Stoma stretched? Celiac disease? Vitamin deficiency? Dehydration? What the heck is going...

I am about 16 months post op. The last month or so I have been increasingly hungry. It is to the point where I feel like I am starving, I never feel full, and I feel ravenous within 15 minutes of eating. I recently had a lot of tests run on me, including my full blood work up. I am deficient on vitamin D and zinc. My urine showed signs of being dehydrated, so I am upping my fluid intake and cutting out caffeine (slowly, but still trying). I had a liver scare awhile ago, which turned out to be a clumping of blood vessels in my liver, but I was told it should not cause problems. Now I am showing several signs of possible liver damage, such as itchy skin, bloating, fatigue, and bilirubin being passed in my urine. My doctor was also suspicious that I could have celiac disease since I have chronic diarrhea (gross, sorry), stomach aches, fatigue, etc.

So, I know I am asking a lot, but has anyone else gone through similar symptoms? I am scared that I have stretched my stoma and so I don't feel full ever. But I read that people with celiac disease can also experience ravenous hunger, and I think liver damage can also cause weird appetite fluctuations. And obviously dehydration can mimic hunger.

On top of the hunger and non-stop food cravings, I can hear liquid funneling out of my stomach. I don't know exactly how to describe it. When I am drinking fluid regularly, as I am trying to now, I can hear what sounds like water being sucked down a drain - that kind of gurgle sound that happens when a bathtub or sink drains. I worry this is another sign my stoma may be stretched, as the fluid is running out faster than it should. Maybe I am crazy. Anyone else relate to this sound?

Thanks in advance for any of the assistance I receive. I want to add that I am deficient on a few things because for a couple months I was unable to take any vitamins. I was very ill and was on antibiotics (and large doses) and pain meds for almost two months. My pharmacist said not to take any vitamins, as they may cause problems. So apparently a two month break from vitamins can really kick you in the butt!

Oh! Also wanted to add that I have gained about 5 pounds in the last couple months as well. My stomach is bloating all the time. After I eat, I literally look like I am 6-8 months pregnant and I stay that way for hours. My mid section has seemingly ballooned out again, and it is really depressing. I have not been as careful with my diet as I should be, but the weird bloating and other things are all new within the last 2-3 months.

We should talk.  I am having similar problems.  If you message me I will give you the whole low down. 

I have lots of questions.

Are you lactose intolerant?  The diarrhea and stomach bloat can be caused from lactose.  If you use protein powder, make sure it is a whey isolate and does not contain whey concentrate.  Also try mixing it with water, almond milk or soy milk.

What kind of vitamin D do you take?  We need to take dry D3.  If it is in a gel cap or prescription D2, we don't absorb them very well.

Are you drinking at least 64 ounces daily?  I must drink at least 120 ounce for my body to function.  If I don't I have problems with my bowels and I get leg cramps.  Everyone is different.  You have to experiment until you find your own balance.  Thirst can mimic hunger.  Try drinking instead of eating when you feel hunger.  If, in twenty minutes, you are still hungry eat a small, healthy snack.

Are you eating processed carbs (like bread, crackers, cereal or pasta) or white carbs (like potatoes and rice)?  If you are, that may be causing your bloating and contribute to the diarrhea.  Excess refined carbs can also make you feel very hungry and cause terrible cravings. You will also gain weight if you don't control the carb intake.  If you detox on the refined carbs, the cravings will stop.

My pouch makes a lot of noise.  I know that my surgeon warned me that it would likely be that way forever.  Since I don't hear how noisy yours is, I can't really say if it's normal or not.  Our pouches are basically funnel with no valve on the bottom.  Liquids flow right through us.

Are you on an acid reducer? Sometimes excess stomach acid acts like hunger.  You might want to ask your doctor for a PPI if you are not already on one.  If you are, maybe you need a stronger dose.

The itchy skin could be from a lack of good fats in your diet.  Try adding a handful of almonds or an avocado to your diet.  It could also be from a vitamin A deficiency.  I eat a full fat diet (cheese, butter, oils) and my skin improved greatly.

It would take some serious over eating to stretch your stoma.

I am lactose intolerant and I rarely consume dairy of any kind. I do not need to drink protein shakes anymore, so that's not applicable.

