J tube users - used for drainage only?

• By Sanford
• Posted October 22, 2009 at 10:22 am
• Report post

I have both a j tube and a g tube, so I understand your frustration. The issue of whether we use them for drainage or feeding is really irrelevant. WHat's important is your attitude toward the tube. Will it control your life or will you? ANd I say this as someone who let the tubes control me for quite a long time.

1. If the tube is permanent and you don't want to spend the rest of your life in pj's, then your attitude needs to change. Eventually, you will simply get fed up laying in your house that you will get up and get out and have a good time. WHETHER OR NOT THE TUBES SHOW TO THE WORLD!

2. The tubes are, in fact, unattractive and inconvenient. And yet, they are saving my life, so, oh well. I used to be bothered by what I perceived to be other people's negative reactions to them. What I learned over time was, I was projecting my own feelings onto others and most people barely notice them, if at all. People who do notice them are usually more curious about them then bothered by them. The amount of reaction to the tubes from others seemed to diminish in direct relationship to how my own attitude toward them improved.

3. The only time my tubes don't show when I go out, is when I wear pullover shirts or sweaters. Otherwise, in button downs, the tubes hang out. I've tried taping the tube onto my chest (which wouldn't work when I pump), but the tape pulls on my manly,virile chest hair.

So I suggest the following...

try pullover shirts, like tees or polo shirts, and add a fabulous cardigan. Buy some gorgeous men's dress shirts, add a hot tie or scarf hanging down the front to hide the tube.

Buy some beautiful dresses, and have them tailored. Tailors can add slits for the tubes. And you can tape the tube toward your hip (being careful not to kink it) so that it would be less obtrusive coming than out the front.

Living with the tubes is an adjustment game and it takes time. But it also takes effort, and giving up isn't an option. I'm sure others will also have great suggestions for you. Always remember, you are not alone.

• Reply

• By Woeful
• Posted October 22, 2009 at 1:53 pm
• Report post

Sanford,

You have a J tube and a G tube? Two different tubes? (I guess I'm not sure what you mean.) Why do you have two tubes, if you don't mind me asking. As for it being irrelevant whether it's for drainage or feeding, I think it does make a difference. If it's for feeding, you don't need the long tubing, right? If you aren't feeding, you can put the cap on the bottom of the tube and nothing is showing/clothing you wear lies mostly flat against you. My tube bulges straight out a good several inches and it's hard, inflexible plastic. It can't be bent (if I tried, it would pull the whole thing right out of my stomach) or pulled to a side and taped down. I don't know if I have a weird sort of set-up (I'm assuming I do, since everyone medical who's ever seen it, barring the surgeon who put it in, says they've never seen something like this) or this was just the only option I had (at surgery, my surgeon said this was the best they could do given all they removed/how little intestine is left to connect to a tube of any sort). I can't find a picture of it anywhere on the Net so let me see if I can describe it: about an inch of the tube sticks out of my stomach, then there's the round disc. After the disc is about 4 inches of inflexible tubing (that when I sit down bulges straight out several inches). Near the end of it is the connector for injecting saline to inflate the balloon, then another connector (that I don't use at all) which I guess would be used for injecting crushed pills; I just open and drain it every day because gunk builds up in it). Then a cap to close it off (if I was using this for a feeding tube). At that point there is about 4 inches of flat flexible tubing. That then connects to a very long (goes all the way to the floor) less flexible thick tube that is connected to a Bard drainage bag (basically a urinary bag). I have two fat velcro strips that I wrap around my upper thigh to hold the tubing in place. I keep the drainage bag (during the day) in a sort of Hobo purse with really long straps so I can use both my hands/arms. (Otherwise, I have to hold it with my left hand, and my right arm has the PICC line.) I don't know how your suggestion of a scarf or long tie would work. You said your tube doesn't show if you wear a sweaters or pullovers. So I take it your tube doesn't bulge straight out after the round disc? That yours lies flat to your stomach, or mostly flat? I've tried really long tops (just to see how they would look, but since I can't wear bottoms of any sort, tops aren't an option), and on the left, where the tube is, it bulges way out. I also have to be careful the tops I do wear (like my pajamas) are extra big because if they are too snug, they pull on the tube and cause additional pain/discomfort. The only dresses that fit are ones that are shapeless and tentlike and at least a size too big so nothing pulls on where it comes out of my stomach. (I'd even asked the ostomy nurse if she had any suggestions for what I could wear/how I could wear it, and she said she was stumped too, given my particular set up.)


