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SqueakyandLiza
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September 24, 2020 6:41 pm  

When last we saw our heroine, she was going for a second opinion because her surgeon suggested removal of the rectum to get her wound to finally heal. Did the second opinion agree with her surgeon?  Is she going to have surgery? Stay tuned to today’s installment of The Squeaky Sagas. 😂

So, that was my questionable attempt at humor. 😂 Just to refresh the situation, I have tunnels under my wound and a fistula going from my rectum to the wound. I felt like I was getting the run around from my surgeon. They kept telling  me if I did this or that my wound would heal, but it never did, so when they said if they removed the rectum, the wound would heal, it seemed extreme and I decided it was time for a second opinion. 

I went to a teaching hospital about 3.5 hours from where I live. It took a long time to get an appt and then my in person appt got pushed back 3 months due to Covid. I finally got in late July and they did sigmoidoscopy and scope of the stoma, showing good tissue in the small intestines and inflammation in the sigmoid. I had a CT scan and also consultations with 3 doctors (GI, colorectal surgeon and hernia repair surgeon) I also have a huge hernia on the left side of my tummy. 

I told the surgeon I was trying to avoid rectum removal if it wasn’t necessary. I had also had a gyn here recommend a hysterectomy due to some fibroids. He said since I wasn’t using it, we may as well remove my uterus when the surgeon removes rectum. 

So about a month ago, the second opinion surgeon got back to me. She told me their plan is to remove sigmoid colon, but leave rectum and anus. She also said that she consulted with a gynecological oncologist at her hospital and they agreed there was no reason to remove my uterus. She said they like to keep organs in place to hold things in place, if possible. 

In addition to removing the sigmoid colon, the other surgeon will take down the fistula and repair the hernia. 

I have had mixed opinions from people whether I should go ahead and have rectum removed or leave it. I have basically made up my mind, but am open to hearing arguments either way. 😀

My surgery is scheduled for October 6th. I have to go 2 days prior for a Covid test, so we will probably just go down Sunday the 4th and stay in Portland, rather than driving back home. 

It is really interesting all the things you have to do to prepare for a surgery that is actually scheduled. 😂 I am supposed to eat 60 g of protein a day, avoid all processed sugar, and walk 30 min a day. I also need to drink Impact Recovery drinks 3 times a day for the 5 days prior to surgery. Then the day before surgery, I am on all fluids, plus I have to take a bottle of Metamucil mixed with Gatorade. And take lots of antibiotics and wash with special soap. My original surgery wasn’t planned so I didn’t do anything like that. But then again in my original surgery I was so septic that I almost died. So big difference now. 😀

So now I’m just trying to figure out how to get 60g of protein a day. And I am thankful that the smoke from all the fires has cleared up enough to go out and walk. We had hazardous air quality for a week when the whole west coast was on fire. I ordered my Impact and am working on getting the house all cleaned up for when I get home. 

Sorry this is so long. A lot to update. Thanks to everyone who has been so supportive to Squeaky and I during this journey. 😀

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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Lynne
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September 24, 2020 7:54 pm  

Liza I'm happy you've landed on a decision and am sure it's the right one after such thorough research and trusting your gut! You might checkout Absorb Plus (on Amazon or Listentoyourgut.com) for an easy, nutritious way to get protein.  Each shake has 30g.  Sending you all my best for a successful surgery!

PS- I'm also (here in Seattle) so thankful for fresh air after a week of smoke quarantine on top of virus quarantine.  Funny the things you take for granted, like being able to breathe the air!


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SqueakyandLiza
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September 24, 2020 10:25 pm  

@lynne

Thanks Lynne!!  I will look up the Absorb Plus shakes. I have been using Boost shakes, but they have added sugars, which I am supposed to be avoiding before surgery. The nurse said if I can’t get enough protein without them, then it is better to get the protein with the sugar than not at all. The Boost has 20g of protein. 

We spent last weekend at the Oregon coast. It was rescheduled from April due to Covid. Then a week before we were supposed to go, Lincoln City was on level 2 evacuation with parts at level 3. Luckily the weather cooled and rain came just in time, so we were able to go. The air there was great. No smoke at all. And by the time we got home Monday, it was pretty good here. Still a bit of smoke smell, but so much better.  Is 2020 over yet? 😂

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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LK
 LK
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September 25, 2020 5:14 am  

@squeakyandliza...Hi there stranger! lol! Congrats on your surgery date!!  That's sure creeping up quickly!!  I have never heard of all that prep for surgery but I imagine that since it's been 12 years since I have had some that they know so much more today then they did back then.  

It is common to use the special soap before surgery,  I had to do that back in 96. Advising the protein drinks, and the other one,  I can't help but think how great it is that there is now so much more that we can do to go into surgery in such ready condition to get thru it well &  recover quicker. The smoke was pretty horrid here too as I did not even walk my dogs it was that bad! The joy of teaching Hospitals is they share information with all the other teaching institutes &  often throughout the world! 

I wish you all the best for your prep, surgery & recovery!! Squeaky...you behave for your momma there now you hear, she's had a tough time & needs all the cooperation you can give her!! Be well, both of you!! 

Linda


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ChrisandBagpus
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September 25, 2020 5:57 am  

Liza

Good to have an update from our forum heroine.

To me the second opinion I think was well worth the effort. There is IMO some sound advice. Leaving the uterus alone as it not causing any problem and helps to hold things in place. That's why I questioned does it need to be removed. fibroids are often very benign in nature.

