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I was diagnosed in June and started on Entocort at that time with no change in symptoms. I am now continuing on Entocort and have added Asocort and Lomotil. The number of diarrhea stools has decreased a little (from 10-12/day to 6-8/day). Episodes of fecal urgency and incontinence have decreased. Recently I had an episode of incontinence following passage of rectal gas.
All in all, I'm miserable. My doctor says if no improvement soon, she will do another colonoscopy and in addition, look for other diagnosis. Parasites and gluten intolerance have been ruled out already. Add to the story, I was mis-diagnosed by a GI Doc a year ago. In a hurry, he only did one biopsy and it was negative.
Leaving the house is always scary and I have a cruise booked the first week of December. I haven't cancelled it yet because I did show SOME improvement when I started Asacol.
I asked my doc what if no improvement in a reasonable period of time (whatever that is) and she says steroids to which I replied emphatically, NO. I am more than willing to have an ostomy done. I realize it's drastic but living like this is pure hell. BTW, I'm an Ostomy Nurse so it doesn't phase me at all.
If your still reading this epistle, any words of encouragement or bad news too are greatly appreciated.
Welcome to the board. Very, very few GI docs actually know how to treat MC. The reason why the meds you are taking have not brought remission is because you are almost certainly sensitive to gluten, and probably casein and soy, and the Entocort is unable to overcome the inflammation that the autoimmune reactions to those foods generate. The classic celiac blood tests are worthless for trying to detect the type of gluten-sensitivity that we have with MC, even though we are just as sensitive to gluten as most celiacs.
The fact that your doctor is ready to do a second colonoscopy so soon after you were just diagnosed, is clear evidence that she's lost, and she knows virtually nothing about treating severe cases. If you're already taking Entocort, Asacol is not going to add any benefits, and there is a good chance that it can undo the good that the Entocort provides, because many of us react adversely to Asacol. GI docs who prescribe both together are usually novices at treating MC.
FWIW, I have an ileostomy, and I still have to limit my diet, so it's not a guaranteed solution, and if MC is the only reason for trying the procedure, IMO, that's very poor logic. Trust me, there are better ways to get your life back.
Your symptoms are typical of what most of us have had to deal with, but I assure you that you can get your life back, if you're willing to make the necessary diet changes. Again, welcome aboard, and please feel free to ask anything.
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.
Mary Ann,
Please don't try anything drastic until you hear some feedback from the people here. Some of the people have spent many years before discovering
that food intolerances are a factor and many of us have obtained remission with diet and/or some specific drugs. I see you have ruled out gluten but most of us have found that it's a major factor in this disease. I understand the discouragement you're feeling but it can get better. Deb
I agree with what the others have said: please don't do any drastic medical procedures until you have given a gluten-free diet a chance. (And perhaps dairy and soy-free also.) You could do the Enterolab testing to see if you do have food intolerances. Those are more sensitive than the blood test for celiac disease. I found that eating without gluten, dairy, and soy has made all the difference in the world.
Welcome - sorry you had to find your way here, but I hope you have the same experience I did, that finding this forum was the turning point from what looked like a dark road toward hope and recovery.
It does get better (and yes, it's true that many of us have tested "ok" for gluten but found that not to be the case). I look forward to hearing your progress and encourage you to read threads in past discussions that seem relevant, and ask whatever you need to in order to wrestle your MC into submission.
Welcome, Mary Ann! We can all relate to your experience. Some of us have to wear adult diapers. Others carry a change of clothes and other supplies for an emergency. Some have ended up in the hospital during a flare. I suspect that most of us have experienced a humiliating episode of diarrhea or fecal incontinence, sometimes in public (like me). Few of us, especially in the beginning, pass gas when we are not sitting on the toilet. We don't trust it. You may identify with the motto of the forum which is "happiness is a dry fart."
I had the celiac bloodwork done right after my colonoscopy and it showed no celiac disease. I was asymptomatic to gluten and every other food, except a slight allergic reaction to nightshades like tomato and potato. But after finding the Enterolab site, I decided to try gluten-free for a few weeks to see what happened. During that time I found this site. About three weeks after going gluten-free I accidentally ingested some gluten, and all hell broke loose in my gut. That made me a believer. About four months later, the same thing happened with soy. Most recently, the same thing happened with dairy. Each time I was asymptomatic and would never have believed that I was intolerant to a certain food without experiencing the consequences.
I highly encourage you read the newbie stuff and other stuff that interests you on the forum. It's a little like trying to drink from a fire hose, but you will receive an amazing education very quickly. Please don't do anything drastic. You can and will get your life back. Many already have, and those of us on the road to healing know that we will, too, as we are already starting to experience it. It might encourage you to read the member success stories on the forum.
Welcome again! I look forward to hearing more from you.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Everything I know about MC, I learned here. Your doctor may not know everything about this condition, but everyone on the forum has personal experience with it, and we all are happy to share! You CAN get better, and you now have a support group to help you! There are also several here who can answer just about any question you have, so don't be afraid to ask!
Second, I live right down the road in Gainesville.