I love your attitude. It's the attitude I used to have before this happened. A lifetime of constant hospitalizations and bowel obstructions never stopped me for long. There were times I'd block up, be in the emergency room for a few hours, the blockage would clear, and off to work I'd go. I'd impatiently wait after surgeries for those 6 weeks to be up so I could get on a plane, resume my life. I've had serious chronic pain for the last 8 years but never let it stop me. I'd just double-dose myself on painkillers. I never let my illness control my life. Now, it does. I've come to terms with the PICC line for the most part. It's this J tube I can't come to grips with or stop letting it control me. It really has "defined" my whole life, controlled me, since it was put in last year. The few times I have tried to get out (even just take a walk around the block), I don't get far because the tube either starts hurting or I start leaking, and then my stomach starts burning. I tried driving my car around the block, but the seatbelt hits right where the tube is, and again, because the tube as it comes out of me is so rigid, I can't bend it or try and move it. Even tried a pillow between the seatbelt and the tube as a buffer and that caused a lot of pain. So I can't drive. The tube has also been extremely uncomfortable or actually painful since day 1, even though the tube's been changed 3 times already (once for clogging, twice because it fell out) and even though I'm on oxycodone and a fentanyl patch. The first tube change was 2 weeks after I got out of the hospital. Woke up in the middle of the night and the thing was lying on my stomach (talk about freaking out, lol).

I just can't seem to find any kind of mental strength to handle this, and it's so unlike me. It's like discovering I'm suddenly not the person I always thought I was. And it's an awful feeling. I just can't find my footing.

And now (my infusion co. just called) they want to bump my TPN time to 15 hours a night because my potassium suddenly came back too low. WTF? My labs are constantly all over the place, and my docs don't know why. (Guess it shouldn't surprise me. I'd be in the middle of the worst Crohn's flare ever and my WBCs wouldn't reflect it at all. Or I'd have a bowel obstruction that never showed on CTs or upper GI series, but they'd open me up and find a blockage.)

Add on top of that this stupid mass on my ovary and not knowing whether or not it's cancer or whether or not I'm going to survive the surgery and yeah, I'm just a big gooey mental mess. You'd never know it from the way I go on and on here on this forum, but I'm generally a very private person and don't talk about things easily. But if I didn't have this forum to vent on, I'd probably be in the fetal position by now. Sigh.

• Reply

• By jillypooo
• Posted October 22, 2009 at 2:07 pm
• Report post

I have an colostomy. Several people in our ostomy group suggest maternity jeans and pants. They buy them over the net. You may want to check that out. I had tubes coming out of my kidneys in the back with the drainage bags. Not fun!
Are you using the big round bag or do you have the ones that are more rectangular in shape that hang about to your calf's?

^j^

• Reply

• By Sanford
• Posted October 22, 2009 at 2:18 pm
• Report post

First of all, take a deep breath and try and relax. I know it's hard, I know it's stressful, but stress can exacerbate health issues.

I have gastroparesis, low motility, and malabsorption (and AIDS, anemia, peripheral neuropathy, autonomic neuropathy, and the list goes on). I have a g tube so can drain acid and food. I have a j tube to pump nutrition and water through. I can eat orally (and do... a lot), but I get nothing in the way of nutrition from it.

My tubes hang out about 8 inches from my abdomen. FOr some reason, no one ever suggested button tubes to me until after I'd gotten used to these, so since they work, I feel no reason to change now.

