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Severe Pain by J Tube

Abiah
0 Recommendations

Hi Everyone!

I've had a J and G tube since May of 2006 because of Gastroparesis from Type 1 Diabetes. I used to take constant feedings into the J tube, but with some better symptom control has allowed me to eat again, though not very well. I have to still take all my meds through the J tube or they don't seem to work. (Like I take the dose of nausea or pain meds and get zero relief.)I tend to get crazy blood sugars due to my poor digestion, this being the case in April where I spent three weeks in ICU/hospital.

I have chronic pain in my upper left abdomen, that is usually well controlled with liquid morphine, but during the hospital stay a new pain began down by my J tube, a constant throbbing pain with sharp intervals. I thought the reason it hurt was due to the nurses putting way too much volume into the J tube at once, like potassium which caused local irritation. Putting anything into my tube hurt it more, but an idiot doc at the hospital decided to take me off IV/shot meds and put me on oral meds, through my broken stomach. I finally got fed up with not getting any relief that I went home STILL having the pain, going back to taking my meds through my sore tube area.

Now, it's almost July, over 2 months later and the pain has gotten horrible, unbearable again. It never really went away which made me think that maybe it wasn't just irritation from too much being pushed in there since it's lasted this long with only a week on and off that it felt a little better. But starting about a week ago now, I felt the most horrid pain shooting down from my J Tube in my lower left abdomen. It also has some of that sore, gooey red tissue around the hole, and a lot of yellow pus that seems thicker and stickier than the usual discharges that happen around the tube. It is bright red, but it's only around the hole (like a nickle sized redness) and I know if I showed the docs they would say that tubes are always red. I feel like its infected, but I felt that way when I was in the hospital in April and the doc said it wasn't and that the pain was nothing.

This is not nothing...something feels very wrong and has only been getting worse the last three days. The pain has such sharp moments I can hardly breathe. Have any of you had J tube infections? What were your symptoms? I've had them before, and it felt like this I think, but the hospital docs in April wouldn't listen, and my GP doesn't know anything about tubes. I have a specialist appt. on July 10, but this is so painful that I don't know if I can wait till then, and there aren't any openings before.

I'm just so tired of this agony and want it to just stop. It kills every time I take medications, but w/o the medications I end up worse off cause one of them is for pain. It's not taking away this NEW pain, but at least helps the chronic one. Just horrible that it hurts to even get THAT relief cause the tube area is so tender and oozing. (YUCK, I know!) I'm hoping someone here knows about this and can give me some advice.

Thanks SO Much for even reading this long post, and I hope that no one else here is having as much trouble as I am today!

*BIG HUGGLES*

Abiah

Explore topics in this discussion:

Cancer Surgery Chronic pain Fentanyl Gallstones Ibuprofen Diabetes Gastroparesis Vicodin Kidney stones Morphine Ovarian cancer Ostomy Pain Lung cancer Percocet

9 replies

LizAA

Abiah,
You are not imagining these pains-as much as the doctors don't understand where and why it's happening. I've been a nurse for 15 years, and know that PEG tues PEG/J tubes and J-tubes all cause problems and pain. Many doctors blow it off or say it's imagination mainly because they can't figure out the source or don't know how to fix it. I can tell you, most of the wonderful people on this site have experienced discomfort and pain with their tubes-some have even extreme discomfort such as you. It's normal-our bodies revolt when a foreign object is put where it's not supposed to be. I would definitely take the pain medication in the route that helps the most and hope you get better suggestions from the doctor and people here on the site.
Good luck and God Bless!
Liz

