Surgery recovery sucks!

[Rheaeliza]

Sorry just venting here...

After 3 weeks in the hospital and two surgeries including HIPEC, hysterectomy, colon resection, temporary illeostomy, infections, collapsed veins, abscesses, leaks, no food for 3 weeks, drains, irrigations...ugh, I'm home!

I'm happy to be home, but everything is SO HARD!!! My HIPEC was August 26th, and my illeostomy was Thursday September 12th, so 1.5 weeks ago, also had a big drain and irrigation tube put in then to irrigate infection and abscesses outside of sigmoid colon.

Everything is hard...and usually I feel like I'm pretty tough. I rocked out 7 months of chemo, traveling, working on my feet the whole time, even went to some remote islands of the coast of Nicaragua during treatment. But this is SO different. I know I'm supposed to walk as much as I can, but it's so hard to go outside. I do laps around my apartment. I lose my breath easier, can't really walk and talk too easily.

Oy and this illeostomy, I don't know how to dress with it besides this pair of drawstring loungey pants I've been wearing for days. And as soon as I get better enough from this crap I have 2 more surgeries...liver resection and ostomy takedown.

How do you guys do it...those of you who have had so many surgeries and been doing this for years? Who work and exersize and socialize and travel with an ostomy? It all seems so hard and overwhelming. Like this giant giant mountain to climb and I can't even climb a molehill right now!

Thanks for letting me vent guys! I know in my head that this stuff gets easier, I guess I just didn't know how freaking hard and slow it would be!

[debzak]

wear the sweat pants for now. I have ostomy bag covers (google it). The bag cover is a cotton sock like thing that goes over the bag and it stays inside. I find the bag is shorter this way and doesn't rub against my leg. I ended up getting a new woredrobe when I went back to work with my ostomy. I did not like pants that were too tight on the bag.

I also keep wear a "trendy top" from the infomercial (I get them at the drug store). It is kinda like a tube top that I put over my midsection and tuck the end of the back in the bottom, again, making it shorter and then holding it in place.

I carry lots of stuff with me; baby wipes. an empty squirt bottle to fill with water to rinse my ostomy bag after emptying it, my own toilet paper (Just a little, just in case) that I wipe the end of the bag with before reclosing it...and of course a whole ostomy replacement (bag, wafer...etc) just in case. I have never needed it outside of the house, but I did have 2 blow outs in the middle of the night.

good luck, ask all of the questions you want.

debbi

[GreenMonkey]

UGH...... now I feel like an ass for complaining about my LAR experience (sept 10th). I too am miserable. Still don't have my voice back. Hate wearing nothing but baggy sweats. I spent the day in the ER today because my incision opened up and still THIS IS NOTHING compared to you ordeal! Jesus.... okay, I get some credit for having a double mastectomy before this followed by 6 reconstruction surgeries (3 due to doctor duckups) and then go for my routine colonoscopy and get an advanced rectal cancer diagnosis. But infection is not fun and you sound (although you might not feel it) like you are fierce and mighty! This is a good place to vent. I have a blog but most people don't want to read the tough stuff so I typically add fluff. But here... I let it all hang out.

Deb...ostomy bag cover!?! googling it now! thank you

[chemo sabe]

A short note from the male gender - before my ileostomy, they marked my body for the location of the stoma, making certain to not interfere with my belt line. I used the strap type undershirts and formed a pouch around my bag and then tucked the rest into my slacks. Then I wore my shirts with the tails out. I could have tucked my shirts in and occasionally I had to.

[LKGower]

Hi Rhea,

I hope you get better soon, as you know already about the complications I've been having.. But the one thing I struggling most with is also shortness of breath. Half the time I don't feel like talking because I don't wanna tire myself out lol.. It's such a horrible feeling hey :/

I had a chest X-ray today and get my results tomorrow..so fingers crossed no more fluid build up on lungs! Sometimes I feel like I have episodes that I can't breath but I think it's mainly all in my head! Still not a nice feeling though..

I hope now you're home you will feel more comfortable (nothing is better than your own bed).

Now it's just the waiting game to recover! And I hope you get to a point soon where you start to feel much better (I am still waiting for that point).

Lisa

[livingbyfaith]

my husband had hernia surgery the first of June and again August 12, recovery terrible, seroma, drain, c-dif, carrying water. Today he finally had a better day. Pain meds giving him problems, finally today able to lessen them and thus the side effects. Noone knows ahead of time just how difficult it can be.

[Jachut]

Well, the wardrobe sorts itself after a few weeks, the swelling goes down (even if you dont think youre swollen, you are), so a bit of patience is ll you need there.