If the remaining sygmiod is inflamed then could it be stopping the wound healing?

I'm sure having the hernia repaired will be improve the heroines superhero capabilities :lol: 

Its is often under estimated the amount of protein in the nuts, pulses and greens which are remember the 5 a day.

The 30 mins walk is a great bit of advice, has many benefits

With the Covid situation I'm certain you will be very well looked after I certainly was, I almost had my own exclusive medical team, I swear the nurses treated me as their mascot.

Best wishes and I hope the operation achieves all you wish for and a bit more.

A virtual Hug

Chris

 

 

 

 

 

Colostomy Jan 2020


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sjlovestosing
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September 25, 2020 12:26 pm  

@squeakyandliza

Hi Liza,

I am so happy to hear that you've come to a decision. As they say, it's always good to listen to your gut (pun intended.) I will be praying that everything will go well and that your problems will be behind you. 

God bless,

Stella


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SqueakyandLiza
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September 25, 2020 11:31 pm  
Posted by: @chrisandbagpus

If the remaining sygmiod is inflamed then could it be stopping the wound healing?

A virtual Hug

Chris, that is what they are thinking. There is a fistula going from the sigmoid colon to the wound, which they think is why it isn’t healing. Fingers crossed this fixes that. 🤞

And I’ll take all the hugs I can get, virtual or real. 😀 Though with Covid, they are all virtual except from my hubby. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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VeganOstomy
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September 28, 2020 12:05 pm  
Posted by: @squeakyandliza

I am supposed to eat 60 g of protein a day, avoid all processed sugar, and walk 30 min a day. I also need to drink Impact Recovery drinks 3 times a day for the 5 days prior to surgery.

Good luck with your surgery! These recommendations are interesting and I'm quite happy to see them! 60g of protein through food can be "easy", but if you find that you need to eat too much, opt for protein powder as a supplement. 

Vega is a brand that I usually use and recommend since it's vegan and really high-quality. Their products are expensive, though. I know that Walmart used to carry a vegan protein powder that I'm sure I tried at some point. These shouldn't be hard to find, especially if you shop on Amazon. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SqueakyandLiza
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September 28, 2020 1:00 pm  
Posted by: @veganostomy
These shouldn't be hard to find, especially if you shop on Amazon. 

IF I shop on Amazon. Hahahaha. 😂🤣 I love Amazon!!

Thanks Eric!  

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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SqueakyandLiza
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September 28, 2020 8:03 pm  

Hi all,

I just had an interesting phone call. It was the hospital doing the pre-registration for my surgery next week. He confirmed all my info, name, address, emergency contact, etc. Then he said “Your estimated cost after insurance adjustments and payments is $95,000. Do you want to take care of that now?”  😮 Fortunately I have a $2875 max out of pocket on my insurance, so he obviously didn’t do all his research. 😂 I told him about my out of pocket max and asked that they go ahead and bill the insurance first. He said he would make a note of it. 

Crazy thing is he told me the $95,000 was my 20%. Thank goodness we have good health insurance. I’ve already met my out of pocket max for in network, but this hospital is out of my network. If I was really going to have to pay that much, I would have to go to the same in network doctor who did my original surgery. Those of you in countries without these out of control medical costs, enjoy it!!

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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ChrisandBagpus
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September 29, 2020 6:18 am  

Bagpus

$95,000. dead flat faint Fainting

We are lucky here in UK cost of operation carparking if your unlucky

Colostomy Jan 2020


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SqueakyandLiza
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September 29, 2020 8:36 am  

Chris,

That is amazing. Cost of parking only!?! Why do I live here??  Are all you medical needs free. Doctor visits? Medications? Ostomy supplies?  Here everything is so expensive.   If you have good health insurance, like we do, it isn’t as bad, but health insurance is very expensive too. Ugh. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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LK
 LK
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September 29, 2020 7:35 pm  

@squeakyandliza... thats almost nauseating! I think I would have had a ❤ attack if I was told that !!! 

Linda


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VeganOstomy
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September 30, 2020 9:34 am  
Posted by: @chrisandbagpus

We are lucky here in UK cost of operation carparking if your unlucky

LOL. Same here in Canada. We complain about a $14 hospital parking fee. @squeakyandliza I do not envy that situation, but $3000 is better than $90,000 any day! :o 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SqueakyandLiza
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October 5, 2020 4:31 pm  

I just got the call. I have to be at the hospital tomorrow at 11:15 am for a 1:15 surgery. It is expected to take 4 hours. I’m getting pretty nervous now. I’ll check in tomorrow evening, or as soon as I am conscious and able to tap out a message. See y’all on the other side. 😀

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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john68
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October 5, 2020 4:53 pm  

Hi Liza, The very best for tomorrow, Another step in the journey 

ileostomy 31st August 1994 for Crohns


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LLNorth
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October 5, 2020 5:29 pm  

Wonderful that you don’t have to be there at some ungodly early hour! All best wishes to you (Liza and Squeaky) both!

Colostomy 4/30/18
I love the smell of coffee in the morning. It smells like .... victory.


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SqueakyandLiza
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October 5, 2020 6:48 pm  

Thanks John and LL. 😀

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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glenn.giroir
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October 5, 2020 9:47 pm  

Best wishes with your surgery.

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)

Doing what it takes to enjoy life to its fullest.


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Dona
 Dona
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October 6, 2020 9:56 am  

Hi Liza,

Sending good wishes your way today. Be well.

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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