Hi,
My daughter has a j-tube. She takes nothing by mouth, A recent check up at the dentist showed that every single tooth was decayed. The dentists said this was xerostomia which is caused by not eating by mouth. According to him the saliva is lacking bacteria that bathes the teeth and helps keep them healthy.
Has anyone heard of this or experienced this before ?
Hi there:
I'm sorry to hear about your daughter's teeth. But I'm not terribly surprised. I spent 5+ months in the hospital in 2005, with over three months in ICU. I didn't eat for the vast majority of the hospital stay. When I woke from what was essentially a coma after many weeks, my teeth were very sensitive. I was so surprised and asked a nurse friend of mine, if I wasn't eating how could my teeth be so messed up. I will always remember that she said that this is exactly why they are messed up. Food, while it obviously introduces bacteria, also cleans your teeth. I think think this is why they always give you mouthwash in the hospital, with your toiletries. Your teeth can suffer when you least expect it. And, of course, when we're up and around and eating most of us are good about brushing and flossing.
I have been lucky to have great teeth. They are stained from chemo drugs I had as a child, and not particularly straight (and I had too many illnesses when I was young to entertain the idea of braces). But oddly, my teeth happen to be one of the very few body parts that do what they are supposed to do and haven't let me down yet. In fact, I've never even had a cavity. However, I was very worried during that hospital stay that my teeth had given out on me. I began, while still in the hospital, brushing and flossing, and using mouth wash obsessively. I had to start by using Sensadyne toothpaste b/c it was so painful to even have water in my mouth. I only had to do that for less than a year, and eventually was able to go back to regular toothpaste.
While I'm on TPN and IV fluids, I eat a pretty normal diet. But after that experience, I don't want to take my teeth for granted. I see the dentist 2x per year. I still brush and floss very regularly, and use mouth wash occassionally. I probably could stand to use the mouth wash more, but I mostly use it now to quickly clean my mouth after vomiting, which happens with some frequency unfortunately.
I am sorry that I have never heard of the xerostomia diagnosis. Since my issue took care of itself, I didn't end up speaking to a dentist about it. I very much hope for you & your daughter's sake that it's something that can be fixed, as mine was. I would be interested to hear more about this condition. I tend to think that this might be one of those topics that impact many of us, but we don't think about because we have so many other major issues to worry about. One more thing I wanted to mention is that I know many long-term cancer survivors who, due to radiation damage to their jaw, do not produce saliva at all or as much as they should. I have seen discussion of good sprays, gums and candies that produce saliva. This may be something completely different, but you might want to research this a bit. Or if you need me to inquire among my community of cancer survivors, I would be more than happy to do so.
On the subject of dentists, I think it's important to mention that those of us on TPN are required to take antibiotics before we get even a routine teeth cleaning/visit to the dentist. I am sure that 99.9% of people on this list on TPN already are well aware of this, but I worry that some out there may not. And it's very important to do this, as even the routine dental cleaning can introduce bacteria into the blood stream, that is very dangerous for those with any kind of line. I was not told this by my providers when I first got my line, but thankfully already knew b/c I had friends with central lines for cancer treatment and they told me. It just strikes me as something important to mention on this list just in case someone out there has not yet been informed of this important detail.
Best,
Fran
I have been on a j-tube for 2.5 years and have a very good dentist who quickly informed me about the potential increase in decay. For me, this occured even earlier than the j-tube due to mouth area rediation related reduction in saliva.
I now get my teeth cleaned 4 times a year rather than 2. My insurance only covers the first two.
Hi
Sorry to hear of your daughter's problems. Unfortunately I'm going thru the same problem right now. Radiation left me without any saliva and I am on a feeding tube, nothing at all by mouth, not even water. I had been getting my teeth cleaned every 6 months and I brush 4 times a day. However, at my last cleaning the dentist discovered that my enamel was fast 'disappearing' and a 2nd opinion agreed that I needed something drastic done. I am in the process of having all my upper teeth capped and my bottom teeth veneered. It's costing a fortune and insurance covers almost nothing but I have little choice. Because of the radiation, pulling a tooth could be risky. And cavities had already set in.
My dentists hadn't heard of this bad a problem before. I wish I could suggest an answer. Good luck.
Kathy
Hi, Signal 10.
I totally agree with the folks who have stated how important it is to rigorously continue oral care and dental checks. I take nothing orally.
I too brush, floss, and have regular dental check ups. I actually brush with baking soda, which I have done for at least 25 years, just because I like the effect. And baking soda doesn't leave me thirsty like toothpaste does. I doesn't take long to get over the taste. And the real test is that my dentist has always bragged on my oral care (even after my g-tube placement two and a half years ago).
I think the real sin in all this is that the medical providers do not tell us (I often doubt that many of them know) what we need to know in order to do preventive maintenance, and they treat these conditions as if they were things we just have to live with... when if fact many of our problems are preventable if we just know what to do.
Best of everything to you.
