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Peg tube Bleeding

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hi everyone, tonight I had bleeding at my peg tube site. I removed gauze I put under the plastic thingy to hold it because it has these raised square disks on it that push into my skin and hurt. So every morning and night I change it and clean it and replace gauze it always has dried blood on it and never thought anything of it because its been a pain in tush sine it went in Dec. 24, 2012, but tonight I took it off and started to clean it and it bled. It was dripping with the water. And filled 2 qtips, I replaced my gauze and let my family know incase it didn't stop and needed to go to hospital. It seems to have stopped, I read on line(not here) that it was normal from irritation to the Stoma, has anyone else had issues? If it does it tomorrow I will be in Dr. Waiting room all day if I must! Lol

Any advice or experience would be welcome,

Rachel

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Seems like it was always pink and irritated, I often had to clean off dried blood, but I don't recall any dripping.  In your case, it probably appeared to be more blood than was actually there, because you had also applied some water.  It doesn't sound like a medical emergency, but let some others chime in here too.

Deb

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Deb,
Thank you, this is my second tube. I was treated for stage 3 NPC in 2000, I had one put in then during exploritory surgery. It was an every loving nightmare. 9 months in and couldn't wait to get it out, then of course that was another nightmare and I passout from shock when they wrapped it around there hand and pulled like removing a bandaid. Now in my 13th yr of surving my "Slim Quick" (apparently we all have names for it) I developed Dysphagia and needed this one. I was as you can guess just from that. Brief bio that I was terrified, they told me they would go lower than last one(the first one was right where my bra would sit) and they never have complaints. So what did they do, put it right next to the org. Bullet hole just as close to bra with this God awful disk.
I am not that concerned, but I didn't have it the first time so I wanted to put it out there and hear if anyone else did.

Take care,

Rachel

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Rachel

did it stop bleeding yet ?   I had some bleeding once in a while, but one of the nurses told me it was mainly from the constant irritation by the feeding tube..... i.e., the weight of the tube was constantly pulling down on the stoma (gravity), so it was getting aggravated.....I finally took the end of the feeding tube and tied it to a length of soft shoelace (actually 2) and tied it around my neck.  that ended up being an easy way to carry the tube and it lessened the pressure on the stoma, so it stopped bleeding.

Also, you can try to GENTLY move the disc a little bit higher up the tube to get it a little bit away from the stoma and give you some breathing room....it shouldn't be so tight that it is leaving marks.

hope that helps.  If you can't get the bleeding to stop, go to the ER.

 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Ingrid, thank u. I feel better hearing someone else has had it happen on here. It does seem to have stopped and was never gushing, like Deb said it might have been exaggreated by the water I was cleaning with.
I did not know u could move disk up, knew I could turn to not get same marks everyday, but to get it off my skin would be a blessing, I look at tomorrow. Again thank you!

Take care,

Rachel

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Mine would bleed a little bit now and then. It wasn't a constant thing but it did happen. I know whenever it would hang for too long, like before I was able to tape it back up after my shower, I would find blood there later when I changed out the gauze.
Billie

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

discovered that the disk moved...and when I found that out, I immediately gave myself breathing room....LOL.

Depending on how big busted a person is.....I'm never was, and the girls are even smaller now.....but I found stretchy camasols on Amazon, that come with a build in shelf bra.  They kept the tube stable and held it close to my body....then just tuck the end into the bra part.   Pretty much eliminating irritation to the stoma.

p

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Phrannie,

I know how to spin disk, but how do you pull it out a little, I don't have enough room to hold tube under disk, and afraid that if I move up holding tube above disk, I could pull it out at slightest tug?

Rachel

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

My PEG 2

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

My PEG 2

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Sorry for double post.....

This is a bad picture, but does your feeding tube look like this one ?   (I stole this from Kent Cass's page).

you should be able to move the disc away from your body a tad.....just so the disk is not embedded into your skin so that it leaves a mark.....if you can't do it easily, don't tug on it.....(it may be stuck due to gunk sticking to it)....but don't try to force it.

Just ask them when you see your doctor next....or call and ask them over the phone.

