Surgery is SOON! Freaking out a bit...

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LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 5/3/2008 11:43 AM (GMT -6)   
Hi everyone,
 
My surgery is coming up this Tuesday...yikes!!  I think the "it's really happening" factor will not hit me until I am literally on my way to the hospital Tues morning, because I have been so busy with work (I have to work on Monday, the day before the surgery, too!) that I have not had time to think about anything...but maybe that is good..?!? :)
 
I know there are 3 people or so who are also having surgery either the same day or the day after me...post and let me know how you are doing! :)  I wish you too the best of luck and hope the adjustment is a smooth one for you!!!!
 
The good thing is my prep is only clear liquids for 2 days before (no stuff to drink) since I am have a total proctocolectomy...
 
***Oh, and Question*** has anyone had a total proctocolectomy done laprascopically (that is how mine is being done).  Does the CO2 that they pump into you hurt really badly when you wake up?  I heard much of it migrates to your shoulder area and causes pain there...
 
Also, any words of advice/what to expect in the hospital are very welcome should you care to post them! :)  I keep picturing what it will be like to wake up and see my stoma and staples in me (I am having laprascopic surgery, but they need to make one big cut to remove the colon through...)...I have never even broken a bone let alone had major surgery.  (deep breath)  Well, here's to a life-changing (for the Better) experience!
 
Erin :-)

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 5/3/2008 3:36 PM (GMT -6)   
Erin,
I just wanted to wish you good luck on Tuesday! And recommend that you walk as soon and as much as possible after your surgery! It will help keep the gas pains away. I know that some have had an epidural and they say that helps a lot with the pain, but I was too afraid of feeling the needle go in my back while I was awake so I declined. The pain pump will help with the pain and keep it tolerable for you. Let us know how everything goes when you can and be prepared to rest a lot, you will be wiped out for awhile.
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
Total colectomy August 10, 2007 -2nd step J-pouch formation -January14, 2008 -3rd step -April 14, 2008


G.T.McGahon
New Member


Date Joined Apr 2008
Total Posts : 11
   Posted 5/3/2008 5:09 PM (GMT -6)   

Hi Erin,

        I would like to wish you all the best for your up and coming surgery. Are you in the USA? Im in Scotland in the UK and am not sure how the hospital works. Try not to worry too much about the actual surgery and how you will feel afterwards,because everyone is different. Over here immediately after surgery you are in intensive care for a few days until you are stable. Then it is just up to how your body responds after the op. Hopefully you wont suffer too much pain afterwards. Look forward to reading how you get on. Good Luck

Grace
Diagnosed with slow transit bowel  in jan 1999, 1st illeostomy in August 2004.
Reversal in 4th February 2005.
Adhesions operation 24th February 2005.
Peritinitis operation 26th february 2005.
 
Hickman line inserted into main artery 6wks later,7wks after that contracted Scepticemeia.
 
 
 
 


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 5/3/2008 8:48 PM (GMT -6)   

here are a few things to know right after surgery:

1. when you wake up you will probably have a clear bag on, and it will look kidn of gross, lol.  Don't worry though, when you get home you can get your own supplies that aren't like that.

2. the stuff that comes out of you the first couple of days is gonna be this nasty green bile stuff that is gonna smell so bad, and it's like water.  but once you start eating again, it will thicken up some, it won't be green, and it won't smell so bad. i really wish i had known that, cause i was so upset, lol.

3. the staples look gross, but they aren't in there for long, and i kept mine covered the whole time.

4. it's probably gonna hurt, but the pain won't last long, and i don'tknow what you have, but the pain from that will be gone forever! YAY!

5. if you start to get worried between now and then it is totally normal, and just try to think of all the things youwillbe able to do after you surgery that you can't do now!

6. We are here for any questions you have and we will all be thinking of you (i know that sounds corny, but it's true!)

7. it's really not as bad as it sounds, i promise!

 

i hope all goes well!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/3/2008 11:52 PM (GMT -6)   
something i forgot, even though this probaby wont be an issue right after surgery, try to remember it, it will save you a major freakout, i know this from experinces, lol
Eating foods with red food coloring (red jello, red velvet cake, red koolaid, etc...) will turn your output red, and if you eat alot of it it will be bright red!  don't freak out, you are not bleeding to death, lol.
the first time i ate red velvet cake after my surgery i got up that night to empty and i went crazy thinking i was dying! 

LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 5/4/2008 10:07 AM (GMT -6)   

Thanks for the well-wishes and tips, everyone. :)

Tbraz, I am with you in that I would NOT want an epidural...  Besides, I have to keep reminding myself that I have dealt with terrible Crohn's pain for years, and feel like I have a very high tolerance for pain (most of us do, I am sure!), so I think I can handle it. :)

Grace, I am in the US, and the docs said to expect to stay in the hospital for 3-6 days, depending on how fast I recover.  You are right, everyone is so different that it is hard to know what to expect...!

