HIPEC recovery journey...oy!

[Rheaeliza]

So Day 6 in the hospital...things could be going better. First, I am walking a fair amount, but haven't passed gas or anything. I am starting to hear grumble noises, but doesn't feel like it's about come. Also doesn't feel like I"m going home on Monday. There still feels like so much to accomplish between now and then.

The pain is sometimes tolerable. had some complications. My veins are totally small. and shot, been pricked like 20 times in the last 2 days. like 6 nurses havetried to start iv's. one iv was leaking, busted, and now infected. have had a fever the last 2 nights, they are talking about puttinh in a central line, that freaks me out. did i mention i also have a panicky fear of needles. oy

i'm scared that im not getting better fast at all.
most of the pain is my whole s
abdominal cavity, and like that winded /side pang you get after running, but the front and back, like my kidneys. they did do a urine culture, came back clean.

oh, and it hurts too pee, at the end of peeing,a pinch and ache, lower abdominal area, not burning. think its gotten a little better since my epidural came out yesterday.

guess i need to whine and get some encouragement. very scared.

[Val*pal]

I don't know much about recovery from HIPEC surgery, but I think I know enough to say that if you're up and walking around, you're doing VERY well! And if you're getting frustrated at the slower pace of recover than what you had hoped for, it means you're starting to feel well. Keep up the good work and keep us posted. I'm sending positive vibes your way.

[Busymamaof3]

Each day will get better and better! I had that pain peeing - it lasted a couple weeks. I would dread getting to the end because I knew it was coming! Are you on Lyrica? I think it helped more than anything for me. I dropped the pain meds except at night early on but needed Lyrica for a month. I was also scared to leave but a Dr friend told me to run as soon as they would let me....too many other sicknesses you can end up with in the hospital. Hope tomorrow is a better day.

[O Stoma Mia]

...have had a fever the last 2 nights, they are talking about putting in a central line... they did do a urine culture... guess i need to whine and get some encouragement. very scared...

Hi Rhea, It's good to hear from you. I don't have any experience with HIPEC, but I have a couple of comments on this your 100th post:

Fever - Do the doctors have any idea what is causing the persistent fever? Maybe you could suggest that they do a blood culture to test for presence of one of those hospital-based bacterial blood infections. It takes several days for these kinds of cultures to be performed, so the earlier they start working on it the sooner they would be able to exclude septicemia as a cause.

Central line - In my opinion, a central line is preferable to multiple peripheral IV connections. One central line port can usually handle 3 different IV lines all at the same time.

Please keep us updated on your situation.

[janklo]

I think it's pretty amazing that you were able to write that post! HIPEC is SUCH a huge surgery, gotta cut yourself some slack. Take the time to recover. Do you feel 'better'? Lauren said she woke up feeling just overall better knowing all the cancer cells were gone. I hope thats gonna be your feeling too and please keep us updated as you get better and better.

[Rheaeliza]

Thanks for your responses guys...updates... I guess I knew this would be difficult, I just thought every day would be better, whereas its more like ill have a good morning, but then crappy night. Still haven't passed gas. Tomorrow will be one week since surgery.

The infection is most likely from an infected vein from yet another failed IV. A big part of my left arm around the spot of the IV is painful, swollen, and pudding from the actually site where the needle was. I'm doing hot compresses and I'm on IV antibiotics.

So another failed IV had to be removed last night. At this point my arms are in so much pain, I'm begging them to use my port, my arms are shot, oh yeah, found out it was probably to late to get a central line put in that day. They doctors are being weird about the port. So my boyfriend said screw it and emailed my surgeon who is out of town for Labor Day weekend. He stepped in and directed the team to please use my port and stop torturing me! You can imagine the sense of relief I had when it was accessed! Then they moved me to a different room(my roommate spends entire days yelling to her 8 family members visiting about how horribly mistreated she is at the hospital, and goes on anti-Semitic rants! For now I have the room to myself, bed by a big window, partial view of Central Park!

Hopefully these are signs of good things to come

Now if I could only pass gass!!!

[O Stoma Mia]

...Tomorrow will be one week since surgery...The infection is most likely from an infected vein from yet another failed IV. ..and I'm on IV antibiotics.

Hi Rhea - It was good to hear from you with the update. About the IV antibiotics -- do you know the specific name(s) and how long you have been on the medication? Normally, I think a standard course of antibiotics goes on for about 7 days. Do you know what the future plans are vis-à-vis IV antibiotics for you after the current antibiotic has run its course? The issue here is that if you have an infected vein (i.e., a blood infection) then this might require switching to a different kind of antibiotic. Do you still have a fever?

Enjoy your view from the window! It's nice having a room like that.

[Busymamaof3]

Yikes about the veins! Glad you were proactive and had your port accessed. You have enough to deal with without pain from veins! I had a fever too for several days. They did cultures and never found the cause. That makes nights worse because they have to do vitals so often - meaning you don't sleep. I had pain from trapped gas and got the advice from Serena on this board who's husband had HIPEC before me to do pressure points. It really helped. I had an ileo though so things didn't have far to go. Give yourself time - soon this will just be a memory. Even though now it really stinks!