Third, if you want to get a second opinion I have three suggestions. I've been treated by a GI doc at North Florida Regional hospital in Gainesville (2 visits and colonoscopy.) I would not recommend the Doc that has been treating me. However, my girlfriend works with all of the GI docs at Shands at the University of Florida. I've had a second opinion appointment on the books with Sarah Glover, GI doc at Shands. Phone number is 352-265-0139. Please note that I have not met with Dr Glover but she comes highly recommended by my girlfriend who works with all of the GI docs at Shands. I've had no problem getting in with Dr Glover. i.e. called and got an appointment in two weeks etc. I've been getting better so I keep pushing back my 2nd opinion appointment with Dr Glover and just last week called Shands to push back appointment till April.
Fourth...There are over 187 GI docs within 7.8 miles of my house in Gainesville according to my United Healthcare website and I think about 80% of them are board certified. You may be able to get another referral of someone good you can see in the Gainesville area as a 2nd opinion from one of your coworkers or family physician.
One thing I've learned over the past year is that there seems to be a shortage of patients in Gainesville and too many doctors. I've generally been able to schedule an appointment within 10 days of a phone call.
Fifth....although it would be a 4 hour drive for you you might want to consider GI docs at Mayo clinic in Jacksonville. My same girlfriend's husband has been pressing me to go there for my 2nd opinion. The family has son with ulcerative colitis, son had hospitalizations at North Florida and worked w/ GI docs there, hopitilizations at Shands and worked with GI docs there, then the family finally moved onto the Mayo Clinic in Minnesota and local care at Mayo Clinic in Jacksonville. The husband highly recommends the Mayo clinic in Jacksonville (over and above the docs at North Florida or Shands). The son had the 3 part surgery at Mayo Clinic in Minnesota over a 2 year period to "put him back together again."
Your potential cruise sounds fun! I hope you can make it. I know it is a tough decision. I was traveling from FL to CA to work during my tough times and travel can be rough.
If you ever want to meet for iced tea in Ocala I'd be glad to meet you sometime on a Saturday or Sunday.
And when you get better I have an awesome farmers market I've been going to for organic produce, wild caught fish (low on the mercury scale) and meat from cows that ate grass in Ocala.
It wasn't miraculous for me but it HEADED ME TOWARD HEALING. The calcium kind of "bulked" up the diarreah so it at least gave me 5 minutes to "make it to a bathroom. Suggest 4 week trial if you try. I used both the caltrate 600 plus D, both pink and purple bottles. One does not have magnesium. Read details at length at above link and please advise if link doesn't work.
The other thing I found helpful was trying to hit a yoga class once a day. The best yoga classes for us are the once that our heavy into relaxation/meditation.
Skip the yoga classes that are into hard poses.
Welcome MaryAnn,
The best way to increase your chances of being cruise-ready in December is cutting out gluten and dairy right now. I had immediate results when I cut out both together. Within days I had no more bloating, no more stomach gurgles, and drastically reduced D (from 6-8 to 2-3/day). For others results are not that immediate, but you should notice a difference. I also supplemented with Pepto Bismol tablets, 2-3 doses a day, which I still take on occasion for mini-flare-ups (when I get accidental gluten or dairy). I hear many cruise lines do very well accomodating food intolerances, so you should be able to eat on the boat, but you may need to tell them in advance. Just pack GF bars and snacks just in case.
I feel a whole lot better after reading these posts. I went food shopping today, gluten free. Question: does it take days, weeks or months to work? I'm also resigned to the fact that it may take a lot longer to resolve than I thought. For this of you who have gone gluten free: have you had re-occurances? I'm really banking on the gluten free!
One more thing: I'm on an anti-depressant and have been contimplating asking for a higher dose. I'll wait a while before I ask though.
It usually takes months to work, (though you may see some improvement much sooner), that's why many people use Entocort, so that they don't have to deal with the symptoms while the diet changes are healing their intestines.
Mary Ann wrote:For this of you who have gone gluten free: have you had re-occurances?
Only if/when we slip up and eat something that we're sensitive to. Some of us are extremely sensitive to stress, and a few members have had re-occurrences due to very stressful events in their life.
SSRIs, (and in some cases, SNRIs), have been known to cause MC for some individuals, but the percentages are relatively low, so hopefully, that won't be a problem in your case.
I wish you the best of luck with the diet,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I did notice improvement within days of going GF/DF. I will tell you that when I tried to add dairy back in, it was disastrous. I would swear off both for the near future to give yourself the best chance of getting it under control before your trip.
What anti-depressant are you taking? Did you have any symptoms before you started on it? As Tex mentioned, some people react to SSRI's--I was one of them. There are some out there that don't carry as much of a risk of GI problems.
I'm going on a cruise in December, too! Here's hoping both of us are ridiculously healthy by then!
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You have found the best place in the world for info and support. Please start by reading the info for newbies. 
We can all relate to your experience. Some of us have to wear adult diapers. Others carry a change of clothes and other supplies for an emergency. Some have ended up in the hospital during a flare. I suspect that most of us have experienced a humiliating episode of diarrhea or fecal incontinence, sometimes in public (like me). Few of us, especially in the beginning, pass gas when we are not sitting on the toilet. We don't trust it. You may identify with the motto of the forum which is "happiness is a dry fart."