Marie
You are so right that the medical providers don't tell us or don't know. I spent 3 hours in a dentist's chair today getting caps on my front teeth. It was a horrible chore in that the drill uses water that drained back into my throat and choked me. I used to go to my dentist every 6 months and took great care of my teeth. Perhaps too good because the enamel had worn right off.
I will try the baking soda. The worst thing about not taking anything orally is the thirst. If only i could have a drink of nice cold water ....
Best wishes
Kathy
To Kathy and others,
On baking soda and reducing thirst. After I brush my teetn, I swish a very small amount of water in my mouth then spit it out, never in the back of my throat (since for me it would pool around my wind pipe if it got a chance). That does the trick for me. With toothpaste, it seemed like I was thirsty forever.
I know what you mean about wishing for a cool drink. When I first got my twin tubes (g-tube and trach), that was a big adjustment. I have switched my thinking so that if my body feels hydrated, I am satisfied.
I use gatorade and pedialyte to supplement water. Water alone does not always quench my thirst. Pedialyte is best for me. Walmart, Target, and Kroger all have their store brand that is about 1/2 the price of namebrand Pedialyte.
Cheers for the day! Marie
Marie
Oh my, thank you sooo much for your reply. With all I have been through, the only thing that bothers me on a daily basis is the thirst. I do take gaterade but it doesn't seem to help and too muchwater just bloats my tummy and I leak and I am still thirsty. I will run out and get pedialyte today and try it. I sure hope it helps. Thanks so much.
Kathy
Kathy,
You are very welcome. I hope our discussion helps some other folks. I always think of additional things after I write. I always flush with water after even these clear liquids to keep my tube clean.
This has nothing to do with thirst, but I always flush before and after with WARM water (except when I am out somewhere). I think of it kind of like rinsing the dishes. I think warm water does a better cleaning job.
You made my day. It makes me feel so good when I know something I have said helps someone else! Let me know if pedialyte works as well for you.
Cheers for life, breath, and hydration!! Marie
I assume, Kathy and Marie, that you two take the Gatorade or Pedialyte through your tube, not by mouth. Is that correct? I ask because over the last couple of years my teeth have begun to decalcify, despite the fact that I do eat (although my diet is limited and I consume very little sugar). I attribute most of this situation to my having consumed a half gallon of gatorade each day for the last fourteen years. I found out that gatorade's pH is 3, which is quite acidic. Also, gatorade has too much sugar, not good for those of us with compromised/shorted guts (not good for teeth, either).
I suffer from dry mouth, which probably contributed to the decalcification.
My dental hygienist has me using the prescription strength, non-drying, toothpaste Prevadent, which I buy right there at the dental office. She seems to think this will help prevent further decalcification. Also, I have switched to mostly drinking the Oral Rehydration Salts packed by the Jianis Bros (816-421-2880). I only drink gatorade when I go out, and I dilute it and add some table salt.
Kathy, I'm sorry you have to have caps. I fear that is the direction I'm headed. This is all very upsetting to me, because I used to be a dental hygienist! I haven't practiced in years - I have a central line and my doctor did not want me putting my hands in peoples' mouths and risking infection, so I had to give up the profession.
Davi
Davi, thanks for your questions... that is the great part of our sharing as community. Yes, everything for me is via tube.
I don't consume large amounts of gatorade and pedialyte. Usually not more than eight ounces of either in a day's time. For me that takes the edge off the thirst. So I don't get that large dose of sugar. I am so glad you brought out that point. I probably drink about 50-60 onces of water per day (in addition to waht is figured in the formula). And it's good to know about Prevadent.
Cheers, Marie
It is so great to talk with someone who has been in my 'shoes' for a while. I've been on this feeding tube for almost 3 years, and my local doctors really have never dealt with someone on a tube (mic-key tube.) For a doctor, I have to travel 3 hrs to get to my gastro doctor. And I have nothing by mouth, hence the thirst for a cold glass of water.
I have been camping in the Adirondack Mts of norther NY (peak fall colors) all weekend with grandchildren and counting my blessings. I haven't tried either the pedialyte or the baking soda yet, but will report back in a couple days. I did change to a toothpaste that is supposed to harden enamel by sensodyne and a mouthwash by ACT that is supposed to do the same. A little too late, I'm afraid.
The worst part about the caps is sitting in the dentist office for 2 hours. I don't mind the drill, but the water he has to use almost chokes me, and we have to stop every couple minutes to suction out the water. Last week I told him that I thought he was 'waterboarding' me.
I have found that it's best to keep a positive attitude, a sense of humor, and count your blessings.
Kathy
I started this post about tooth-decay for my daughter but in the process I have "met" so many interesting people. You are all heroes!
My secret is that I too am on TPN. I have Crohn's Disease and have had most of my small bowel removed. Praise God I can still eat. I don't absorb much of it but eating does feel good.
I have had CD for over 30 years. I have learned two things.1. Learn to lean on your loved ones when you don't feel well or are depressed and 2. Live! Don't let the Devil steal your joy. Every morning that we wake up we are a testimony to Gods unfailing love.
David
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