Total Gastrectomy

[Molly100]

Hi

Has anyone had a total gastrectomy that is willing to contact me and give me advice etc. I am due to have one in November due to a large adenoma in my stomach which they cannot be 100% sure does not have cancer in. Obviously I am very scared at the prospect of having no stomach. I have had APS for 30 odd years.

Many thanks

[KellyInTexas Administrator]

Really sorry to hear this Molly. I have not experienced this, nor ever heard of this.

I read through your previous posts and see prof. D’Cruz is your APS specialist rheumatologist.

I assume he is in contact with all the specialists involved in your care, especially your hematologist and surgeon/ gastroenterologist/ .

I wish for you very coordinated care. This will be of utmost importance, but of course you know this.

From an APS lense only, I would ask about clexane injections - Must be every twelve hours for APS patients as you know.

I’m sorry you are facing this.

[Molly100 in reply to KellyInTexas]

Thank you Kelly. Yes unusual but apparently not uncommon. I have never seen the team at St Thomas's since my diagnosis. But I know the consultant dealing with me are highly experienced and I am in good hands.

[MaryF Administrator in reply to Molly100]

Good that you feel positive and also that you feel good about the care and upcoming procedure, I am sure somebody else on this forum years ago had this, if I can find the posts will link them. All the best for your procedure, do use the forum when you want some support. MaryF

[Molly100 in reply to MaryF]

Thank you Mary

[Bloodredroses]

better to get advise from your Clinic first , you will see Nutrionist also. Too much info can get confusing . Then find the Facebook group seems to be most helpful also. Good luck 🙏🏻🙏🏻