MC will definitely teach you patience and tenacity!!
everyone has had to make HUGE changes/adjustments...
here is a link to the discussion... http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173
Attn newbies or anyone struggling....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Thank you Gabes for your prompt response. I found the thread of conversation that you mentioned and am reading the third of many pages. Very helpful to better understand this through the experience of others.
It's late here now and I will pick this up again tomorrow. Have a good weekend!
It's late here now and I will pick this up again tomorrow. Have a good weekend!
64 years old. Diagnosed with MC in November. Mesalamine taken but pleuricy developed 2 weeks later; they are linked. No meds being taken. Full panel from Enterolab.
Great post Gabes,
I am a newbie, not diagnosed yet, but am in leaning towards self diagnosis of MC. Your post gives me hope....I am still scared, but am beginning to learn the do's and don'ts..
I am learning alot just reading, and talking with you all, so i am very greatful!
I am a newbie, not diagnosed yet, but am in leaning towards self diagnosis of MC. Your post gives me hope....I am still scared, but am beginning to learn the do's and don'ts..
I am learning alot just reading, and talking with you all, so i am very greatful!
I'm Still Chasing The Original High
So new to this. Have questions about meds.
My name is Carol. I am so thrilled and relieved to find this group. I am 66 and was enjoying retirement until I started having symptoms in July. A friend got me in to see a GI doctor after three weeks of the constant trips to the bathroom no matter what I ate or medications I took.
He did an EGD and colonoscopy the first week in August. Confirmed MCC and put me on Entocort. 9 mg. daily.
When I went for my follow up visit he also informed me that I have h. pylori and diverticulosis. I do not have an active ulcer yet.
Doctor told me the MCC is probably from years and years of nsaids for arthritis in every joint in my body.
The treatment for h. pylori is brutal and my pharmacist (who I trust knows more about drug interactions) said that the recommended antibiotics would increase the strength of the Entocort and that I probably should be on a lower dosage before I begin this treatment which last two weeks. There are two treatment options: massive doses of Doxycyline and Flagyl cocktail OR massive doses of Amoxicillin and Biaxin cocktail. PPI is taken with both treatments.
I have only been on 9 mg Entocort for 4 weeks today. I don't feel like I am at the point that I can begin to wean down.
Doc also said to eat a high fiber diet because of diverticulosis! With MCC I have read that the high fiber only aggravates the condition.
Since I cannot take Aleve at all, is Ecotrin(enteric coated aspirin) safe to take? I have to have something for the joint pain. Tramadol doesn't help.
I am so confused and really don't know what to do about the h pylori treatment. I am going to NYC next month for the first time and don't want to start this brutal treatment and end up with cdiff or worse.
I just got the book by Wayne Persky and plan to start reading asap.
I just needed to vent and appreciate any comments.
This board has been a wealth of information and I'm so happy I found it.
He did an EGD and colonoscopy the first week in August. Confirmed MCC and put me on Entocort. 9 mg. daily.
When I went for my follow up visit he also informed me that I have h. pylori and diverticulosis. I do not have an active ulcer yet.
Doctor told me the MCC is probably from years and years of nsaids for arthritis in every joint in my body.
The treatment for h. pylori is brutal and my pharmacist (who I trust knows more about drug interactions) said that the recommended antibiotics would increase the strength of the Entocort and that I probably should be on a lower dosage before I begin this treatment which last two weeks. There are two treatment options: massive doses of Doxycyline and Flagyl cocktail OR massive doses of Amoxicillin and Biaxin cocktail. PPI is taken with both treatments.
I have only been on 9 mg Entocort for 4 weeks today. I don't feel like I am at the point that I can begin to wean down.
Doc also said to eat a high fiber diet because of diverticulosis! With MCC I have read that the high fiber only aggravates the condition.
Since I cannot take Aleve at all, is Ecotrin(enteric coated aspirin) safe to take? I have to have something for the joint pain. Tramadol doesn't help.
I am so confused and really don't know what to do about the h pylori treatment. I am going to NYC next month for the first time and don't want to start this brutal treatment and end up with cdiff or worse.
I just got the book by Wayne Persky and plan to start reading asap.
I just needed to vent and appreciate any comments.
This board has been a wealth of information and I'm so happy I found it.