Woeful

I'm so sorry about all your problems. Why is it that doctors don't seem to treat pain complaints seriously unless you have cancer? I remember my father last year (he died in Dec. of lung cancer that had spread to his bones). He complained of severe leg pain and all the doctor did was put him on 800-mg ibuprofen. The next day, when the cancer was found, THEN they switched him to morphine short and long acting. It was as if, oh, okay, NOW your pain is legitimate. They couldn't throw pain meds at him fast enough. I'm not saying that cancer pain isn't horrible pain; I imagine it must be horrific. But it doesn't mean other kinds of pain not caused by cancer isn't equally intolerable. (Sorry; inadequate pain management is a real pet peeve of mine.) Have you ever used fentanyl patches? Maybe that in combination with the oral morphine might help. I too have been suddenly having serious pain with where the tube goes into my body, esp. when it moves up and down because of peristalsis. My doctor's at a loss (no surprise there), but he did up my fentanyl patch and I'm also on liquid Roxicet (I have no intestines, so I can't take anything in pill form). I do know (or so both a family nurse and an ostomy nurse) that since these tubes (the balloons) are positional, the balloon could have shifted to an area that is now causing you pain. Your doctor at the very least should take an x-ray to make sure things are where they should be. And if your doctor won't take you seriously, then go to the emergency room. Let them know in uncertain terms the level of your pain and that if something isn't done about it and you later develop problems, the first thing you're going to do is hire a medical malpractice attorney to look into the matter. I had to threaten to that once, years ago (before my Crohn's was diagnosed), and it was amazing the immediate attention I got. It's sad to have to threaten legal action, but sometimes that's what it takes to get a doctor's attention that YOU know your own body best and YOU know something is wrong.

Abiah

Thanks SO much for the replies!

What you said Woeful about pain is OMG so true and something I've said before. People with chronic pain and digestive disorders are so often blown off, because abdominal pain isn't something that needs surgery to fix or a problem that is easy to understand. A lot of our disorders are complex things, and a lot of times rare. My General doc is the best GP I've had since I started this rollercoaster nine years ago, and he does give me the liquid morphine for the chronic pain I have in my belly, but this is a new pain. Something I've never experienced in the three years I've had these tubes. It is mind blowing pain at times, even just after I take my pain meds. The tube area is burning and on the inside there is a pain that seems to follow my intestinal track from the tube and to the left. It's making my blood sugars go insane and making me have more problems from that issue.

In the hospital in April I had an 'unknown infection' that almost killed me by shooting my sugars so high. They never found where the infection was, so I was treated with major antibiotics, my blood work looking good, but this pain then started, and wouldn't go away. The only thing that showed a problem when they looked at my tests when I first came in (Xrays, CT Scan, Ultrasound) was some free liquid in my abdomen cavity, outside of the bowels, just a bit of liquid that they didn't know what it was. When they found the liquid they did a study by flushing tons of fluid into the tube and taking xrays of the tube to see if there was a leak. There wasn't. That's the only thing they checked out in concerns to this fluid in my belly.

I'm so tired of being in THIS much pain. Before that hospital stay in April I was still sick, but at least not in agony. My GP, like I said, does treat my chronic pain, but isn't helping me try to get this new one under control. I think something is wrong, but no one is listening to me. This doc I'm seeing on the 10th of July is the "Tube feed/TPN" doc for Vancouver, so I'm hoping he'll have an answer to what is going on. The only thing I'm worried about, is that when I started having this pain in April about a week and a half into the stay they called this guy. He then told the crap hospitalist that "Gastroparesis doesn't cause chronic pain". I've never met someone w/ Gastroparesis that DIDN'T have chronic pain, sometimes extremely severe like mine. The appt. is a long ways off to me right now, and I keep getting high sugars and ketones in my urine (The thing that puts diabetics into comas). I'm chasing my sugars to get them down, but they just jump RIGHT back up again because of the pain.

