Thirst and food aversions/obsessions and my slow decent into Insanity...

Had some stuff rolling around in my head the last few days. Basically I'm sick and tired of being sick and tired, but aren't we all? No sense in really saying that I guess because this is a group of people all in the same boat.

The thirst I am experiencing is slowly driving me nuts. Although I've been on liquids for awhile, even that is failing me. I work mornings and havent' been having anything with calories/sugar before work because the *only* time my gut feels normal is in the morning before I ask it to do anything. Being in front of a classroom of 14 year olds is not so great timing to be running to the bathroom. But after a disasterous experience at work Wednesday after having a few sips of water with my meds, I now cannot have ANYTHING before work. So I'm up at 5:30 and its nearly noon before I can have anything, even water and then only if I'll be home and close to the bathroom and in my sweatpants. I know so many people have it so much worse but I've struggled with killer thirst for awhile now and teaching and being exhausted and having a dry mouth is just tough. I wake up totally dehydrated and still can't drink! It is literally driving me insane. I try so hard to focus on my job but even that is hard when I feel so terrible. I love my students to death but sometimes I just feel like I don't have enough to give them when I want to so badly. It's just hard to put on that happy face.

On a completely unrelated note- does anyone have food aversions and obsessions kind of randomly? I am finding myself becoming more and more picky even with the liquids I consume. I dont' want anything fruity anymore (gatorade, juice, jello) because I burp up the taste of stuff for so long it totally turns me off. I only want things vanilla or chocolate flavored because they taste more pleasent when I belching 24/7. Before my GP got super bad and I was eating a better diet, I still was very picky- no 'savory' foods sounded good, no herbs, etc. Even if it was a GP friendly food. It all started when I got sick a few years ago and would have aweful sulfur tasting burps that were like rotton eggs. I was a big hard boiled egg eater at the time but haven't been able to touch them since. Now I feel like mentally as well as physically I'm becoming more restrictive in my head and that is just making it harder.

Along with that, I have sort of food "obsessions" in the sense that I will just have one thing all day or for days. Lately it has been unsweetened vanilla almond milk that I add my own sugar to. I like the gritty texture of adding my sugar and controlling how sweet it is. But this is literally the only thing I've had for many days. I just feel like when something works I don't want to change anything. Even Ensure and stuff I was drinking before don't sound good. Maybe I'm just stuck in a rut because the situation is kind of depressing overall? I don't know, I just feel like I'm not in a good place physically or mentally with food and it keeps getting worse.

And insanity: my insanity is due to the fact that I see my (useless) GI monday and part of me still holds out hope he will help me. It's been a year with this doctor alone and he has been nothing but unhelpful. Didn't even see me in the hospital when I specifically drove to the hospital where he is 1 hour from my hour when I was hospitalized for 5 days last month. And when I call his nurse tells me to "try harder" to eat. WTF?! But it is my fault because I allow myself to be hopeful. Then am disappointed. And afterall, isnt' that the definition of insanity? Doing the same thing and expecting a different result?

Off to smile through my thirst and exhaustion and teach 9th graders about Genetics!

Edited March 22, 2013 at 8:13 am

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What happens if you drink? I'm inferring diarrhea? You need a new doctor! Is he a motility specialist? Actually, do you have a motility issue? Irregardless, this guy sucks, fire him! If he won't refer you on, see if your GP will. I've been lucky, in that my docs have known when to call uncle, or I have a back up who can refer me. You can not keep asking your tank to run on empty! Being dehydrated and malnourished isn't helping. As far as dry mouth, there's a product called Biotene, a toothpaste and mouthwash. It keeps your mouth moist. I don't care for the taste, but it does work. Can you suck on pepper mints? Perhaps you need a run of TPN. They put an IV port under your collar bone, and you get all your fluids and nutrients through your veins. Have you tried adding some vanilla Greek yogurt to your almond milk? I do that and throw in a bana, blend it up into a tasty, high protein smoothie. Please let me know how you are doing, I'm worried.

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Becareful if you start telling your docs this they will turn your GP into rumination syndrome and then you won't get any help. Try to keep a food diary and try not to get obsessed with it but rather focus on foods and times you can have liquid and listen to your own body and mind because really you are the only person who can make yourself feel better or understand what you are going through.

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I use to listen to my doctor as if they knew it all. I finally came to realize that I pay them and I can fire them. You need to shop for someone who will listen to your concerns and care about what is happening. I'm so sorry that you are suffering so much. I have awful dry mouth and I suck on sugar free butterscotch candy. I know how awful it feels to have a dry mouth. I have a g-j tube with formula 24/7 because I was not able to eat anything. I had lived on baby food for 6 months made into a thin soup. But because I could only handle 1/2 cup once or twice a day. I had lost 80 lbs I was malnourished. I couldn't drink enough water because it hurt my stomach real bad. Even if it was warmed or room temperature I couldn't drink much. With you working a g-j or plain j wouldn't work for you. But maybe TIN would give you the nutrients and fluids that you need. I will pray for you in your struggles. I hope you will be able to keep teaching your children.

I'm Your Friend
JoAnna

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Thank you for your responses. YES I know my GI needs to go. I've been with him for a year, he is supposed to be the motility specialist (one of the best in the state at a top hospital) but I've been unimpressed. He keeps giving me new meds and making me wait months between appointments as I decline. And he really hasn't helped me get to the root of my GI (and other) problems. I'm currently looking into other doctors and I have an appointment at Mayo in a month. I just don't know if I can make it that long without some help. I absolutely CANNOT lose my job for many reason, but I'm worried as it becomes harder and harder and teaching these kids means so much to me.