Hi Carol,
Welcome to our Internet family. I'm sorry to hear that you're faced with that treatment regimen for H. pylori. That definitely places you between a rock and a hard place, regarding your recovery from MC. You're right — that treatment program will be brutal for your MC, because not only are the antibiotics a problem, but PPIs are a known trigger for MC in many cases, similar to NSAIDs. Hopefully after having to deal with that for 2 weeks, the H. pylori infection will be under control, and you can then concentrate on getting the MC under control. And you are correct — pharmacists are typically much more alert to drug interactions than many physicians, because drugs are their specialty. So it might be a good idea to drop the Entocort dose during the antibiotic treatment, especially if you are a small person. That said, I have seen early drug trials from the manufacturer of Entocort, where twice the labeled dose was used, without any significant adverse effects. IOW, if your weight/size is normal or above, you might not have any problems with the regular dose while taking the antibiotics.
The inflammation that is associated with diverticulitis is the same type of inflammation that causes MC (lymphocytic infiltration into the cells of the mucosa and the lamina propria), so treating the MC will also treat the diverticulitis. You are correct that fiber is definitely contraindicated for MC, so fiber will need to be minimized in your diet.
The good news on the horizon is that most of us have found that after we make the right diet changes (especially cutting out gluten), and our intestines have had time to heal, our arthritis also tends to fade away or at least diminish significantly. 15 years ago I had arthritis so severe that I had to use a cane just to get around (and I still couldn't get around very well). But my diet changes allowed the arthritis to fade way, and today arthritis is only a bitter memory, and my joints are fine.
Enteric coated aspirin only gets it past the stomach without being activated, so that probably wouldn't help to prevent MC issues. Acetaminophen is safe for MC, but of course it's not very effective for many people. Some members here have had reasonably good success with topically-applied analgesics, including NSAIDs applied to the skin at the site of joint inflammation.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. I'm sorry to hear that you're faced with that treatment regimen for H. pylori. That definitely places you between a rock and a hard place, regarding your recovery from MC. You're right — that treatment program will be brutal for your MC, because not only are the antibiotics a problem, but PPIs are a known trigger for MC in many cases, similar to NSAIDs. Hopefully after having to deal with that for 2 weeks, the H. pylori infection will be under control, and you can then concentrate on getting the MC under control. And you are correct — pharmacists are typically much more alert to drug interactions than many physicians, because drugs are their specialty. So it might be a good idea to drop the Entocort dose during the antibiotic treatment, especially if you are a small person. That said, I have seen early drug trials from the manufacturer of Entocort, where twice the labeled dose was used, without any significant adverse effects. IOW, if your weight/size is normal or above, you might not have any problems with the regular dose while taking the antibiotics.
The inflammation that is associated with diverticulitis is the same type of inflammation that causes MC (lymphocytic infiltration into the cells of the mucosa and the lamina propria), so treating the MC will also treat the diverticulitis. You are correct that fiber is definitely contraindicated for MC, so fiber will need to be minimized in your diet.
The good news on the horizon is that most of us have found that after we make the right diet changes (especially cutting out gluten), and our intestines have had time to heal, our arthritis also tends to fade away or at least diminish significantly. 15 years ago I had arthritis so severe that I had to use a cane just to get around (and I still couldn't get around very well). But my diet changes allowed the arthritis to fade way, and today arthritis is only a bitter memory, and my joints are fine.
Enteric coated aspirin only gets it past the stomach without being activated, so that probably wouldn't help to prevent MC issues. Acetaminophen is safe for MC, but of course it's not very effective for many people. Some members here have had reasonably good success with topically-applied analgesics, including NSAIDs applied to the skin at the site of joint inflammation.
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
Welcome to this amazing forum. I cannot advise you, strongly, enough, to listen to the words/experience of people here. 6 weeks ago I couldn't have imagined I would have been in this place. After 6 months of chronic D - up to 30 times a day and losing 28 lbs I felt so weak that I was beginning to get really scared. Wayne and co assured me that if I followed the diet then I could heal myself....and their words gave me hope....in a way no one else did during the peak of my despair. So I cut out all gluten....then all dairy....then all soya.....and all fructose.....and I am doing well. I have put back 14lbs already and look human again and having normal (ish) bowel movements for the first time in years and years. I cannot imagine where I would be now if I hadn't have had this forum. I know I am one of the lucky ones and it isn't as straight forward for everyone....yet I just know I wouldn't be where I am now without the advice I have found here. Good luck. Judex
Never heard of Microscopic Colitis until yesterday when consultant advised me that my chronic, 3 month long, diarrhea indicated this diagnosis (though not confirmed). Shocked, stunned and reeling a bit, although part of me is pleased to be alive.
Hi I am new here and not sure if I am doing this right. This is the first time I have ever posted anywhere. I am 42 years old. My symptoms started three weeks ago and due to a family history of colon cancer I insisted on getting a colonoscopy immediately. The results came back LC. The D seems to have calmed down a lot from what it was when this first started three weeks ago. I still go everyday. I run a low grade fever some days. My anxiety is in over drive. I am tired a lot of the time. I am thirsty and hungry as heck. I have not had any significant weight loss. I am so worried about all of this and wondered if anyone else has had these symptoms. Thank you.
Hi J. L.,
Welcome to the discussion board. Yes, those symptoms, and many others, are common with LC. Anxiety, depression, and dehydration are very common. The disease causes malabsorption problems, because of all the inflammation in our intestines, and until we can get the inflammation under control, we have problems absorbing the nutrients in our food. Some of us lose weight, and others do not. Everyone has their own set of symptoms.
The symptoms slowly fade away, as we manage to stop the inflammation from being generated.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. Yes, those symptoms, and many others, are common with LC. Anxiety, depression, and dehydration are very common. The disease causes malabsorption problems, because of all the inflammation in our intestines, and until we can get the inflammation under control, we have problems absorbing the nutrients in our food. Some of us lose weight, and others do not. Everyone has their own set of symptoms.
The symptoms slowly fade away, as we manage to stop the inflammation from being generated.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
J.L.
welcome
it can seem scary at first, but if you take a few breaths, read some of the posts here you will see
a) you are not alone
b) you can minimise symptoms and get your life back (including the anxiety etc)
Erica joined us in March, and her journey from about May this year is in this post. it is a fantastic post for new people as alot of common questions are answered, alot of the things that can cause the anxiety are discussed, and there is lots of advice on how to adjust to life with MC.
Grab a cuppa and have a read.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173
reading the posts in the success stories area is also another great way to see the 'how' and 'How Long' it took for others to get their MC Management plan sorted
hope this helps
welcome
it can seem scary at first, but if you take a few breaths, read some of the posts here you will see
a) you are not alone
b) you can minimise symptoms and get your life back (including the anxiety etc)
Erica joined us in March, and her journey from about May this year is in this post. it is a fantastic post for new people as alot of common questions are answered, alot of the things that can cause the anxiety are discussed, and there is lots of advice on how to adjust to life with MC.
Grab a cuppa and have a read.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173
reading the posts in the success stories area is also another great way to see the 'how' and 'How Long' it took for others to get their MC Management plan sorted
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Newbie Post
I just want to let you all know how wonderful this Microscopic Colitis Support information is to me. I have been diagnosed with MC and given a prescription of Budesonide EC 3 MG and told to take three capsules by mouth every day. However, I cannot tolerate taking three capsules as this makes me feel very sick and nausiated. I am really pleased to see all the helpful advice and remedies posted on this site and will definitely try following some of them to see how my MC responds and hopefully I will progress to healing.
Carol AA
Carol AA
Hi Carol,
Welcome to our Internet family. We have a number of other members who are unable to tolerate budesonide. I hope that the treatment plan you develop will be successful.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. We have a number of other members who are unable to tolerate budesonide. I hope that the treatment plan you develop will be successful.
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.
A Newbie working out many MC issues
Thanks for a great post. This is so enlightening and helpful. I appreciate the time you took to post all of this information and it certainly will help me to figure out my issues and work them out.
CarolAA
CarolAA
Got my CC diagnosis today
The newbie info is very helpful! I've already eliminated caffeine and alcohol and have reduced fat intake. Will move to gluten & dairy free to see what happens.
I've probably had CC for a while. I'm actually relieved to have a diagnosis. It also helps to understand joint/muscle pain I've been having.
Glad to be here.
I've probably had CC for a while. I'm actually relieved to have a diagnosis. It also helps to understand joint/muscle pain I've been having.
Glad to be here.
Kathryn
