Hi All,
I was diagnosed with MC about 2 years ago. I can keep it mostly under control with diet. I'm currently in the midst of a flare up--Post Thanksgiving effects. I don't have the classic D symptoms; to the contrary, when I get a flare up it ususally involves constipation with a crampy/spasmy feeling in my left side and bloating. Anyone else here get that? I'll be visiting my doctor this week and I'm tempted to ask if MC is what I really have. Thoughts anyone?
Re: Microscopic Colitis and Constipation
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Kat,
Constipation is actually a fairly common symptom of MC, but few patients who have only C as a symptom are ever diagnosed with MC, because when someone goes to their doctor complaining of C, if the patient is referred to a GI specialist, a colonoscopy is almost never recommended, unless the patient has chronic D. They just don't believe in scoping a patient who has constipation. Without a colonoscopy it's impossible to diagnose MC, so those cases are rarely diagnosed.
Many of us here have alternating D and C (including me), and we have several members who have C only.
Since C-predominant MC is so rarely diagnosed, most doctors just assume that MC without D is impossible. IOW, it's a self-fulfilling prophesy.
The symptoms you describe can also be attributed to acute diverticulitis, but if you have diverticuli, they should have been noted on your colonoscopy report. The odds are, you are just having an MC flare.
However, unless your doctor is way ahead of the rest of the crowd, if you go to him or her complaining of C, I can almost guarantee that he or she will try to convince you that you have IBS (a fictitious term used to describe a disease that does not exist). IMO, "IBS" is doctorspeak for "I Be Stymied". Some members here believe that "IBS" stands for I BS (as in
).
Tex
Constipation is actually a fairly common symptom of MC, but few patients who have only C as a symptom are ever diagnosed with MC, because when someone goes to their doctor complaining of C, if the patient is referred to a GI specialist, a colonoscopy is almost never recommended, unless the patient has chronic D. They just don't believe in scoping a patient who has constipation. Without a colonoscopy it's impossible to diagnose MC, so those cases are rarely diagnosed.
Many of us here have alternating D and C (including me), and we have several members who have C only.
Since C-predominant MC is so rarely diagnosed, most doctors just assume that MC without D is impossible. IOW, it's a self-fulfilling prophesy.
The symptoms you describe can also be attributed to acute diverticulitis, but if you have diverticuli, they should have been noted on your colonoscopy report. The odds are, you are just having an MC flare.
However, unless your doctor is way ahead of the rest of the crowd, if you go to him or her complaining of C, I can almost guarantee that he or she will try to convince you that you have IBS (a fictitious term used to describe a disease that does not exist). IMO, "IBS" is doctorspeak for "I Be Stymied". Some members here believe that "IBS" stands for I BS (as in
).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 Tex,
Thanks for the great info. Wasn't sure if constipation was as common. When first diagnosed I actually was first told it was IBS, but then my doc did a colonoscopy + biopsy and diagnosed MC. I'll be seeing him again this week for the first time since he diagnosed me. My guess is he'll probably give me another course of budesonide/entocort, which I hate because of the immuno suppressant effect. I work with Elelmenatary kids, 600+ in any given week, so having a compromised immune system stinks! Hope I can get this under control soon. I've begun to have insomnia to boot, which I'm not sure is related. Anyone ever claim a link between insomnia and MC?
Thanks for the great info. Wasn't sure if constipation was as common. When first diagnosed I actually was first told it was IBS, but then my doc did a colonoscopy + biopsy and diagnosed MC. I'll be seeing him again this week for the first time since he diagnosed me. My guess is he'll probably give me another course of budesonide/entocort, which I hate because of the immuno suppressant effect. I work with Elelmenatary kids, 600+ in any given week, so having a compromised immune system stinks! Hope I can get this under control soon. I've begun to have insomnia to boot, which I'm not sure is related. Anyone ever claim a link between insomnia and MC?
I'm sorry you are suffering with this constipation. It wasn't until I came aboard this forum that I learned that C was a symptom of MC. Was shocked as all my internet searching said "chronic watery diarrhea". When I was having the WD, I was often wishing for the C to come along. But after reading one woman's post on here who has constipation all the time, I then realized how painful it could be.
Maybe Tex can add to what I say....but wouldn't Entocort just make you more constipated? I would worry about getting on that drug as it may cause more issues.
Hope you feel better soon.
Terri
Maybe Tex can add to what I say....but wouldn't Entocort just make you more constipated? I would worry about getting on that drug as it may cause more issues.
Hope you feel better soon.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
katstep,I've had insomnia for nearly 20 years. I can go to sleep but wake between 12:00 AND 3:O0 am and have a hard time going back to sleep.. I was diagnosed (2 years ago) with sleep apnea but I think it's much more than that. I am treating my thyroid and am getting better sleep but still working on it. (The CPAP really seems to help with my breathing (nose) issues, though,
specially in this low humidity area).
specially in this low humidity area).
Kat,
I have to agree with Terri about the effect of budesonide/Entocort EC. For most people who have C as a primary symptom, the Entocort typically causes even worse C. In fact, that's how many members here decide when it's time to decrease their Entocort dose. When they begin to notice signs of C, it's time to decrease their dosage.
That said, if your primary mode of reaction the last time you were taking Entocort was C, and the drug worked satisfactorily, then it may work OK again. We are all different in the way that we react to most medications, so almost anything is possible.
Back when I was reacting, the pain and bloating was so bad that there were many nights when I slept very little, or none at all. There were many days when I felt like a zombie, and I often had to stop and take a nap, because I just couldn't keep my eyes open any longer, especially if I was driving.
Tex
I have to agree with Terri about the effect of budesonide/Entocort EC. For most people who have C as a primary symptom, the Entocort typically causes even worse C. In fact, that's how many members here decide when it's time to decrease their Entocort dose. When they begin to notice signs of C, it's time to decrease their dosage.
