I will try to make this LSS (long story short)...but as you know, getting to this forum usually means there's a big story...
diagnosis: LC --5 random biopsies throughout 5 different areas of colon all came back positive for LC.
getting to diagnosis: long drawn out procedure...finally made my first visit to GP in 1/2010 after being sick for over a year and at the hoilday season symptoms became unable to control at home, so I got myself to the doc...this test, that test, insurance approval lagtimes, lagtimes waiting for appointment and procedures with gastrospecialists...blah blah
other diagnosis: leukopenia, VitD deficiency(Supplements got this up to normal in 2 months), enlarged red blood cells (they keep asking me if I drink--which I don't), hypothyroid which is being treated and last test was in normal range
social: was primary caregiver to mother and significant other who both passed away about a year ago after difficult drawnout horrible illnesses. Also during that time, twin granddaughters were born prematurely--one 2 pounds, one 2.2 pounds and they were hospitalized for 4+months and are still just holding their own, but seem to be improving though they are about the size of 5-6 month olds.
treatment: finally in late April, diagnosis of LC came in and gastrodoc started me on megaPepto. The pepto gave me bad headaches and other problems, so after 5 days I called and told them I wasn't going to take the Pepto anymore. Started on Asacol. After three weeks switched to Lialda.
About 10-12 days ago I started to feel worse: bloating, the godawful rumbling could be heard down the block and not just in the driveway, chills, chills, aching all over, the little bit of fecal matter improvement from the Lialda and Asacol stopped and I realized I was having a 'relapse' or 'flare-up'.
Friday I started Entocort. This is day 4 of Entocort + Lialda. Not much change, maybe not quite so achy and a lessening of the chills, but both are still present along with the other symptoms.
I have read here it takes about 2 weeks before one can say where or not Entocort is going to help.
just to add: the gastrodoc originally thought I had giardia or some other parasite though my fecal test didn't show it. He said they are notorious for not finding everything and he was 70% I had some kind of bug. I took Flagyl for 10 days without any change. Doc said to take Imodium ( and I did the home remedies for dehydration and took magesium supplements). Then I had to wait four weeks to get the colonoscopy and another 2 for the followup and diagnosis. When I had the followup and got the diagnosis, the doc said if he had known I had the LC when I first came in considering how sick I was he would have put me in the hospital and treated me for dehydration and started intravenous steroids. I hope the Entocort kick in before it gets too bad again.
Morgan
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Hello Morgan welcome here. What a story, you can really call that a long story short. Must have been tough years, being a primary care taker of family members who have passed away and all your other health problems. And besides that quite a long road before you got your diagnoses and the tinkering with your medication.
Entocort is by far the best most effective medicine for MC and yes sometimes it can take a while before it works with some.
Other treatment options a lot of the members use here (including me) is diet (gluten, dairy and sometimes soy free). Just take a look around, there is tons of information to find here and feel free to ask any question you want.
Harma
Entocort is by far the best most effective medicine for MC and yes sometimes it can take a while before it works with some.
Other treatment options a lot of the members use here (including me) is diet (gluten, dairy and sometimes soy free). Just take a look around, there is tons of information to find here and feel free to ask any question you want.
Harma
Hi Morgan,
Welcome to our internet family. I'm sorry to hear that the past couple of years have been so rough. All that stress almost certainly worsened your LC symptoms. Not to second guess your GI doc, but you would probably be better off without the Lialda, (I assume that he is "prepping" you to do a quick withdrawal from the Entocort, and a transition to the Lialda as a maintenance drug). Most of us here have found that it takes much longer than the 6-week labeled treatment with Entocort, in order to achieve a stable remission from a treatment regimen based on Entocort. It brings remission fairly quickly, but when it is discontinued, most people tend to relapse, unless the Entocort treatment is continued for 6 months to a year, or more. It takes much longer for the gut to heal, than most doctors realize. The problem with taking one of the 5-ASA drugs, (Lialda, Asacol, etc.), concurrently with a corticosteroid, is that if a patient has an adverse reaction to the 5-ASA drug, the Entocort cannot overcome the reaction, so the benefits of the Entocort can be canceled by the 5-ASA drug, and the doctor and patient will both assume, (incorrectly), that the Entocort was ineffective. Besides, if the Entocort works correctly, the Lialda will provide absolutely no benefits to the patient, anyway. That said, if you don't have an adverse reaction to it, it shouldn't cause any problems - it's just a redundant drug treatment, in that situation.
