32 year old female, recovering from total gastrectomy need encouragement and to hear things get better

Hi, I can’t give you any advice as I haven’t had surgery yet, I just wanted to reply to give you support, I’m sure you will continue to improve, you sound like an individual who has great strength, love and hugs, keep going x

Welcome to our group but I am sorry that you have had to join us, especially as you are so young.  I have heard of some people who needed the supplement as their body wasn’t absorbing the nutrients.  But it’s very early days for you so hang in there!  It takes time for your new plumbing to adjust.  Over time you will be able to eat larger portions but in the meantime take the nutrients so you can build up your strength.

Others will share their experiences and give you positive stories to hang on to! 

Hi -please hang in there as it’s such early days. I had a total gastrectomy in June last year and had a really rough time with eating to start with. I also have to take tablets - creons they’re called - with every meal, for the same reasons you’ve said. You get used to it but it takes time. I am now eating well, having larger portions and can eat most things. Sending love and strength to you as it’s so hard at the beginning but it will get better xx

Hi there, I posted in another thread along the same lines but my dad who had a TG nearly 6 years ago is able to enjoy multi course tasting menus, eating almost everything and is eating essentially normally but with smaller portions. He's learned to listen to his body and he knows that some days he will be able to put away nearly as much as he used to, and other days, when he has more wind, he will want to go a bit lighter. But he's able to eat nearly anything and has for a long time. The first six months after surgery are variable and harder, there's no doubt about it. He said that he would develop aversions to certain foods without warning but he made himself try again at a later date and has overcome most of them.

About medication on an ongoing basis, he, like everyone, has to have a B12 injection every three months. And, he does take enzymes with every meal. He started on Kreon but didn't get on with it - if you find kreon hard to tolerate, there is another brand available called nutrazyme and he does just fine with this. It helps with fat malabsorption (which si the cause of the floating pale and stinky poo). Dad does get bile reflux as his only issue from the surgery - and for this he takes cholestyramine - questran lite. He's pretty used to it all now and is part of his routine.

Dad said pushing himself to really eat as much as he could in the months after surgery helped him to create a 'pouch' that's helped him to increase what he can eat - he did this with absolute determination after his surgeon said it is possible to do.

Hope your recovery goes smoothly,

SDH

Hi

Bless you, I have had TG and am tiny, had TG September 22, I can only nibble on food but I still try and go out with friends for meals, just to socialise really. I haven’t been prescribed any medication but still have urgency when I eat . I seem to survive on high fat foods such as cheeses, pates and have a milkshake daily! I’ve never been able to increase my portion sizes but instead graze ! But I’m going back to work so happy days! , keep positive it’s the only way X

Everyone is different.  I had TG seven weeks ago and recovery has been better than most. I am a very fit 86 who had a great surgeon and great team. I eat six times a day and log everything as some foods gave me reaction. I have not lost any weight and now eat many normal foods such as porridge eggs yogut  cottage pie sweet potato chicken etc    I am also walking at least one mile a day.  Every week it does get better but you have to be patient and try to eat protein all the time. If medication is needed then take it and keep a log to see if it benefits.  Am confident things will get better with time  so hang in there.  

I cant help you here either, as ive got mine prob mid April after chemo finished. I cant say im enjoying the chemo and but im definitely very wary of the operation. My tumour is high up in the stomach near to my oesophagus, so think it’ll be full stomach removal and possibly some of my oesophagus. I’ll then will most likely have more chemo. Some good advice from those earlier though which should help you. My wife’s a nurse and she told me to take the nurses some chocolates, which i did today. They loved it and and I’ll be treating them every time i go now as they're such fantastic people.