Whiitewolf, you may want to start your own thread so you will get more posts.

One more PEG question and then I am done. I noticed tonight that when I was cleaning around the stoma that there is some leakage if I pull the tube up instead of letting it hang down. Is there supposed to be any leakage at all? Should I call my gastro dr. this evening or just wait until Monday? It is not a lot fo leakage, but enough the it does drip down my sotmach some until I just let the tube hang down and then it stops. This thing has been nothing but a nuisance.

Angelia,

The leakage is normal and will continue probably as long as you have the tube. That is why you have to clean around the stoma everyday. Do you have the nice slit gauze pads that fit around the button on the tube and next to the skin?? Those are nice to absorb the gunk and keep the skin drier.

Please try to make peace with your new appendage..it will really be a help later on. Wish I could be there to help you get thru the next few weeks...I am a great caregiver! Hope your pain is better today.

Hugs,

Deb

The pain is constant, and I feel bloated all the time. Glad to know that leakage is common. I will not worry so much about it. I will try to make peace with this new annoyance, but right now I can not even sleep, so I ain't making peace with anything or anyone. LOL
As far as supplies, I have one syrings that the hospital gave me and that is all. I had go buy gauze pads and tape so that I would have them on hand. I have not seen a dietitian at all about this because the one my RO uses is not in my network and has not given me the time of day as soon as she realized she was not in network for my insurance. I had heard that I have been referred out to someone. Have no idea who it is. I know i will see my gastro Dr. on Tuesday to get some answers.

Angelia,

I have two boxes of gauze pads with slits in them to fit around the tube. If you'd like them, they're yours - just let me know!

- Margaret

OMG, I think i hit this stupid PEG in the middle of the night last time. When I woke up the gauze pad was almost completely full of leakage. Guess I will be calling the Gastro dr. after church today. I just hate to bother him on a Sunday.

Angelia,

Monday morning...call what ever doctor's office you have the best repore with and ask them to prescribe an in-network home health company. (I know this can happen as I was getting the run-around from the PCP's office and their home health co. so we ask the MO's office for help.) Get the name of that company and call them yourself. That will get the ball rolling...once you have an in-network provider...they will take over as it is new business for them. Does your hubby do any of this kind of thing...he needs to be helping you thru all of this???????

You need someone who is used to seeing these PEG's take a look and make sure everything is OK (like a visiting nurse.) You also need supplies and supplements...all of this available from a HH Company that will come out to see you, deliver to your door and give you instructions, etc. The dieticians at the RO's office, in my experience, are not helpful with this...it doesn't seem to be their focus ( I felt more informed than she was.)

Its sounds as if you are having to run the show and be the patient. That is very hard and will get harder during your treatment. You definitely need someone to be the "nurse from hell" (tribute to JAM for that phrase) on these things...if not, you sometimes get lost in the crowd. I determined very early on that "if it's to be, it's up to me" regarding getting Bill the optimal care, etc. Your hubby is going to have to step up to the plate on some of this or you perhaps need to ask for help from family or friends.

Trying not to sound harsh but knowing that you need help and support,

Deb

Angelia,

Deb has a really good point.
Is there someone who can "run point" and be an advocate for your care? It is helpful if they can be, hate to say this but, the bad guy.
Sometimes patients are too darn nice or to darn sick to really make a fuss and get the ball rolling. If your in pain let them know that you want it fixed, NOW.
Hope you can find that person.

Margaret

Thank you all. I actually was able to sit down with my husband today and we talked a lot about how he was feeling. I told him, you are avoiding the whole issue, and guess what he was. He only head the bad things from the Drs. and is trying to deal with all this. I do have a friend who is a nurse at our school and as agreed to come and help me out when I need it. She has actually said for me to give her the numbers and she would take care of it all. I do go and buy an ace bandage to hold the tub in place. I love it already. It is so much better than tape.
I had no leakage today, and seems that the leakage comes when I am cleaning around the stoma or I hit it in the middle of the night.

Angelia,

Sounds like progress to me...yea! Any progress during all this nightmare is a good thing! And your friend the nurse if perfect for helping you..good for her.

I often thought during Bill's illness that if the roles were reversed, I would probably be in trouble. Most men are just not very well equipped to be good nurses and I definitely know that my nature to research and gather info was a huge help during all of our treatment. Your hubby does need to put his fear and issues aside (do like a lot of us caregivers do/did..cry when we are alone) and be a partner in your treatment and recovery. So very important.

So glad your PEG did better today (is your pain any better??) The leakage should just be minimal...gunky stuff around and under the button. The wound will start looking better but if not, try some topical antibiotic ointment now and then. Glad the Ace is working...not only holds the tube but makes you feel better about catching and pulling it.

Keep us informed...we have all been there (frustrated, angry, scared) and it helps to reach out.

Deb