 

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Ingrid,

It looks like this one, I will try if no go on "gentle" tug ill ask primary on 3/12

Thank you, although they should ban this, they are INHUMAN.lol

Rachel

donfoo's picture
donfoo
Posts: 1332
Joined: Dec 2012

Is THAT what they look like? It looks huge. HOw the hell do you cover that thing up? I'm thinking maybe there is a small stub that stays and all the rrest of that crap comes off. If that is what is stuck on my stomach all the time I just erased the PEG item from my dinner order.

CivilMatt's picture
CivilMatt
Posts: 3094
Joined: May 2012

Don,

 

They make a flush mount model for those inclined.  Someone on here had one installed recently (and it looked real good).

 

You might miss out on the threads where everybody describes their method of “tie-up”.

 

Oh the good old days of sleeping on my back and discovering the PEG wasn’t closed or was dangling to my knees.

 

Best of luck,

 

Matt

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Donfoo,

Now that I am done laughing out loud, I think that looks bigger cause its on a baby. Mine is probably 3 or 4 inches in diameter and the tube is a little long(don't know why it has to be so long). Hopefully you'll never need one. If they tell you it doesn't hurt.. bulls...! It is not anywhere near a lot of pain we dealt/deal with during treaments, but its very sore when first done and getting used to that disk is to say the least ANNOYING, the little disk dig in, I knew I could spin it, but apparently I can move it out a little, I am taking PHrannies advice and trying to move a litlle each day. The alternative in my case would've been death(the 2nd time). I am a 12yr suvivour, in my 13th year, I developed Dyshalgia(which is I cannot swallow and food goes into lungs) so I would get no nutrition orally and keep getting pnuemonia and eventually it would take me, so no brainer 2nd tube! I am working with new speech therapist starting Friday and hopefully this will not be perminate. So know what your facing ad do what u have to to LIVE!

Rachel

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

DON

Don't panic...the picture above is shown on an INFANT.....so it does look huge.  Sorry about that !  Didn't mean to scare you.  It really is not that big on an adult.... I mean you will know it's there, but you get used to it pretty quick.   Get some packages of new shoelaces so you can tie the end of the tube up and hang on the shoelaces that you can wear as a necklace....worked for me, and even could use in the shower and then just changed out between 2 sets so one could dry out.

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

to manage it....I was also using neosporan on the skin around the stoma, because I was having so much problem with granulation....neosporan made the tube more slippery....I put some on the other side of the disk to slick it up too....then started working it....moving it only a tiny bit at a time....I worked on it over a couple days. 

CivilMatt's picture
CivilMatt
Posts: 3094
Joined: May 2012

Rachel,

 

I went through 2 PEGs, I loved my first one so much I said “give me another” and they did.

 

Mine did the same as yours, marks on the skin and (dried) blood all around.  It wasn’t a constant issue, but it seems each week I would clean all around with peroxide and a Q-tip.

 

Today you can still see the marks left by that flange do-hickey.

 

Unless the bleeding is constant it probably is just irritation.

 

PEG on,

 

Matt

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Matt,

I think they all have an ax to grind or mad at someone and take it out on us with those damn disks. They are very irritating to say the least. It is so uncomfortable as a woman to wear needed things, and then to put two tubes in same spot 13 years apart...give me a break, especially when I discussed how uncomfortable that spot had been. I may have lost some weight over the years, but my gosh I know my internal stomach is bigger then just that spot. I think he saw easy in an out and went through same spot rather than heed org. Request. Oh well, nothing I can do, don't want another surgery so deal with it.

Thanks for telling me its normal, like I told ingrid it stopped, ill be alittle nervous to pull gauze tomorrow, but I am sure God will be looking out for me. Good night friends, don't know where everyone is, but 1130 on the east coast and tired!

God Bless you all on our site,

Rachel

wolfen's picture
wolfen
Posts: 1213
Joined: Apr 2009

I was just getting ready to ask the same question when I saw your post. Hubby had his put in a week ago and I noticed on Fri. morning that it was bleeding. It seems to be each morning. I am still cleaning and changing the gauze each morning. It's not dripping, just sort of oozing. Hubby coughs very hard a lot at night and though it's a no-no, pushes himself up with that arm.