I got over ll my surgeries very quickly. - i dont know if i have any "secrets" as to why though. Firstly i guess i didnt expect to find them hard. Ive always had a high pain threshold, pushed out three babies drug free and honestly dont think labour is as bad s its made out to be, lol. Oh it hurts but its doable.

Seconly i was extremely fit going in. I really value my fitness so I was damned if i was going to lose it to cancer. Because i was fit, i recovered quickly and returned to exercise quickly.

However, it hasnt all been eady. Having an ileostomy didnt phase me but it was challenging at times nd i didnt work while i had it and was having chemo. Since I went back to a colostomy six week that has behaved beautifully, but i took seven weeks away from work, i needed maybe one week but ive learned the hard way that being one of those people that seems to take it ll in their stride takes its toll - i focussed on the physical and neglected the emotional toll og surgery, chemo, menopause and i remained fit but i was undrweight and anemic - i came close to physical and emotional breakdown late last year. In hindsight i thought going back to a new job was just what i needed but it was the straw that broke the camels back for me.

I guess my message is that your recovery is YOURS and there's no poin comparing yourself to others or beating up on yourself for finding it tough. It takes time and we all just have to accept that.

[Cherie]

agh....wow you have been through so much...in such a short time. I don't know of anyone who has had this much surgery in such a short time frame. I expect that what you are going through is normal. My collectomy took four months to totally to recover from and I was very fit before surgery. Just take it one day at a time and look for the small steps in recovery...

[jjlist]

well i think you are doing just fine for 3 weeks. thats not a long time at all. keep it up. you too will walk over mountains one step at a time. if you try to do it in one step, its overwheming.

[Rheaeliza]

Thanks everyone for the support!

Lisa I hear ya...I want a magical day where I wake up and say "oh today is the day I turned the corner"

I don't think it's working like that! It seems like when I think about last week, I know that I am better this week in what I can do...but it's not an every day thing, and it's the physical that takes a toll on the emotional big time.I hope you get good news from your xrays.

I have CT scan tomorrow to see how my insides are doing/healing. And I guess we will talk about when to do my liver surgery. If I had had zero complications from my HIPEC and LAR then my liver surgery would have been yesterday! so much for that.

I guess you are all right, each persons recovery is their own. I struggle to not compare myself with those who have had "easier" recoveries. I am a healthy fit person too and I get so frustrated like "why is this so hard for me?! Am I doing something wrong!? Am I being a wuss!?"

Argh! Thanks again everyone for your kind words and support. It truly helps to hear others stories. Cancer and all that goes with it can be so lonely.

[LKGower]

Hi rhea,

Well I got my results from X-ray, all looks good..doesn't seem to be any further build up of fluid (phew!).

Good luck with your scan, and I hope you sort a date out with your surgeon for liver surgery. You are one tough cookie to go through all these procedures in such a short period

Please don't hesitate if you wanted to pm me if you had any questions about liver resection, I'd be happy to help!

Lisa

[Maia]

Rhea, just wanted to say that I've been reading your posts... you're brave young woman and I admire the way you're dealing with all this!
It's too soon for such big surgeries, I have faith it'll get better and better!
hugs to you

[Rheaeliza]

Thanks Maia, that's so sweet of you!

Lisa...I'm so glad about your good news and xray! I think both you and I deserve a little break from complications! jeez!

I had my follow up dr appt with my surgeon yesterday. He thinks I'm doing well. Had a scan of abdomen too, all looks good and my liver mets are still stable. So...we are going to do another scan and check up in two weeks, and if I'm doing well, looks like we will schedule my liver resection for a couple of weeks after that...so about a month from now. He was/is hoping that perhaps my colon will be all healed up by then and we can do my ostomy take down, but obviously doesn't want to rush that. Basically, he would love to do both surgeries at once and "spare" me a fourth surgery, but...obviously he says if my colon isn't ready for the reversal, won't be doing me ANY favors!

Said that the test is a barium enema to test for leaks. Sounds lovely.

Having trouble putting weight back on. I've lost weight since I left the hospital. My NP said it's probably mostly water weight that I lost. I'm down to 113 lbs, and I'm 5'10" . I was 135lbs the morning of my HIPEC before surgery. The first thing to go was my boobs! seriously!
Trying to really focus on protein intake, making protein smoothies (they give me a lot of gas though!) Really want to get the weight on before liver surgery. My surgeon said unfortunately full appetite and energy are sort of the last things to normalize.

Hope everyone is well, thanks for stopping in and wishing me well, and following my journey.

[Icesk8tr]

Rhea,
Not many people have as many procedures as you have had in one surgery. You have been through a lot. You are a very strong woman. It sounds like you are doing great. Be kind to yourself and take it one day at a time.

Christine

[Rheaeliza]

Thanks Christine!!!