That said, if your primary mode of reaction the last time you were taking Entocort was C, and the drug worked satisfactorily, then it may work OK again. We are all different in the way that we react to most medications, so almost anything is possible.
Back when I was reacting, the pain and bloating was so bad that there were many nights when I slept very little, or none at all. There were many days when I felt like a zombie, and I often had to stop and take a nap, because I just couldn't keep my eyes open any longer, especially if I was driving.
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.
Thanks to everybody for their words and suggestions. I saw my GI doctor today and we discussed options. One of them was Budesonide, but once I expressed my reluctance, he backed off. He asked me if I had tried using Pepto Bismol tabs, and I said no. I'm not sure why I haven't tried them before, but I'm gonna give them a shot. Took some today and already the GI cramping has minimized. Had some blood work done to test for celiac, etc. but I've been tested negative before. Also scheduling a colonoscopy (yuck), as I'll be 50 in 3 months. That should tell them more. Last time it was only a sigmoidoscopy. Insomnia is still sporadic, but I'm still pretty exhausted form accumulated sleep debt. Fortunately, as a teacher I will have two weeks off coming up, so I'm gonna use that time to try to "reset my sleep clock".
Thanks again for everyones support. I love this place and need to check in more often. It's such a great resource and assures me that I'm not alone.
Thanks again for everyones support. I love this place and need to check in more often. It's such a great resource and assures me that I'm not alone.
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mzh
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Deb, I've been having trouble sleeping the last 20 years too, waking up every 2 hours and not getting back to sleep after the 3 AM wake-up. I have sleep apnea too but the machine wasn't helping the insomnia.Deb wrote:katstep,I've had insomnia for nearly 20 years. I can go to sleep but wake between 12:00 AND 3:O0 am and have a hard time going back to sleep.. I was diagnosed (2 years ago) with sleep apnea but I think it's much more than that. I am treating my thyroid and am getting better sleep but still working on it. (The CPAP really seems to help with my breathing (nose) issues, though,
specially in this low humidity area).
I started taking a low dose of Lexapro and now most nights I sleep straight to 4 or 5 AM. I don't know why it helps the sleep, especially since one of the side effects is supposed to be insomnia. Last night I took a calcium magnesium before bed. Don't know if that helped but I didn't wake up until 6 AM today and dosed off again until 7:15. That was a blessed first! You might want to try the cal-mag; if that doesn't work, try L-theanine or melissa (lemon balm). If they don't work, an SSRI might.
FWIW, my diarrhea has finally gone away; now I feel constipated. I've been on one Entocort every other day since 11/1.
Also have sleep apnea
If you are feeling constipated, it sounds like it's time to get off the Entocort. I know it's a "safety net" and I remember the reluctance when I had to do it, but you'll feel better. Right before I went on a four day road trip with my husband, I felt anxious because we'd be eating out so much, so I took a pill ( that I hadn't had in months). WHAT A MISTAKE! I had pain and constipation for two days. When you don't need it any more, your body tells you so. Sounds like yours is talking.... and by the way, that's great news!
Leah
Leah
katstep,
As someone with LC that is also primarily C I agree that you may want to avoid Entocort unless your inflammation is significant. I am one of those people here that saw that when I started cramping it was time to decrease my dose.
As I made progress I continued to have cramping and very inconsistent bowel patterns even after I was completely off of Entocort. I'd go 5 days with no BM then have one day where my gut would go nuts and become very aggressive-- I'd have 8 BM's in a 2 hour period which left me feeling tired, nauseated, etc.
My GI is on top of things and we did 2 things about this remaining symptom. She started me on 10 mg of amitriptyline (which helps smooth gut motility and also helps with sleep) and she had me start a very slow regimen of fiber and stool softeners. I was already taking 2 ducosate sodium tablets per day. She had me start with 1/2 tsp of Citrucel every day for the first week, going up only 1/4 tsp each week until I got results. She said "this is well below the recommended dose but you need to find what works for you". And she was right-- on all counts. I only take 1 tsp of Citrucel per day and I've been able to stop the stool softeners when I keep my diet varied and eat either an apple or grapes, plus 1-2 vegetables today.
Granted, when I was flaring, fiber was not my friend but since then it's played an important role in my recovery and in getting my gut motility regulated.
Hope some of this info is helpful. Enjoy your Christmas break. I'm a school psych and am on break too.
Carol
As someone with LC that is also primarily C I agree that you may want to avoid Entocort unless your inflammation is significant. I am one of those people here that saw that when I started cramping it was time to decrease my dose.
As I made progress I continued to have cramping and very inconsistent bowel patterns even after I was completely off of Entocort. I'd go 5 days with no BM then have one day where my gut would go nuts and become very aggressive-- I'd have 8 BM's in a 2 hour period which left me feeling tired, nauseated, etc.
My GI is on top of things and we did 2 things about this remaining symptom. She started me on 10 mg of amitriptyline (which helps smooth gut motility and also helps with sleep) and she had me start a very slow regimen of fiber and stool softeners. I was already taking 2 ducosate sodium tablets per day. She had me start with 1/2 tsp of Citrucel every day for the first week, going up only 1/4 tsp each week until I got results. She said "this is well below the recommended dose but you need to find what works for you". And she was right-- on all counts. I only take 1 tsp of Citrucel per day and I've been able to stop the stool softeners when I keep my diet varied and eat either an apple or grapes, plus 1-2 vegetables today.
Granted, when I was flaring, fiber was not my friend but since then it's played an important role in my recovery and in getting my gut motility regulated.
Hope some of this info is helpful. Enjoy your Christmas break. I'm a school psych and am on break too.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou