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Doctors unable to fix.
My mother has been ill for almost 2 years, and doctors can't seem to get an idea as to the problem. She is in and out of hospitals. She has had diarrhea, cramping and nausea. She has lost 65 lbs and now weighs just under 100 lbs. Since this started, she was first diagnosed with not enough bacteria in her intestines. Then, they removed her gull bladder. Then they decided that she had too much bacteria and put on antibiotics. She came out of the hospital with C-Diff and almost died (at which they zapped her heart for an arrhythmia). She returned to the hospital and they then removed her colon. What she collects in her bag is watery stool. It seems like it is not digesting.
She still has cramping, nausea, weight loss, anemia and as of two weeks ago, out-of-control diabetes. She has a loss of appetite and I have lost faith in the doctor’s ability to diagnose her initial problem. She was always healthy and never had medical problems other than an occasional polyp in her colon, which she religiously had checked. Now, they are talking about anti-coagulants. I feel the doctor is just guessing and ignoring the core problem of her digestion so they could focus on anemia and other things that are being caused by her inability to eat.
Please help me before they kill her.
She still has cramping, nausea, weight loss, anemia and as of two weeks ago, out-of-control diabetes. She has a loss of appetite and I have lost faith in the doctor’s ability to diagnose her initial problem. She was always healthy and never had medical problems other than an occasional polyp in her colon, which she religiously had checked. Now, they are talking about anti-coagulants. I feel the doctor is just guessing and ignoring the core problem of her digestion so they could focus on anemia and other things that are being caused by her inability to eat.
Please help me before they kill her.
She should not be released until she is stable, eating and drinking well, and preferably not until she has more normal bowel movements. They should do repeat toxin testing for c diff to see if she still has it and if it is producting toxin. She should also get a colonoscopy when she is more stable. C diff can cause pseudomembranous colitis which can cause infection pockets in your intestines. It make take a while for her to feel normal again. The antibiotic should start to help her bowel movements become more solid. They can also give her questran to bind the stool and help remove the toxins with the bowel movements. If when she finishes the antibiotic she relapses and has more diarrheah then she needs to be put back on it right away along with probiotic. They can then try the tapering method. Which is give her antibiotics then start tapering her dose of them gradually. it will take a while for her to feel normal and she may have ibs for a long time but if she has bad diarrheah than it is likely C diff has returned. She needs to be careful and only take antibiotics in the future only in life or death situation. Antibiotics are what causes this disease to flourish since they wipe out the good bacteria that keep c diff away. Cdiff is usually picked up in a hosptial when a patient has taken antibiotics recently. There is a good c diff support group. google it and look at the site under discussions. I am still praying for her and its best for you to not bring your child around until this is under control and make sure your father washes his hands well and cleans things in the bathroom with bleach ( has to sit 10 min dilute 10 water:1 bleach) that may have been exposed to c diff before she was in the hospital. Also make sure your mom is not reinfecting herself and tell her to wash her hands often .
Thanks for asking... I realized that my reply was sitting there and I forgot to hit "Post Comment".
I have spoken to my father. The original problem, before the gullbladder was H. pylori infection (hosptal number 1). After they treated that, she landed up with an E. Coli. That was in Hospital number 2. In hosptal number 2, she landed up getting rid of E. Coli and getting C-Diff instead and was admitted to hospital number 3. Last week, she had lapsed into a coma and went back to hospital number 1 due to sugar problems and was released days later. Now she is back and they are treating her for defficile infection with vancocin and also giving her probiotics. She has had a couple of other visits that I am not mentioning, but these are the most notables.
My father does not want me to visit her or even go to his house because he is afraid that my 2 year old will get it, and he seems to be right. It seems that the hospital is doing what they are supposed to be doing. It seems that they are taking your advice :)
My final question would be, every time they admit her, she is released still having diarreah and she goes back a couple of weeks later. We were told twice that she would not survive upon readmitting her to the hospital because her condition degrades severely. How do I know when is the proper time for her to be released?
I have spoken to my father. The original problem, before the gullbladder was H. pylori infection (hosptal number 1). After they treated that, she landed up with an E. Coli. That was in Hospital number 2. In hosptal number 2, she landed up getting rid of E. Coli and getting C-Diff instead and was admitted to hospital number 3. Last week, she had lapsed into a coma and went back to hospital number 1 due to sugar problems and was released days later. Now she is back and they are treating her for defficile infection with vancocin and also giving her probiotics. She has had a couple of other visits that I am not mentioning, but these are the most notables.
My father does not want me to visit her or even go to his house because he is afraid that my 2 year old will get it, and he seems to be right. It seems that the hospital is doing what they are supposed to be doing. It seems that they are taking your advice :)
My final question would be, every time they admit her, she is released still having diarreah and she goes back a couple of weeks later. We were told twice that she would not survive upon readmitting her to the hospital because her condition degrades severely. How do I know when is the proper time for her to be released?
Hi just checking on you to see if they have your mom on the appropriate medicine and probiotics.
Just wanted to let you know, I am at an advantage/disadvantage in that I cannot visit my mother since I have nobody to take care of my 2 year old (the last time my father watched my daughter, I had several terrified messages on my cell phone when she dirtied her diaper) and she is not allowed in the hospital. That limits me to working through my dad to help my mom, but also keeps us a little safer. I am going to see him in a few hours and I have a print out of everything I am learning here.
Again, thank you all for the help and support. I am truly blessed for finding you. I will let you know if I find anything.
Again, thank you all for the help and support. I am truly blessed for finding you. I will let you know if I find anything.
Hyperal should not cause above mentioned digestion problems, no matter what is its exact composition.
Try to get her to take some probiotics asap. They have some of these at walgreens or cvs. Florastor, culturelle, align. These will help replenish her good bacteria. It looks like the Cdiff has gotten out of control. If the flagyl is not working they should have her on vancocin only the pills or liquid she that she can take by mouth. Not enough IV vancocin can be absorbed to kill Cdiff. They also could combine flagyl and vancocin and probiotics above. Talk to them about giving this to her asap!!! C diff can wreak havoc with your insides. It is one of those hospital bugs that you never want to get. The regular hand sanatizers at the hospital do not work against it. The only thing that can kill it is bleach standing on surfaces for 10 min. It is recommended to wash your hands for at least 30 seconds with warm water and soap after going to bathroom or touching anything where c diff could be. So make sure you wash your hands after visiting and before you put anything in your mouth. Also wash your clothes in bleach that you wear to the hospital to visit her. I dont want you getting it either. I hope they can give her these meds and maybe she will make a turnaround. Keep her hydrated, tell them to give her vancocin liquid or oral pills. I will pray for you both.
My mother is in the ICU at the hospital. They are now trying to put in a hyperal and they are asking me to make funeral arrangements. I am going to print this page and go to the hospital asap.
Thank you. I really am thankful for this help!
Thank you. I really am thankful for this help!
Gadgetcc your thoughts are organised, now you need to know:
- Antibiotics for treatment Cl-diff often have quite strong gastrointestinal side effects.
- During antibiotic treatment your mother should be taking **Saccharomices boulardii probiotic capsules** that replenish normal intestinal flora killed by antibiotics. Many doctors are not aware of this, so, please check this and ask for these capsules.
- The first antibiotic prescribed in Cl-diff is usually Flagyl but if infection recur several times, some other antibiotic, like vancomycin should be used. Treatment should last as long as prescribed and another stool test for Cl-diff toxin should be made at the end of treatment to be sure that bacteria were eradicated. You need to know that symptoms may be still present at the end of the treatment because of side effects of antibiotics and deranged intestinal flora. Continuing with probiotic capsules for some days after stop of antibiotic treatment may help.
- If you're lactose intolerant, it's possible (not necessary, though) your mother also is. Test is with breath test with lactose. You probably know that lactose is in many foods.
- Like you can safely ingest only limited amount of dairy in lactose intolerance, you can safely ingest only limited amount of fructose, HFCS and sorbitol in fructose malabsorption. Many people have both conditions. If you can't safely eat two pears or apples one after one without experiencing bloating or diarrhea within the next 24 hours, you might have fructose malabsorption. Again, your mother may have it also - in this case she should avoid fruits, fruit juices, fruits, especially dried fruits, anything rich in fructose, HFCS or sorbitol. Dx is with breath test with fructose.
Read about FM:
http://www.medhelp.org/user_journals/show/21247?personal_page_id=801
- Your mother's intestine is likely highly irritated by all these infections, antibiotics and possibly inappropriate food, so she might be temporarly intolerant to some other foods, especially sugars.
Lactose-free + low-fructose + low-sugar diet = "Low-FODMAP diet" or simply "low-sugar diet".
Is she in the hospital now?
H. pylori affects stomach and duodenum and usually doesn't cause diarrhea but it can cause bloating below the breastbone, excessive belching and early satiety. Diagnosis is by "urea breath test". I believe that, in her situation, stool test for H. pylori, which is commonly performed, might not be reliable, so, if you two ask for "urea breath test" for H. pylori.
Small intestinal bacterial growth (SIBO) may cause the same symptoms as H. pylori + diarrhea (both sometimes cause sulphur burps or gas), and it can be confirmed by hydrogen breath test with lactulose (or other substance).
Like you see, all listed conditions can be diagnosed by special breath tests done by a gastroenterologist. Other investigations like blood test (except in H. pylori), MRI, colonoscopy, etc. would show no changes in mentioned cases.
If it comes out that nothing of above would help, she can ask for capsule endoscopy of the small intestine - she swalows a capsule with a camera in it and pictures obtained this way are then checked on the computer.
One step at the time :)
First, ask doctors about Glucerna and remind them it contains fructose.
- Antibiotics for treatment Cl-diff often have quite strong gastrointestinal side effects.
- During antibiotic treatment your mother should be taking **Saccharomices boulardii probiotic capsules** that replenish normal intestinal flora killed by antibiotics. Many doctors are not aware of this, so, please check this and ask for these capsules.
- The first antibiotic prescribed in Cl-diff is usually Flagyl but if infection recur several times, some other antibiotic, like vancomycin should be used. Treatment should last as long as prescribed and another stool test for Cl-diff toxin should be made at the end of treatment to be sure that bacteria were eradicated. You need to know that symptoms may be still present at the end of the treatment because of side effects of antibiotics and deranged intestinal flora. Continuing with probiotic capsules for some days after stop of antibiotic treatment may help.
- If you're lactose intolerant, it's possible (not necessary, though) your mother also is. Test is with breath test with lactose. You probably know that lactose is in many foods.
- Like you can safely ingest only limited amount of dairy in lactose intolerance, you can safely ingest only limited amount of fructose, HFCS and sorbitol in fructose malabsorption. Many people have both conditions. If you can't safely eat two pears or apples one after one without experiencing bloating or diarrhea within the next 24 hours, you might have fructose malabsorption. Again, your mother may have it also - in this case she should avoid fruits, fruit juices, fruits, especially dried fruits, anything rich in fructose, HFCS or sorbitol. Dx is with breath test with fructose.
Read about FM:
http://www.medhelp.org/user_journals/show/21247?personal_page_id=801
- Your mother's intestine is likely highly irritated by all these infections, antibiotics and possibly inappropriate food, so she might be temporarly intolerant to some other foods, especially sugars.
Lactose-free + low-fructose + low-sugar diet = "Low-FODMAP diet" or simply "low-sugar diet".
Is she in the hospital now?
H. pylori affects stomach and duodenum and usually doesn't cause diarrhea but it can cause bloating below the breastbone, excessive belching and early satiety. Diagnosis is by "urea breath test". I believe that, in her situation, stool test for H. pylori, which is commonly performed, might not be reliable, so, if you two ask for "urea breath test" for H. pylori.
Small intestinal bacterial growth (SIBO) may cause the same symptoms as H. pylori + diarrhea (both sometimes cause sulphur burps or gas), and it can be confirmed by hydrogen breath test with lactulose (or other substance).
Like you see, all listed conditions can be diagnosed by special breath tests done by a gastroenterologist. Other investigations like blood test (except in H. pylori), MRI, colonoscopy, etc. would show no changes in mentioned cases.
If it comes out that nothing of above would help, she can ask for capsule endoscopy of the small intestine - she swalows a capsule with a camera in it and pictures obtained this way are then checked on the computer.
One step at the time :)
First, ask doctors about Glucerna and remind them it contains fructose.
They said that they are treating her again for the defficile infection. I am looking for another gastroenterologist now. They are rehydrating her via an iv.
I also am thinking hard about the diet. They are still giving her those Glucerna shakes like crazy. She has been downing those things like crazy since day one and they actually do have fructose. Those things always made me sick, but I always thought that with me it was mental. I am lactose intolerant and can only eat small amounts of dairy. The label on glucerna says "CONTAINS MILK AND SOY INGREDIENTS; GLUTEN- AND LACTOSE-FREE", but I never wondered if I was having a fructose malabsorption problem. Maybe she is.
Oh, forgot to add. They tested her pancreatic function and said that it was okay, and they also said that they tested for celiac disease and there was no sign of trouble there either. That left me with three things to look at, - fructose malabsorption, small intestinal bacterial overgrowth and H. pylori infection. Three items that I have never heard of.
Sorry if I sound confused and fragmented. I have a two year old who is ACTIVE AND HEALTHY and I work, so I am trying to sneak this in while working and I have been waking up at 4am to see if I can make progress and do my research.
I really do appreciate all the help everyone is giving me on this. I really did not know where to turn.
I also am thinking hard about the diet. They are still giving her those Glucerna shakes like crazy. She has been downing those things like crazy since day one and they actually do have fructose. Those things always made me sick, but I always thought that with me it was mental. I am lactose intolerant and can only eat small amounts of dairy. The label on glucerna says "CONTAINS MILK AND SOY INGREDIENTS; GLUTEN- AND LACTOSE-FREE", but I never wondered if I was having a fructose malabsorption problem. Maybe she is.
Oh, forgot to add. They tested her pancreatic function and said that it was okay, and they also said that they tested for celiac disease and there was no sign of trouble there either. That left me with three things to look at, - fructose malabsorption, small intestinal bacterial overgrowth and H. pylori infection. Three items that I have never heard of.
Sorry if I sound confused and fragmented. I have a two year old who is ACTIVE AND HEALTHY and I work, so I am trying to sneak this in while working and I have been waking up at 4am to see if I can make progress and do my research.
I really do appreciate all the help everyone is giving me on this. I really did not know where to turn.
It is possible that Clostridium difficile infection wasn't treated completely. Like said above, try to get another gastroenterologist, arrange that he will get all medical documentation about your mother. Do this soon.
In meantime, she should drink enough water to avoid dehydration. Maybe she should try some blend solid food like bread, rice, chicken, pasta, cookies. She should avoid fruits, dairy and sugary foods.
In meantime, she should drink enough water to avoid dehydration. Maybe she should try some blend solid food like bread, rice, chicken, pasta, cookies. She should avoid fruits, dairy and sugary foods.
They have just come out with a diagnosis of clostridium deficiency.
She was actually taking flagyl. They kept taking blood and stool every couple hours since she was expected not to survive.
She was actually taking flagyl. They kept taking blood and stool every couple hours since she was expected not to survive.
"Please help me before they kill her."
If she is still physicly able...Start with a fresh set of Doctors...And start 1st with a new gastroenterologist....A doctor trained By Robert Wood Johnson residents , may have a totaly differint approach to the same problem as one trained by residents of The Mayo Clinic, for example....It's not unlike any other kind of learning...In history a professor may center his curriculum around George Washington being a military genius, while others would say he was a horrible tactician and was just lucky the boy's in the south were able to hold out against Cornwalis for so long...
A doctor who only guides his treatments based on something he learned from a book or was taught by the residents who gave him hands on training, is far less likely to ever develop a useful hypothesis in a confusing case...where as a doctor taught to think on his feet and to take an occasional risk might just come up with something of real value...
I can't tell you how to pick such a doctor nor tell you that you'll find one in time to save your mom...but it seems clear her current Doctor is at the end of his diagnostic rope...
Prayers go out....
If she is still physicly able...Start with a fresh set of Doctors...And start 1st with a new gastroenterologist....A doctor trained By Robert Wood Johnson residents , may have a totaly differint approach to the same problem as one trained by residents of The Mayo Clinic, for example....It's not unlike any other kind of learning...In history a professor may center his curriculum around George Washington being a military genius, while others would say he was a horrible tactician and was just lucky the boy's in the south were able to hold out against Cornwalis for so long...
A doctor who only guides his treatments based on something he learned from a book or was taught by the residents who gave him hands on training, is far less likely to ever develop a useful hypothesis in a confusing case...where as a doctor taught to think on his feet and to take an occasional risk might just come up with something of real value...
I can't tell you how to pick such a doctor nor tell you that you'll find one in time to save your mom...but it seems clear her current Doctor is at the end of his diagnostic rope...
Prayers go out....
Nutrients that commonly cause burping, bloating, diarrhea and gas:
- fibres in large amount
- lactose
- fructose and HFCS
- sorbitol
If there is a lot of above nutrients in Glucerna (check label) this may aggravate her symptoms.
To avoid these symptoms, low-sugar (the so called "low-FODMAP") diet would help, if the cause of her symptoms is in the food. Regarding she's diabetic, she should ask a diabetitian for diet advice, though.
Was she checked for:
- lactose intolerance (or they just said to her "avoid milk"? Did she have complete lactose-free diet or was she avoiding milk only?)
- fructose malabsorption
- small intestinal bacterial overgrowth
- H. pylori infection
- celiac disease
- pancreatic function
There are tests for al above conditions, gastro doc can perform them.
Did she have capsule endoscopy of the small intestine?
- fibres in large amount
- lactose
- fructose and HFCS
- sorbitol
If there is a lot of above nutrients in Glucerna (check label) this may aggravate her symptoms.
To avoid these symptoms, low-sugar (the so called "low-FODMAP") diet would help, if the cause of her symptoms is in the food. Regarding she's diabetic, she should ask a diabetitian for diet advice, though.
Was she checked for:
- lactose intolerance (or they just said to her "avoid milk"? Did she have complete lactose-free diet or was she avoiding milk only?)
- fructose malabsorption
- small intestinal bacterial overgrowth
- H. pylori infection
- celiac disease
- pancreatic function
There are tests for al above conditions, gastro doc can perform them.
Did she have capsule endoscopy of the small intestine?
What did they give her for the c diff? Have they rechecked for it using multiple stool samples sent immediately to the lab when taken? They must be sent immediately or refrigerated since the toxins die fast at room temp. This is a bug that can be hear dto get rid of and can cause all of these symptoms. Some people have to be on antibiotics for many many months for it and even then not all cases are eradicated. Then you run the risk of getting it again anytime you take more antibiotics except for flagyl and vancocin which helps to cure it. Most people with C diff have to take probiotics ( good bacteria) such as florastor, culturelle, and align to get some good bacteria back in the stomach to make them feel better. I would see if she can start on a few probiotics to repopulate her gut with good bacteria. These can be found at a lot of drugstores or online.
She has had excessive amounts of gas and burping since day one. She hasn't been able to find any one type of food that causes the problems. They took her off of milk and put her on soy, and it didn't help. She landed up drinking lots of glucerna just to get her nutrients.
As for her her diabetes, she was type II diabetic and it was under control with a minimum amount of medicine until two weeks ago when it dropped to 27 and we had to get the paramedics over to revive her. Since then, she is taking insulin and testing her sugar 4 times a day.
As for her her diabetes, she was type II diabetic and it was under control with a minimum amount of medicine until two weeks ago when it dropped to 27 and we had to get the paramedics over to revive her. Since then, she is taking insulin and testing her sugar 4 times a day.
Has she had diabetes before? Type I or II ? This should be checked by endocrinologist as soon as possible.
What does she eat? Does different foods have different effect on stool consistence? Has she, in past 2 years also experienced early satiety or excessive burping? Sulphur burps maybe?
What does she eat? Does different foods have different effect on stool consistence? Has she, in past 2 years also experienced early satiety or excessive burping? Sulphur burps maybe?
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