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Proctocolectomy  

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FelicityG
(@felicityg)
Estimable Member
Joined:3 months  ago
Posts: 202
18/09/2017 4:35 pm  

My surgery is about 2 months out, not scheduled yet. I've been told it will be an open surgery due to my internal mess. Adhesions, swollen kidney, adhesions on my left ovary and who knows what else...

I'd like the scoop on this surgery from folks who have underwent it. 

How long was the surgery?

Did you have any complications from it?

How long were you in the hospital?

How long did it take you to recover?

How long before you could resume work, what kind of job?

What would you recommend for recovery?

Crohn's Colitis, Ilieostomy


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VeganOstomy
(@veganostomy)
Admin
Joined:4 years  ago
Posts: 758
18/09/2017 5:04 pm  

Hey Felicity,

Do you know whether they'll be stitching up your bottom end or using a wound vac? I had the vac, and unfortunately, it didn't work out as good as it should have because my vac was defective. 

I spent five days in the hospital with little pain - most of the pain I did experience while in the hospital and after discharge was from the adhesives used to prep the VAC.

I had documented quite a bit of my experience before and after the surgery along with a healing timeline of the wound. If you want to check it all out, I suggest reading it in reverse order of what's posted here: https://www.veganostomy.ca/category-perianal-disease/

Friends who have had their wound stitched up seemed to have recovered really fast (weeks), and that's probably what I would choose if I had to do it again. 

I would personally prepare to recover for about a month - try not to sit, if possible, and take it easy as things heal.

For complications, I had a small channel that formed in the wound (because the VAC wasn't working) and that took a while to heal. My perianal wound still hasn't fully healed and it often drains stuff so I have to keep a gauze pad there to cover it up. This is common, unfortunately, but many people do fully heal. 

Keep in mind that I had severe Crohn's affecting my perianal region, so I was at a very high risk for complications down there. Everyone has a different experience depending on their situation, and I'd love to hear how others have fared. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Robert
(@njewell1)
Reputable Member
Joined:3 months  ago
Posts: 366
18/09/2017 6:04 pm  

FelicityG I had the Proctocolectomy surgery too 1 year ago tomorrow . I was in the hospital for 7 days  I went in for surgery early in morning and far as I can remember it was later afternoon between surgery and recovery before I was really awake  . I think my actual surgery was about 4 hours because they accidently  found 2 ureters on one side and one got broken so they had to put in a stent  . Then I had to see a Urologist after that couple times and have one more outpatient surgery .  But the next morning I was up walking around not running races but moving anyway . They said the more I walked the sooner I would get out . Only ice chips for 5 or 6 days but wasn't hungry anyway so not to hard . Took about 6 weeks for initial recovery but then I also had the stent to deal with . Couldn't wait to get off the liquid diet (I'm a meat and potatoes guy) . I had 29 staples this time only 19 staples in 2014 for my total colectomy  . I did not return to work only because I worked in construction and couldn't lift or do some things that were required . Luckily I had enough time in to retire anyway so that's what I did . As far as recovery take it easy turn on the TV or radio or get a book do what they tell ya and you'll be fine . Anyway its scary but like they told me you will have a better life . It has taken some adjusting for me because some things are different . But I think we all adjust in our own way and time . Again it can be a little scary but you'll be fine . Good Luck with it and keep us posted .

 

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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FelicityG
(@felicityg)
Estimable Member
Joined:3 months  ago
Posts: 202
19/09/2017 6:22 am  

Will do, glad to hear some experiences because it makes the whole thing less scary. It also helps me give my husband and boss an idea of what to expect.

We've been setting up our family room in anticipation of surgery. The bedroom is down a flight of steps and I suspect I'll not be managing those for a time. We've got the sofa set up with ottomans against it and a futon mattress with a memory foam mattress on top. I also had my recliner brought in and put close to the sofa so I can choose which one suits me better.

Crohn's Colitis, Ilieostomy


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Dona
 Dona
(@dona)
Reputable Member
Joined:8 months  ago
Posts: 318
19/09/2017 12:12 pm  

Hi Felicity,

I hope your husband and boss are two separate individuals! HA.

And once you get your recovery nest set up you can plan on what TV shows to binge on...400 episodes of Star Trek?  All of Sex and the City... the choices are endless. Do you have a streaming service?

Sounds like you have a good plan. It will good to get past this ( I was going to write 'put this behind you', but I suspect thats an old joke by now!)

 

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Robert
(@njewell1)
Reputable Member
Joined:3 months  ago
Posts: 366
19/09/2017 12:26 pm  

Felicity I was kinda like you with the stairs except our bedroom is upstairs but actually I was able to do it you might surprise yourself . But good to be ready and have your husband to help you . My daughter came and stayed with me for a few days then my wife took over  . You'll be getting around before you know it . Hope the info helps ya .

Dona that is good about Put this behind you ! Lol . I was gonna say . It will all work out in the end ! Butt that's probably an old one by now too . Ha

Edited: 3 months  ago

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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FelicityG
(@felicityg)
Estimable Member
Joined:3 months  ago
Posts: 202
19/09/2017 4:20 pm  

Yes, Boss and Husband are different folks :) Boss was hired just under 10 months ago, I'm the old lady as far as knowing the yearly routine and traditions. Poor Boss was just starting to learn them and I went poof. Been where I work 23 years. I got started on this rollercoaster 3 1/2 months ago I believe. Spent 3 months on the sofa...