Sorry, I'm venting. I'm just so warn out, and so tired. Sleeping is so hard cause the pain shakes me back awake all the time. Ugh. I guess if it keeps doing that sharp throbbing pain that has escalated a few days ago, I'll go to the ER and hope they figure it out. That's the only thing I can think of doing, but not sure if they'll even help me. It's all about the luck of the draw when it comes to these hospital trips...do you get the good doc who treats the pain and nausea with IV meds until you get under control, or do you get the bad doc who tells you take pills orally when you haven't done that in years. I take them through the tube atm, but think I'm making it worse. But if I don't take my meds, my chronic pain goes nuts. *Sigh*

Thanks for even reading this rant! It's so nice to find this site where people understand the hell of living with severe digestive disabilities. Even if you guys/gals don't have any magical answer, just having you guys read this helps me feel that I'm not so alone, and that at least someone out there cares.

*BIG HUGGLES*

Abiah

Woeful

Abiah,

Have they checked you for a urinary tract or bladder infection? Or gallstones or kidney stones? I know those can cause horrific pain. As for burning inside the tube, it's possible perhaps you have granulation tissue build-up inside, not outside, the tube? I recall my surgeon mentioning that as a possibility a few months back (that granulation tissue can build-up underneath, inside, where you can't see it). Sometimes life just royally sucks, doesn't it?

margamouse

I have the strong, constant pain too. But I believe it is from having a j-tube. Taking Vicodin with little relief but a little is better than none.
But in January, I ended up in the hospital and they couldn't find the pain I was experiencing then. It was just under my rib cage. In February I had a j-tube put in and the surgeon did an exploratory and found I had adhesions from where my pacer wires were attached to my stomach that were causing that pain.
He removed them and that pain hasn't returned so if you've had surgery in the past, have them look for adhesions. It's worth a try.
Hope you find relief soon. I know what it's like to have this constant pain. Does it double you over at times? Isn't that the worst?!!
Margaret

marycb

Abiah,
When you have free fluid inside your abdominal cavity I believe it is called ascites. It might be worthwhile to look into that aspect some more. When I had Ovarian cancer, I had ascites and the ascites itself can be very painful. Have they done a transvaginal ultrasound? There are some GI problems that can cause ascites also, maybe you should check into the ascites some more.
Mary

Lynee

Abiah, I've had intense pain at my PEG site since it was put in. They cannot explain it to me, I'm on Percocet to control the pain because it is really intense when it is hooked up. Originally I was supposed to use it 20 hours a day, but I've found I can just use it at night and maintain my weight although I haven't gained as much as they want me to. I have to have a life and I work full time - carrying it with me just isn't practical. I'd say keep pushing for answers; my GP is also great and has no problem helping me manage the pain. I hope things get better. Lynee

prettykitty

I had a great deal of pain from my GJ tube when I had to have a larger tube inserted in me (the smaller ones kept migrating back into my stomach and had to be changed constantly). The pain would sometimes be so bad that it was difficult to take a deep breath in or even turn over without someone helping me. I kept explaining that to a local hospital and they'd do several X-rays and CT scans and would find nothing. Eventually, out of desperation, I went back to the hospital who initally placed the feeding tube when it was smaller (University of WA medical center). It was there that they discovered TONS of granulation tissue around the site and severe muscle spasms where the tube was inside of me. I kept asking for a smaller tube, but they told me that it wasn't good to put a smaller tube in the larger hole, 'cause it would cause leaking a lot. So, they loosened the disk that was attached to the tube and turned the tube a little bit. They also suggested that I put EMLA cream on the granulation tissue and take ibuprofen if the pain got really bad. Once they did this, the pain was reduced a lot! The radiologist told me that some people can't tollerate the tube disk being tight against their tube site and it can cause the muscles to spasms constantly. The one thing that did surprise the doc was that I told him that if I applied counter-pressure on the tube site, it didn't hurt as bad. But, the doc said that if it helped, more power to me LOL!
Now, if the tube starts to hurt, I immediately get in a hot bath for a while and relax as much as I possibly can.

Jessie

Tigerette

Mt husband had this, His GI doc told him it was infected, so he had another J tube put in, this is his 3rd one, they do get infected some people has 3-4 or even 5 tubes put in along there treatment.
Tak to another GI doctor that will help you, just keep on opening your mouth until something is done.
GOOD LUCK
GOD BLESS U

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