Hi to all. i am new to the forum. Im 55 and i'm 12 weeks post op with a very sore back (ribs ive been told) dumping syndrome, acid reflux, fatigue feeling very low at times and generally aching to my bones on most days! i went straight to surgery no chemo! so im fortunate in that respect.people say how lucky i am! ive never been lucky and dont believe in luck! its truly a beast of an op but with time , i can learn to cope and adjust thanks to all the posts ive read today.
Dave
Dave. Well done on getting this far. I had a Transchiatal Oesophagectomy. Same end result, but no ribs broken and no left arm stretched during surgery.
I, like others on here, now suffer from left side back pain that starts from under my left shoulder blade. When I walk it will spread around to my front rib area, still on the left side, and is really bad. No amount of scanning, poking, probing has found the cause, so I just live with it now, taking pain killers as required.
I am 57 and two years post op. I'm back at work and doing well. You will get through this. It's a learning curve and can be very difficult but it does get better. The dumping is manageable and you will soon find your own level, (diet, amounts, timing). They say it all the time, but it is true "small and often".
Good luck.
Bruce
hi bruce thanks for positive words , excuse my ignorance , but is the surgery you had , through the neck? yes dumping is a problem still and diet in general is very poor and sleeping is still a big problem! ive been told its still very early days!
Dave
Dave
Through the neck and across the middle. It is (as you say) very early days. That is little comfort just now. But trust me.... It will and does get better. It can be rather subliminal, where you just notice something has improved. What works for one will not work for another so be wary of being told "do this it worked for me". In the early days I really existed on the bare minimum of food intake. I didn't worry about my weight (still don't) but focused on finding food that did not give me awful cramps and the runs (dumping) Sugar is a known trouble spot. For some more so than others. Chocolate still gives me big problems. Lactose can also be a problem (but again some say not).
I have always been a veggie. I now eat lots of fruit and salad (chopped up or it gets stuck). Soups were great in the early days.
You may find you need some dilations, as everything starts to heal. If you do this (and its worth it, trust me) get them to knock you out. You don't feel a thing and its all done within a couple of hours. I have had several on my throat and lower stomach exit. It just helps the food go through you.
Try to keep reminding yourself, it will get better. Don't lose that thought.
hi bruce, how long was it for you to feel like you had turned a corner, i know i have made little improvements but some days i doesnt feel like it ! yes i do wonder if i'll have to have dilations , how will i know i need them? and yes i would definately have the sedation!! great advice. food is a real problem but my weight is stable like you im not to worried.
im trying to stay positive ,but it is hard some days .
Good to talk to you
Dave
Dave
Well I am two years post op now and I am fairly normal (I think).
My dilations were/are in sync with difficulty swallowing or my stomach filling up really quickly, where it cannot empty quickly enough. Sometimes both ends will be done at the same time, sometimes just the exit or the throat end. It does bring instant relief and lasts for a few weeks/months. I have now gone about 5 months with no dilation and no real issues.
How long to turn a corner? That is difficult to say. I recall, that like you I felt I never would and got really down about that. Then I just noticed that a day, would become a few days, would become a week etc. It really is subliminal. By being really strict with my portion sizes (tiny) I managed to stop feeling sick every time I ate. That also helped with the constant discomfort in my chest and bowel. I think we all still have times where there is a dash to the loo to vomit, fingers down throat. With me his will always be brought about by just eating that one mouthful too many.
What has helped me is to have a mental picture of my tiny stomach and compare that against the size of portion on my plate. By doing that I can avoid eating too much. You also have to remember that drink is part of the overall volume. So a mug of tea with a biscuit is actually a fair amount of volume to clear before your next intake.
People on here are great and will offer superb advice based on real life experience. That is invaluable (or was to me). I try now not to think of my discomfort or pains as something that is here for good and imagine that they will go.
It's pretty anti-social farting, burping, vomiting etc. My family have been superb in tolerating me and that made a massive difference.
Good luck.
