I have lost more weight and wonder why. I was switched to Jevity a few months ago to help with constipation. It really doesn't make things much different but I am now down to 125 lbs. Maybe it is the feeding tube that has been acting up. I go the 23rd of this montjh to have it changed again. The tube hurts constantly and leaks thru onto my shirts. As yothat have had or have a tube, the stench is terrible. It would run a dog off a garbage truck and maybe this is a resaon for the loss of weight. Any ideas??

Hi Jim:

What kind of feeding tube - the PEG type (goes into stomach)? I know Christine will answer you because she has one, but not sure what kind. When I had one, I hurt like you say yours does, and ended up with an infection, so have them check that out on the 23rd. Can you eat anything at all by mouth? I supplement what I can eat with Boost VHC which took the place of the Carnation VHC. One small box-type container has 530 calories. You can order it on the Forum. I have trouble swallowing, but manage to eat a few things when they're soaked with gravy. I just took 35 sessions of swallowing therapy but it didn't help at all for me. I know someone who has more experience than I with the different tubes will answer soon. I think of you often and hope you can find a solution to gaining some weight.

Love you,
julieann

Jim, your feeding tube clearly needs some attention even if it isn't an infection (although pain and bad smell equals infection in a lot of cases).

I am not sure how the system works there but in Alex's case it was the nurse who was expert in dealing with leaks, pain and smells, not the doctor who replaced the PEG/feeding tube. I really think you need to ring the doctor/technician who is replacing the PEG, let them know you are in pain, are leaking, losing weight and have a bad smell around the tube and you need to extend your appointment to discuss the issues and give you some ideas on how to manage. I suspect they will find something there that shouldn't be happening (infection would be my guess) that should be treated.

The nurse might be able to give you some tips on how to manage things if it continues or happens again.

Alex had all of the things you are suffering and it was suggested that he go in to see the nurse at a separate appointment to get help. He never got there with other multiple complications happening at the same time and the antibiotics used during his complications, probably sorted out the infection at the PEG site as well.

Alex is fascinated with how things work (fixed his own and everyone elses chemo pumps on chemo days :)) and managed to fix his leaks with gauze under the flange and a clothes peg as a back stop for backflow. For a while there I was a bit worried I would get home one day and find he had used plumbing tape or silcon sealant

What do your doctors think? Is there thought the tube is leaking that much you are losing nutrients, or is it anorexia, cachexia or wasting syndrome or lack of nutrient absorbtion through the digestive tract, recurrence? As mentioned, a bad odor coud be an infection, and see MRSA in the signature, and hope that is all cleared. How much weight was lost. I had experience going from 245 to 130 in a few weeks, with cachexia,sepsis, disseminated candida, MRSA.... I'm now 190, but needed intervention for this multi-factor problem. Other than that, all I can add is to see all your doctors, nutritionist, speech and swallow, and have workup tests done. Good luck

My dear friend Jim.....what the heck am I going to do with you? We talked about your tube a couple months ago when it first happened. Get it fixed!!!! No more putting it off. That is probably why you are losing more weight, the formula isnt all going into your stomach.

If you can swallow, start drinking at least 3 of those Boost VHC every single day. You know you can always add a can (now they are in a box like a juicebox) to your tube feed bag. Also add some water to thin it down a little. You MUST up those daily calories and gain back that weight. It sounds to me like it wouldnt hurt you to gain a few pounds too.

I think you need someone to help take care of you. DO you have any family close by that can give you a hand with some things. I know you are very independent and do everything yourself. You are probably out doing the yard work and working on a garden too. Try to slow it down a little and take it easy. Let some people help you once in a while.

Next week cant come fast enough for you to finally get that tube fixed. If they dont knock you out to fix the tube then tell them you need lidocaine to numb it. Tell them you want both the lidocaine jelly and the the shot too. I get my J/G tube changed every other month (I really hate having it changed more than I can put into words) so Im a pro at getting it swapped for a new one. But my tube isnt like the regular PEG tube, mine goes into both the stomach and also the large intestine. I do mine thru out patient surgery, Im awake for the whole procedure which sometimes can be a bit uncomfortable. Im not sure how a PEG tube is swapped out, but it may be similar. I wish you all the best next week, good luck!!!

Jim,

Those symptoms are indicative of an infection. It's not something to wait on. I would get to your doctor ASAP.

"T"

Ditto what everybody else said, Jim! Let the yard work go, it won't run away. It will still be there whenever you can get around to it. People before things. And you are more important that any chores you have waiting. Call your doctor and see if they can get you in sooner that the 23rd. DO it! And get back to us so we'll know you did it.