Posted 1/2/2011 9:14 AM (GMT -6)
Wow, it sounds like you've had a bad hopefully 2011 will be your year to get healthier :) I'm glad you were able to get off the TPN, but how are you going to get your nutrition then? I know you mentioned the feeding tube but after two and a half years of nothing substantial in your stomach, can a stomach just start "working" again??

I can tell you one thing, I am glad 2010 is over! I have had quite the year myself so I am hoping that 2011 will bring me good health as well!
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)
Posted 1/4/2011 12:07 AM (GMT -6)
Actually, 2010 was better than 2008 or 2009 - at least I stayed out of the hospital in 2010!

As for how I'm getting nutrition, well I am able to eat small meals now with the help of a medication that helps my stomach to work better (prokinetic agent). No, the stomach can't just suddenly start working normally after not getting any food for a long time, it is a gradual process.

Once I finally was able to get past the constant nausea, I started chewing gum and sucking on hard candy to help get my swallowing reflex back and re-train my mouth and throat to swallow more normally. Up until this point, I had all sorts of problems with swallowing and I credit the chewing gum with helping the most, actually...

Gradually I worked my way from the candy & gum (Spring of 2009) to small bites of food (Summer 2009), and then started the weaning process off the TPN because I began to be able to eat a small meal at least once or twice a day. The TPN weaning took months because it cannot be stopped suddenly when one has been on it as sole source nutrition for as long as I was. I encountered a few bumps along the road and had to stop weaning the TPN briefly in the Summer of 2010. But by late November 2010, I was off completely and am hoping never to go back to it!

Thanks & take care,

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, UCTD, Osteoporosis, etc.; G-Tube
Meds: Ceftin, Singulair, Claritin, Domperidone, Milk Thistle, homeopathy, probiotics, etc.
Posted 1/4/2011 2:23 PM (GMT -6)
Razzle -
How can you tolerate IV feeding? I thought all the preps have a lot of sulfite. Are the feeding tube foods ok in that regard? I was worried when I had a bout of diverticulitis and was told I might have to have TPN. That was the main reason I refused sigmoid colon surgery.
Posted 1/10/2011 12:21 PM (GMT -6)
There are sulfite-free TPN base formulas, so that was what they used for me (after I made a huge fuss about the sulfites when I was still in the hospital, LOL!). I also had my doctor order the pharmacy to add molybdenum to the TPN formula to help support sulfite processing.

If you do ever need TPN, then make sure to be careful to read the label on the bag they hang for you to make sure it says it is sulfite-free - sometimes there are issues with communication about sulfite allergy/sensitivity because the pharmacy uses software that may not have an option for sulfite allergy, so they may put it in a comments section that not all the pharmacy workers may look at prior to filling your prescription.

Also, watch out for the TPN lipids (fats) liver hated every drop of lipids ever given via IV (I think it is thanks to my soy allergy; all TPN lipid formulas contain soy oil), so I finally had to do without the lipids in the TPN. I'm still recovering from the fatty acid deficiency caused by this lack of fats, but I'd rather deal with that than what the soy oil was doing to my liver...

The feeding tube formula I get from Canada is free of corn syrup and is unflavored, and I don't seem to have sulfite issues with it. All of the formulas for tube-feeding available in the US have corn syrup in them (read: loaded with sulfites!!!) and also they are flavored with artificial flavoring (read: loaded with sulfites, possibly also contain gluten).

Feel free to ask further questions about TPN...

Take care,

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, UCTD, Osteoporosis, etc.; G-Tube
Meds: Ceftin, Singulair, Claritin, Domperidone, Milk Thistle, homeopathy, probiotics, etc.
Posted 1/10/2011 7:58 PM (GMT -6)
Wow, Razzle! Thanks for the tip that there are sulfite-free TPN. I'm fairly likely to have another episode of diverticulitis, and if it's a bad one will need TPN for sure. With the last one I had nothing to eat, not even an ice chip, for 4 days. I fussed over the IV when I found that I was switched to D5saline from straight saline, but I did the calculation and for the amount I was getting it was within my tolerance.

I'll never see that surgeon again. He switched me without discussing it with me. He clearly didn't believe me about the sulfite sensitivity, which was what brought the mess on in the first place! (got severe, explosive diarrhea because of eating too much sulfite that day, popped a little hole in a diverticulum)

Then I was more or less forced to eat Prosource Liquid Protein - hydrolyzed collagen, I suspect porcine. It was drink the stuff, no matter it's gaggingly awful tasting even mixed in juice, or get TPN, which scared me. I know I don't tolerate gelatin - basically the same as the ingredients in the Liquid Protein. Pork = sulfite. I can't eat ham or saussage either. I didn't drink as much as they wanted me to and asked for the IV to be turned way down.

Next time I'll go for the TPN, but insist on sulfite-free labeled.
Posted 5/4/2011 5:26 AM (GMT -6)
I did a search for histamine intolerance which led me to this thread.  I want to add something intolerance most certainly involves an autoimmune response, maybe not in everyone, but definitely in some people.  I have an autoimmune response to my intolerance's.
Celiac disease alone is an autoimmune syndrome caused by an intolerance to gluten.
So, for those of you speaking about sulfites in IV's...what are some of your reactions?  I had a hysterectomy in Aug of 07 and I broke out in a horrible case of hives.  Actually, the hives were much worse than the surgery itself.  The hives were concentrated on my bottom and the back of my upper legs though, so we thought it may have been an intolerance to the iodine in the antiseptic.  We probably will never know.
Do any of you have histamine intolerances which cause you difficulty with medications?
Gluten Intolerant, Small Fiber Sensory Polyneuropathy, Gluten Ataxia, Sleep Apnea, CFS, Raynauds, Hypothyroid, Fibromyalgia
Posted 5/4/2011 10:49 AM (GMT -6)
Ask the doctor for a list of all medicines you received during the surgery. You have a right to your records. It's been a long time, but the intra-operative report should still be available.