Bruce
Thanks bruce , very valuble info you have given me .
small portions ! and drinking as being part of the volume is really usfull to remember!
best wishes
Dave
Hi Dave, I was 52 when I had my op, I returned to work one day at a atoms after 14 weeks then gradually to full time over the next 3 months, if I'm honest it was too much but I needed to prove to myself I was ok. I still get some pain now 7 years later particularly from my side scar and ribs and still eat very small meals, one pint a night, I'm deemed to be lucky and have found the harder I work, the luckier I get! Seriously though you are right the operation is a beast, it takes a while to get back to 50 per cent and I know I will never get back to 100 but I am amazed at what I can do and how close to being normal I can be. Time is a great healer but mental attitude is a bigger one, I'm sure you will handle the coming months and years well and if you want to talk to someone who has -been there and got the t shirt just let me know :). Hope you do well on your journey and remember that even when we plan a journey really well we sometimes take a wrong turn, in our cases that normally means we overdo it and suffer for a day or two but most important is don't let these little hurdles get you down, it's a marathon
hi ray, thanks for your reply. ive been told its still early days for me and i shouldnt rush things and that i expect to much! i think frustration is a big part for me. thinking i should be further on than where i am ! work for me is a very long way off and i can't thing of much else other than the long sleepless nights and waiting for the dawn to break so i can get up !
If I am totally honest I think a little like most people we view our historical journeys through rose tinted glasses , I know I felt massive frustration that on my return to work my first day's work was just getting there and that was it! Not what I expected but I was so tired that an hr at work was enough and my boss sent me to the hotel, the following days wen those and that was also enough given I had a journey of over 100 miles. We easily forget how hard those early days were, it was undoubtedly a lomg and hard journey, I slept in a chair downstairs for over a month as I just could not get comfortable enough to sleep anywhere else, my early 'meals' were the size of a mars bar and they filled me up and made me so tired I really didn't want to bother but knew I had to, I think I was lucky as chocolate appears to have no ill effect on me most of the time nor does milk, probably just as well as that's all I drink now having had terrible acid, which, when I stopped drinking anything like coffee, reduced to almost nothing. Most importantly I think is don't feel too disappointed, I know I set myself goals which the surgeon thought were impossible and far fetched , but I did manage some of them and he is a firm believer that my mental attitude went a long way and indeed still does. I hope you get a decent night sleep or at least a few hours, even after 7 years I still, at times, find getting comfortable difficulty hence why I'm responding to your recent post at 1 am. But ......life is definitely better than it would have been without the op and I count my blessings every day :). Cheers Ray
This does not affect the truth of how you feel at all, but what you have described is normal and it is what a lot of people describe at various stages before they get better.
It is about this time that people can feel 'low'. It is probably a reaction to everything you have been through - things catch up with you. Don't underestimate the mental side and the strain of continually making the effort to get through things. Some men (and women) find it helpful to talk through issues with a counsellor (as in Maggie's centres for instance). I think it is about 25% of patients with successful cancer treatment that need this, and a proportion of those who need some form of medication to help them come to terms with the traumatic time they have been through. So, again, it is 'normal' to feel a bit down. I have recommended Peter Harvey's article before, and it may be helpful: cancercounselling.org.uk/Pe...
The pain from the ribs does sometimes take a long time to improve. Gentle, progressive exercise and physiotherapy can sometimes help. Eventually, yawning and sneezing do not give you the 'gips'.
Fatigue is a problem for many. Make sure that you do not overdo things because recovery from this surgery does take a lot longer than for other operations one has experience of. The body insists on taking its own time and there is no 'ought to be feeling OK by now' that applies. It is very frustrating, but you sometimes just need more time and rest. And a check on mineral and vitamin levels in case of iron deficiency / anaemia etc.
In the midst of all this, you have to try and achieve a diet that does not make the dumping syndrome worse. Try 'Slimfast' as something that gives you nutrition but with a minimum of ingredients that might promote dumping. This sounds terribly illogical when you are probably below the weight that you were before, but to some extent you may have to eat as if you were diabetic as you have to cut out the sweet things and anything with -ose at the end of it. Milk and cream can sometimes cause trouble. Try looking at the factsheets on Low GI diet that you can download from the OPA website.
opa.org.uk/pages/factsheets...
I think I know what you mean by the 'lucky' side of things. You cannot go through life afterwards always feeling positive about have been diagnosed and treated early, even though that in itself is a good thing in the circumstances. You come to terms with things in your own individual way, sometimes after a good many thoughts in the middle of the night, but the people you meet have not normally gone through the equivalent experience. You have to make allowances as well for your loved ones who have also been through the mill but nobody really gives them much thought.
