Bleeding around the PEG tube... HELP

[Eva B]

I am a CALS. My father has Bulbar Onset ALS-diagnosed 04/2022. I am going to try and give the quick version...
He had a PEG tube put in 6 days ago by an intervention radiologist. He was referred after the GI did not like the location of the stomach. The IR was not able to place it by X-RAY, so they did it via CT. The peg tube had to be placed directly under the sternum (colon was in the way for left side placement).
He has bled 4 days in a row. Day 2 he lost about a cup of blood. Day 3 we went to the ER, where we sat for 8 hours and he bled for a total of 7 hours. Because he was stable and his labs were relatively good (besides low blood pressure), they were okay with an active bleed. The ER paged (put a call) the surgeon that performed the placement (he was only two floors away). The surgeon just messaged our ER nurse back saying that we needed to contact our primary provider to put in a referral to be seen.
So--- as you probably can conclude, whatever is constantly causing the area around the tube to bleed is not fixed. It starts to bleed when he is up and walking around, tries to pass a stool, or sometimes even when sitting upright in a chair (vs leaning back). I have been able to stop the bleeds by taking gauze and creating a tamponade around the flat plastic end of the tube closest to his stomach.

I just can't believe this is normal. I completely feel let down by the health care system here with the hurdles and hoops just to get someone to look at why this is happening.
What can I do? He lost 45 pounds before making this decision... I don't want to scare anyone, but I was hoping someone on here has went through this and could help. Thanks everyone.

 

[Doing My Best]

Hi Eva, I'm so sorry your father is experiencing this. I don't have any special insights, but it doesn't sound normal to me. My husband got a g-tube placed by IR in December and his only problems have been occasional irritation around the stoma and ongoing, intermittent digestive problems (not counting the time I accidentally yanked it out, which was not fun - but even then he didn't bleed). The bleeding sounds like something that should be addressed promptly and I'm shocked the surgeon would tell him he needed a referral, three days after surgery. That being said, can you reach your father's PCP and ask for a stat referral? Or, is your father at an ALS Clinic and if so, could the clinic contact the IR on your behalf? Best of luck - let us know how it goes. I hope others on the forum will have more advice for you.

 

[lgelb]

I'm sorry to hear this, Eva. No, that level of bleeding is not normal, so if it's still going on, I would be expecting a longer-term tamponade, a revision of the stoma, repositioning or replacing the tube, but I am a bit confused. Rather than sternum, do you maybe mean jejunum?

You said the tube was placed in IR but by a surgeon, not an interventional radiologist?

In certain plans, unless the ER considers it an emergency, a PCP referral is required for specialty care, though I would think the referral for the tube would still be good -- they usually apply for a month or two. Nor does worrying about the referral make sense to me in the context of a patient in the ED and a bleed. Those things can be managed later so long as some kind of treatment is rendered.

There is also the issue that once the stoma is healed, it is harder to fix anything that needs it. The bleeding may stop on its own, but a week in, I'm dubious like you.

If the PCP can't help with the referral, I'd show up tomorrow in the office or reception area of whoever did the procedure or the IR suite. Exposing a little blood in the waiting room and a slightly raised tone of voice will probably get him seen somewhere. I would also imagine his CBC might not look as rosy tomorrow as a couple of days ago.

I do encourage PALS in Medicare Advantage to have a PPO (in a large network) rather than HMO plan, if that is an option during your dad's next open enrollment period (usually starting in Jan.) or if he is still in his MA trial period.

Let us know how it goes!

--Laurie

 

[Eva B]

Thank you for the responses.

Laurie,
I guess I was referring to the IR as a surgeon, my error. It was an intervention radiologist that placed the tube. And, yes -below the sternum... In the middle of his body. It is only connected to his stomach - not small intestine.

With all this bleeding, he also is in an infusion trial where he must fly into Dallas once a month (the other three weeks out of the month someone comes to the house). That day is today. If he doesn't go, I'm afraid the trial is over for him. Obviously they won't cancel as it in important for trial data.

I think you're right. On Monday, we should have just walked from the ER to the radiologist suite and show them, face to face, what is going on.

As of this morning, he still bleeds (pretty profusely)... trying to find someone that will give us an appointment to see him immediately is difficult.

 

[Nikki J]

Maybe go to the pcp office? They can’t fix it but they could certainly make some noise and hopefully get the ir to deal with it.

Have you called the trial people? They need to know Is it trehalose for the trial?I think that can affect clotting. Clearly not the cause but might be making it worse. If you go to Dallas I think there is a strong likelihood they wouldn’t do the infusion whatever the drug

 

[Eva B]

Nikki,
Thank you! I didn't think about this in relation to medication or infusion.
I'm new here, and I already feel like this forum will be a vital resource.
Thanks again.

 

[Nikki J]

Do call your research team. See what they say. As I said not likely to be the cause and needs addressing but not impossible the study drug is contributing