Pain in back

Hi Judy, sorry to hear about Rob's discomfort. I was given dihydrocodeine when discharged from hospital and told to take paracetamol. But I didn't have too much pain and was able to come off the painkillers after a couple of weeks, I don't like to take them longer than I have to. Regarding the diet I never had any blitzed food, not even in hospital. I wasn't given a special diet I just had to choose from the same menu as people in the ward I was in. I did try to choose what I thought was easier to swallow although I think I had a pork casserole one day. When I got home I had a couple of ready meals like Carbonara and lasagne. Generally anything that incorporated a sauce, chilli con carne and chicken curry of the home made variety. I avoided toast and garlic bread for about two months, after I had my gullet dilated I braved the toast. I had been craving toast for months, people would say that I bet your looking forward to a steak, and I would reply no I'm dying for some toast. And when I did have hot buttered toast it was delicious ! So I would describe sloppy food and foods that don't require a lot of chewing. Good luck with the menu and pain management, kind regards Frank.

Hi Frank

I think I will start to introduce more sloppy foods now rather than blitzed. I can make casseroles and shepherds pie etc. That’s so funny because I had some toast yesterday and that’s just what Rob said. He could eat some toast with butter. 
Thanks again Frank for your advice 

Judy xx

Hi Judy

First please ignore selfies. I placed one at the end and they appeared everywhere and I cannot delete them lol. 

I am 5+ years since my treatment and back pain, high up in the back and the nagging ribs pain visited me now and again over the years. Due to nerve damage that happens during this radical surgery, residual pain should be effectively controlled. Unfortunately I had a reaction to morphine so was give fentanyl. I still use a fentanyl patch that I change every 3 days. I am happy that I have redud the strength from 100 to 25microgram patches as the do sometimes cause withdrawal symptoms, which I experience about 12 hours before I am due a new patch. I am working to get off this medication by end of year. It is however very effective pain relief. How is Bob's stamina and fatigue levels? Mind is pretty high so periodically  I sleep most of my down time as work full time. I have been fightinfor years to get the correct tests to identify vit B12 deficiency. I have been told by my GP that the NHS system don't offer the tests to distinguish between active and inactive B12, resulting in a false positive in some results. At Last I have a GP at my practise who agrees that I should try the vit B12 injections and has promised to arrange this when surgeries open up to see patients again...  . I only take paracetamol on day 3 as the fentanyl effect has usually reduced. He should not have to suffer pain. I would contact his specialist nurse. Stay safe. Eddie. 

Hi Judy

Glad Rob is relatively ok after his surgery.

I had a lot of pain in my shoulder, back and abdomen post surgery. I'm coming up to 4 months post op now and the only pain I have left is the back pain. It's kind of on my right hand side halfway up my rib cage. I asked my CNS about this and she said it's where they took the piece of rib out. Morphine has no effect on me so I had Longtec and Shortec instead, along with regular paracetamol. I just take the Shortec now if I need it, nothing else. I was in pain for some time post op though, it took a good couple of months to start easing off.

I was on sloppy food such as yoghurt, soup, ice cream for one month post op. I was told not to eat anything solid before then. 

Thanks

Deb x

Hi Eddie

thank you for replying. He has terrible fatigue which is just not Rob. It sometimes feel strange watching him in bed so long. I do worry he isn’t moving about so much. He does try to have little walks during the day but I think the morphine makes him so tired all the time. 
We are having a telephone consultation tomorrow with the surgeon and nurse do hopefully they can suggest what to do and I want to make sure I’m still giving him the correct amount of food. 
Judy x

Hi Judy I had alot of back and rib pain surgeon told me it will ease with time they gave me oral morphine which helped alot after about 1 week  I went on paracetamol only  9 months on still get slight tingles but was told it's nerve damage were they went through the skin but hey to be still here with a bit of a tingle is nothing food wise after about three weeks I was eating most things it took me quite awhile till I tried steak now everything is brilliant but meals alot smaller try ringing dietian and ask or  gi nurse they told me reason for mashed food was to stop any damage to joint in the gullet  everything sounds similar to me but any probs speak to nurses mine were brilliant keep go Rob all sounds good he pain will ease they cut a piece of my rib off that was alot of the pain

Good luck  john

Hi John

thank you for replying. The paracetamol definitely helps Rob now he takes it every day. 
He has eaten mince and potatoes today and had some ravioli at lunch time. So I think he might introduce more less mushy foods now. 
He is definitely looking forward to the pain easing and getting off of tube feeding. He feels like he doesn’t need it anymore. 
Thank you for sharing your advice 

Judy xxx