I take a dry D3. I use the citrical petites with D3, 6 pills a day. I also take my multivitamin which contains D3 twice a day. My levels have always been perfect until recently because I had that period where I couldn't take my vitamins.

I AM eating processed carbs and white starches. I know it is awful, but I have gotten SO bad about letting in the carbs. Noodles, crackers, chips, etc....I am starting to try the gluten-free diet, and it is really hard. Like, REALLY hard. It doesn't help that my sons have autism and sometimes crackers are literally the only thing they will eat (both have sensory processing disorder as well). This is something I need to work on.

My doctor had me on a PPI for awhile to see if it helped with my stomach aches, diarrhea, etc. I was having really bad stomach pains, to the point where I felt like I couldn't breathe. She thought I might have acid issues. I saw no improvement when taking them, so I stopped taking them, and eventually the pain went away on their own.

I have been really bad about drinking enough water. I am sure I drink at least 64 ounces of liquid a day, just not the right kinds. I drink coffee and diet soda, as well as water and crystal light. I am working on cutting out the soda, with the coffee to follow. I get really nasty headaches when trying to cut out caffeine. Since I have been experiencing extreme fatigue lately, I have been drinking more coffee and soda. I know both of those are dehydrators, and I know it is a problem.

I eat plenty of fats, I think. I mean, I use olive oil or coconut oil when cooking, and regularly eat cheese and peanut butter. So I wouldn't think that is the issue.

I am scared that if I have celiac disease or liver problems that could be disguising themselves as hunger, that I have been overeating because I always feel hungry, and I am not able to know when to stop. That sounds so irresponsible on my part, I know. But when I eat a serving size, I still feel exceptionally hungry. It's literally painful how hungry I get. So I feel kind of lost. Today I made it my goal to drink and drink and drink and drink (no soda and only one cup of coffee) in between meals to see if that helps. I don't know if I am just at the point now where my hunger is going to be stronger because I am at the end of my honeymoon phase...whatever it is, it is causing me to struggle.

I have an appointment with a GI specialist tomorrow to discuss my concerns. I hope I get some answers! Thanks for your feedback and taking time to ask questions!

I think you might have issues with artificial sweeteners.  Diet soda has lots of sugar alcohols that can cause gastric distress such as diarrhea and bloating.  

Studies have found that the "caffeine is a diuretic" theory is mostly false.  It does have some diuretic properties...but not enough to worry about.  If you are drinking so much that you are having caffeine withdrawal headaches, maybe you are drinking too much.  The headaches go away after a few days after you stop drinking the caffeine.  You just have to do it!

I eat very little with gluten in it.  I do have a gluten sensitivity.... very different from Celiac disease.   I found that once you cut out products with gluten, you stop craving it.  It's difficult for a few days.. and then it gets much easier.  There are a number of websites with GREAT recipes.  There is also a magazine called "Living Without" that is good.  I use some of my own recipes and substitute almond flour and coconut flour for wheat flour. 

You might want to have your doctor check for other food sensitivities.  Corn allergies can mimic Celiacs too.

Good luck with your appointment tomorrow.

I do not think you are taking enough D3. I take what you are taking plus an extra 10000 IU per day.

Sorry you are having so many problems. Hopefully you can get your body in proper working condition with medicine and vitamins quickly. I wrote because I gurgle liquids, too. It is regular to me now since I am used to hearing it. I never thought anything was wrong with me since I drink fast and the fluids flow through my pipes quickly due to the surgery. 

Sounds like you could start with simple bariatric basics: 60-80 grams protein a day- PERIOD!!  No excuses.  Protein first every meal or snack.  I am 5 years post RNY and I have a hot whey isolate protein drink every morning( I get 100 gm protein a day).   Also, you need 80+ ounces of non-caffeine fluid a day, you need vegetables & fruit.  OMIT the "white" food - crackers, chips, bread, white rice & potatoes, pretzels, cookies, cereal, cake, etc. - basically flour & sugar.  Diet soda users are shown to have a greater urge to eat sweets & gain weight.

