I had a near total glossectomy in Feb 2004 and a PEG tube was implanted during the surgery. I was not to;ld or was I wise enough to ask about how often to replace. So I went along with it with no problems until about a Nov 2006 when I developed several infections. Antibiotics (augmentin) cured it for the time being. I had swallowing therapy and passed the Modified barium swallow test bur wasn't aggresive enough in regaining my eating. In other words, I allowed myself to become tube-dependent.

In Jan 2007, the top of the tube became corroded and my local GI doc tried to pull on it to remove it. He pulled several times andit was very painful. My next step was to go to where the original tube was placed on Feb 2007. They found the tube had been in so long that it was hardened and embedded so it had to be removed by endoscopy. Another was implanted endoscopically. The second tube was called a "Mickey" button. Theu told me to come back 6-7 months later to have it replaced. I was beginning to have some occaisional pain in the tube area.

The second tube came out fairly easily much to my pleasant surprise. This one was a balloon type that he inflated after insertion. There was some bleeding but not bad. I confess that I took some pain meds before the procedure.

About several days later, I noticed some bleeding from the area and some of the discomfort like an occaisional "stab". I thought I had perhaps got infected there and got some augmentin from my doctor 4 days later. Took it for 3 days but noticed bad diarhea and I felt a little dizzy. So I stopped the medicine and this went away. During this time the bleeding became more frequent. Like a heavy spotting but only occaisionally but never had any bleeding or pain at night when I was lying down. This leads me to the conclusion that the movement of the tube inside must be the cause of the discomfort and spotting of blood. The bleeding has reduced considerably since going off the antibiotic yesterday.

Thanks to a brave soul named "misskate" (who posts on cancer blogs) I began I concentrated program of taking more and more nourishment orally in August. I now believe that I can sustain myself without a tube if I had to.

Has anyone had similar PEG tube problems? I think my best course is to go back to the doctor and ask the tube be removed permanently.

Some lessons I want to pass along to new PEG tube users is to inquire when the tube should be replaced. I know I should have done it but when you have this disease you are thinking about so many other things. Still, no excuse.

Jim

SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies; PEG tube problems Nov 06 to present

I would appreciate a response from anyone. The silence is deafening!

Jim

Jim
I wouldn't post. Hoping someone would have an answer for you.
I had a PEG but only for 3 months so never hit this stage.
I would think back to your Doc's for more advice.
Do you think you could manage without it?
Sunshine.. love and hugs
Helen

Jim, I think your docs can give you the best advice about this ebcause I think it depends on what type of PEG arrangement you have. For exmple, I know that there is a "button" you can get, if it's expected that you will be dependent or partially dependent on tube nutrition and my impression is that may not need replacing so often. My docs have said the tube itself, if there are no infection problems with the site, can be in for a couple of years. But that may vary by type of tube and your history of infections.

I have had a PEG since April 2005 but I had it replaced July 2006 during a surgery to remove a complete esophageal stricture (they had to pull out the old PEG to do the surgery). So far (knock on wood), I have not had problems with my PEG since then and I am hoping I can solve all my swallowing issues well enough to have it removed before I have to get another one.

However, my medical oncologist, primary care doc, and gastroenterologist are all being pretty cautious about recommending the PEG tube come out even though, like you, I believe I could get by without it if I had to. I am still restricted to liquids and pudding-textured things, however, and also have a very sensitive mouth where sometimes it seems like almost anything causes some burning sensations (sometimes it's better than that--I take a lot of tylenol and aleve), so there are some days where, honestly, it's nice to still have the g tube and pouring cans of stuff down it often is what allows me to work a full day and still get adequate nutrition since I don't have time for two big bowls of soup during a work day filled with meetings.

The other reason my docs (and I, to a lesser degree) are recommending caution in pulling the g tube is concern over how I will get necessary meds down. My Mouth has a lot of fibrous scar tissue in it and little bits of stuff get stuck in spots, so grinding up pills and swallowing them in a glass of water isn't necessarilly optimal. My MO gave me scrips for a liquid form of iron and of Tamoxifen (which I really need to be sure gets into my stomach because it helps prevent breast cancer recurrence) but, unfortunately, both of them are in some kind of alcohol base and set my mouth on FIRE when I tried to swallow them (so now I'm pouring them through the g tube).

