Malnutrition

[Jaybay]

Hard to believe in this day and age, but after years of fighting abdominal adhesions and constant small bowel obstruction I finally hit bottom.  What with one disaster after another I completely let myself go and paid no attention to what I put in my mouth - or not.  It didn't happen overnight that's for sure.  My hair's coarse and falling out, weak brittle nails, joint pain, scaly skin, gingivitis even with great dental hygiene, mouth tastes like metal, can't feel my toes and most of my fingers.  Who knew?  I've got scurvy among other vitamin and mineral deficiencies.  

I had a dental implant done over 5 years ago and finally went in with money in my checkbook to pay for the crown.  That's when I found out what a mess I've allowed myself to become.  The implant should be completely engulfed in bone by now but it's just floating around in a pocket in my jaw like it was done yesterday.

I'm so used to not being able to eat much of anything that I don't even feel hungry most of the time.  I got so sick of smoothies and liquid supplements that I gradually walked away from most nutrition.  What with one life crisis after another I paid no attention to my own health so here I am swallowing handsful of supplements every day.  Better than the alternative I guess.

Anyone out there who's had to deal with malnutrition?  I'm told some of the symptoms like not feeling my toes and fingers may be permanent.  I was seriously zinc deficient a few years ago and my right big toe never did regain feeling.  It could be cut off and I wouldn't feel a thing.  That I can live with; the fingers drive me nuts though.  Typing feels really weird!

[Jaybay]

Actually, I've been cutting down my fentanyl dose for some time and am on a fraction of what I was a year ago.  My goal is to eventually get rid of it altogether and use only norco for the worst days.  I'm not in a big hurry and if I absolutely must, I'll go back on it.  I've just come to the decision that taking a schedule II narcotic is more trouble than it's worth for any number of reasons.

My adhesions did begin with endometriosis but it was a rotten gallbladder that really spelled the beginning of the end.  My body just overreacts to any kind of inflammation and I seem to grow the stuff as if it's being fed Miracle Gro.  I eventually had a hysterectomy (still have my ovaries) that stopped the endo but caused horrific scarring and a bowel resection due to obstruction.  I can't even remember how many adheliolysis surgeries I've had, but it's been about 6 years since my last one - a record!  It got to the point that more surgery will just cause more problems, hence my referral to pain management.

After all these years I can pretty well deal with the pain; it's the nausea/ vomiting that are killing me.  Phenergan works well for the garden variety nausea, but nothing works when I eat.  As time has gone by, I gradually avoided eating altogether.  It sneaks up on you, doesn't it?  One day I realized I'd gone 5 days with only water and sports drinks and made a major effort to improve my nutrition.  It didn't last long but I do take care not go for days with nothing at all.

Tuck, you make an excellent point about malnutrition affecting mentation.  I've taken an antidepressant very successfully for years and it just hasn't worked well lately.  Now that I've done some research on malnutrition I understand why it's not working.  It's so easy to forget that "we are what we eat."  Guess that makes me a big fat zero!  LOL!

[Ashelen]

I am heartbroken to hear that you're going through this, Jaybay! I can't imagine how frustrating it is for you...my dad was going through something similar. It wasn't malnutrition but he was on way too much fentanyl an he couldn't gain weight no matter what he tried..he was CONSTANTLY nauseous, just not hungry...he really suffered for a year and all of his health was declining. he was in horrible pain but he had to stop the fentanyl because it was killing him.

Not that this is the case for you, not at all...but I've seen firsthand what borderline malnutrition does to someone and it's horrible...my heart goes out to you. I hope that they're taking care of your pain while you're going through all of this, you don't deserve to hurt AND deal with everything...hang in there and give the supplements some time to make a difference; make sure you're taking the ones with the highest bio-absorption rate, you can do some research or ask your doctor.

thinking of you and hoping one of your doctors can find a way to help you soon...are you taking pain meds now? If you aren't, I would highly recommend it..i know when my hiatal hernia is acting up I can't eat for WEEKS and I vomit everything back up, but if I'm taking strong enough meds sometimes I can sneak something past it.

[achilles2]

I am sorry you are dealing with so much. Were your adhesions caused by surgery or the bowel obstructions? I am just curious if any doctor has ever mentioned endometiosis as a possibility?

