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Hi everyone! I’m new to the site and am glad I stumbled upon it!

I’m 47 now and I was diagnosed with MUTYH just 2 years ago. I had stomach and colon cancer at the same time resulting in a total gastrectomy and partial colectomy a year ago and I just had my second surgery 2 months ago to remove the rest of my colon and rectum. The first surgeon made a j-pouch for my stomach and now I have a 2nd j-pouch for my rectum. Temporary ileostomy will get reversed within a year. Anyone hear of someone with 2 j-pouches? I’d love to talk to them! Anyways, this is all new to me and it’s the most difficult recovery and life adjustment I’ve had to go through.

Thank you for the add and chatting more with everyone!

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Hi there.



Your post interest me cause I have familial polyposis and a jpouch 21 years after sub total colectomy

I have a jpouch and a sigmoid colon/rectum



My gastroenteroligist recently told me I may need part of my stomach removed due to clusters  of 2 to 3 cm polyps . The last gastroscopy, he found a 2.6cm polyp and a 3centimeter polyp with low grade dysplasia

I'm a 44 year old guy



What's it like living with a gastrectomy. Does food exit you quicker. Do you get hungry sooner? Do you require iron infusions?



I get them once a yr do to absorption issued and bleeding

I  scared. I'd like to follow your post.

Len

Hi Len!

Surprisingly, I had the gastrectomy first before this and it was a much easier recovery. They gutted me from sternum to pelvic bone. Twice in 2 years. Totaling 16 hours roughly of surgery.

Eating is fairly normal except I have very little room so about 2-3 eggs fills me up in the morning. I can barely drink liquids and have to watch out as it can cause dumping syndrome. Fortunately I don’t have to have iron infusions. I do take a Centrum Multi-vitamin that’s chewable. I also take a chewable calcium/D3 vitamin as well. Since I only have a small intestine left food will go through me much faster. They want me to have a lot of pectin rich foods so my output will consistently be apple sauce like. It’s so far a struggle as I am only 2 months out from the total colectomy/ileostomy. I do get hungry quicker. I also get weak quicker. The feeling of full is sorta the same but now it’s more like filling a tube and that tube is my throat. When too full it will make me throw up  and have a horrible time. I’m not a grazer or and love big meals so it’s very hard to adjust to a change in eating habits and food after nearly 50 years of eating habits.

My surgeon has me on IV hydration daily. 1000mil over 4-5 hours. I don’t really get out of the house right now.

I had over 70 polyps in my colon/rectum. The last one was 2cm above the dentate line and deep rooted showing pre-cancerous stages, hence this second surgery.

I hope that helped answer some of your questions.

Your post scares me. Your response. I'm sorry for what you've endured



I forgot to clarify it would be a partial gastrectomy for me.

The incision is a long one you describe.

My scope schedule with my gi has been thrown off because 2 months ago I lost my mother to congestive heart failure complications

I'm afraid of what's gone in in my jpouch and rectum My last colonoscopy was Dec 22 2021 so I am over due. My gastro likes to survillience me every few months . I was taking care of my very sick mother for 4.5 months before she passed so the stress was pouring out of me.

I receive the iron infusions each year I think it's cause I loose some blood from when the polyps bleed and I have a cogulation defect I don't hold onto the iron long

We have dangerous diseases you and i

My gi never told me how many rectal polyps I have but he always described them as easily removed for enough spaced apart



The low grade dysplasia found last time Nov 9 on gastroscopy has me scared about cancer potentials and it doesn't help that I have ocd and obsess over the situation



I'm worried if I do need a partial gastrectomy do they just reattach the remaining stomach to the intestines. Can you get dumping syndrome or feel too full soon after eating with partial stomach removal?

Glad to have someone to talk to cuz I'm a worry wort

Thanks!



Len

I am very sorry to hear about your mom. I too lost mine while I was on chemo. I feel your pain.

So yes, basically you have weight loss surgery. Roundabouts lol. And you will lose weight. You will get dumping syndrome if you aren’t careful. The body can’t process the sugar or high fats like it used to. Even now I have to take a small bite of maybe ice cream or cake for instance. I then have to eat something else like a banana or granola bar. Something to thicken the stool.

Depending on how much stomach they take from you, drinking and eating together is not an easy thing and eating takes priority as it won’t flow through you like liquid will.

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