I react with hives to the Cipro group of antibiotics (Avelox, etc.). I get tachycardia and gastric reflux with sulfites - one time so bad it triggered a cardiac artery spasm heart attack.

I get sick with some of the oral and IV contrast media, but not the iodine ones. I can't tolerate the preservatives and flavors, which contain sulfites. Maybe your allergist can help. You should be able to get a small skin test for the iodine.

Histamine is a whole other subject. I don't tolerate the meds that produce that either, but I think it's due to post-polio syndrome and fibromyalgia. Some of those meds have preservatives too.
Posted 5/23/2013 9:36 PM (GMT -6)
Hi I have just joined the chat room and I am hoping that Razzle will reply to me.  I have Lyme Disease and my most difficult symptom to deal with currently is my severe gastroparesis which has left me unable to eat for a period of time 3 times in the past 3 years. My GI motility problem waxes and wane, and can be anywhere from beginning(swallowing) to end(bowel output). My most recent bout lasted 7 weeks.  The doctors have been weighing the pros and cons of a the variety of feeding tube options, but the crux of the problems lies with my food allergies, intolerances, and/or insensitivities.  I am amazed that TPN/PNN formulas in the United States contain corn based sugar and egg is the protein source, as these two foods are among the most common food allergens.  I cannot tolerate either in my diet.  Razzle mentioned in a 1/10/2011 post that a corn free TPN solution was being  purchased in Canada.  Can you provide the contact information?  Are there any issues with importing the TPN solution and having it administered by a US home health care company?
MD Scouter
Posted 5/25/2013 3:54 AM (GMT -6)
Hi MD Scouter,

I'm sorry you have the Gastroparesis/GI dysmotility with your Lyme - it sux doesn't it?

For clarification, TPN goes into a vein, and tube-feeding formulas go into the stomach or small intestine. Thus, TPN has to be much more pure than tube-feeding formulas.

The formula I was talking about is not for TPN, it is for tube-feeding. And it is not 100% corn free, it is just free of corn syrup. The maltodextrin in it is derived from corn.

Companies who make these tube-feeding formulas don't usually care about people with food allergies. They're in it to mass-market the product and make it for a very cheap cost so they can make a lot of money. If you want suitable food that is allergen-free, you have to either pay a ton to have it custom compounded, or make it least, this is what I have figured out...

I'm also allergic to eggs, but TPN seems ok for me. TPN has to have free-form amino acids as the protein source, and the amino acids are purified so that they don't contain any peptides or whole proteins from the source.

This is the tube feeding formula I was buying from Canada:  I never had any trouble importing it.

The home health care company was not willing to help me with this because they were not supplying the formula, so I was buying my own supplies and doing my own feedings (bolus feeding, so I was using syringes instead of a pump & bag setup).

Unfortunately, the formula from Canada started to make me sick to my stomach so I can no longer us it. I have yet to find another suitable replacement.

And now I'm back on TPN from another Gastroparesis/small bowel dysmotility flareup...ugh.
For more info on how Lyme messes up the gut, see

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube
Meds: Flagyl, Domperidone, Zofran, Claritin, Andrographis & other herbs, homeopathy, supplements, etc.
Posted 5/31/2013 2:37 AM (GMT -6)
Hi  Razzle
Thank you for your prompt reply.  I am seeking TPN/PPN formula, as the GI motility specialist told me that there is no point to using a nasal gastric tube, a feeding tube into my stomach, nor a feeding tube into my small intestines if the GI tract is paralyzed.  He told me that my only real option for supplemental nutrition would be through my veins.  I do understand that this type of feeding needs to be sterile, but also for me, it needs to be hypo -allergenic. 
I began to develop an allergic reaction(started to go into anaphylaxis shock) from a Ringers Lactate 5% dextrose IV solution that I was being given in the ER back in October 2012.  I received confirmation today of the ingredients from the pharmaceutical company
sodium chloride, potassium chloride, and hydrochloric acid contain trace amounts of iodine
dextrose and sodium lactate were derived from corn that was fermented in yeast
iodine, corn, and yeast were on my list of allergens that I provided to the ER staff upon admission
I have been able to eat for the past 2 weeks, but it takes an amazing amount of digestive enzymes to break down the food(I have pancreatic insufficiency) and some magnesium citrate to help move the bowels
MD Scouter
Posted 6/1/2013 8:31 PM (GMT -6)
Hi MD Scouter,

I'd suggest contacting InfuServe (a home infusion company) and discussing your allergies to IV ingredients derived from corn & yeast to see if they know of any options readily available that would be safe for you.

Or you can try one of the larger mainstream home infusion companies, such as Coram.

If either of these companies are not able to help you, then I'd suggest contacting a compounding pharmacy in your area that can compound sterile products for IV use about your allergies and if they can make a special TPN formula that would be safe for you.

I hope this helps. If you'd prefer to continue our discussion off this board, you can click the envelop icon below my name (at the left) to find my email address.

Take care,

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube
Meds: Flagyl, Domperidone, Zofran, Claritin, Andrographis & other herbs, homeopathy, supplements, etc.

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