Weird (?) microscopic colitis symptoms

[lpvoid]

Hello Everybody,
My name is Mirek, I'm 32 years old male living in Poland.
Since end of 2013 I experience wide variety of gastrointestinal problems, namely diarrhea, cramping, nausea. I've underwent colonoscopy in march 2014 and everything looked all right by naked eye, but histology revealed that there is chronic inflamation in ascending colon samples. It was labeled as "microscopic colitis" and this is my current diagnosis.
Prescribed treatment (Budenisode) didn't improve my symptoms very much, so I ordered more tests, including ASCA antibodies (came back as positive in IgA, IgG) calprotectin (40ug/g) MRI enterography (few enlarged mesenteric lymph nodes but no signs of inflamation in small bowel). My CRP was normal on few tests.
Usually I have 1-3 loose bowel movements daily and almost constant pain, usually in RLQ but not only, sometimes there is nausea, and really crazy gurgling sounds. I can't remember any symptom free day since it all started which is really exhausting Beside Budenisode I've tried Mesalasize,LDN and VSL3 but to no avail. Because I'm ASCA positive, and my sympthoms didn't improve despite treatment, I'm afraid that it might be in fact Crohns.
Are constant pain and nausea "normal" in MC?
Best Regards
Mirek

[Leah]

Welcome Mirek. All of us with MC vary when it comes to our symptoms. There is a way to test for Crohns, so you should be tested if you think you have it. On the other hand, drugs will only mask your symptoms at best. I took Budesonide for 6 months ( lowering the dose as time went on). It did help me, but diet is what heals us. Most of us develop food intolerances when our MC is triggered. The top four offenders are Gluten, dairy, soy, and eggs. The only one of these food groups I can eat is eggs. It's been 3 years since I was Dx, but I am pretty much in remission now. The key is diet. Also, when we have inflammation, any form of fiber can keep symptoms going. While you are healing, you shouldn't be eating raw fruits or veggies, salads, beans, legumes…etc. Also acid foods like tomato, citrus, and coffee can irritate an inflamed gut. Most doctors don't understand the connection between MC and food, so you will have to do this probably without their help. A strict elimination diet is one way to do it. There is a lab in the US that tests for overproduction of antibodies to certain foods. It's called Enterolab. Google them. Buying Tex's book may help you. Just click on the picture of it on this page to order. Some of us have issues with histamines and taking OTC antihistamines help with that.

It's a complicated disease, but with patience and diligence, you can heal your gut ( I have been able to add many "irritants" back in successfully).
Good luck. Read lots of info on this site and ask anything. we are all here to help each other
leah

[tex]

Hi Mirek,

Welcome to our discussion board. The reason why medications do not stop your symptoms is because as Leah pointed out in her post, the genes that are triggered to cause this disease, also cause food sensitivities, and the food sensitivities in our diet are the cause of our continued inflammation and symptoms.

We have to change our diet to avoid the foods that cause us to react, in order to control the disease. Most doctors do not understand the connection between certain foods and microscopic colitis, so we have to follow our own treatment plan

Your calprotectin test result rules out Crohn's disease. Patients who have Crohn's disease have a much higher calprotectin score. Your symptoms, including the loud gurgling sounds are very typical of microscopic colitis. We all have those symptoms until we change our diet in order to allow our gut to heal.

Again, welcome aboard, and please feel free to ask anything.

Tex

[UkuleleLady]

Hi Mirek, pain is very normal with MC. I was in constant pain which only recently started to abate after a 1 1/2 years. I am more "normal" now, but still have episodes. It takes time to heal from this. I would not have healed without changing my diet. Entocort alone was not enough for me, and I took it for 6 months. It helped, but it wouldn't have been enough. Some of us can't take it (I'm lucky I can) due to symptoms, so those people only have the diet changes to make.

And absolutely many of us have nausea, acid reflux, etc. Prior to MC I had reflux for over a decade. My new diet cured my reflux when medicine could NOT.

I urge you to go completely gluten and dairy free. These are the top 2 offenders. It can take a few months to see a change. Other changes can be made over time.

Best wishes, sincerely,
Nancy

[brandy]

Hi Mirek,

Welcome!

I had the loud gurgling for about 18 months after I went gluten free and dairy free until I went into remission. Have you gone gluten free and dairy free? (including yogurt free)?
It really works but can take several months for results. (A one or two week test of gluten free and dairy free is not long enough typically--give it several months.) Beer has gluten---if you drink beer switch to Gluten free beer or white wine.