I don't know if you have any meds you regularly take but it's worth thinking about if you can swallow pills when you think about getting the tube removed, and, if not, discussing with your docs how you'll get your meds down (for example, I also take a thyroid med and it shouldn't be taken with any kind of food so I will have to just swallow the bitter pill powder in water, and hope I can rinse the bits of it out of the spots in my mouth where things stick, if I get the tube removed).

Believe me, I'm not advocating keeping the tube if you don't have to, but I do see my doctors' points about issues I may have without it. The "button" sounds less intrusive than the tube, easier to cover if you want to go swimming, etc. and I may see if I can just switch to that so I can still do meds that way--at least until I can either swallow pills or until I'm off the Tamoxifen (another 3 years).

Nelie

Helen and Nelie,

Thanks for the input. One advantage I have is that I am retired and have the time to orally consume my 300 calorie cans of Nutren that I found flavor pack for. What a big help this is not to be limited to vanilla or chocolate. I sympathize greatly with those who have swallowing problems and are in the workforce.

I find I have an easier time with thicker liquids than with water for some strange reason. I have to take my time with water. I have been practicing taking meds that I crush orally and am OK except for a large cholorestoral pill that tastes foul. So my main concern with pulling the tube is getting enough water.

My wife made me go to the emergency room last Friday night. The doctors there confirmed I had no infection and said what I was experiencing was an "irritation" and suggested I see the GI doctor that placed the tube 10 days ago. I plan to do this and to see about the possibilities of pulling the tube (I hope sooner than later).

I believe the irritation is due to movement of the tube inside because I experience no bad symptoms at night while sleeping. It does seem to be slowly getting better with fewer pain attacks and lesser draining.

Good luck to you and Nelie I hope you will be swallowing good very soon.

Jim

James, my DH also has the MicKey(also known as the button). He had to have it replaced about a month ago, this after about 9 months. It was completely deflated and could have pulled right out. He has not had any bleeding or leakage, but some discomfort which we think is due to the "bubble" being inflated again to keep it anchored and taking up a bit more space in the stomach than the deflated one that he was used to for who knows how long because the solution was gone. Let us know what your GI doc has to say.

I have has a PEG ballon tube since May 2007 and now after reading these post I am getting nervous. My outlook for ever eating agin is not good. I cannot swallow anything but thin liquids. I am only 58 and the fuure life like this is very unnerving to me. I have been doing exercises for 5 months and only show slight improvement as results from a swallow test today. I cannot drink the liquid nutrition cans as I asperate the liquid to thick for me. Any suggestions to help improve swallow function would be greatly appreciated.

I had mine removed because it caused too many problems also.

First part for Jim Walton,

I had swallowing therapy for 8 months, the last 3 or so with something called VitalStim where they electronically stimulate your throat area. They also gave me many exercises including the Bitewing to stretch the mouth, sucking pudding thru a straw among others. I also had my esophagus stretched twice. This really helped too.
Good luck and try to keep swallowing. I still have to drink thinner liquids slowly but I get the job done. I wish you the best.

Second part. You might want to skip this if you have a queasy stomach.

I had no clue what PEG tube hell was until last night. As I mentioned, I had some blood spotting since Sep 20 but was always able to get in under control. Last night, I looked at my dressing and it was soaked in blood. I could not get it stopped (like a hemorrhage). My wife called the ER and they sent an ambulance. By lying prone they got the bleeding to stop. When I got to the ER, the doctor checked with a GI doctor who gave peremission to pull the tube. So she just deflated the balloon and out it came. Some bleeding afterward but nothing like before. Bleeding now totally stopped but having some watery residue. They said this is due to the hole in the stomach where the tube was and this will in time close up. They also took a blood count as I had lost a fairly good amount of blood but it came out OK and I went home.

I will always be eternally grateful to "misskate" who inspired me to push for 100% feeding by mouth in August 2007 and to the therapists who helped me to swallow.

Jim

No Problem Jim!

Ther are physical limitations no doubt for many people still living on the PEG tubes- and sometimes there is just nothing that can be done but aggressive therapy and just keeping at it CAN result in being able to swallow more kinds of liquids and foods.

I'm so glad you were brave enough to keep at it and keep trying and to seek out the professional help to get there. It was a lot of work and frustration I'm sure but your quality of life is going to be so much better now not to mention the nourishment of your body.

Go Jim! Congratulations Keep me posted on your progress!