IBS

[Julie]

Hi everybody;

I have LC but that is at the moment all over. I don't have to take any medecine for this problem.

But... I still have these flares. Apparently I have IBS (Irritable Bowel Syndrome). I don't really know what I can do to improve. So I'm taking a chance here.

I take duspatalin for cramps and colofiber to stop diarhea and constipation. That definitly helps me but the pain is still present. The naussea is still horrible sometimes. I don't know if I'm at the right place here, but does anyone have IBS? And what do you do to control it? Is IBS a disease like LC?

Greetz

Julie

[Deb]

Hi Julie and welcome. I am not familiar with the things you're taking but I'm sure someone will help you here. Many of us here don't believe that IBS is really a condition. It's probably something else that hasn't been diagnosed yet or most likely your LC. Many of us with microscopic colitis (which includes LC and CC) have pain and nausea. MC is diagnosed under a microscope with a colonoscopy, hence the name. It looks like you've already figured out a dairy problem. Nearly all of us also have had to eliminate gluten. Read as much as you can here. Tex, our site moderator, also has a book that really explains things concisely. There's a link for it at the top right of this page. Many of us have found relief with dietary changes alone. Good health to you. Deb

[Christine.]

Julie
Does the doctor say your LC is gone? Did they confirm that with multiple biopsies of your colon? Many of us were given an IBS diagnosis.

But We are, as Deb says, very skeptical of an IBS diagnosis. Your GI doctor may not be well acquainted with LC and since he doesn't know much about the disease may be more comfortable lumping it into the catch-all category of IBS.

Most of us believe that we can reduce or eliminate our symptoms by careful diet or by diet and medication but I believe that we likely will have some dietary limitations for life if we don't want the dreaded D, aches and brain fog to return.

Tex's book says it all in a very clear and concise manner. Best of luck and please read as many of these posts as possible. You will find many of us have or have had all your symptoms
Christine

[tlras]

Sorry you are having intermittent flares. But your symptoms actually sound like LC to me. I think a few have D and C. When I joined the forum, I thought that LC meant chronic diarrhea, not constipation, but some suffer from both! As for nausea and pain, I had those until I went gluten free. The pain and nausea went away real quick but the wonderful D (haha) stayed around. Apparently you are reacting to something you are eating. I don't know what colofiber is, but if I were to try a fiber supplement, I'd just be asking for trouble. But it seems to working for you it sounds like.

Have you thought about Enterolabs? I still keep putting it off hoping to nip this in the bud without forking out $600. I see you joined the forum in August so you probably know all the irritants to avoid and the Big 4. Have you been checked for Celiac via endoscopy?

I hope you feel better soon.

Terri

[Leah]

Hi Julie. I think many have already said this but LC ( MC) is for life. We can go onto remission and control our symptoms, but we will never be "cured" unfortunately. It definitely sounds like your LC is acting up and that there is something in your diet that you are reacting to. Gluten is a likely suspect since most of us here are intolerant.

If you can afford the Enterolab testing, it's a good way to go. If not, I would take gluten out and see how you feel after a couple of months. It usually helps most of us tremendously. Gluten, dairy, soy, and eggs are the big inflammatory foods. Raw fruits and veggies, acid foods, and fiber ( and many other things) can be "irritants" on an already inflamed gut. It sounds like you still have inflammation. Once you get that down, then you can think of adding the "irritants" back in by testing them. It's a process that takes a while, but worth the work.

Good luck. I hope you feel better soon.

Leah

[Gayle]

Hi Julie,

Is IBS a disease like LC?

The acronym IBS stands for Irritable Bowel Syndrome. IBS is the name/diagnosis given when a patient exhibits several of a constellation of gastrointestinal symptoms … but, NO evidence can be found of any organic basis for those symptoms.

If you have been diagnosed with LC (Lymphocytic Colitis) then that is in a different story. MC/LC is part of a classification of Bowel Diseases termed IBD, meaning Inflammatory Bowel Disease. Any person with an IBD, may however describe their many symptoms – as being those of IBS, again -- meaning that vague “catch all” category for having gastrointestinal issues, but with no known or identifiable cause. If one has been diagnosed with LC – then that is an identifiable cause so you do have an IBD.

Duspatalin (Mebeverine) is a medication that does not appear to be available on the North American continent, (USA/Canada) so you must be off shore someplace? It appears to be an anti-spasmodic which should help with intestinal cramps. Others of this type medication are occasionally used here to relieve the cramping symptoms of LC, but it would be more desirable to begin to try to understand how to deal with the LC itself, so that those kind of symptoms will not be present and/or in need of this kind of purely symptomatic treatment.

what do you do to control it?

There are medications that are of use in the control of LC, and many folks find that dietary changes are also a big part of helping to gain the upper hand with this problem, so read, read, read your way through a lot of this site.

And ask away, there is potential for considerable help for you here.

Best of Luck,
Gayle

[Julie]

HI,

thank you all for your replies. I have had a colonoscopy and it confirmed this: there is no sign of LC at the moment.

So why do I still have these flares. I do feel a little stress, maybe that is the problem?

I have already eliminated gluten and I don't eat or drink dairy products often.


Thanks
Julie

[ant]

Dear Julie,

You may have already answered this (so apologies if I am repeating a question), but did your colonoscopy include random biopsies of your colon? That is the only way an MC dx could be ruled in or out.

Even if your colonoscopy did include biopsies and no evidence of MC was found, IMHO if you are still having symptoms that denotes (not just connotes) a disease not a "syndrome".

