Why so much during the night?

[katinchatt]

A question to anyone who may know the answer to ~ why at night?
I understand that Nocturnal D is a symptom of MC, but does anyone know a specific trigger?

Before I was diagnosed all I had to do was swallow one bite of food and within 5 min. I was running. It literally happened that fast, and I continued my frequent flyer miles for 2 hours. Things calmed down, until the next first bite.
Now, I do fairly OK during the day but at night it's a whole different entity. (I had a self-imposed relapse last night) but just prior to that. I am careful not to eat past 6PM, & take my meds late enough that they should last through the nite. Seems like from 2AM on, every 45 min. or so I'm up and running.....I finally get back to bed, begin to drift off and BAM, there I go again. The "sounds" are my forewarning and most of the time they wake me, as literally a facet turns on. I hope I've explained this so someome understands. I've re-read it 3x and probably only you guys will understand what I'm trying to say.

I'm so grateful you guys are here & appreciate you ~ you have no idea!
Kat

[tex]

Kat,

There is a lot of variability in the way that our reactions proceed. Many of us are lucky enough that, (most of the time), we are not bothered by episodes during normal sleep hours. Usually, though, it will get us up early, and for some of us, obviously, this happens much earlier than for others. Some members have had to wear "Depends" to bed, in order to avoid having to clean up the bed almost nightly, due to a lack of advance warning.

I have always suspected that those who react to eating within 5 or 10 minutes, may be experiencing some sort of allergic reaction, rather than an intolerance reaction. However, if those reactions occur even when you are eating "safe" foods, then obviously something other than a simple food allergy is at play. I can remember feeling the need to head to the bathroom, almost immediately after finishing a meal, (and sometimes, before I finished a meal), and there have been discussions here before, where many others have reported a similar experience. Apparently this has something to do with the heightened sensitivity of the gut, and the accelerated motility that most of us experience, while reacting. IOW, the digestive system is so inflamed and upset, that the sensation of eating, automatically triggers a "purge" reaction. This may happen, because the gut is so inflamed and bloated, that the enteric nervous system misinterprets the signals, and decides that the system is already full, and therefore it needs to make room, so that it can hold the food that is being eaten, (or was eaten a few minutes ago). Note that this is just my theory, and I'm not aware of any research that has been done on the subject. One thing that lends support to this theory, though, is the fact that even though we may have these urges at virtually every meal, sometimes the BMs amount to very little, or even nothing at all, especially if we had a BM right before eating. This is probably a separate issue, though, from the nighttime "episodes".

Maybe someone else can shed some light on this topic.

Tex

[katinchatt]

Thank you Tex!

I was just curious because it was the fact that I have these night time episodes that my GI decided to do biopsies. If not, I may not have found out what this was so soon. So in that case I was lucky because of course everything looked perfectly fine otherwise. Now I understand why so many suffer for years without a proper diagnosis. I find it odd that he remembered that fact, but can't offer treatment or even a follow up. Other than Pepto for 2 mo. and then I'll be just fine and dandy. Holy *$#@ ~ Oh, and I should reduce my stress!

Your dedication to this site is fantastic!
Kat

[tex]

Kat,

If that's the reason why your GI doc decided to take some biopsy samples, then he does seem to know more about it than a lot of the GI docs out there, (because he at least recognizes the difference between MC and IBS, or at least he seems to know the difference). The fact of the matter is that nocturnal diarrhea may be seen in infectious colitis, (pseudomembranous colitis, toxic megacolon, etc.), or inflammatory bowel disease, (Crohn's, UC, MC), but it is not a feature of IBS. That fact in itself, should be a tip-off to the many doctors who keep handing out misdiagnoses for IBS. All they would have to do is "think", and they would realize that their diagnosis is wrong.

My guess is that they are taught that much in med school, (but most of them probably don't remember it). Unfortunately, the medical texts suggest a lot of treatments for MC, but most of them are not reliable, in the long term, when used the way that the pharmaceutical companies recommend, and many doctors are beginning to realize that, so they simply don't know how to treat it. Apparently, the official recommendation of the medical texts, at this point, is to "try this", then "try that", and if it still doesn't work, "learn to live with it".

Thank you for the kind words. If I live to be a hundred, I'll never forget the miserable, hopeless, all-alone-in-the-world feeling, that this disease imposed on me, when it robbed me of several years of my life. Those years should have been some of the best of my life, but instead, they were the worst. After I found the key, and I eventually was able to enjoy remission, I knew what I had to do, to attain closure, (or to get even), for the years that I had lost to this "crappy" disease, (which the medical profession seemed to want to just sweep under the rug). I decided to do the same thing that many of the other members here do every day, namely to devote as much of my time as I can, to helping others, who are in need of a little guidance, to find their own paths to remission. I can't think of a better way to use my time.

Hopefully, some day, the medical profession will learn how to treat MC, and when it does, this site will be of interest mostly from a historical viewpoint. I rather doubt, though, that the medical industry will ever give us any credit for promoting innovative and effective treatments for MC, (treatments that actually work), since we are so foreign to their regimented, "Good-Old-Boy" network.

