Nasogastric Feeding Tube - Experiences

Hi Swede, so sorry you find yourself in this position. Life just isn't fair. I can't imagine how you face and reconcile that diagnosis. I have OC too and have just finished my fourth chemo, heading towards surgery.

I can't help with the feeding issue as I have no experience of it...... Yet.  Lol.

I just read your story and was moved to show my support.

Best regards.

Geo.

Hi ..My husband had a NG feeding tube for around six weeks  before he was fitted with a JEJ feeding tube directly into his duodenum ..He found the NG tube intrusive and uncomfortable..especially the bridle under his nostrils which kept it in place …Testing the PH levels to ensure it was in the correct position ( to prevent the feed going into his lungs ) was tiresome too as he had to have several trips to the hospital for X-rays in those six weeks when the pH level read  too high and we couldn’t attach to the pump without checking it was safe to do so ..Unfortunately his experience with the NG wasn’t a good one ..He found the JEJ feeding tube less intrusive and with no PH levels to check we found it a lot easier ..

However  this was just his experience and maybe others have found the NG feeding tube ok 

Regards J 

Thank you for your warm reply, Geo. Knowing that one is going to die pretty soonish sorts out what is important and what is just bollocks. Kind of relaxing.

Thank you, J, for your considerate response. I know everyone's experience is different, but I'll bear in mind your husband's frequent need to go back and forth to hospital - something I would like to avoid in the time remaining. 

JPM  I think I may have replied to myself by mistake instead of you.

Hi Swede ..Apologies if I came across in a clinical manner ..I didn’t intend to .. I’m so sorry to hear you’re in this situation ..It must be very difficult to say the least ..I hope you are surrounded with lots of love and support .

Take care 

regards J 

Absolutely no need to apologise; clinical detail was what I was after. I have a loving partner and a few good friends (that's all you need) who provide comfort and practical support. We have no relatives left in this country, but my family in Sweden are in regular touch. I count myself lucky in ways that perhaps only a terminally ill person can know. One of life's many ironies.

Wishing you and your husband the very best.

Hello Swede, I was diagnosed with the OC in June. I had a naso gastric tube put in in the same month as my gullet was completely closed so could not use it at all. Hmmm, I have found it very challenging to say the least, and feeding is also a trial, I tried several bottle foods and amika pumps  and in the end I am now on fresubin, but as you said none of it is easy and I am constantly having to see the dietician because when blood tests are done, I am always lacking this that or the other. So not sure they really do the trick. Also I thought for the short term, but no, even after treatment one may still need it in, for a few months, I found out yesterday at one of my treatment clinics. So for anyone having to go down the NG route it is challenging. The tube is irritating as well. So now I am just taking it a day at a time. 

Dear Moopsie, Thanks for your helpful feedback. At the hospital all I was told was that it suited some people but not others. Probably because I wasn't asking the right questions, the situation being so new to me at the time. During my research I have come across mostly negative experiences of NG and am inclining towards having a feeding tube inserted directly into my stomach instead - a proposition I initially rejected in a knee-jerk kind of way as it involves surgery and seems more invasive. I now think it bypasses all sorts of problems. Wishing you good heart for each day as it comes.

Hello swede you are very welcome and I wish I could give more info. I did consider the stomach tube but then thought why put myself through surgery when I can hang on in there with this. Though it’s quite painstaking to feed. My children went all militant when I wasn’t getting enough feeds in now we have this feeding chart in place and they all take turns feeding me. As I revert to a baby! And strangely it is working out well. And I am actually for the first time in months getting on with it all. So don’t discount totally! So do make sure you consider all options. Are you eligible for a stent? That’s also an option. Last but not least I am pleased you have an amazing partner and support system as you are far from home that’s all that is ever needed.