It's heartening to hear people reflecting my experience some 3.5 years on.
The small issues we have are a small price to pay for still being here. However, I'm trying to work out how to live more effectively with our "issues" and would really appreciate your thoughts and experiences.
My surgeon and oncologist have been amazing throughout this. However, it sometimes feels like they are a little remote from the whole thing and don't really have the answers I need.
I do have some dumping issues but not noticeably from fat - I take Creon and if eating something particularly fatty take an additional tablet or two - this seems to help. Sugar is definitely an issue and I do experience what I call hypoglycemia even though my surgeon doesn't concur.
I do have issues with loose stools - I've seen some posts where people have blamed creon for these - I found creon to fix a load of other problems but perhaps I'm wrong.
I do continue to experience pain along my ribs (they damaged intercostal nerves on ribs 4 and 5), around the drainage holes on my rib cage (I still feel that removal of one of the drains literally hit a nerve which has exacerbated the pain) and around the incision on my right shoulder blade - I'd be interested to hear if this is consistent with you all and what (if anything) you find that helps.
I am of the opinion (surgeon disagrees) that the pain in my shoulder is correlated with food (intake, composition, volume, frequency) but am yet to crack the optimal balance.
Removal of the top of your stomach eliminates the "glands" that release ghrelin and therefore we don't have an appetite - I genuinely struggle with work/life/diet balance and frequently forget or am unable to eat frequently enough - this most definitely results in pain.
I continue to experience issues with bile production - can't quite crack what's causing it. Sometimes it's not sleeping at the 45-degree angle, or slipping over to my left side while I'm sleeping (right side is ok). Sometimes it's too much food, or too little food or going to bed too quickly after eating. Anyways, I have periods of time (perhaps 3 consecutive nights each fortnight) where I wake up with a mouthful of bile and then spend hours vomiting bile. Sometimes I wake up having aspirated bile into my lungs - small amounts are "ok" - large amounts bring on pnuemonia. Does anyone else have this issue ?
My only gripe is that even though my partner has been incredibly supportive our home life (we have one 6yr son and are about to adopt a second 9month old baby) is quite hectic - we both work and there is little/no allowance made (or is possible) for me. If I have a bad night I still have to get up in the morning and help get breakfasts, school clothes, etc ready and then go to work myself. There is little point in complaining - I basically have to get on with it. Trying to run with a 6yr old on the way to school when you're in agony is no fun. Again, a first world problem and at least I'm alive to have it !