I also found it helpful to eliminate over the counter supplements early on. (The only exception might be to add D3 supplement as it helps with inflammatory bowel disease if you don't get much sun in Poland.) I can't remember the latitude there.

Tex's book at upper right hand corner is helpful and written in fairly easy to under stand English.

Are you taking any other prescription drugs? If so generally Tex can give feedback. Some prescription drugs prevent us from going into remission.


Brandy

[lpvoid]

Thank you all for very kind welcome.
Currently I'm taking Amitryptyline (5mg daily), Mesalazine (3g) and LDN (4.5mg).
I'm on this drugs for about 5 weeks and dont' feel any improvement.
If I forget my Amitriptyline dose, on the next day my bowels work with turbo speed
and there is a lot of discomfort, gurgling and diarrhoea. So it is doing great job in
masking sympthoms, but it is scary how bad it feels when I try to taper it off.
I'm wondering if there is a point in taking mesalazine longer, if it didn't help
at all after 5 weeks. Could you give any input regarding this?
I went gluten free just week ago, so it is too soon to tell if it helps
BR
Mirek

[tex]

I'm wondering if there is a point in taking mesalazine longer, if it didn't help
at all after 5 weeks. Could you give any input regarding this?

Are you sensitive to NSAIDs? Many of us are. Because of that, some of us react to mesalazine. Maybe it is the cause of your turbo-diarrhea when you miss a dose of amitriptyline. In general, anyone who has an IBD, and who reacts to NSAIDs is very likely to also react to mesalamine, because mesalamine is based on a derivative of salicylic acid, similar to NSAIDs.

Although mesalamine inhibits both lipoxygenase and cyclooxygenase in vitro (and should decrease the production of both leukotrienes and prostaglandins), clinical manifestations and results of fecal eicosanoid analysis in our patient suggest that this drug may stimulate leukotriene synthesis as do analgesic NSAIDs and, in turn, lead to diarrhea or intestinal inflammation (or both) in patients with inflammatory bowel disease.

Diarrhea Associated with Mesalamine in a Patient with Chronic Nongranulomatous Enterocolitis

Tex

[Hopeful]

Tex, this is very interesting. The one time, in the last 2 years, when I was able to achieve remission, I had reduced Entecort to 3mg./day and Lialda to 1 pill (1.2g). My GI doc yelled at me and told me to go back to 2 Lialda, maintenance dose, and taper off the Entecort. Didn't work - surprise.

I am currently still taking 2 Lialda and 1-2 Entecort and doing a strict elimination diet. Mixed results. Down to one or two very loose poops/day. Do you think that I should try getting rid of the Lialda? My goal is to identify my food sensitivities, be strict on the diet, and get off all meds, if possible.

What do you think??

[tex]

That's a tough call, because there's always a chance that your diet is somehow being cross-contaminated, or you just haven't had enough healing time after making the diet changes.

That said, I've never been in favor of taking 2 anti-inflammatory medications at the same time, because when you compare the statistical odds, they're stacked against a favorable outcome. If 1 anti-inflammatory med works, then you don't need the other one. Doctors in general are not very good at mathematics. They apparently believe that by taking 2 similar meds at the same time, it doubles the chances of success. It's been a long time since I studied probability and statistics, but if I recall correctly, taking 2 meds concurrently in a situation such as this can have the opposite effect — it can cut the chances of success in half. The problem with taking 2 similar meds concurrently is that if 1 of them causes you to react, then it will veto any benefits that you might have otherwise derived from the other one. And of course, you have no way of knowing which one might be the problem.

But this is just my opinion. A lot of doctors seem to feel that the more meds we take, the better. I tend to agree with you — less is better, and none at all is best.

Tex

[lpvoid]

Tex, this might be the case, I remember that I had diarrhea episode when I was taking diclofenac.
On the other hand I was doing fine on Pepto... Anyway I've decided to stop mesalazine as it certainly
does not help me.

[megamoxie]

Some of these medicines can have other ingredients that are irritants, too, right? The mesalamine I was given had significant amounts of Aspartame (NutraSweet) in it, and came in the form of large capsules (which I find hard to take and process). I also don't do well with ANY artificial sweeteners... I quite agree that when it comes to medication, less/fewer is better and none is best.