How to recognize warning signs? Will I need a J-tube?

[tarheel78]

I am a 35 year old mother. I have been struggling with eating and drinking liquids for almost 3 months. I have been home a little over a week, after being discharged from a weeklong admission in a nearby hospital.

I was diagnosed with gastroparesis, most likely caused by a stomach virus. I have lost a little over 40 pounds and still unable to eat any foods at all. My doctors told me to make sure that I drink 1.5 L of liquid a day to maintain good kidney function. I am able to get that amount by slowly sipping all day long - but it is a struggle as I am so bloated and nauseous feeling. I am still unable to handle any foods  - I have tried a few spoonfuls of soup broth - but even that does not settle well with my stomach. I have no appetite.

My strength had decreased. I feel extremely tired and fatigued, in fact if I layed down I think I could go right to sleep no matter what time of day. My urine yesterday and today had decreased to 2 times a day and had become a dark yellowish orange color.

I am currently taking: Zofran, Reglan, and Rumitran (?) to help with nausea, stomach emptying, and sleep.

Am I in danger of needing a feeding tube? What can I do to increase my energy level? I've tried sipping on a Boost and Vitamin Waters but even they made me feel much worse and led to vomiting.

Please help. I am so frustrated.

[tarheel78]

Went to the ER and was admitted for nearly 2 weeks to receive iv fluids, get a G-J feeding tube, and begin feedings.  Am now at home, still in pain and discomfort, but having less nausea and dizziness. Also less lethargic since I am now getting some nutrition. I am still a work in progress as I can only tolerate 35 mL of formula per hour for 12 hours as anymore than that makes me feel too sick.

[tarheel78]

Thank you. I am keeping a daily detailed record of my input and output. It's pretty easy to do right now since there is not much data for either.

This morning was even worse than yesterday. I could not tolerate Tylenol for my pain and between 6 and 1 I have only tolerated about 50-75 mL of Gatorade. I also have had no output. This is new to me and extremely scary. I have emailed my doctor (which I think is great), but am awaiting a reply. My parents believe that I may need to go back to the hospital to get iv's possibly, my husband doesn't seem to think the hospital will be able to do anything - that it's just a waiting game now, and I have NO IDEA. Part of me thinks that I might should go and see if an IV will help me perk up a little. Hopefully the doctor will be able to give me some guidance.

I feel so lost and frustrated. I just want to get back to my normal life.

[syralia]

*hugs*

I am a gastroparesis sufferer, there are actually many of us out there and things can be very confusing and scary when you feel like you are going through all of this alone, but there are online support communities that can help you deal with everything that is going on.

There are other options besides feeding tubes to help treat the symptoms of Gastroparesis, such as botox injections to the pylorus, an electrical gastric stimulator (it is like a pacemaker for the stomach that encourages the stomach to move more naturally) and more.

The treatment options available work differently for different people depending on the cause of the Gastroparesis and my best advice would be to seek out a Dr who specializes in Gastric Mobility Disorders which are usually found in the larger Tertiary Hospitals.

My best advice until you are able to see an expert is to keep a diary of everything you take in (food and liquid), when you ingest it, how much, any immediate reactions, any later reactions, urine output, bowel movements and more.  This will help you see trends on what you are able to tolerate more and to be able to adjust what you ingest accordingly as well as let your Dr know what your eating and drinking habits are and your bodily reactions to them.

I cannot handle the adult nutritional drinks, but can handle the pediatric ones... cannot handle commercial broths (too much sodium, fat or spice for my stomach) but can tolerate home made broth that i make as fat free as possible by chilling it and skimming off any fat then freezing and again wiping off any fat before "eating".