It is true that it does get better and will continue gradually to improve, but that does not mean that the whole process is effortless, and there is a mental / morale track that people travel along as well as a medical one.
hi alan thank you for kind words of support. im still trying new foods that i didnt like before to get on top of the dumping! trial and error! getting to grips with sneezing , yawning and coughing has been and still is a big deal! and so is doing the simplest of tasks i found that i use my feet to pick up things i drop! i will check out the artical by peter harvey. thank you
Dave
I echo the above statements.
On the pain front I've been seeing a pain management guy / specialist. Two procedures have given relief - temporary but still relief
One procedure is radio therapy nerve ablation therapy where he's zapped nerves in the rib cage where the pain originates. The other is an injection into the splenic nerve.
Also, medication for pain I'm on pregabblin which I think makes a big difference
Would be interested in hearing more stories about nerve pain in the rib cage and shoulder
hi pete, thanks for replying. the pain from my back is terrible most days ribs and side hurt all the time even with pain killers! Iwill speak to my link nurses re nerve therapy next appointment .
thanks
Dave
Hi Dave
Have you been to an OPA group meeting? I am not sure where you're located but we have good coverage. In these meetings you'll find other patients at all stages of recovery and all with their own story. Many find these patient to patient meetings extremely helpful
Regards
Haward
hi haward i will look into the OPA group as soon as i can find where my local one might be. it sounds very usefull .
thank you
Dave
Hi I'm about 15 weeks post Ivor Lewis at the minute myself , I had a leak and wound complications which was an added nightmare to the operation. I am however now starting to feel human again especially in the last few weeks. My nausea and vomitting have more or less stopped but I am still struggling with what I assume is dumping syndrome. Going to start keeping a food diary to see if I can narrow down what's triggering it so hopefully I can know what I can and can't eat.
As far as feeling lucky goes I'm not sure that's the word I would use but I most definetly feel blessed that I was able to get this operation and have a chance at living a longer life as many many people don't. I appreciate its hard to feel lucky when your feeling awful and sore and I hope you can get past the low point to come out the other side. I just feel everyday I have now on earth with loved ones is a treasure and I am going to appreciate every moment of it .
hi shandy23 , yes i feel fortunate that they found it and dealt with it straight away.
i cant see the light just yet and really struggle on a daily basis but it sounds like its just a time issue with patients i think! I too want to be around and enjoy my wife and children and family for as long as possible.
thanks
Dave
Hi Shandy. I'm not sure a food diary will help with the dumping. I find something that goes down well one day can cause dumping the next. For me it's the quantity, and most of all the temperature of food that causes dumping.
Anything hot makes me dump, even a hot cup of tea.
Hi Shandy23,
My husband did all the dumping syndrome after every meal for the first few months - we found having a few sips of full sugar coke helped faster than anything. For nausea, he has baby's gripe water which has worked a treat for him. We even took a bottle on holiday with us, a good job as the buffet proved far too tempting for him and he was inclined to forget our "rules" for eating. I'm sure I saw the gripe water tip on this site (many moons ago!)
good luck and just keep trying - he now manages bacon butties and roast dinners when he had resigned himself to giving them up. He is still improving 3 years on.
Eli 55
One of the worst pains I had was in my shoulder. Lifting my arm above the vertical made me feel physically sick with pain. I worked out that if I lifted it as far as bearable once, the second time was OK. Doing that sort of repeat brought it back to normal. It took months but it's fine now. I manage pull-up. Haward
i will try that and see how it goes. the scare under and around my right side is still very tender and very tight hopefully it will help !
thanks
Dave
You want to think yourself lucky that the cancer was operable!
hi grandad4, thanks for your coment but as i say i dont believe in luck.
I was fortunate it was picked up early by my doctor and hospital team
hope your doing well
Dave your story is the same as mine. I'm 4 months post op and going through all you have described still. I am nearly 51. I don't consider myself lucky either but I a learning to accept it. I'm wondering if you are underweight? I am severely underweight and I can't lean on my back because of my back bones sticking out. Did you have a minimally invasive oesophagectomy or did they do they open you right up?
I wish you luck
Abbi x
hi Abbi, i lost around a stone and a half, but i have a feed tube in as my diet and desire to eat is still poor. yeh i cant lean on my back and sleeeping is very bad.
i had the ivor lewis op, so opened up front and under my right arm and back! which procedure did you have?
how are are you in general?
best wishes
Dave
Prediabetes and Ivor Lewis op
Ivor Lewis Procedure. 5 months on.
Post Ivor Lewis