When I say irrelevant, I'm not minimizing the tubes themselves. The point I'm making is that you can let them be the most relevant factor in how you live your life, or you can decide that other things are more important. Oley is so important in this situation. I went to my first conference 3 weeks after getting my first tube. I was still in shock and convinced that I would never work again and be bedridden for the rest of my life. This was partly due to the surgeon putting in a tube that sounds like yours, in that it didn't have a cap and was meant to have a bag attached to it at all times. I leaked all the time. After sitting on a pity pot for a few months, I decided that if I was going to leak anyway, I might as well do it at work, at the movies, shopping, etc. And then I switched to these tubes which have caps. At the conference, I met people who climb mountains with their pumps and bag sets, people who have traveled all over the world, kids who've had tubes since they were born who have now graduated high school and entered college. We find ways to cope. And then we pass them on to others, like you, who haven't yet.

So you're frustrated. And?

What're you gonna do about it? My motto is "Stand up and fight or curl up and die". Staying stuck in the what was, and remaining frustrated by the what is get in the way of what could be.

(I don't know if you can tell, but I was a substance abuse counselor for 7 years. I went into counseling mode)

As for your kind of tube, I've never heard of it. The only tubes that I've ever seen are either button tubes which lie right on the surface, or my kind, which are soft, flexible silicone. Yours does sound like it would be more difficult to deal with.... but difficult is not impossible. If your doctors say they've never seen a set up like this, than I'd try to find a specialist to consult with. It may be (and I'm not saying it is, but it might be) that you simply have the wrong equipment for your needs. Some stuff is designed for bedridden patients, such as those in comas, who don't need to be ambulatory.

What city are you in? Let me know and I can do a little research on who's in your area.

Also, here's my cell (it's in the news letter anyway)

917-392-0589




Sanford

• Reply

• By Kristin_F
• Posted October 22, 2009 at 6:08 pm
• Report post

Idea for holding fdg. tubes up w/o using tape...I have a j-tube and have been having major issues with allergic reactions to tape around my gauze, and to help hold the tube up. Mayo clinic gave me a piece of mesh like material (it is kinda like a tube top) that I can either step into or pull over my head. It holds my gauze in place and helps hold the tube up. I can then slit a small hole in the side of the gauze to put the tube through when it is hooked up. It is fairly cheap from the Mayo Clinic store, and is disposable. It doesn't completely hide the tube, but it help with tugging and pulling, and allows me not to use tape on my skin

• Reply

• By regbrigidmom
• Posted October 23, 2009 at 9:16 am
• Report post

I have explained this to you before, but I'll go through it again - my daughter has 3 tubes on her torso - her g for drainage (she drains into an ostomy appliance directly on her abdomen, so nothing hanging at all) her j (a separate tube on the opposite side of her abdomen - it is a roux en y) for 5cc/hr feeds to try and protect her liver from hr TPN, which she receives 15 hours a day via her Broviac. She wears dresses, pants and everything in between and carries her feeding and IV pumps in a backpack with her tubes snaked out the back of the neck of her shirt to try and decrease the chance they will get pulled (she goes to school and is as active as her condition will allow).

We can all stand to learn a lot from the children around us - Brigid is happy not only to live her life, but to show off her tubes to anyone who is (un)fortunate enough to be within sight of her - lineup at the bank, playing at the park, you name it. They are part of her - they help to keep her with us, but they do not define her. I have worked for the better part of 2 years to find a workable solution to Brigid's needs - we're not there yet, and it has been cobbled together, but it is my job as a parent to make sure I am doing what I can to remove barriers from Brigid's life so she can get on with the job of living. Today is Brigid's birthday - we don't know how many more she'll have, but I can rest at night knowing I am doing whatever I can to ensure her time here is as easy on her as possible.

Maybe if you throw yourself into finding an alternative, whether it is advocating for yourself to get a more suitable tube (you can drain through a button type tube) or learning to sew so you can make clothing you are happy with, you'll be less weighed down by the negative and more willing to see that your life is not done yet (unless you have given up, then there is nothing any of us can say). Yes, I am being harsh, but I am not the sympathy type.

Tubes suck, pain sucks, sometimes life even sucks - but only if we let it.

