Bad cramps

[Von66]

I’m 7 months post op Ivor Lewis and having really bad cramps and what feels like tightening around top of stomach straight after eating like pulling it’s horrible anyone else had this also getting a lot of pain in back where big scar is lately any advice pls x

[Quicksilver_1]

Seven months can still be relatively early days in recovery. Cramps were normal for me, but I found switching to lactose free milk helpful and watching sugar intake generally. Back ache and pain around the scar area can be normal too. I still get pain there five years on if I overdo anything, such as sawing or even lots of vacuuming using the right side as I’m right handed. Speak to your upper GI team if you’re at all worried. They will help. Good luck.

[EC-Survived in reply to Quicksilver_1]

It’s been 3 1/2 yrs since my 7:30+ Ivor Lewis surgery and I’m still having problems: scar tissue, breathing and fluid on my lower right lobe. But, I’m assured by all the doctors I’ve seen-there’s nothing wrong with me. Still having problems walk, takes days rather than hours to mow the yard. But, still able to small household chores done, but I have to take breaks often. We’re all different.

Hope things get better.

[Cavalier3]

Hi Von66, I’m 7 months post IL too. I had my second 3 month check up a couple of weeks ago and I talked to my consultant about this feeling of pulling and that something is stuck. It feels like a massive ball of wind or something. Mine started at 3 months post op and if I don’t chew my food properly or eat meat or doughy bread (I don’t eat them anymore) it happens. He said it’s tightening of the scar tissue around the join and I can go for endoscopy and a stretch. I know it’s nothing after what we’ve been through but I hated the endoscopy so have decided to wait until my next check up to see how I go. I still get stomach cramps and dumping probably once a week at the mo but I’m never sick. Pain in my back too and my front shark bite scar too now and again. It’s still early days for us. I do feel like I’m doing so much better than I expected to be at this point. I’m living my life as normal as I can. I get tired if I do too much but I don’t mind have a days rest if I’ve had a few days of fun.

[Molly14 in reply to Cavalier3]

Hi - I used to have a real hang up about endoscopies - I’ve had about 9 now - I learned to ask for as much sedation as poss and that I didn’t want to know anything about it - I have no problem now - away in seconds and know nothing - worth saying the next time you go - some places just give the minimum sedation and it can be unpleasant.

[Cavalier3 in reply to Molly14]

Hi Molly.. I wrote a reply earlier but it’s disappeared so if there are 2 tomorrow that’s why! I didn’t realise I could ask for me sedation but I will do that. I was completely awake last time and mixed with a bad outcome I have a bit of anxiety around having another one. I’m sure most of us feel that way. If I could have a little snooze and know nothing that would be so much better x

[Molly14 in reply to Cavalier3]

Oh definitely ask for sedation - being awake is horrible - can’t believe you weren’t offered sedation - all the best x

[Von66 in reply to Cavalier3]

I had a really bad endoscopy first time round and my consultant told me he would put me to sleep for next one and he did so definitely ask my surgeon told me they don’t like to do stretches or endoscopy this early after surgery because things are not healed x

[Cavalier3 in reply to Von66]

Thank you and I will be asking for extra sedation.. if I could go to sleep that would be perfect xx

[walking-in-wales]

I'm coming up to 3-years post-op & experienced the cramps & back pains probably on & off for about 12-18 months. Like Quicksilver_1 lactose free & / or use of lactase tablets together with low sugar intake I think made most difference with the cramps though I think I can still get the occasional cramp with highly refined carbs. The back pains I think related to the effects of the scarring caused by the surgery & took time to heal & strengthen; worse after a more physically active day. Relatively early days for you, but some adjustments & perseverance I think should help. Good luck.👍

[Janashlin]

I am 2.5 years post and still get the same symptoms as you describe but not as often. I have dumping syndrome everyday without fail though…….I think that is here to stay.My side still tightens up when I walk much and I still apply heat to my back daily where the back pain used to be unbearable. Now I can get on top of it but it still stops me some days.

Massive operation and a huge recovery but what you describe sounds ‘normal’ for those of us who go through this nightmare operation which I know we are lucky to be able to have had………

[Popsic]

Hi there, I am 8+yrs post op, have had dumping syndrome since the operation, not as frequent now but at least 4 times a week, I get a sort of stinging pain in my ribs, I’m guessing that’s where they broke them, I have had aspiration pneumonia three times, still get reflux, so bad I’m crying with pain, worrying in case it’s doing damage again, I suffer panic attacks and anxiety since the op, I am due in to have a tummy stretch under general anaesthetic and I’m terrified. I keep telling myself I shouldn’t complain because my life has been saved, but it is hard not to think this way, I have been bi polar since my late twenties so that doesn’t help. I have discussed all this with my oncologist nurse and I’m told it’s all normal to feel this way. It helps to talk to people who have had the same as you, we understand each other better, your early days though, I’ll pray it gets better for you, stay positive and stay safe.