I, of couse, freaked at 2:00 Fri. morning and called Home Health.  The nurse just suggested a larger gauze. Hubby showed it to the nurse who visited on Sat. and she was not alarmed.

Ingrid, thanks for the shoelace suggestion. Now, if he just doesn't hang himself on the shoelace.  LOL

Luv,

Wolfen

corleone's picture
corleone
Posts: 173
Joined: Jul 2012

Mine had a small hemisphere (mushroom shaped) end inside, but outside was nothing to hold it in place, except for the dressing. Therefore, it moved a lot (with the respiratory movements, and any type of movement actually) and created a bit of granulation tissue around the stoma. The granulation was painful and very fragile, and it was bleeding easily.

wolfen's picture
wolfen
Posts: 1213
Joined: Apr 2009

Hubby's is like the one in the above picture. It all stays together. He has a closet full of pullover shirts which are temporarily useless, so I went to Goodwill on Saturday to pick up several nice, clean button up shirts which will cover it appropriately without causing discomfort. We're using Ingrid's shoestring method or Hypafix tape to keep it out of the way when not in use.

Luv,

Wolfen

donfoo's picture
donfoo
Posts: 1332
Joined: Dec 2012

I am glad to have tracked this post as it really has changed my mind on PEGging up early. I am going to put PEG as the backup method for hydration and nutrition and be as creative as possible to find all manners of getting stuff down my throat. For every day I get by without it is one less day that I might have to have it sticking out of me. v This decision will make my surgeon happy too; he has been really pushing me to keep the swallow function work as most as possible.  Of course, I will PEG up in seconds if my hydration or nuttrion fall below required levels.

Thank you CSN, it is a great place to get the down and dirty for surviving the various treatment regimens and host of side effects. don 

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Be aware that it is possible to wait too long to get the PEG.  I was okay, some three to four weeks into my treatment, and the installation was easily accomplished.  For a fellow patient in my support group; by the time he sought the PEG, his throat was so inflamed that it was impossible for him to be intubated for the surgical procedure.   He had a port previously installed, and had to finish out his treatment surviving on the more costly and challenging nutrition via TPN.  (total parenteral nutrition)

Deb

 

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

tho I'm sure you can pour water and Ensure down it right away after insertion, I wouldn't have been able to stand all the lifting and turning it to put stuff in it for the first 3 days after it was put in.  Every movement caused a cramp much like labor pains (no kidding!!)...it would start, then cresendo into into a peak over 45 to 60 seconds....hold that peak, then subside.....only to return a couple minutes later.  They came less often after 24 hours, but it continued to happen for 3 days.  Then it was fine.

p

fishmanpa's picture
fishmanpa
Posts: 1134
Joined: Jan 2013

This is the only thing that members of my team disagree with. My surgeon is saying I'll be fine without one. On the flip side, based on the difficulty I've had with my throat and eating after my surgery (surgery on Feb 7th...first solid food yesterday...fish and veggies), my radiation oncolgist is wanting a PEG put in as a precaution. 

Reading this thread made me think twice but I'd rather have the inconvenience of a tube sticking out of my stomach, a little discomfort and bleeding, than put myself in a situation where I need to be hospitalized for lack of hydration/nutrition. Even after treatment, I'll keep it as a backup in case I can't get food down.

After what I went through with the surgery, and knowing that 3-4 weeks my throat will feel the same or worse is causing me some major concern. If the last month is any indication of what rads will be doing to me, I'd rather be safe than sorry because I'm not pulling any punches, it was absolutely miserable pain. Every swallow was a challenge. 

