Facebook Pixel
EmpowHER Guest

When a j tube is not helping, what's next?

By Anonymous June 4, 2012 - 3:37pm
Rate This

I have Idiopathic Gastroparesis. After Botox injections and a G tube they decided to do a Roux-en-y. During the surgery, the surgeon felt my stomach wasn't BIG enough to go that route and instead placed a j tube in Feb. Since then it has been H E L L!!!!!! Not to metion the pain, I cannot tolerate any formula. I have lost over 20 lbs in a month and they won't prescribe narcotics because I have motility issues. Tramodol does not help at all!!!! I am allergic to Ibuprofen and Naproxen. Now I won't, refuse to use the tube at all even for meds b/c everytime I use it my stomach swells and the pain it causes is EXCRUCIATING!!!!! I'm at my wits end, and though I'm not suicidal(against my beliefs), I WISH I WAS DEAD!!!! I'd rather be dead than live like this. Please, please, please help me. My doctors said thre is nothing more they can do. I don't buy that. You tell terminally ill patients that, I'm not terminally ill. See I have county provided insurance and I think that's why they've given up on me, because they probably don't get paid very well for lil' 'ol me.

Add a Comment3 Comments

EmpowHER Guest

Hi There,

I know it's been years since this was posted, but I'm hoping you have an update on what "next steps" you took. Your circumstances sound EXACTLY like my mother's and she is at her wit's end as well. Some of her doctors are telling us it's part of her body adjusting to the j-tube (she's only had it in for 2-3 weeks), but it seems to me this is much more extreme than that. I don't think she's going to be able to tolerate it much longer unless a real remedy is provided. Her doctors are not providing any other options for us either. If you have any updates or suggestions please let me know - from one desperate person to another...


May 10, 2017 - 1:49pm

Hello Anonymous,
I can hear your pain and frustration in your words. I troubles me to hear that your physician offers no further suggestions and that you would rather die than live your life as it now is.

You mention that you cannot tolerate any of the formulas. This intolerance needs to be addressed by your physician. The hospital dietitian and pharmacist should have designed a formula that you could tolerate before you were discharged from the hospital.

I am concerned about the pain that you are experiencing with the jejunostomy tube. Has your physician examined the site and determined that there wasn't an infection.

I understand that you are covered by county provided insurance, but, the care that you are receiving is unacceptable. Would you consider going to the emergency room of your local hospital to have a member of the staff examine the J-tube site?


June 4, 2012 - 4:51pm
EmpowHER Guest
Anonymous (reply to Maryann Gromisch RN)

Thank you Maryann for your concern. When I was intially discharged I was tolerating Nutrinin 2.0, but from one day to the next I wasn't able to tolerate it anymore. Then my insurance only pays for formula for 3 months so I had to start buying my own at Wal-Mart. I can't seem to tolerate nothing except 1oz every 4 hours which is ridiculous. I've gone to the ER repeatedly and they say there is no infection. To me, if feels as if my body is rejecting the tube. I feel like I've been stabbed and the knife is still in me. I go to the GI tomorrow, again to debate with them that there's got to be another way. I just don't know what to suggest to them in hopes that they'll take the bait and give it a try. I tried going to different hospitals but nobody wants to get in the middle of it because they weren't the hospital that placed it.

June 5, 2012 - 5:47am
Enter the characters shown in the image.
By submitting this form, you agree to EmpowHER's terms of service and privacy policy
Add a Comment

All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.


Get Email Updates

Gastroparesis Guide

Have a question? We're here to help. Ask the Community.


Health Newsletter

Receive the latest and greatest in women's health and wellness from EmpowHER - for free!