I hope you get the answers you need for your health,

achilles2

[Tuckamore]

Oh Jaybay,

I know that this must be so frustrating for you... I have days, sometimes weeks that I don't care if I make it to 60! I can relate. But we're both strong woman, we'll probably live in misery till were ninety!!

There has to be a better answer for you. When you are malnourished it effects your entire system.. including our emotions. Your body, including your brain needs adequate nourishment. I know you are also an intelligent woman and have seen the best physicians.. please consider yet another opinion.

Yes my body is use to starving... I have to have physical symptoms from not eating in order to make myself eat. I'm working on that but you know how difficult it can be. I am not at the point you are... so keep trying and find something that will stay down. Every now and again a yogurt low fat shake hits the spot for me.  Thank goodness I don't have a dairy allergy!

As I said earlier... we're just a keystroke away. Hang in Jaybay, your special.

((HUGS)))
~Tuck

[Jaybay]

The problem is that I'm so obstructed most of the time that if I push the food it just comes right back up because it has nowhere else to go.  If it does stay down, I'm in for hours of torture so I eat mostly in the evening so as not to completely wreck my daytime hours.  I pretty much know when I can and can't eat after 12 years of dealing with this problem, but most of the time indications point to not eating.  For years while I was still working I couldn't eat anything during the day or I'd spend the day in the bathroom.  I resorted to hard candy and chocolate just to have some energy.  Even smoothies don't always stay down these days.

Tuck, like you I don't even get hungry as a general rule.  Guess our bodies are just used to being starved these days and don't complain any more.  I doubt I'll make 65 at the rate I'm going - and frankly I don't even care.  

[Totie]

I am not malnourished, but am underweight. I eat or should say snack through out the day if possible. Pudding, jello, crackers, trail mix, tuna, deli meat.

I hate eating alone, so dinner is usually dry cereal if I am not to lazy to get it.

I deal with adhesions in the abdominal area as well, or at least that is my theory on why it hurts when I eat.  They did say I had H Pylori & told me that could have been the pain all this time. I must admit, I do feel better than I ever have before. (2 weeks of 3 antibiotics).

I guess I am trying to say is can you try nibbling on things. I do that a lot! It is not much, but it keeps me from getting malnourished. I do take a B12 daily, & Vit D3 as well.

[Tuckamore]

Hi Jaybay,

I just saw your post. I've enjoyed our chats in the past and your contributions to our forum. I try to always get to our "core" ppl as soon as they post so please excuse my tardy response. I am so very sorry to hear about your current condition and the symptoms it has brought.

I have malabsorption syndrome. I have had malnutrition and it's symptoms in the past. Like you I have to eat right and take supplements, including injections of B12. If I get stressed or ill or just tired of all the supplements and "eating right" I quickly get malnourished. I can relate!!

Like you many food make me ill and since the tears, folding and failure of my huge mesh, eating increases my pain. If I am lucky I eat once a day. I'm rarely hungry either. Over the course of a year I've lost lots of weight and have very little left to lose.

What I have come to do, (if this helps) is eat what I want, when I want it. I take all the supplements and so forth to ensure my body gets what it needs to the best of my ability. I've been told my life will be short so I eat what I enjoy and don't make myself miserable by eating what I can't. I often have a degree of the symptoms you describe.

My heart goes out to you!! I wish I had some great suggestions but I don't. Just try to do the best you can... follow your PCPs directions and know that we are here for you!  

Most IMPORATANTLY take care of you. I know it's difficult to put yourself first but you must do that right now. Let the little disasters take care of themselves for awhile. Life would go on if you weren't here.... let it go on with you here.

It'll take time but you should be feeling better if you follow directions.  I also know you recently lost your mom as I recently lost my dad. Have you allowed yourself to grieve? Jaybay be good to yourself! You are a very special person! We care about you and want you healthier!

Do what makes you happy and what brings you peace. I found that a walk along the beach or sitting so my feet could feel the lapping of the waves, or just watching the sunsets was so soothing. Find what does that for you. You'll be in my thoughts and prayers. We're just a keystroke away!

((HUGS))
~Tuck