3 Days Post-Ileostomy: Recovery Updates and Medical Mystery

Is it 3? I guess so, as it is 2am. My ileostomy is gurgling embarrassingly loud, but I'm alone so only I hear it.

My surgery went well but longer than expected...the 3-hour time slot ended up being 7 hours. They scraped part of my rectum and its lymph nodes. And then obviously removed my whole colon. What's weird is in FAP, you get clusters of polyps. I had just little polyps all around. And my APC gene has a defect (an APC gene leads to FAP), but the defect isn't where the FAP part is, so I am a medical mystery. Ugh, I am still gurgling here.

I can walk and walk a few times a day, which impresses the nurses. They say I am recovering quickly. However, I didn't start to poo into the ileostomy until yesterday afternoon, which they said was a bit delayed. Also, I had terrible acid reflux as my stomach had yet to wake up.

In surgery, I got a T-blocker, which worked well...almost too well. But post-surgery, who knows when except it was nighttime, I woke up writhing in pain. Like level 10. I've given birth naturally, and it was like that, but the T-blocker and pain meds should have dulled it, so my pain was like 12/10. So they upped my ketamine to the danger level where people hallucinate. No hallucinations, but it dulled the pain.

So my glasses went missing, and my vision is 20/400 and 20/1000. So that made things more miserable and surreal. Luckily, I got glasses yesterday afternoon!

So I figured even though I am new-ish here, I would post an update about myself and my surgery!

Also, I ate my first non-liquid meal, some chicken noodle soup! And preliminary pathology shows no cancer, praise God, but that's just preliminary, so things may change.

Thank you for sharing your experience! I've been home for a week. It's been very hard and sometimes I miss having the support of the nursing staff and doctors.

Hang in there and don't rush your recovery!

Stephanie

Post-op is a really tough time. Anytime in the hospital is tough because you get no rest with them coming in all night or the noise in the hall keeps you awake, not to mention your own issues. Going home with drainage tubes and a folie was particularly hard for me. Once I got them out in the following weeks, I was okay. It takes a while to get the system moving again and it is a good thing so you did not have to deal with it as much while you rest from the surgery! Hope your recovery is smooth and thanks for keeping us posted. I have a colostomy so a bit different but same issues!

Puppyluv

I will likely go home on Monday, but I won't exactly be back to normal.

Mine is volcanic once I wake up. I don't care who hears it. Most folks think my stomach is gurgling, when it is my stoma named Jake.....lol. Once you return home, keep busy, within limitations, of course. I only spent 7 days in the hospital, which should have been 5, but my electrolytes were non-existent. I spent 2 days with IVs pumped into me.

My bag is named Willy and he is fantastically flatulent. I'm tempted to tell people, if they hear the noise, it's Willy. He has no manners to speak of.

LOL.....I named my surgical scar Cousin Larry, my chemo port Pearl, and my 5FU pump Aunt Ethyl. I am done with the pump, and Pearl is about to leave Jake....lol. Oh well, he has Larry to hang out with.....for now....lol

Hey 2B's

Glad you're losing Pearl and Aunt Ethel has gone away! I worked in Oncology as a case manager and know 5-Fu and a pump is a pain in the butt! (And everywhere else) Hope you live close to your Oncology center! So many trips! Did you get Neulasta for Neutropenia? If so, I hope you got the copay card that pays up to $10,000 a year of your out-of-pocket....That's if you have commercial insurance. I used to work with all the drug companies and assistance programs that would pay people's out-of-pocket. It was awesome! Congrats on the family moving on! ;Lol

Weathering put the Hurricane!

Puppyluv

Mine is Bink..named after a pitbull...can be vicious

Hey Gemd, glad you're on the mend, or at least on the way. You're right in the thick of the grind of it all right now. Pat yourself on the back that you've made it this far. You have to simplify life and celebrate the small victories. Stay positive and focused, there will be hiccups and, well, there will be farts as well. The gas will eventually simmer down, and if not, you've got a new friend for life you can blame it on! Keep laughing. Just not too much while the stitches are in, I know it hurts!

Support from BC

Hey Gemd,

Glad to read your update, thanks for keeping us posted. What's normal.....you are now more special than normal, I know it doesn't feel like it but you've come a long way. Now is the time to thank God and know you will be okay.

Things will be a bit rocky for a while but you will adjust, we all have and it could always be worse. We're here if you need to ask anything or vent away if you need to.

Stay strong.