You need to keep a food diary - weigh/measure food.  Keep track.  Add totals after lunch so you can plan your evening. Look at food labels for serving size and grams carbs, sugar, fat, etc.  Be aware of what you are putting in your mouth and whether it will help vital organs like your brain, heart, liver, kidneys to function.  High calorie-low nutrition food won't give your body the nutrition it needs to function.

I can hear liquid moving from my pouch through my intestines, too, and that is fairly common.  I doubt you have stretched your stoma.  Many junk foods tend to go through the pouch easily and quickly.  Eating whole protein, veggies & fruit stay in the pouch longer and keep us feeling full longer.  Take small bites and chew each bite 20 times or so.

I can't imagine a pharmacist telling you to stop vitamins.  A pharmacist is not a bariatric doctor.  Did you call your bariatric doctor and get their consent to stop supplements?   Of course you will be deficient if you aren't taking supplements, and not eating a bariatric diet with protein minimums.

Taking antibiotics will kill all the "helpful, good" bacteria in your gut that we need for digestion and bloating/gas/constipation/diarrhea may result.  Also taking high doses of pain medications can damage the liver.  Eating "junk" and highly processed foods are also not optimum for liver function.

No "pill" can replace bariatric eating plan with supplements.  RNY also doesn't change our thoughts or cause us to "choose" how we behave.

It sounds like your eating habits are not good and your fluid intake is not adequate to meet the needs of your body.

You may need to draw a line in the sand and say "today" is the day I take my life back and go back to eating the bariatric food plan that my body needs.  I agree with previous comments about omitting carbs and your body (not your mind) will stop craving them. 

Many of us crave food that is not nutritious fuel for our body.  I don't let "feelings" rule me.  I often ask myself "how soon is my next scheduled meal?" or "how long since I last ate?",  "will what I'm craving feed my body & vital organs with the nutrients I need?"  It takes time to tell head hunger from real hunger - but they are not the same.

I'm sorry for going on and on.  I wish you the best. 

Penny

Penny,

I absolutely appreciate everything you have said. And for the most part, you are right. I did draw that line in the sand a couple days ago. I decided to face my choices and change them. How else am I going to know if there is a real medical concern or something in my diet that is causing symptoms (not saying poor diet isn't a health concern, but it isn't liver failure)? I started tracking my food again. My doctor (surgeon, family, and therapist) say they don't like it when I track because I can become obsessed. I get very rigid in my rules for myself. I would rather go hungry then go over my calories by 10. I have very black and white thinking when it comes to tracking, but I think at this point, I need to track for awhile so I get back in the habit or recognizing immediately how bad some foods are.

I get at least 60 grams of protein a day, easily. My protein intake has never been a concern and my protein levels have always been excellent. After dinner tonight, I will be at 84 grams of protein for the day. I weight 151 pounds, so that is plenty of protein for my size.

I had liver problems a long time ago. It started with elevated liver functions for no apparent reason. I went through scans all sorts of stuff and it turned out that I had developed a clot of blood vessels in my liver. It was a result of the birth control I was taking. I went off the birth control, but there was no reversing the damage to my liver. It was hoped that nothing further would happen, but there was no guarantee. So although my diet may not be helping, it certainly did not cause my liver problems.

Overall, my eating habits are fair. I still eat protein at every meal. This morning I had an egg and cheese omelet. I was hungry within 10 minutes...like, absolutely ravenous, painful hunger. That was protein, not junk food. So although it makes sense that I will feel hunger more quickly after eating poorly, and that junk food slides out faster, I don't see that being true for this. Same with last night - I had chicken breast for supper, and I was hungry the entire time I ate it, and after. I never felt relief. It was really bizarre because usually chicken is a miracle cure for hunger for me.

As for the vitamin situation - I trust my pharmacist. I work closely with him, he knows my history, he knows my medications. He spoke with my doctor to discuss my needs. I was very ill, with frequent changes in medication, I trusted a licensed and trained pharmacist to tell me what was safest for me. Yes, I have a zinc and vitamin D deficiency now (zinc is only one point off from normal, but vitamin D is moderate). But I would rather have this for a couple months than something potentially more damaging to my well being that couldn't be reversed with increasing vitamins.

I am definitely doing my best to fight the head hunger, to cut out soda, to cut out the white foods, and to track all my food. It is hard. But I am doing it because I need to.

Thanks for the advice!

Amanda