Summer, thanks so much for the details about what to expect right after surgery (like the green bile and stink of it).  THIS kind of stuff is exactly what the surgeons and all the pamphlets they give you NEVER tell you...!  WHy, i don't know, since that is pretty weird and I would probably be upset by it if I was not expecting it!  So thanks! :)  I told my fiance about it too, so that he won't be disgusted by the green stuff if he catches a glimpse of it somehow! :)

I will post when I get home and let you know how I am doing! 

Erin


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/4/2008 5:59 PM (GMT -6)   
i thought they should have warned you about the way the output would be too, they also dont' warn you about the massive amounts of gas there willbe right at first, but that goes away too
please do keep us updated!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/4/2008 8:08 PM (GMT -6)   

Erin, you're in my thoughts and prayers for your surgery on Tuesday. I'll never forget when you posted your first message under the name "Considering A Bag." Now look at how far you've come! I'm so proud of you for trusting your doctors and for making a decision that's going to bring you excellent health.

Here are a few things I recommend bringing to the hospital: eye shades, ear plugs, Gas-X chewable tablets, liquid Tylenol, chewing gum, hard candies (butterscotch is my favorite), slippers, a robe, your cell phone with charger, hair conditioner, and a small pillow to press against your stomach when you get out of bed.

Also, ask your doctor for a pain pump, so you don't have to call the nurse every time you need some pain medicine. They get busy and can take up to 45 minutes to respond. With the pump, all you do is press a button, and it gives you the medicine through IV.

The medicine will make you sleepy, so that's where the eye shades will come in handy during the day. It also gave me a headache, so the liquid Tylenol will help with that, and the Gas-X will help with gas pain.

In the hospital, every medicine the nurse gives you has to be approved by the doctor, so if you have gas pain at 2:00 in the morning, the nurse would have to call the doctor for approval. Then, you'd have to wait for the pharmacy to get the order and send it up, which can take a couple of hours. It's something I learned the hard way after my surgery, so I'm happy to save you from having to be in pain waiting for some over-the-counter Tylenol or Gas-X.

One more thing, don't let them take you off the IV fluids too soon after you stoma starts working. In the beginning, it will put out a lot of liquid, so you'll need to replenish that through IV fluids. Otherwise, you could get dehydrated, so make sure they stay on top of that.

Good luck on Tuesday! I'll be thinking of you and praying for you. We'll all be anxious to hear how you're doing once you get home.

Take good care,

:-)  Cecilia


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Small Bowel Obstruction Surgery in '08, caused by adhesions.
Disease-free, medicine-free, and very thankful to be healthy again :)


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 5/4/2008 8:29 PM (GMT -6)   
Erin,
It hasn't been that long since I had my surgery, and I know how you are feeling. I'm glad you are thinking about not asking for an epidural. My epidural was administered incorrectly, and I felt all the pain when I awoke. It was horrible, horrible. The pain pump, on the other hand, was wonderful. Like everyone else says, the sooner you get on your feet and move the quicker the recovery. Don't be afraid. I walk a quick mile and a half everyday, do everything I did before, and will probably go back to work. Last but not least, the UC misery is gone, gone, gone!! Remember we all will be thinking and praying for you.
Jennie

ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 5/5/2008 5:17 PM (GMT -6)   
I had my whole colon removed back in Oct 07 with lapo surgery. I don't have a bag. My pelvic floor function was fine so the surgeon just hooked everything back up to my rectum.

I was dx'd with colon inertia. I took the sitz marker test and after 5 days 23 out of the 24 markers were left in my colon.

The surgery was the hardest thing I've ever done in my life! I don't mean to scare you but I do mean to prepare you. That being said, it's the best thing I've done for my health.

I was told I would be in the hospital around 6 days. But because my bowels didn't 'wake up' I ended up being in the hospital 11 days. When you have the surgery your bowels stop working and have to wake back up. They were afraid I had a blockage and did x-rays and then a Cat scan, but it was clear.

They wouldn't let me eat anything. I was only able to have ice chips and suck on hard candy. My advice on this, if your bowels are taking long to wake up and they aren't allowing you any nutrients then ask about a TPN. It's nutrients given thru the IV. I got very weak and was losing weight.

Then around 6am the morning of the 11th day I was in bed and my bowels just broke loose. I had no control. They got me unhooked from my IV pole and let me get in the shower and the poor nurse had to clean up my bed.

I had to eat a meal and see how I felt before they would release me. (Hospital food never tasted so good) You'll be on a low residue diet once released. My first meal home was: Roasted chicken, salad greens with dressing, cooked carrots, baked potato without the skin but with plenty of sour cream :), string beans and a dinner roll.

Everyone is different but I only had one accident after I got home. You might want to buy some Chucks to keep underneath you wherever you sit and on your bed.

I had bad spasming of my small intestines. The doctor said that sometimes people dx'd with IBS before the surgery have this. He gave me Symax which helped but he mentioned how stress effects the gut and to try and keep the stress down (yeah, right). Well, I have a perscription for Xanax so I thought I would try taking one with my meals and lo and behold that has helped tremendously. I've only had to use the Symax once after eating a sandwich with whole grain bread. I'm suppose to be able to eat whole grains by now but I guess my gut isn't listening to the doctor, so no whole grains for me.

