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Looking for experiences - total colectomy
Colorectal Cancer | Last Active: Jun 16 1:27pm | Replies (8)Comment receiving replies
I can eat similar foods to bethbeep and am always looking for new foods to try. The binder foods mentioned are all so important to help alleviate some of the issues. I, too drink tons of water, though I'm trying out the practice of limiting my drinking too much liquids with a meal (supposed to help with slowing things down) and drink more between meals. Either way, I drink a LOT of water and sometimes sprinkle a little bit of IV solution into my water for the added vitamins and variety. I'm still learning which vitamin and mineral supplements help/hurt the issue. Bethbeep, have you discovered anything that doesn't irritate?
I've been thinking about poupette over the last few days. I am not personally familiar with autism, but realize it is a spectrum and can be different for each individual. What you are facing is very daunting and you've been through so much already. As you're learning, there are significant trade-off's from living without a large intestine. But, with that many colon polyps seen during your scope... I understand why your doctors are encouraging you to have the total colectomy. I'm hoping that along with this support group, you find additional resources to help you make this very important decision. Please keep us posted.
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@bevjoy Autism is indeed a spectrum, and as we say in the community when you have meet one autistic person, you have met one autistic individual.
I am 53, I know that I am autistic for 5 years, and ADHD for 1 year. I have begun to make a list of what the surgery could change in my life. And for now I can’t simply accept these changes due to how my brain works, while I am very aware of the consequences of not having the surgery. I am still recovering from my second mastectomy done in January having side effects. While having increasing menopause symptoms with no possible treatments due to my cancers.
And due to my genetic mutation I need to have multiple exams/appointments for the rest of my life while advocating for myself in an hostile healthcare environment absolutely not suited to my needs. And with healthcare professionals who have no idea, in addition to autism, about my genetic mutation. So during the 15 minutes appointment I need both to educate them about my neurodivergences and the mutation… But at least now 90 % of them know what it is, I haven’t met yet the last one needed. And so as they don’t about autism/ADHD I can’t get suggestions from them on how to deal everything that involved the surgery.
The positive is that I don’t have, yet, a colon cancer neither a cancer somewhere else as my thyroid, chest, oesophagus, stomach, liver, 1 ovary, my only kidney, my uterus, my skin are regularly checked for possible tumour too from now. In September begins the new round of tests. Due to how the system is made I am not seen in my whole, but by pieces…
Anyway, thank you. ❤️
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