Post treatment Rig Issues!

Hi Davy, like you I consider my RIG to have been my lifesaver. When I started to eat more solid type foods, I cut down the amount of my overnight feeds through the RIG, until it was no longer needed, then the district nurse removed it. Fortunately, I didn't have any problems with the RIG, it didn't make me feel sick or anything like that, I just classed it as a necessary part of my treatment. You seem to be doing very well with eating so early into your recovery, all the best.

Ray.

DaveyD - speaking from personal experience having had a OEG during treatment and now permanently fed using a RIG, I’d hold on to the RIG as long as possible ‘just in case.’ I know that’s probably not what you’d like to hear but it’s so much easier to remove it (and less stressful) than to have to have it inserted again.

As far as the nausea is concerned, I found the same thing when transitioning to ‘real food’ - my only guess was because I’d had to depend on the medical meal concoctions for so long that getting back to a normal diet was a bit of a wrench to the system. Obviously, everyone reacts differently and what is typical for one person isn’t for another. I’d reach out to your Community Dieticians to get some feedback from them?

I had a PEG tube for around 6 months and also recognised that it was a life saver but was so glad to get rid of it, started eating small portions of solid foods around week 10 of recovery supplemented by a couple of Ensure2cals orally, gradually built up my solid food intake and ditched the tube feed...hated the stuff.

I had a PEG fitted and was back eating a soft bland diet around week 8-10 post treatment, but still found it useful for hydration and meds.  I decided I wanted the PEG in until I had a clear scan at 3 months - just in case!  Shortly after the all clear I had it removed.  Have a word with your dietitian to discuss moving away from RIG feeds to more normal foods in a controlled manner.

Thanks for the replies - dietitians have advised to half my overnight feed to increase natural hunger through the day, then phase it out the more calories I can consume orally. 

I'm week 4 post treatment and so far I'm managing - smooth soups and soups with small lumps, yogurts, shreddies and Weetabix! I've also had some chocolate, crisps etc but they just taste revolting at the minute! 

Also taking all my fluids around 2/3 litres a day orally! 

I feel like my progress has been a bit slow, or perhaps I'm expecting a faster recovery than is realistic. 

You're doing really well for 4 weeks, taste and appetite will slowly return.

Im 4 weeks out and am only managing water. I thought I'd try some porridge the other morning & one wiff sent me to be sick.

I have a PEG and have been using it exclusively for 7-8 weeks now. This week the thought/ smell of food is making me feel unwell and I cant blame chemo anymore.

I naively thought Id be where you are but maybe I can relax if 10 weeks post treatment is more the norm for bland foods.

I had no surgery. 30/30 RT last one 31st Oct & 5/6 Cisplatin. T4N1M0 16+

Thanks

Becky

I found varying foods based around what I can taste helped, it has been trial and error for alot of things. I seem to have regained my sweet sense of taste back first which has helped, most chocolate based things taste of coffee and I hate coffee. 

I wouldn't put too much pressure on yourself, I think I have been fairly lucky in terms of recovery so far, keep your chin up, there is light at the end of the tunnel! 

Thank you.

Ive finally been offered pain patches which may be the break through i need to concentrate on food and swallow rehabilitation rather than pain management 

I'd say you are doing really well.  There will be a few backward steps as you move forwards, but the aim is to eat little and often and try new things.  Every little bit helps in this marathon of a recovery.