I also take a stool softner because after about two weeks things seemed to have slowed down. I think my bowels are just slow, so I just take the stool softner for my own peace of mind. Maybe at some point I'll try not taking it and see how I do, but for now I do. I also take a good probiotics. After going thru this surgery the good bacteria in your gut is probably none existent.

I go out to eat with no problems. No worrying about making it to the bathroom. I thought that would be an issue but it hasn't with me. Depending on what I eat will depend on how thick or watery my stool is.

Also, no one informed me that this surgery would probably throw my menstrual cycle off. I had my period the week before surgery which I was glad about because I didn't want to be on my period at the same time, but I started my period a few days after surgery so be sure and bring proper underwear and pads just in case. The hospital pads aren't comfortable.

The most painful part for me was they pump you full of CO2 to do the surgery. Well that gas has to go somewhere and if your bowels aren't working you can't get it out. They tell you to walk, walk, walk. Well walking never got it out for me it made it go further up under my ribcage and shoulder. VERY painful. Someone on the boards suggested to roll your body from side to side. You may try that.

Take advantage of your pain pump.

It's also good to have someone who you know is going to be there the first night and next day. My husband went home after the surgery and the next day when I was coming out from anesthesia I was confused. Didn't know what day or time it was.

Good luck!! We look forward to hearing back from you. Let us know how you're doing :)
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/13/2008 11:10 PM (GMT -6)   
Erin,
I just wanted to let you know that I've been thinking about you and praying for you. I hope your surgery went well last week and that you're doing well. I look forward to hearing that you're home and on the mend.
Take care,
Cecilia

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/18/2008 8:52 PM (GMT -6)   
Erin,

I haven't been around for a while and just was catching up on some of the older messages posted and came across this one. How'd your surgery go? Are you home yet? Stay in touch.... details, details.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 5/24/2008 5:40 PM (GMT -6)   

Hi everyone--well, I am officially an ostomate!!!

I wanted to let you all know how my surgery went, but this will have to be brief as the Pens are playing (I live in Pittsburgh) and I can't miss it!  :-)    My surgery was on May 6, but you will see why it has taken me so long to post an update (it was a difficult journey...)

The total proctocolectomy with end ileostomy I had done went very well--it was done laprascopically, and I have hardly any incisions.  However, after they wheeled me out of surgery, they noticed I looked funny--my mom said I was completely white, including my lips--so they realized that I had lost too much blood and were concerned that I was bleeding internally.  So, they had to open me back up the same day to check for any internal bleeding (there wasn't any, so they gave me a blood transfusion and I was fine after that).

All I remember is going into surgery at 7:00 am, but by the time the second procedure was done it was 10:00 PM!! 

The next day, I was feeling pretty good--the nurses sat me up in a chair and told me how good I looked.  They gave me my pain pump, which I began using.  My fiancee was visiting with me, and I had the sweetest older lady as a roommate--her name was June.  So everything was going well, until...the next thing I remember is waking up with 17 people around me trying to revive me!  It was very scary.  Apparently, I am much more sensitive to the pain medicine than your average person, so what happened was my roommate, the old lady, found me slumped in my chair barely breathing!  (I think she was my roommate for a reason!)  They had to give me a shot to counteract the pain med (so I felt EVERYTHING the day after surgery--ouch!) until I was stable.  They put me on a much lower dose of pain med then.

Finally, after a few days, I began to feel better and they let me eat, so I was sent home.  HERE IS THE KICKER.  After being home and eating for a few days, I began to have bad stomach pains.  I dismissed it as gas pains.  They began to get steadily worse and closer together.  I ended up going to the ER, and guess what I had--an intestinal blockage (can you believe it???  I felt like the world's most unlucky person...!!  It was VERY hard to be positive at that point, I admit...)  SO, I was readmitted for another 4 days.  I had to get an NG tube inserted while awake (horrible, horrible experience), and they stuck a catheter in my stoma (yuck).  But thankfully, they cleared the blockage (it was basically a kink in my intestines) without surgery.

So, I have been back at home for 5 days or so, and I can honestly say that now I am feeling REALLY good!  I lost so much weight--30lbs--but have been able to eat so much in the last 5 days!!  Today I had Arby's and some general Tso's chicken!  It is so nice to be able to eat a good size meal and not feel sick afterward like I always did with Crohn's.  I have been walking a mile each day and getting stronger.  I have also had no problems with the ostomy--it really is not that big of a deal!!  It is SO much faster to go to the bathroom now! :-)   And pain-free!

So, it has been a long road, but I know if I can handle all that, I am up for just about anything. :)  Thanks everyone for all of your support. 

Erin


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/24/2008 7:10 PM (GMT -6)   
LittleE-WOW! What a story. I'm glad to hear you are home now. It is always hard to believe those things can happen to someone, but then they do! Keep up the eating...doesn't it taste good?!! Remember to eat all those things you couldn't before. For me it was Captain Crunch w/Berries and boy did they taste so good:)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/24/2008 7:46 PM (GMT -6)   
sounds like you had quite the fun time, lol. But it's over now and you are well, and that's what matters!
it is so great to be able to eat whatever, whenever, and don't worry about having lost the weight, you'll gain it back, lol.
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