I suffered with various degrees of magnesium deficiency for roughly 10 years before it finally got so bad (after I took an antibiotic for dental work) that I figured it out and resolved it. Doctors never detect magnesium deficiency. It's never on their radar. In my case even the Emergency Room docs ignored it, even though the blood tests were flagged for a magnesium deficiency.
If we have a magnesium deficiency, we have to figure it out for ourselves, no matter how severe the symptoms, because for some unknown reason it's invisible to physicians. You're most welcome,
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, Susanne. Welcome to our group. You are not a freak by any means. We're all in this together and like you, I am so grateful I found this site. My GI told me that gluten free is a fad so I knew right from the start that I was on my own in figuring this all out. Thanks to this group alone I'll hit the three year mark of my LC diagnosis in September and I have been leading a "normal" life for quite some time now. As Jari said, search the forums and you'll learn a wealth of information. I still learn things that I didn't know. I keep Tex's book by my bed and Gabes is a wonderful resource (along with many others). She recently posted something about rosemary that I wasn't aware of and it was one of those light bulb moments. Don't hesitate in asking anything - one of us will have been there.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
Welcome Susanne
It is certainly nice to know that we are not alone in this and that there are some answers. And Tex's book is great! And Tex, Gabes and others are so helpful and so willing to share their experience and expertise.
How rude of the nurse to giggle when giving you a diagnosis. It seems that most of the GI docs don't have answers to our questions but you will find the answers here from the people that have experienced what you are going through. The doctor is great for writing out scripts for medication.
Sometimes it is hard because we wonder why we can't eat 'normal' food like everyone else. Then I think of the masses of health problems that are around today and feel blessed that I am learning the best way to heal my body and keep it healthy even if that means avoiding 'normal' food that acts like a poison to me.
Happy Healing Susanne
It is certainly nice to know that we are not alone in this and that there are some answers. And Tex's book is great! And Tex, Gabes and others are so helpful and so willing to share their experience and expertise.
How rude of the nurse to giggle when giving you a diagnosis. It seems that most of the GI docs don't have answers to our questions but you will find the answers here from the people that have experienced what you are going through. The doctor is great for writing out scripts for medication.
Sometimes it is hard because we wonder why we can't eat 'normal' food like everyone else. Then I think of the masses of health problems that are around today and feel blessed that I am learning the best way to heal my body and keep it healthy even if that means avoiding 'normal' food that acts like a poison to me.
Happy Healing Susanne
‘I have decided to stick with love. Hate is too great a burden to bear.’ – Martin Luther King Jr
Thank you everybody.
I'm about half way through the book, and it is such a wealth of information. It must have taken an enormous amount of research to put it all together, so thank you Tex for making that available to us.
How long did it take for you guys to start feeling better after going on the restricted diet? I guess it's hard for me to rule food out or in yet because I can't even drink water without having D. But I guess the healing has just begun and as I've read so many times on here, it takes time.
I'm thinking that if I have pain/cramps along with the D, maybe that indicates a bad reaction to something I ate?
I'm about half way through the book, and it is such a wealth of information. It must have taken an enormous amount of research to put it all together, so thank you Tex for making that available to us.
How long did it take for you guys to start feeling better after going on the restricted diet? I guess it's hard for me to rule food out or in yet because I can't even drink water without having D. But I guess the healing has just begun and as I've read so many times on here, it takes time.
I'm thinking that if I have pain/cramps along with the D, maybe that indicates a bad reaction to something I ate?
Hi Susanne,
I am trying really hard to remember my first 90 days, they are a blur. So much grieving process during that time. I started feeling better once I removed the dairy, soy and egg from my diet, I had removed the gluten to but wouldn't know how it would feel because of it's 120 day half life to leave the body. But once I did the others and went really bland (turkey, white rice, coconut oil for cooking and coconut milk to drink and sea salt) I think within 2 weeks I was seeing something. I also was figuring out my Mag and VitD3 intake, didn't realize I would be taking as much as we all do with MC. I also had to minimize my stress and what I wanted to get done as to what needed to be done in my daily life.
So take it bit by bit and after a month or so then reflect on yourself....it is easier that way
I am trying really hard to remember my first 90 days, they are a blur. So much grieving process during that time. I started feeling better once I removed the dairy, soy and egg from my diet, I had removed the gluten to but wouldn't know how it would feel because of it's 120 day half life to leave the body. But once I did the others and went really bland (turkey, white rice, coconut oil for cooking and coconut milk to drink and sea salt) I think within 2 weeks I was seeing something. I also was figuring out my Mag and VitD3 intake, didn't realize I would be taking as much as we all do with MC. I also had to minimize my stress and what I wanted to get done as to what needed to be done in my daily life.
So take it bit by bit and after a month or so then reflect on yourself....it is easier that way
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Thank you Erica.
I am also eating a really bland diet of only a few ingredients, mostly meat and rice cooked in home made chicken broth. I was hoping to continue to eat eggs - that is the only thing I have allowed myself to have. Gluten, dairy and soy are gone.
But whatever it takes!
I also take D3 and have started Magnesium oil which has really helped with my leg cramps. I'm thinking about getting a blood test to have my levels checked.
I am also eating a really bland diet of only a few ingredients, mostly meat and rice cooked in home made chicken broth. I was hoping to continue to eat eggs - that is the only thing I have allowed myself to have. Gluten, dairy and soy are gone.
But whatever it takes!
I also take D3 and have started Magnesium oil which has really helped with my leg cramps. I'm thinking about getting a blood test to have my levels checked.
Susanne,
Last summer is kind of a blur to me now, but I do know that the D cleared up pretty quickly when I started the Budesonide and elimination diet. The side pains I was having, however, didn't go away as quickly. I think it was a couple of months before my left side felt normal again. I was very tired and fatigued, and had a real fear of leaving the house (even when the D resolved). My husband used to drag me out of the house on the weekends and make me go places with him. I know it took a full 3-4 months before I felt like I had some energy back.
I ate chicken, rice, and a banana. That was all that I ate. It was a couple of months before I attempted to add anything back in.
I still have a fear of travel. It's getting better. I've been a couple of times about 5 hours away to visit my family (I take all my food with me when I go). I've been to Las Vegas and did really well on that trip (took some food along with me but managed to find things I could eat most of the time). I just spent about 5 days in the mountains with a really good friend of mine (took my food then also). I'm heading to Mississippi in about a week to visit my in-laws and I'm having some anxiety, but not as bad as the very first time I traveled.
Be patient with yourself. I stayed home and missed out on lots of things for almost a full year to do some good healing, but it was so worth it! I feel so much better than I did. Give yourself time to figure out your safe foods and time for some good healing. Ask lots of questions. Someone on here will answer. There's a wealth of experience on this board.
Last summer is kind of a blur to me now, but I do know that the D cleared up pretty quickly when I started the Budesonide and elimination diet. The side pains I was having, however, didn't go away as quickly. I think it was a couple of months before my left side felt normal again. I was very tired and fatigued, and had a real fear of leaving the house (even when the D resolved). My husband used to drag me out of the house on the weekends and make me go places with him. I know it took a full 3-4 months before I felt like I had some energy back.
I ate chicken, rice, and a banana. That was all that I ate. It was a couple of months before I attempted to add anything back in.
I still have a fear of travel. It's getting better. I've been a couple of times about 5 hours away to visit my family (I take all my food with me when I go). I've been to Las Vegas and did really well on that trip (took some food along with me but managed to find things I could eat most of the time). I just spent about 5 days in the mountains with a really good friend of mine (took my food then also). I'm heading to Mississippi in about a week to visit my in-laws and I'm having some anxiety, but not as bad as the very first time I traveled.
Be patient with yourself. I stayed home and missed out on lots of things for almost a full year to do some good healing, but it was so worth it! I feel so much better than I did. Give yourself time to figure out your safe foods and time for some good healing. Ask lots of questions. Someone on here will answer. There's a wealth of experience on this board.
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Hi Susanne
I have not 'arrived' yet and am still in the process of finding out what to eat and not eat. I was diagnosed in December and am currently on Budesonide which is controlling symptoms. I don't think I will truly know my triggers until I am off the medication.
I used to have cramps but do not have any pain anymore. The cramps ceased when I stopped eating raw vegetables. I think it must have been too much fibre.
I was suffering from a growling stomach and it was driving me crazy. After giving up gluten and dairy completely the noises stopped after about a week.
All I take in the way of supplements are D3 and magnesium oil.
I have not 'arrived' yet and am still in the process of finding out what to eat and not eat. I was diagnosed in December and am currently on Budesonide which is controlling symptoms. I don't think I will truly know my triggers until I am off the medication.
I used to have cramps but do not have any pain anymore. The cramps ceased when I stopped eating raw vegetables. I think it must have been too much fibre.
I was suffering from a growling stomach and it was driving me crazy. After giving up gluten and dairy completely the noises stopped after about a week.
All I take in the way of supplements are D3 and magnesium oil.
‘I have decided to stick with love. Hate is too great a burden to bear.’ – Martin Luther King Jr
Hi Suzanne!
Every word you wrote resonated with me, another newbie, diagnosed about 4-5 months ago with LMC. My doctor said the same thing to me - don't they have any idea of the impact that makes on us? We are definitely in the right place here at this forum to turn that around! Wishing you much success with your healing, and looking forward to hearing about your progress!
For me, ruling things out (doctors, meds, foods, life choices) is just as important as ruling things in when making progress! I was given the wonderful advice here "baby steps", and that's so true! Any movement is progress, but that's not at all to say even the tiniest of steps is easy. That's one reason why having this support group is ESSENTIAL. All the best!!
~ Holly
Every word you wrote resonated with me, another newbie, diagnosed about 4-5 months ago with LMC. My doctor said the same thing to me - don't they have any idea of the impact that makes on us? We are definitely in the right place here at this forum to turn that around! Wishing you much success with your healing, and looking forward to hearing about your progress!
For me, ruling things out (doctors, meds, foods, life choices) is just as important as ruling things in when making progress! I was given the wonderful advice here "baby steps", and that's so true! Any movement is progress, but that's not at all to say even the tiniest of steps is easy. That's one reason why having this support group is ESSENTIAL. All the best!!
~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"