@Bookseller: Yes, diarrhea is one of my main problems- even while I'm constipated and I struggle alot with bloating and urgency- not a great combo to be in front of 25 kids with. I will have to look into that biotene. I have been sucking on suckers more but only after work as anything gets my GI tract going and I'm soooo nervous after a near-accident on Wednesday while I was teaching. I honestly would love to be on TPN because I know I'd be so much more functional. The best I've felt in months was the 5 days I was in the hospital on IV fluids 24-7. I know my GI will never do this for me, since he's so useless. They wanted me to try an NJ tube in the hospital but now I don't even think my GI is going to let me do that because even though I don't eat my weight is stable and I'm thin but not underweight. I'm just so exhausted though. I will give your smoothie a try- that actually sounds pretty good. I think I'm just uninspired lately with food because eating makes me feel so crappy in general my brain just says "why try?"

@Gobalina: Your are right about the food diary. I was better about that in the past, but then sort of just stopped caring and stopped keeping it because it was too depressing. I know it is important in tracking my symptoms though.

@J-Gaumond: I did the baby food thing for awhile too- surprisingly didn't mind it because there was alot of variety but eventually that started bugging me too. Which is why I went to the almond milk and ensure. I am the same way with water/fluids. I actually really dont' like water and whenever I drink to my thirst it is too much and I get really bloated and terrible reflux. So I feel crazy being SO thirsty and fighting the urge to just guzzle something. I think I will bring up TPN to my doctor just because it can't hurt and I'm SO desperate to feel better and keep my job. Thanks for your prayers- I'm sending them back your way too!

Thanks for reading everyone- I love this community. :)

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Glad you're getting rid of your GI! I'm gong to a new one on Monday. Have been impacted 3 times in a llittle over a month. Tried high fibrer diet, and am now on a low fiber diet. Now going in my panties, just a little. Have stomach pains. Tried alot of laxatives,enemas, nothing works. When I eat, or think about eating, I know I'll be impacted again. This has taken over my life. I am also alot of other medical issues.

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Running, can't you take a leave of absence? I know this is not going to please you, but have you considered Depends? That way, an accident wouldn't be the end of your day. You would have time to get to the restroom, and then you might be able to eat and drink. I know it seems degrading, but wouldn't it be worth it if you could eat, drink, and teach w/ more confidence?it won't be forever, just hold on til the Mayo appointment. Think about it, I can swallow a lot of inconvenience and embarrassment to keep as much of my life as possible. Just because your weight is stable doesn't mean you're not malnourished or dehydrated. I lost 50 lbs rather rapidly, but have since stopped losing weight, even though I'm not eating more than 500-600 calories / day. Great, miserable and fat. If you get dehydrated enough, it can affect your heart. I have trouble w/ water. I do better w/ diet lemon lime soda. I know, not supposed to drink diet, and you have bloat issues. Maybe let it or some ginger ale go flat. I also do well w/ white grape juice.

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Bookseller- I wish that I could take a leave but my job will not be there when I get back. I left a full time teaching position to come to this position part time, because next year I will be full time. It turned out to be a blessing because I could not be working full time now. Literally thousands of people applied because its a great district with decent pay so I could be easily replaced. Which is why I'm trying so hard for that not to happen. I have been considering depends and more so after the last week, but it is just a matter of feeling so depressed that I'm 26 and it might have come to that.

I feel like my nutrition and hydration status are poor. I'm pretty good at muscling through feeling bad but it has gotten increasingly more difficult lately. I feel like my doc puts so much stock in weight only though which drives me mad because, like you, I have an extremely low caloric intake yet my weight has pretty much remained constant. I have an appointment tomorrow with my GI (that I don't like) but atleast its something as Mayo is still a month away. I don't have high expectations but there is always alittle part of me that hopes...

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Don't look at the Depends as a "coming to that". Think of them as "it'll work for now". You truly are running on empty, and you're not going to be able to do it forever. If you really don't want to try Depends, get some of that Biotene. It will help w/ the dry mouth, but you really do need to do something to fix the cause. Do you ever have issues w/ constipation? Did you have your gall bladder removed? Before gp, I had to take medicine to take out the bile that my gall bladder was no longer removing. What happens if you take Imodium type drugs? You are the same age as my son, he is a teacher too! I know how hard it is to find a good job in that field. But sweetie, you won't be able to work if you can't stand up! I am the queen of "fake it til you make it". I use all kinds of tricks to get through until I have time to fall apart. If you can just find coping mechanisms until you get to Mayo, maybe they'll have more answers.

To clarify, the extra bile was giving me diarrhea. Knew it was from the bile because the stool was dark green. I'm more than happy to brainstorm w/ you if you'd like. Now, go drink something! :))

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I would suggest seeing an ND a doctor of naturalpathic. I have done that and have great results with my reflux and major constipation going gluten free and eliminating dairy unless is cultured and raw. Sounds like you may also need to eliminate sugars unless Stevia and try a good probiotic and digestive enzymes. Your gut sounds like it's in need of good bacteria. I don't know your whole health history. I just learned that when doctors couldn't help me I turned to the natural route with much help and success. Even chiropractors are helpful as your body may be way out of alignment. Keep the faith!

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What meds are you on? Some meds can cause increased thirst and dry mouth etc.

Obsessive behaviour re. food is very common when people are experiencing starvation. Could you be experiencing starvation? If this is the cause, improving your nutritional status will fix that problem. Of course that's easier said than done with GI issues, but I've found working with a registered dietitian really helpful. They have lots of tricks for getting more nutrition in, in the small quantities of food/drink we are able to consume.

You can search for one specialising in GI disorders here:

http://www.eatright.org/programs/rdfinder/

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