"T"

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

players disagree on, I'd be saying "Thanks Dr. Surgeon, but I'm going along with Dr. RO...he gets my vote.".... I think you're making a good decision.  I know some Dr.'s are afraid that a person will become very dependent on the tube, to the point they refuse to swallow during treatment...however, I don't hear about many of them (in this forum or other HNC forums I'm part of).  Like a few others on here, my Dr. made it his business to put the fear of gawd in me about losing the swallow ability, and what that loss would entail after treatment was over.  No matter how much it hurt, I managed to figure out something that could be swallowed everyday, and I think most of us worked on it daily.  I wonder how many times these Dr.'s have to eat (and swallow) their words, when they advise against a tube.

fishmanpa's picture
fishmanpa
Posts: 1134
Joined: Jan 2013

P,

Ultimately, it's my decision. I wrote my surgeon as I had a few concerns about treatment. The scar on my neck is healing nicely and I've been treating both sides of my neck with a recommeded cream (Special Care Cream) to help condition my skin for the radiation but I'm concerned the radiation will quell the healing of the incision and cause it to produce scar tissue. Also, my swallowing ability has been compromised. It's getting better but with treatment, I am concerned about it getting back to normal. He's confident I will be 100% by the time rads start kicking in. All I know is that it's going to suck ~lol~

I can't put into words how difficult the last month has been. I just wasn't prepared for what the surgery would do to me. I heard the doctors but it still caught me totally off guard. My left arm and shoulder have been compromised more than I imagined. It's still very weak. I do the PT I was shown but it's going to be a while until I get it back, if I ever do. You can see a significand difference in the trapezoid muscles on my left side. Up until a couple of days ago swallowing was still very painful. I had to take my pain meds just to get some soft foods down and even at that, it was painful. The couple of weeks right after surgery were so bad that it literally exhausted me trying to swallow water.  

All that being said, it's my body and my decision. Unless the doctors refuse to do it, I'm having the PEG put in. 

"T"

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

T,

You know reading all of you going through this now and poor Donfoo being very concerned about it. When I went through treatment, I didn't have option with my surgeon, on preliminary look and see surgery, it went in. I resnted it immensely(and gastro docs there messed up, and that's what caused all the pain) but I don't recall ever needing it because my mouth was so sore I couldn't eat because with treatment I developed "food adversion" much like a pregnant woman. I saw, smelled or saw food and threw up, includng the tube food. Eventually I wasn't eating enough and gettung fluids constantly, my mom finally put gatorade in and I held that down, so I lived on gatorade and Lipton chicken soup. Now also when I was treared it wasn't normal proto call to involve speech therapy(wish there was now), however, I have been eating, chewing and swallowing for 12yrs and still lost my ability to swallow. I would tell all of you along with speech, see physical therapist to work your neck(my muscles have hardened so much on lft side to mk up for rt, that is part of problem) and also when done treatment and recovered some start looking into cancer neck message, so you keep it relaxed and don't later in life loose your swallow and movement like me. I don't know if it will prevent the love rad therapy constantly pays as times passes, but if I had known then, I would have done what I just said!

Man I can talk huh? Keep pushing on T, Donfoo, and everyone fighting and "living after "slim fast"

Rachel

donfoo's picture
donfoo
Posts: 1332
Joined: Dec 2012

I was 100% in the PEG up early camp and I do respect GREATLY the experiences shared here but still think there are many other options if one thinks out of the box a bit more to find relief from the pain associated with swallowing. Of course I dun't know shiite as Ricky Ricardo would say but I don't hear anyone talking about using the can of the stuff, your ENT uses to numb you up when doing an endoscopy or the dentist using the spray stuff to numb you up. 

Like I say I dun't know anything. For example, the area needing the numbing may not even be in your mouth or in an area just too far to get to. If too far, then add some extention to the spray can to reach further down. Change the tip so it sprays omni-directionally rather than in a stream. 

I'm thinking of a dozen other ways to alleviate the pain associated with swallowing. I only need relief for 10 minutes time window to get the food down.

 

Don

http:beatdown.cognacom.com (personal blog - Please join)

 

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I used an ID badge clip to hold my tube up, to keep it more secure without so much tape.  The badge clip snapped around near my tube end, and then I clipped the little "toothy" end of the badge clip to my bra or undershirt.  I paid like four bucks for a multipack of clips, I think at Walmart, I believe.  I really appreciated them.  Oh - and undershirts - I almost always wore a "wife-beater" - form-fitting - this helped things stay in place, too. 10 ID Badge Clips -  Clear Vinyl Strap - Badge Holders

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