After two months of patiently waiting I finally got in to see a specialist at UW Medical Center in Seattle. Though I have done extensive research myself on the limited treatments for gastroparesis I was really hoping they would have some ideas I hadn't yet heard of. The doctor was very patient and kind, taking the time to absorb all my questions and concerns. She then proceeded to go over her main concerns, being my weight, and treatment options. There are basically two ways to approach this:
#1. Medication - Suggested use of Erythromycin for three weeks. This is an antibiotic (a huge phobia of mine) that when taken in small doses short-term can have the side effect of accelerating gastric emptying. The idea here is that it would allow me to take in more food, thus put on weight.
#2. Feeding Tube - The tube, called a jejunostomy tube, is inserted through the skin on the abdomen into the small intestine and allows you to put nutrients directly into the small intestine, bypassing the stomach altogether. The plan with this would be to keep it in for 3 months taking in extra nutrients in addition to what I can eat. This option feels desperate and really scares me with the possible complications.
Desperate, I opted for #1 but unfortunately after 10 days I had to go off of it because the side effects, strange enough, are nausea and pain, which was too extreme in my case to deal with.
So, that brings us to option #2. I'm taking a week to meditate on this, do some research and consult with my local doctors for opinions. It's not a cheap procedure and supplements for 3 months add up quickly. On good days I feel like I can just push through this but on bad days it feels like the best option.
If anyone out there has had experience with this or knows someone who has I would appreciate some insight!
I should know more about my decision by next week, wish me luck.
Stephanie
sorry to hear you've been having a difficult time. Just a thought, i've been able to maintain some weight lately by eating (of all things) ice cream every evening. it digests a little easier due to the liquid part of it. I know its not considered healthy but the calories, fat, and protein do add up to help with the weight. i've stopped losing weight and have been able to maintain and gain a couple slowly. there are soy options too. just a thought. hope it helps.
ReplyDeleteBeing lactose intolerant, especially to ice cream I have been trying to pack in coconut ice cream every night. Sometimes I end up with waking with a tummy ache and other nights its fine. Maybe I'll go back to trying soy. Thanks for the tip!
ReplyDeleteSorry to read you've been having challenges maintaining a healthy weight due to your symptoms from gastroparesis. I've been dealing with GP (and possibly pelvic floor dysfunction) for nearly a year. In December I received a g-j tube. I have a love-hate relationship with it. As much as I hate having a feeding tube, it has kept me out of the hospital and likely saved my life. Sure, it is a bit of a pain, but it is different from having a PICC line and getting TPN (I had that for a month). The risks and complications of infection with a feeding tube are not as scary as they are with a PICC line. My tube site got infected and it was no big deal. Yes, it was a bit painful and the antibiotics gave me the runs, but it wasn't life threatening. I've been able to gain a good amount of weight with the tube and am maintaining a healthy weight now (going on seven months). Hope this helps you feel more at ease with the feeding tube. :)
ReplyDeleteI was just reading back on the beginning of the feeding tube adventure and found a few comments I didn't notice before. Particularly this one posted on 7/26, thank you for sharing! I'm also working with a therapist on pelvic floor dysfunction, it seems common for the two to intertwine. It has been 5 months and I've also gained a good amount of weight and able to maintain it. If you are still getting updates on this I would love to chat more about your experience and if you've continued to use the tube!
DeleteThanks, Stephanie : )
Long fasts on raw, organic juices, especially carrot, have worked wonders for those willing to do it.
ReplyDeleteI hope the meds help you and improve your situation with your weight. Meds have not worked for me so I'm seeing a surgeon to consult about the neuro stimulator (aka gastric pacer as some call it). Have also heard of Botox injections being successful in alleviating symptoms. All things I plan to ask about during my visit. Kudos to you for educating yourself and going into the appointment knowledgeable. What a difference it makes!I will bookmark your blog (and if I can figure out how to link in Wordpress) link to it as well. The more info out there the better! I wish you the best in your treatment and hope you find relief in addressing your weight, soon.
ReplyDeleteI did have the botox trx and only seemed to work for a few weeks and not really that much. Definitely worth talking to your doctor about since some have great results. My doc mentioned the pacer worked mainly for those with diabetic GP so I'm interested in what you find out. I know it has done wonders for Crystal. Looks like I'm getting the J-tube next week. I'm over the fear and ready to put on some weight!
ReplyDeleteI have had some major help by taking the progesterone only birth control pill. I had gp for seven years before becoming pregnant with the help of progesterone and my symptoms went away. When I had the stomach flu a couple years ago it all came back. The mini pill really helps. I also sometimes take an aspirin with meals. The theory is that my stomach lining is too thick so my body doesn't realize that I am full. The pills help break down the lining I think. It also has to do with to much prostaglandin. It is unusual but it might be worth looking into.
ReplyDeleteI've tried to add this to comments but I am not sure it is working. My dr and I had an amazing discovery. My gp came on with a flu. I had gp for about ten years. When I was pregnant it went away. Seven yrs later I got the flu again and it came back. My dr came up with a theory. He thinks that I have to much prostaglandin. This is causing my stomach lining to be too thick and so my stomach is not being signaled that it is full. A progesterone only birth control pill has helped so much. An aspirin at meals also helps. I don't think this is common but if it could help someone else I would be thrilled!
ReplyDeleteThanks for the ideas Laura! If you can please email me at Stephanie@journeywithgp.com. I would like to here more. I do already feel very full most of the time so not sure that is my issue but worth looking in to. :)
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