• Reply

• By brownp
• Posted October 23, 2009 at 2:10 pm
• Report post

You could do a temporary hookup to a leg bag with your drainage jt when you go out to avoid dragging around large bag-when full could just go into bathroom and empty it into toilet. As to placement of JT and clothing not sure that I can be of help-- most of our drainage peg/pej pts wear very loose clothing(sweat pants etc) to a void pulling/tugging of tube and site irritation. Drainage tube as it exits in your abdomen should also be looped/fastened to again avoid accidental pulling/dislodgement. You can use a cath secure (brand name ) a multi purpose tube holder with velcro that might be of help to you. It is manufactured by M.C Johnson Co Inc reorder number 5445-2 phone number 239-433-0619 800-553-8483. If you would like to talk you can call me at work 212-639-6985 Pat Brown RN CNSN Memorial Sloan Kettering Cancer Center.

• Reply

• By Woeful
• Posted October 25, 2009 at 3:41 pm
• Report post

Sanford,

Wow. I had no idea the numerous serious health problems you have. I'm even more in awe now of your attitude. (Of course, it just frustrates me all the more that I can't seem to find that same attitude. Like I said in an earlier post, it's like I don't even know who I am anymore.) You said you switch to a tube with caps. So you cap yours closed? What about the drainage from your stomach? I can't ever cap mine closed because my stomach drains continuously, so I'm 24/7 'connected' to the bag/tubing. Otherwise, I'd be vomiting constantly.

I read too all the stories of people who are traveling, hiking, climbing mountains, etc, and I confess I don't know how they do it. I can't even carry my own TPN bag once I'm hooked up. It's too heavy, plus I have a very weak left knee (osteochondritis) that gives out constantly. (When I used to work out, I could never do lunges or squats because of my knee.) Now that they increased the potassium yesterday in the bag, the bag's even heavier. I have a portable toilet by my bedside so at night I can at least go to the bathroom on my own, without waking my mother. Even riding in a car hurts if the road's bumpy or we hit a pothole. Going to the doctor's, any doctor's, is exhausting and awful. (I tend to leak a LOT more when I sit; standing or lying down, I don't leak as much.)

And you are right, I am very definitely still stuck in the what was. Within minutes of waking up every morning, after the sleep fog clears and reality sets in again, I'm right back in that funk I can't seem to get out of. I try and 'force' my brain to focus on anything else, or even just one thing positive, and I give myself headaches (and stay right in the funk). I keep wracking my brain trying to think what I can still do, or try to do, and I'm right back to zero. My brain is the proverbial hamster on a wheel, just going 'round and 'round on a miserable ride that leads nowhere. I'm even on anti-depressants and anti-anxiety meds, which only work at half-strength (even though I'm on concentrated SL forms), but my doctor thinks that's because of having no intestines, I have no absorption (and the small intestine is what absorbs these meds/makes them effective). Intravenous forms are obviously out of the question. I like your motto, but honestly? I'm more in the 'curl up and die' mode, and I *hate* it. Every night I contemplate just stopping the TPN altogether, but I just can't do that to my mother. My father died last year and my sister's dying (metastatic colon cancer in her brain). She's barely holding it together as it is, so if I did take matters into my own hands, which I think about constantly, well, it just wouldn't be fair to her. She's also feeling a HUGE amount of guilt. She was the one who told the surgeons to do what they could to save me. (My fault for not having an advanced directive on file at the time.) And she did that because I'd always been a really strong person, bounced back from everything. She figured I'd bounce back from this, but it hasn't happened. (And to think, my last few weeks in the hospital I kept arguing with the doctors about how soon could I go back home. I guess that was all the drugs talking. I really thought I'd just go back to my apartment and resume my life, with maybe occasional outside help. Ha. I can't even bathe myself, much less live alone. And the sofa is now in the shape of my body, since I'm on it the hours I'm not asleep in bed.)

As for my set-up, I have the feeling that, because my overall situation was so dire, they just did whatever they needed to do to try and keep me alive. They didn't expect me to survive (and that I did was apparently some kind of 'miracle' for the surgical team, I'm supposing, since one of the senior residents told me, about a week before I was released from the hospital, that he'd just presented two papers on me at two symposiums). But I did survive so it's like, uh-oh, now what? They didn't take into consideration how would I resume any kind of actual life/activity afterward because they didn't figure I'd survive the infections. (I think they are still not particularly hopeful about any kind of longevity. My mom asked about my long-term prognosis and my surgeon told her 2-5 years.)

