RIG Dependant - Torturous & Repeated Chest Infections

Hi Reevesey. Just wanted to say hello I do remember you, am wracking my brain to think of anyone who has experienced the same as you are going through. We’ve a few on her who are totally peg reliant as you  probably remember Chris one if our champions is but I don’t recall him having the same issues. 
hugs Hazel 

Hazel

Thanks - I’ve had all sorts of talking based therapy including CBT to try and get my head around this predicament but dealing with the physical aspect is way beyond any sort of advice/guidance or self-help obtained through therapy.

I am worried about my long-term future and the concern that repeated chest infections will ultimately get the better of me. As such (as you can imagine) I want to do everything I can to avoid getting future infections as the last 7 days in hospital suffering aspiration pneumonia has left me on my knees with exhaustion.

Hi Reevsey. Just wanted to say hello too. We do have a forum member who has had repeated bouts of aspiration pneumonia is and was in the process of making the decision to be PEG fed permanently. As you can imagine I won’t tag him but I’m hoping he might see your post and join in 

It must be devastating to imagine the road you might travel and I can only hope that you find some solution and some peace. 
Hugs 

Reevesey

i have been peg dependent since Dec 2020, I had throat operation where 2 surgeons at same time went in my stomach and other down my throat to make hole in throat muscle, this was followed by 9 throat stretches one per week, after the ninth stretch,  bile in my stomach keep coming back up which put me in hospital for 10 days as it burnt all my mouth , youngest, and lips, they then decided that they would let my throat heal back up, so I was on the pump to be fed 10 hours at night with the peg going into my small intestine. Once throat healed back together they removed the peg from small intestine and put one back into my stomach and have been told I will never eat or drink anything ever again, it was the radio therapy that did all damage to my throat muscle, and now the radiotherapy as damaged nerves in my neck that send signals to my shoulder blade so cannot lift my arm higher than 90 degrees.Wish I could tell you there is light at end of tunnel but it’s hard work all the . Best of luck with your treatment, I find it lot better to manually put the feed in so I can at least get some sleep at night

Neil - it sounds like our ‘journeys’ have been very similar?! I have lost so much musculature around my neck, upper-back and shoulders I too can’t lift my arms above my head but hadn’t considered that it might be combined collateral damage with the radio! I am now 100% RIG fed getting a new one fitted every 3 months at home. I was advised by a gastro surgeon who was set to assist putting a PEG back in (instead of a RIG) that given the fact that ENT had previously torn my oesophagus when stretching on my 7th stretch operation he was very reluctant to fit a PEG given the risk to my throat, hence having the RIG.

I use a rucksack with a battery powered machine to pump my food in (supplied by Abbott) and I had set the flow rate over 200ml per hour but the dieticians go nuts because the rate being only increases the chances of aspiration! The problem is that your saliva carries the risk of taking bacteria into your lungs so I don’t know what to think/do really. I’ve dropped my feed rate down to 175ml per hour but to get x2 feeds of 750ml in every day I’m attached to my rucksack all day which is a major pain but like you - I’ve been advised not to eat or drink anything as my throat is totalled and my epiglottis doesn’t move anymore too! Has my last meal on the 31st July 2022 and every day since has been torture as I’ve always been a huge foodie!

I’d appreciate any experiences to aid my journey…

Hi Reevsey

Adapting to such a major change in your life must be really difficult. Sometimes our 'new normal' is hard and it can take a long time to adjust to it. My situation is not quite like yours but since 3 major ops and 2 lots of radiotherapy for jaw cancer I have issues with eating and drinking but can manage mainly puree and drinking thicker fluids. However it has taken me a while to come to terms with the fact that I will never be able to eat as normal again. I miss things like roasts, egg and bacon sandwiches, toast, salads, baked potatoes  in fact anything with texture so that is quite a long list. I sometimes just put some foods in my mouth just to taste them and then have to take them out as I know they won't go down. It is quite a challenge when eating out so I don't often do this. Same with drinking. I tend not to drink out as I have a spillage problem so the fluid dribbles down the side of my mouth. My drinks of choice are water and Fortisip and I stand over the sink when I drink the water so it can spill down it rather than down my face.

It must be really hard not being able to eat or drink at all so my situation is not as dire as yours. However adjustment to the changes is a common thread for both of us. Over time I have managed to come to terms with the changes and worked out ways and means of coping when I am out. I have even managed a few nice holidays using self catering accommodation. I don't want to limit my life because of the eating issues so have decided to get out there and enjoy my life and have had some great experiences as a result.

Sending you my very best wishes.

Lyn

Hi Just joined as my partner is similar boat and been trying to find support groups for people who are now coping with NBM for rest of their life. Seems like a search on this always comes back with end of life support - rather than how to manage , as you say, for the long term future. Suspect more people will end up like this ,as better treatments save more lives - but feels like more attention needed to those who have many years ahead and need to adjust to a new normal thats far from normal. 

OAR - you are right, 100%! No more snacks, treats or celebration drinks - no more husband and wife anniversary meals at our local pub and for me, the prospect of having to ‘brave-face’ the prospect of NEVER being able to eat or drink anything orally again until I step off this piece of rock!! Sounds a bit out there but it is the reality of it and the one thing that is especially challenging is that NBM doesn’t just affect me it has a huge domino effect on everything and everyone you come into contact with. If the roles were reversed, would I want to sit eating a meal on my own in a restaurant while my wife had a ‘bottle of beige’ (that’s what I call my TwoCal feed) electronically pumped into her stomach via a machine carried in a rucksack? No, I wouldn’t!

Easy, it isn’t. I would always welcome sharing stories and certainly hearing and/or being able to support your other half…

Neil - am I permitted to ask how old you are and what you’re up to?

I am 53 (diagnosed in 2018 and treatment between March-august) and am trying to continue to work fulltime but it’s challenging as during the last 6 months I’ve noticed my ability to talk is slipping as everything in my head, neck and throat seems like such an effort and at times I have to stop talking or lose the ability completely. It would be good to learn about other peoples journey - not to contrast and compare but to get an idea about the progress and pitfalls. As a result of these changes/slip ups over the last 6 years I am a little concerned about life expectancy which is ironic when I am cancer free and live with the damage caused by the treatment. Three bouts of pneumonia in the last 2 years is a worry that I might be causing gradual and irreparable damage to my lungs…