RIG

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Hi, I was diagnosed with head and neck cancer Nov 2021. After surgery to remove 2 tumours from back of mouth and under tongue I was recovering well until starting radiotherapy. 8 sessions into prescribed 30, the side effects started. A week later I became unable to swallow liquids and was hospitalised for 2 weeks during which a NG tube was fitted. That was the beginning of March 2023 and I still need a feeding tube. Despite following all the exercises, I am unable to eat anything other than small amounts soft food covered in sauce. I have been told the radiotherapy side effects could last 6 - 9 months or more. As I see no improvement its become quite depressing. However, it is what it is and moving forward it has been recommended that I move to having a RIG fitted for feeding. My consultant says the only downside to this is it may impact on intimacy. Without sharing details (!), does anyone else have good/bad experiences of RIG feeding? Apart from Consultant’s comment, does this show through clothing? Any hints and tips most welcome.

Catmarel over 1 year ago

Morning Letti

If you put Feeding tubes/ RIGS/PEGS into search at the top you'll find quiet a bit on it, especially in recent posts.

I am Rig dependand and will be always. So please feel free to ask any questions.

They take a bit of getting used to, but at the end of the day they give you the vitamins etc your are going to need to get through treatment.

As for showing through clothing, it depends, you can buy a belt of Amazon, again pop feeding tube belt into their search engine. The best one is the one with a pouch at the front and straps.

Cat x

Beesuit over 1 year ago

Letti said:
My consultant says the only downside to this is it may impact on intimacy.

Hi Letti. I haven't had a RIG but without sharing details I can think of a few ways of avoiding interfering with it

Letti said:
does this show through clothing?

No. Lots of people wear a belt to keep the tubing safe against the tummy

Dani

Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

I BLOGGED MY TREATMENT

Macmillan Support Line - 0808 808 00 00 7 days a week between 8am-8pm

SteveyN over 1 year ago

Hi Letti,

I am 13 weeks out from chemoradiotherapy. I had a RIG fitted before treatment and I have been using it since the last couple of weeks of my treatment. I am relying on it for my nutrition and hydration, but I can drink slowly (takes me half a day to finish a small cup) and eat small amounts of soft food.

I can't see how it would have a negative impact on 'intimacy' unless your partner lacks empathy (I am sure that yours doesn't!). I suppose for new or more casual relationships, you might have to be confident about explaining your situation before it surprises someone. If someone cares about you, they will just be pleased that you are getting treatment and want the very best outcome for you.

I can imagine that with swimwear or midriff-revealing clothing, it might be more difficult to hide the RIG. If I was me, I would go loud and proud... I'd decorate the RIG with glitter and sequins ;)

The RIG goes into your stomach slightly to one side, just below your chest and several inches above your navel. When you are not feeding, there is a small length of tube coming out from your stomach and you can get velcro fittings to keep the tube secured down. In regular clothing, it will all be covered up. I have a feeding pump and a rucksack (all provided by the NHS/Nutricia) which allows me to feed on the go. You can have the rucksack on one shoulder and any excess tube discretely tucked into your waistband or top.

I have never regretted having the RIG. It is keeping my weight stable after losing about six stone before and during treatment.

Best wishes

Steve

Diagnosed Feb 2023 with base of tongue cancer, oropharyngeal squamous cell carcinoma (OPSCC), HPV positive, staging: T4aN2CM0

Letti over 1 year ago in reply to SteveyN

Thank you for all the replies. You have provided more assurance on a practical level than I have been able to get elsewhere. I’ll go ahead with the procedure with much more confidence now.

Cheers

Letti

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