Also, as Harma mentioned, most of us are sensitive to gluten and casein, (the primary protein in dairy products), and for many of us, the Entocort is not sufficient to allow the gut to heal, unless the diet is modified, also. (The genes which predispose us to those food intolerances are usually triggered when the LC or CC is triggered.) That means that as long as we continue to eat those foods, they continue to generate new inflammation, so the Entocort is only treating the symptoms, not the cause of the inflammation. Unfortunately, most GI docs still do not realize that MC can be controlled by diet, so they will insist that changing one's diet is a waste of time.
Maybe you will be one of the few who are lucky, and the Entocort will control your symptoms, without the necessity of modifying your diet. In that case however, you will almost certainly have to continue a maintenance drug treatment for the rest of your life, to control the MC symptoms, if you would rather not modify your diet.
Again, welcome aboard, and I hope you can get a fast response from the Entocort.
Tex (Wayne)
Welcome to our internet family. I'm sorry to hear that the past couple of years have been so rough. All that stress almost certainly worsened your LC symptoms. Not to second guess your GI doc, but you would probably be better off without the Lialda, (I assume that he is "prepping" you to do a quick withdrawal from the Entocort, and a transition to the Lialda as a maintenance drug). Most of us here have found that it takes much longer than the 6-week labeled treatment with Entocort, in order to achieve a stable remission from a treatment regimen based on Entocort. It brings remission fairly quickly, but when it is discontinued, most people tend to relapse, unless the Entocort treatment is continued for 6 months to a year, or more. It takes much longer for the gut to heal, than most doctors realize. The problem with taking one of the 5-ASA drugs, (Lialda, Asacol, etc.), concurrently with a corticosteroid, is that if a patient has an adverse reaction to the 5-ASA drug, the Entocort cannot overcome the reaction, so the benefits of the Entocort can be canceled by the 5-ASA drug, and the doctor and patient will both assume, (incorrectly), that the Entocort was ineffective. Besides, if the Entocort works correctly, the Lialda will provide absolutely no benefits to the patient, anyway. That said, if you don't have an adverse reaction to it, it shouldn't cause any problems - it's just a redundant drug treatment, in that situation.
Also, as Harma mentioned, most of us are sensitive to gluten and casein, (the primary protein in dairy products), and for many of us, the Entocort is not sufficient to allow the gut to heal, unless the diet is modified, also. (The genes which predispose us to those food intolerances are usually triggered when the LC or CC is triggered.) That means that as long as we continue to eat those foods, they continue to generate new inflammation, so the Entocort is only treating the symptoms, not the cause of the inflammation. Unfortunately, most GI docs still do not realize that MC can be controlled by diet, so they will insist that changing one's diet is a waste of time.
Maybe you will be one of the few who are lucky, and the Entocort will control your symptoms, without the necessity of modifying your diet. In that case however, you will almost certainly have to continue a maintenance drug treatment for the rest of your life, to control the MC symptoms, if you would rather not modify your diet.
Again, welcome aboard, and I hope you can get a fast response from the Entocort.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Morgan, I'm glad you found us.Magnesium pills can give you D. I use it in spray form thanks to the PP. Do a PP search (NOT Google) and you can see the information about it.
I am using diet alone to control my LC. Gluten, dairy, and soy free for almost 2 years!
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Dear Morgan,
Welcome from Oregon. It certainly sounds like you've had the classic toxic mix of stress that would trigger a flare. I've had success in treating my LC/CC with L-Glutamine and probiotics.
Connie
Welcome from Oregon. It certainly sounds like you've had the classic toxic mix of stress that would trigger a flare. I've had success in treating my LC/CC with L-Glutamine and probiotics.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Hello Morgan. Welcome from Canada. You've already had lots of good advice from the wonderful people here, so I'll just add that diet can really make a difference in this condition. For myself- I started with the Specific Carbohydrate Diet ( you can read about it online)- and now I'm on a gluten free diet. Very recommended!
You'll find some very smart, knowledgeable, caring people here. They really help. Best of all- this is where you can discuss those details and concerns you would be too uncomfortable to talk about
with anyone else- they've heard it all here and won't turn a hair! And what a relief that is ! 
You'll find some very smart, knowledgeable, caring people here. They really help. Best of all- this is where you can discuss those details and concerns you would be too uncomfortable to talk about
with anyone else- they've heard it all here and won't turn a hair! And what a relief that is !