Wishing you all the best in your search for the truth and remission, ant

[tex]

Hi Julie,

I'm not sure how much of my book you read, but my explanation for how you can still have symptoms after a biopsy that's negative for MC can be found in chapter 3, under the heading, "Problems with the diagnostic criteria for microscopic colitis".

My personal opinion of the term "IBS" can be found in chapter 16, under the heading, "And now, even IBS has been associated with the same histological changes".

We have to remember that with this disease, just doing everything that we feel is enough to bring remission is no guarantee that we will achieve remission. Almost all of us overlook one or more things that prevent us from successfully controlling our symptoms. We have to keep searching for the things in our diet that we have missed, that are causing our symptoms. It's never easy to do. Did you read chapter 16? It explains in detail how I believe that stress is the one essential ingredient that leads to the development of MC. In my opinion, it can also trigger relapses, without the need for any other inputs. Some of us are much more vulnerable to stress than others, also. In other words, for some of us, it probably takes less stress to trigger an MC flare, than for others.

Tex

[Gabes-Apg]

Julie
any symptom of the digestion system is an indicator of an issue.

further to tex's post above, if there are symptoms then something we are eating, something we are doing or something we are not doing is causing that to happen.

My MC is technically in remission, but if i eat at different times to my normal routine i get mild D, if i start a new medication or a new supplement I get D. If i have a really stressful situation, within 4 - 8 hours i have explosive D, and then the next BM will be norman.
If i dont get enough sleep i have issues.

there is something in your environment that is a toxin to your body, you need to figure out if it is a food, or if it is a external source like shampoo, or lip balm, if you are not getting enough sleep, are you nervous or stressed about certain situations.
like the food journal, keep a diary of activities, times you eat, emotions you are feeling, and when the symptoms happen. if you do this, within a few week you may very well find your answer.

[Leah]

A diary is an excellent idea. Maybe dairy could be the culprit. Maybe soy. Maybe it's a histamine reaction... So many reasons for gut distress. It takes time and patience to figure it all out. If you can, then you may be able to avoid an actual MC Dx.

Leah

[tex]

then you may be able to avoid an actual MC Dx.

Julie has already been diagnosed with LC, a year ago. This doctor is just trying to undiagnose her from MC, and diagnose her with IBS.

That's a common problem with GI specialists who don't understand MC and don't know how to properly treat it.

Tex

[carolm]

Hi Julie,
re: nausea-- for me it was a HUGE problem. Absolutely debilitating. I would wake up terribly nauseated. It lessened as the day went on. It kept me from eating and being able to keep up with the usual daily obligations. Then a couple of things came to light. 1. Although for many people with LC PPIs are counter indicated, for me it seems to be something I need. My endoscope did show erosion and irritation. I started and stopped Dexilant twice. The third time I had to start Dexilant again it became obvious that it was just something I was going to have to do. The second thing that really helped me turn the corner on the nausea was acupuncture. With my second treatment the morning nausea went away and has never returned. By my 4th treatment we moved appts a month apart and now I only get one if I need it or if I'm traveling and want to be sure I keep motion sickness at bay.

I suspect my nausea is a combination of general inflammation from LC and gastritis, possibly with some histamine reaction. I'm am much better after getting the nausea out of the way. It was well worth the effort to figure out how to tackle the nausea. It kept me from eating and that led to a lack of calories, dizziness, blood sugar problems, fatigue and weakness, etc. I know you know.

I hope you get your nausea resolved and it gets you on the right track.

Carol

[Julie]

HI everybody,

To answer all your questions: mi GI took a lot of biopsies during the colonoscopy. My nausea is better since I'm doing the glutenfree diet. It is like that for me too CAROLM, there is a period of 1 week a month that I can't eat properly, drinking is also a problem then. I have to stay in bed then. It's horrible for me, my family, boyfriend and boss. In that period I feel very nausious, I have this sharp pain in my abdomen, my intestines make a lot of noise, ....

But now, I am all better again. I do go to the toilet very often (sometimes 5 times a day, but the diarhea is gone :D )

It just frustrates me that my GI and doctor tell me that I have IBS (that should explain the period of one week a month being sick) and that you can't do anything about it. I didn't feel to comfortable with it so I came to you. My GI tells me that I can't be having any symptoms of LC since the LC isn't present in any of the biopsies, so I must be having IBS in combination with LC. Strange, isn't it? I think my GI didn't really have an answer.

I do know that I am under a lot of stress at work, at home, ... I even feel my heart pounding very hard every day. So I am certain that stress has to do with it. I am thinking of doing yoga and seeing a psychologist, so that I can manage the stress I feel so very often. I've already kept a diary and I've found that stress is a huge factor in my daily life. My eating habits shouldn't be a problem anymore since I've eliminated a lot in my diet.

Thanks

Julie

[ant]

Dear Julie,

It just frustrates me that my GI and doctor tell me that I have IBS (that should explain the period of one week a month being sick) and that you can't do anything about it. I didn't feel to comfortable with it so I came to you. My GI tells me that I can't be having any symptoms of LC since the LC isn't present in any of the biopsies, so I must be having IBS in combination with LC. Strange, isn't it? I think my GI didn't really have an answer.

No need to talk about your doctor's attempts to define and redefine what you have ... we all know what you are going through (whatever "they" call it).

As you are young, perhaps the healing (as per the biopsy markers of LC) is quicker. But that does not prove that you can now magically tolerate gluten (and whatever else).

As an example, after many years of careful diet treatment Polly was given a dx of no longer having MC. But, I believe she still reacts if she strays outside the diet that brought her remission. (Dear Polly, please correct me if I have this wrong).

Best, ant