As for what city I'm in, I'm in Maryland, about 30 miles north of Baltimore City.

For the person who suggested I try maternity pants/jeans, again, my problem is the tube goes into my stomach right at the waistline, so I can't wear pants. (I tried low-rise pants, but I'm very slim hipped and they won't stay up, and I can't wear belts.) And because the tube where it comes out of my stomach is 100% rigid/inflexible, I can't pull pants up over the tube either.

• Reply

• By Woeful
• Posted October 25, 2009 at 3:57 pm
• Report post

Brownp,

I have a leg bag. The problem is where the overnight tubing connects to the J tube will not come apart easily (as it's supposed to). Even my surgeon couldn't get it apart. He had to use pliers to do so, and almost ended up pulling the tube out of my stomach completely. My cousin's a nurse, and very strong, and even she couldn't get them apart. That's why I haven't been able to wear leg bags (which would definitely give me greater mobility, without question). I also have this "football" (or "Christmas tree" as some docs have called it; I don't know what the correct name is) that connects the long tubing to where the tube comes out of my stomach, after the disc. That's where the suction is too tight/where it won't come apart so I can connect a leg bag. We tried disconnecting the long tubing further down (it's hard to describe in words, sorry), where it does come apart easily from the 3-inch flat piece of flexible flat tubing, but the leg bag (and I've tried 6 different kinds) tube opening is too large in diameter where it would connect to the J tube, so as soon as fluids come out of my stomach and into the J tube, it goes everywhere. As for the drainage tube and looping or fastening it, again, I can't do that because where it comes out of my stomach is 100% inflexible. It can't be bent or folded at all (doing so would pull the thing right out of my stomach). Like I said, I apparently have a weird set-up. I saw a new GYN oncologist yesterday and even she said she's never seen anything like this (that's like the 10th medical person who has said that). I've been due for a new J tube for a few months now, but because of the ovarian mass, they've been holding off replacing the tube because the mass is more urgent an issue, esp. since the mass is growing fast enough that it's now crossing the midline to the other side of my stomach, meaning it's starting to push, likely, against my stomach, which in turn pushes against the balloon inside me (but I found out yesterday they can't/won't remove the mass because this surgeon agrees with the others that I wouldn't survive the surgery). Thanks for your number. I will try and give you a call this week if I can. (I have a few more doctor's appointments and I just started with a new infusion company, so last week and this coming week are really crazy.) Maybe I can better explain the kind of set-up I have over the phone and you can tell me if you've ever heard of such a thing. (I had a seamstress friend of my mother's stop by the house a month ago, to see if she could alter my clothing somehow so I could wear pants and dresses, and even she was stumped because of my set-up.)

• Reply

• By Sanford
• Posted October 25, 2009 at 10:00 pm
• Report post

You can get through this I have faith that you will, though it might not seem so at the moment.

I commend you for doing as well as you are, considering the year you've had.

I mentioned your situation to people in the Oley office to see if they can find anyone who can provide some insight into your tube and possible solutions. I will let you know what I find out.

• Reply

• By marycb
• Posted November 1, 2009 at 8:02 am
• Report post

Don't know if this would help you, but a while back someone on my cancer support list gave a link to a place that sells clothes which are comfortable and billowy, not tight fitting. She said their clothes work well for people with ostomies, ascities, recent surgeries, etc. Maybe it would work for you. This is the place if you want to check it out http://www.devalifewear.com/mm5/
Mary

• Reply

• By Woeful
• Posted November 2, 2009 at 5:52 pm
• Report post

Mary,

Thanks for the link. I've bookmarked it. I am a little cautiously optimistic. My mom found me a few pairs of leggings (which apparently are "in" again this season) and some of then are low-waisted and snug enough that the top of the leggings wouldn't come near my tubing. So if I can just find some tunic tops or long loose tops or loose dresses that come to the knee, that might work.

• Reply

Add to the discussion