Tex

[MaggieRedwings]

Morning Kat,

I have always been an early riser between 3 and 4 a.m. However, the last few years it is a definite 3 AM when the sounds wake me up to and then it just goes on and on till around 6:30 a.m. Lately it has taken longer for the system to settle down but that is just something that goes along with this disease for some of us. Stick with your diet and I feel it will do you immense good.

Love, Maggie

[Gloria]

I remember my GI raised his eyebrows when I said I made trips to the bathroom at night. I think they must be taught that much about this disease, but as Tex said, their knowledge stops there.

The medical profession has been trained to treat diseases with pills or surgery. They don't know what to do when a disease doesn't respond to either. This disease can be managed with medication, but we know that it doesn't actually treat it, but suppresses the symptoms. As soon as the patient stops taking the medication, the symptoms usually resurface. The most effective treatment is to eliminate the foods that are causing the irritation to the colon. Doctors don't have a problem recognizing the importance of gluten elimination in celiac disease, but they are very skeptical about food being the cause and the solution for this disease.

I think it's because food elimination is not an exact science, as we've seen so many times here. We don't have a one-size-fits-all solution. It would be terrific if we could say to someone: you have double DQ1 genes, so you need to eliminate these foods. It's very hard for a GI to tell a patient that he/she has to eliminate foods from their diet, but not tell them exactly what foods to eliminate. Yet that's the dilemma that doctors face with this disease.

IMHO, the real problem is that Dr. Fine still hasn't published his findings. He also hasn't expanded the range of foods in his tests. Thirdly, I suspect that he could easily connect the dots between genetic test results and specific food intolerances. Any one of those would be extremely helpful to us. I don't want to criticize him because he's done a great service for us. But one can only wonder why he continues to withhold his findings from the medical profession.

In the meantime, we need to educate the doctors. I've made an appointment with my GI for next month, even though I no longer need his services. I'm planning on educating him by bringing my Enterolab test results, a list of my food intolerances and this website's URL. I think he may be receptive to me if I approach him in a nice way and let him know that I'm trying to help him treat his next MC patient. He seemed open-minded at my last visit, so we'll see. I'll be sure to let you know what happens.

[katinchatt]

I'm very quickly (through you guys) finding out that this is not a one-size-fits all disease. I personally think mine CC was drug induced. Years and years of anti-inflammatory meds for a bad knee (I'm working on getting a new one). So, if that's the case do the food intoleraces still apply? It really did happen over night, one day fine, next day ~ BAM! Or does it not matter "why" it happens? .... it just does, and through diet it can be helped.


As far as the night time episodes, it's just another symptom I suppose, like my crying & craving foods I can't eat. My husband's theory on my night time episodes is that I must surely be dreaming of food because I talk about it so much. He's been so good to me, (he works in Healthcare so that doesn't hurt). In the past he brought me little things home, like chocolate or my favorite ice cream. Last night however he brought me a roll of toilet paper with a pretty yellow bow on it. Well, of course I cried, then laughed, and knew with his help and everyone here I will be on the road to recovery very soon.

Thanks so much!
Kat

[Courtney]

Not only is this not a one-size-fits-all disease, but it seems to not be a one-size-fits-one disease! One thing I give my GI credit for getting right is the fact that it symptoms sometimes change over time, and I know that is true for me. For about 3 years, I had D about 5X a day, but I could always control it--no accidents. Then about 2 years ago, the morning accidents started, along with D every single time I went to the bathroom--often with no indication that it was coming. Then, that part stopped, but I continued with morning and evening D, and sometimes in between, but not everyday (although morning and evening were constant). The weird thing is that I've realized that if I get up very early for some reason, say before 5:30 or so, there's no D. The other weird thing is that if I get up around 6ish and have D, then I go back to bed, I'll have more D when I wake up, but if I don't go back to bed, there will be no more D. Crazy. One reason I figured out that I did not have IBS and needed to get this checked is that I read that IBS usually does not wake people up.

Regarding docs lack of receptivity to the idea of food intolerances bc they are not an "exact science," I think that's probably right on. And I feel that a big part of the problem is that many specialists especially do not think about treating the whole body. They see their little system and don't look at the whole person. I read somewhere (you'll hear that phrase a lot from me) that the current system of treating the body by system dates to the Renaissance, when modern medicine was really beginning to take shape. I hope that that is beginning to change, though, and that docs will eventually realize that there are as many answers as there are patients. In the meantime, as my grandmother says, "They're practicing."