Man, I watched Andrew Bourdains stuff repeatedly on Netflix trying to stimulate my appetite. CSI, Criminal Minds, Bones. I think I ran through each series 2 or 3 times. I'd fall asleep and wake up and start the Netflix again. Cable had me cheering Naked and Afraid, watching really brain rotting Ancient Aliens, goggling over what American Pickers found and even some car stuff. I even watched some of those ghost hunter shows even though I think my eyes should have stuck when I rolled them.

A year ago I watched a really neat Australian tv show called Clever Man, Aboriginal Myths in a real setting. There is a second season, I'll be holding off on watching it so I can watch season 1 again and then 2.

Considering getting an Amazon Dot for the hospital stay, love music and the Alexa at work is kind of neat to mess with.

I spent a lot of time stalking Facebook, falling down Wikipedia rabbit holes (following interesting links), reading Ostomy blogs, looking at Urban Exploration stuff.

I also have two cats who kept me a lot of company. Lio is the orange and Selene aka Bean is the grey one. Bean kept bringing me her toys. I'd wake to a pile of toy mice/caterpillers and puffballs. Lio was constantly in my face giving me love eyes, he's a love sponge.

1505852454-167970476417779426719904055975659022680831o.jpg
Edited: 3 months  ago

Crohn's Colitis, Ilieostomy


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Dona
 Dona
(@dona)
Reputable Member
Joined:8 months  ago
Posts: 318
19/09/2017 5:00 pm  

What beautiful cats. We have three house cats and one yard cat .. and walk our neighbor's dog.

One of my cats slept next to me for three plus years while I was in bed with the UC..all day & all night ( when not running to the can). She is pissed off that I don't stay in bed all day anymore! After I can home from the illostomy surgery we had to renegotiate WHERE she could sleep on my belly!

Good to hear husband and boss are separate people.

I agree on the TV shows.. PLENTY of shows to rot whats left of one's brains! Before we had the streaming stuff we used to watch iron Chef and Junkyard Wars! Desperate.

There are a lot of good series on now.

If you like thrillers,

try THE NIGHT MANAGER

its either netflix or Amazon. From the John leCare book.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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VeganOstomy
(@veganostomy)
Admin
Joined:4 years  ago
Posts: 758
19/09/2017 6:16 pm  
Posted by: Dona

One of my cats slept next to me for three plus years while I was in bed with the UC..all day & all night ( when not running to the can). 

We have five rescued cats here and they all have VERY different personalities. Two of them would (one or the other) was always by my side when I was sick and when I was recovering from my surgeries.

It was really comforting to have them by my side as I was feeling my worst. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
(@john68)
Honorable Member
Joined:3 months  ago
Posts: 506
24/09/2017 12:46 pm  

Hi Felicity G, Can,t give you any advice on this type of surgery but you stay strong and take one day at a time.

ileostomy 31st August 1994 for Crohns


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FelicityG
(@felicityg)
Estimable Member
Joined:3 months  ago
Posts: 202
29/10/2017 12:49 pm  

Surgery is possibly November 9th, 27th or 30th. Depending on when the two surgeons can be available.

So far they are doing the proctocolectomy, removing my uterus and my left ovary. Right is a potential if it looks off to the gyno. I imagine they'll revise Oscar since he's a loop ilieostomy? Not sure if they will stitch or use a woundvac. The plan is for it to be an open surgery rather than laparoscopic due to the amount of adhesions the surgeon saw last time he went in.

Crohn's Colitis, Ilieostomy


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Robert
(@njewell1)
Reputable Member
Joined:3 months  ago
Posts: 366
29/10/2017 4:47 pm  

Felicity they sure have it nailed down for ya don't they ???? Best of luck to you when you do finally get in there . Who knows it could be like ok we're ready come to hospital .

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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Tony H
(@tony-h)
Estimable Member
Joined:9 months  ago
Posts: 111
29/10/2017 5:13 pm  

Best of luck with the surgery Felicity , I think with your positive attitude you will recover quickly , I was told by my GI that people with positive attitudes recover quicker and with better results and you seem to have the right upbeat attitude ,

 


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FelicityG
(@felicityg)
Estimable Member
Joined:3 months  ago
Posts: 202
29/10/2017 5:13 pm  

Well, Oscar was put in after going in to meet the surgeon on a Wednesday. He asked me to go be admitted for tests, meets me Thursday morning and asks how I'd feel about having an ilieostomy done? When I answered positively he asked if I'd be ok with it happening that weekend. Sure, sounds good to me. Friday evening he installed Oscar. 

Hopefully I'll get the call soon and hope it's for the 9th. Boss has to arrange coverage for my floor since I'll be out a bit. Boss has to have a surgery in January and if I were done on the 9th I could cover some of her stuff.

Crohn's Colitis, Ilieostomy


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Marcie
(@shulmjs)
Prominent Member
Joined:2 months  ago
Posts: 803
29/10/2017 5:36 pm  

Felicity, Have u ever watch the "House of Cards"?  On neflex. I see that your surgery is coming up VERY soon!! I hope this time around that all goes positive for you!!  I will be thinking of you for quit some time!! You seem to a great patient and have a great support system in Ohio-- Your mind is in a very healthy way and I am positive that you will prove to the Doctors a totally different type of patient!! --Don't spoil them now-- Seriously, My best to you girl and a happy life forwards......... When u come home? those cats will be so  happy (and you) So many snuggles to look forward to-Poor hubby- he may have to wait to take his turn huh?? I LOVE cats.. Yours are so pretty together.. Happy home!!!!!!!!!! Best, M.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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