[SMR]

Glad to hear that you are starting to feel better. When my husband had HIPEC, he did end up with a central lid a couple days later. It sounds like you are past that now though with the port in use. As far as passing gas, it took him at least 8-9 days and the help of a suppository. His initial recovery was long, but he had his surgery in the third week of March (2012) and was out golfing by the first week of July! Keep us posted.

[Rheaeliza]

Still at the hospital. A week and a day after my surgery. They have me on ciproflaxin for my infection which seems to be working. No fever last night.

I did pass gas and have a bowel movement Sunday, so they let me eat a little soft solid food and took me off IV pain meds. They switched me to 1-2 percocets every 4 hours and let me say first, those of you that get off the narcotics in the first week. Wow I don't know how. And second, 2, 5mg Percocet is cutting the pain enough that I can take a slow walk around the unit. Sleep mostly. And that's it. When I sit here, and breath it freaking hurts. I couldn't stand up straight yesterday on a scale.

Anyways, cramping, severe gas pain, stomach pain all very high Sunday night after eating. They put me back on clears again and are waiting for me to pass gas again. Only did that one time. Blah

[O Stoma Mia]

... They have me on ciproflaxin for my infection which seems to be working. No fever last night...

Hi Rhea - Good to hear from you. Thanks for the information and for the update on your infection and the fever.

If you still have problems passing gas or passing motion, you might ask the doctor(s) to listen to your intestine via stethoscope placed on the abdomen. If your intestine (peristalsis) is working OK, then they will be able to hear the sounds with the stethoscope. If, however, they don't hear anything this might suggest that your intestine has gone to sleep (i.e., is on the verge of paralysis and in need of attention).

How is your left arm doing? Is it still swollen from the IV connection? Do you still need to apply the compresses?

Have a good rest, enjoy the nice view out the window (if you're still located near the window), and let us know your situation when you get a chance.

[Rheaeliza]

Yes the swelling from my arm has gone down almost back to normal, redness too. now it's still a tad irritated/itchy at the IV site.

My surgeon came by just now (he's been away) and that was good because he really does chil me out. Those of you who have had him know what I mean. There are definite sounds going on in the bowel, yesterday and today when they listen with a scope. Man gas pain is a bitch. They are sending me for a CT scan today just to be sure everything is all good. Sounds like my bowels are just VERY slow to wake up, kind of like me. Anyone else take this long after surgery? going on 9 days here now for me. It feels like it's never going to end, Like I will never eat food (my roomate is having pancakes for breakfast, smells so good) like I will never walk normally and without losing my breath...

good news on pathology though. The margins on my resection came back clean, gallbladder and appendix clean, 3 out of 18 lymph nodes affected, and both ovaries showed malignancy stil so I'm so glad we opted to take both because scans only showed spread to one. Still waiting on uterus and omentum reslults.

ugh, I feel so bloated and distended, and it hurts to breath in. GAS...GET OUT OF ME!!!!

[salajx]

Hey Rhea I hope you read this as you are being discharged. I underwent a HIPEC surgery last March and went through exactly what you went through. It was pretty tough but I came out of it just fine as I am sure you will as well. In addition to that I also underwent genetic testing due to my family history of cancer and it turns out that I am came out positive for Lynch Syndrome I don't know your medical history at all but in my family they were all diagnosed with abdominal cancers. Perhaps you may want to research this for yourself.

Take care and keep moving forward.

Salajx

[Rheaeliza]

Still here...2 weeks one day.

CT scan last week showed a micro leak where the lower colom/rectum was stitched together, which was leaking air and some fluid. They put a drain through my bum muscles next to my tailbone to drain/suck out fluid and air. The hope is that the micro leak will seal itself off. Right now, I still haven't passed gas, when I feel like I am going to, it just comes out through my drain instead. Which tells us the leak is still there. The plan is to give it this week, and I guess if it doesn't work, I'll be looking at a temporary illeostomy.

I'm so frustrated because other than that I feel better, like I'm healing. More energy, less incisional pain, no nausea, bood counts are all great. Ugh and this catheter/drain is a literal giant pain in my booty! It hurts so bad, feels best if I sort of support it and lie flat, or stand all the way up, sitting is not okay.

Oh I'm on TPN, but still losing some weight. Came in here 2 weeks ago 15lbs heavier.
I'm so frustrated. The only reason I think I don't cry all the time is because I know it will hurt!!!

Oh yes I'm neg. for Lynch. They did genetic testing in my tumor biopsy awhile back and found no genetic markers. I also have virtually no history of ANY type of cancer in the family. Just lucky

[raym]

Sorry you are having additional issues. I was on TPN for a bit and yeah lost weight. I don't recall the exact number of days..maybe 8.