Courtney

[tex]

Kat,

To answer your question about whether or not food intolerances apply to drug-induced colitis - there seems to be discrepancies in the literature about this. If you search the literature, many articles contain statements to the effect that "the patient's symptoms resolved, after the drug was discontinued". If you look at the data from our own board members, however, the evidence suggests that once triggered, food intolerances are permanent, regardless of the reason for the initial onset of MC. Some members, (Katy, for example), have reported that when they stopped using the drug that caused the MC to be triggered, their symptoms went away, (as reported in the literature). However, Katy has found that her sensitivity to gluten is becoming increasingly troublesome, as time goes by, suggesting that some of those reports of automatic remission on withdrawal of the med, may have been written prematurely.

IMO, not all food intolerances are permanent, (due to the fact that the more inflammed the GI tract becomes, the more sensitive it becomes to other proteins with polymer chains similar to gluten). I Believe that in some cases, as the gut heals, some of those protein intolerances may become less of a problem. Since the gliadins in gluten, (which certain other proteins such as casein, soya, zein, etc., may seem to "mimic", and therefore confuse our immune system), are actually toxic, to immune systems that are capable of detecting it, then it is unlikely that we will ever be able to overcome an intolerance to gluten, without chemical intervention, (such as the "zonulin pills" that Dr. Fasano is testing, right now). That's just my opinion, though.

That was a neat story about your husband's gift. It had sort of the same effect on me, when I read it.

Tex

[JLH]

ROTFLMAO.

Your husband has a great sense of humor. The next present can be some creamy Desitin!

[katinchatt]

So, I'm thinking no matter the cause/reason, the pre-disposition probably exists. Putting 2 & 2 together I'm wondering now about the genetic link. My 28 year old son was diagnosed with a rare form of lupus. Actually it's diagnosed as "Anti-Coagulate Lupus". He will be on extremely high doses of Coumadin for the rest of his life. Anyone else on his dose would bleed to death, basically his blood is mud without it. A few months back he had a normal 1 hour out-patient shoulder surgery, but was in intensive care for 2 days because he had to come off the Coumadin just to have the surgery. He was weaned off last year (thinking it was a temporary disorder) and within 3 weeks had 2 clots develop in his leg. My sis has a rare form of Rheumatoid Arthritis, Felty Syndrome. Our family (paternal side) has a high incidence of Thyroid disease, and Thyroid Cancer. My Thyroid has a "growth", but my ENT isn't worried and wants to wait and see how much bigger it will be in 3 months.?? An uptake scan showed it's not Thyroid tissue. Well, Hypo or Hyper tissue shows up on nuclear scans, Cancer isn't Thyroid tissue and won't show up on a nuclear scan, am I missing something? Vent, vent, vent. ............................. My God, I just realized my family is a genetic time bomb! Must be our mean Irish Genes!

Irony - I'm a textbook 51 year old woman who spends money on Collagen rejuvenation. Be careful what you wish for........lol
Kat

[tex]

Kat,

Your family certainly does have it's share of rare autoimmune issues.

A majority of non-functioning nodules are not malignant. Did the test show it to be totally non-functioning? If so, then your ENT really should check it out after the 3-month wait. If he or she doesn't, I think that if I were in your shoes, I might press the issue, at that point. He or she might know more about it than you realize, though, and might be on top of it. After all, those guys are supposed to be wearing those white coats for a reason.

Tex

[katinchatt]

Hi Tex,

Yes, next on my list of chores is having this Thyroid issue resolved once and 4 all. My blood tests came back Borderline. Some Doc's would treat, some would not. Maybe that's what concerns me, if it's not a Thyroid issue, what is it? I don't know, I just don't like little growths in me that are of unknown origin. It has enlarged a tad, I can clearly see the little thing just staring at me. Nothing on the line of a goiter, but still. I know 80% of these little thingys are nothing but with my family history I look at it more like 50/50. I went through something similar last year with a borderline mammogram, scared the you-know-what out of me. Tested every 3 months, then given the all clear a few months back. I'm a worrier by nature, maybe it's the Mom in me.

First and for most my Tummy's gotta get better first. My #1 priority !!! The Pepto, Lomotil & Librax are selective at best. Seems I have one good day, then one bad. A good day is feeling good and eating - small safe amounts. However, they are followed by very long nights, up 6-7 times, then a bad day follows. . . so on & so on. I'm am amazed at all the pills I'm taking that would plug up a dam, but won't give me 2 consecutive days of a peace & quiet. I'm finally getting over the amazing lethargy Librax was causing. Felt like a dish rag, probably looked like one too.

I'll get there,
Kat

[JLH]

Doctors are trained that when they hear hoofbeats, think horses not zebras.

[tex]

Kat,

You're right, it's a big project to get everything sorted out and working right, so doing it one thing at a time, (and one day at a time), is clearly the way to go. You do have to look out for yourself, though, because most doctors only worry about their particular specialty, so if you don't worry about your entire body, something might easily be overlooked. And, as Joan mentioned, doctors are trained to consider a lot of diseases to be rare, so they usually don't even think about looking for them. Doctors do best, on the easy, well-behaved diseases, (that is, the more common diseases, that affect most people the same way, so that it's easy to learn all the details about them).

I agree - you will get there. Just take it one day at a time.

Tex