Sorry if this response is too late but thought I would weigh in with Alex's issues and our solutions.

Alex went from 75kgs (165 pounds) to 48kgs (105) during his illness and was hospitalised last May because of it. His weight loss was a combination of the cancer and his inability to tolerate TwoCal taken via PEG at least 6-8 times a day. He was doing 4 on his good days and 2 on most. He was switched to Nutrison via an electric pump which gave him 2000 calories over 8 hours which was administered overnight. Over time we were able to speed it up and just before he went back to oral feeds (only about 2 months ago), he actually had the thing going at full tilt whilst watching TV before going to bed. He could run his feeds at 400mL an hour which meant he could consume 2000 calories in about 3 hours. This was a speed he worked up to and the nutritionist was not thrilled with as she was concerned about reflux and aspiration. He had to promise to stay upright through the feed and for about an hour after. She was also concerned because he was essentially taking on the equivalent of an entire days nutrition in one sitting.

When he tried the next step of going back to bolus feeds, he was sick. We tried watering it down, and slowing it down and these all worked but it made feeds slow, messy and tied Alex to his PEG more than he was prepared to tolerate.

We finally went to the primary care physician (oncologists were uninterested and less than helpful) with questions about Alex's gastro-intestinal health and asked if somehow the emptying of the stomach had slowed down or stopped for some reason associated with either cancer, longtime lack of real food, or even the cancer treatment. He didn't know the answers but he prescribed Maxalon which is used to stop vomiting by getting peristalsis going again (causes food/stomach contents to get moving through the system) and Somac to treat reflux.

Don't know which worked but one or both did. Alex now takes Somac every day and Maxalon 20 minutes before he eats if he is feeling a bit fragile. He is now on oral feeds of Ensure Plus 8-10 cartons per day and still stuggles to put on weight but at least he isn't losing it. Some days he goes over 62kgs (136 pounds) and then whilst his laurels are poking him in the butt, he backslides to minimum quantities of Ensure which means he undoes all his good work.

Solid food continues to give him a hard time and he cannot get beyond 3 or 4 mouthfuls of anything. He also struggles with the smell of food which makes him nauseous.

Alex used his PEG from March 2010 till about April/May 2011 when he switched to oral liquid feeds. This requires more discipline, but is much more convenient as it can be taken anywhere and he can drink it in public easily. He continues to hang on to his PEG "just in case".

Ask your doctor about treatment for nausea and reflux and see if they think it might help your mother if she wants to continue with bolus feeds. If not, try an electric pump and try different formulas. Alex cannot tolerate Twocal to this day even WITH his antinausea meds.

I also wonder if chemo altered the state of his stomach and he now has an overgrowth of stomach bacteria causing problems (like when you take a course of some antibiotics). I have been trying to convince him to take some of those probiotic preparations (Yakhult) but he seems to think that consuming one once a month constitutes regular use so this has not been a terribly successful strategy so far...

The explosive diarrhoea still plagues Alex and we think it is high nutrition administered devoid of fibre via almost all the liquid feeds. IF you find the solution to this problem, Alex and I would be very interested. There is a high fibre liquid feed but Alex won't shift from the devil he knows right now(don't blame him either after what he's been through).


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight