Colectomy next week! Ash83

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Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 2/12/2008 7:17 PM (GMT -7)   
Hey everyone,

I'm scheduled for my colectomy next week and I'm starting to gather everything I need for the hospital stay and the two or three weeks after at my parents place. I know alot of you posted on another member's thread about what to bring, especially Ash. I just checked that thread again and that list that was posted was gone! If you could post it one more time I would really appreciate it. I knew I should have copied and pasted it when I first saw it, crikey. Anyhoo, thanks for the help. That Ostomy handbook someone listed was a great help in understanding the post-op stuff, so thanks for that too!
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February)

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (30mg taper)
Asacol 8 (Ran out and waiting for refill...actually improving off of it...hmmm)


Ash83
Regular Member


Date Joined Nov 2007
Total Posts : 128
   Posted 2/12/2008 8:04 PM (GMT -7)   
Carlow,
 
Hope this helps.
 
 
1. Bring comfy clothes. Sweats, loose fitting shirts, socks, flip flops/slippers/clogs to wear on your feet.
 
2. Bring anti-bacterial lotion/soap. I used the kind from Bath & Body Works. Purell works great too. This way, you don't have to get up and walk to the sink everytime you need or want to wash your hands. Especially with changing a bag, you want to keep your hands clean as much as possible.
 
3. Bring your own pillow, throw blanket, or any comfort of home to help get you through your recovery. Those white sheets, white blankets, and white pillows can get pretty depressing and "cold" after awhile.
 
4. Have people there with you as much as possible. My fiance, family, and a bunch of close friends came to see me a lot. Between my fiance and my family, I was never alone. Not even through the night. They alternated staying every other night so I would never have to be alone. That by far was the biggest comfort for me. I couldn't have done it without them.
 
5. Bring your own toothbrush, lotions, deodorent, etc. It'll make you feel at ease being able to use your own stuff. Some people may prefer to not bring their own belongings though. Personal preference I guess.
 
6. Bring a little notepad and pen. I was in the hospital for a month, and 2 of those weeks were spent with a gigantic NG tube in my nose. It was far too painful and uncomfortable to speak, so this came in handy. I could still communicate without exhausting myself.
 
7. Don't get lax with your pain meds. Try to stay ontop of getting them at the right times. Otherwise, pain management is a butt to get ontop of. It's like constantly playing catch up. Enjoy the meds, sleep and rest when you need to, and let your body do its thing.
 
8. Sit up and walk/move around as much as possible. The longer you're stuck in bed, the more aches and pains you'll get. Aside from the incision pain, the sore and achey muscles were horrendous. It had me in tears many times. If you can get someone to rub lotion on your arms and legs that helps too. I even had an amazing nurse who would come in and rub my back with lotion for me. What a Godsend she was.
 
9. Ask questions. Don't let the medical terminology intimdate you. If you're not sure of something or feel uneasy, ask questions and let them know your concerns. You have to be your best advocate.
 
10. Speak up. If your nurse isn't giving you the treatment you deserve, ask to speak to the nurse manager. If the cleaning people haven't come to clean your bathroom, tell someone. This happened to me, they would skip my room and never clean the bathroom. I was rarely in it, but still, those places collect tons of germs. By the end of it, we had both nurse managers come and apologize, my room was cleaned twice a day, and the nurse managers brought everyone coffee and breakfast to apologize.
 
11. Try not to worry about any day other than the one you're in. You'll get overwhelmed VERY easily if you start worrying about what things will be like 10 days from now.
 
12. Bring an iPod, crossword puzzles, or magazines. I was never up to any of these, but my surgery wasn't planned, and I was very sick. You might feel up to doing one of these to keep your mind occupied. Time in the hospital tends to creep by...very slowly.
 
13. Prepare yourself to be in the hospital longer than what your doctor has said. If he said 1 week, prepare yourself for 2 weeks. This way, if you have to stay longer it won't be as disappointing. And if you leave earlier, you'll be excited and looking forward to it.
 
14. Don't set yourself on a schedule. There are lots of mini setbacks that can prolong your stay. By staying ontop of your mindset, you'll avoid potential upsets and depression.
 
15. Ask to see a stoma nurse. They're wonderful people. They will help you out and give you as much help as you need. Also, find out if your insurance covers home health nurses to come help you once you've returned home. My home health nurse was incredible. She helped me learn so much and she really set me up for gaining my independence.
 
 
And last but not least, know that any disappointing or negative feelings towards this surgery, ostomy, or recovery is 100% normal. It's a major life change. But for most of us, it's a change for the better. You'll adapt and you'll learn things as time goes on. It's trial and error, as with many other things in life. Once you're home and have more questions, ask away. The people on this forum have been a great source of knowledge, support, and reinforcement.
 
 
 
Best of luck!
 
 
 
 

Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 2/12/2008 8:37 PM (GMT -7)   
Ash: Thank you again!!
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February)

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (30mg taper)
Asacol 8 (Ran out and waiting for refill...actually improving off of it...hmmm)


Ash83
Regular Member


Date Joined Nov 2007
Total Posts : 128
   Posted 2/12/2008 8:45 PM (GMT -7)   
No problem. :-)

JWC
New Member


Date Joined Feb 2008
Total Posts : 10
   Posted 2/13/2008 12:02 AM (GMT -7)   
Ash - All great suggestions leading up to the surgery and following.
I was just in and out last weekend (4 days) for the ileoanal takedown. I waited 4-5 months rather than the recommended 2 and believe I am paying for it now with loss of control.

However, the procedure you are having done is complex, your recovery is lengthy but, all in all - you will be happy with your new plumbing. I agree with all suggestions. Here are a couple more I thought of after reviewing the list.
DO NOT VOMIT (if you can avoid it, they put that nasal tube back into you). You can avoid vomiting by eating "VERY" lightly on that first low-residue diet meal they provide. ie. if given 2 pancakes, eat 2-3 small bites, nibble and chew well.

DO NOT go into the hospital with caffeine as a recent part of your daily diet. Quit before your surgery or the caffeine-headaches will hurt you in recovery for several days. This got my twice now and it hurt bad! Even the morphine barely helped with this.

Bring slippers and a robe for lots of walking as Ash recommended. The hospital socks slip off really easily while walking and the robe can cover the back of your hospital garment. WALK, WALK, WALK... Walk the first day if they allow you.

If I had not eaten too much of the pancake and therefore not thrown-up, my excessive walking would have gotten me out in 10 days! I ended up having to stay for almost 20 days because of the vomiting.

TAKE CARE - GOD BLESS and good luck with your surgery.

JWC
New Member


Date Joined Feb 2008
Total Posts : 10
   Posted 2/13/2008 12:08 AM (GMT -7)   
One More Thing,

You said that your parents are having you stay with them during recovery?
Make sure that you have lots of water and gatorade on hand. I also enjoyed plain saltine crackers all of the time. I must have gone through a package per day and 2-3 32oz Gatorade per day.

Also, have enough little conversation starters to run with when it gets quiet around the house. A comfortable recliner worked best for me. Also, a thick comforter and my coughing pillow for sleeping. CONTINUE WALKING AS MUCH AS POSSIBLE, WALK OUTSIDE IF POSSIBLE.

Ash83
Regular Member


Date Joined Nov 2007
Total Posts : 128
   Posted 2/13/2008 12:27 AM (GMT -7)   
Oh that reminded me of something else.

Either bring a small pillow or ask for one when you're there to hold against your abdomen/incision when getting up, coughing, sneezing, etc.

I was on the cardiac floor and they gave me those heart pillows they give to bypass patients. That pillow was my 3rd leg. Whatever I was doing it was right there with me. CT scans(moving to the table, laying down, etc), scooting up in bed, trying to get up, walking.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/13/2008 4:51 PM (GMT -7)   
ALL very good hints and ideas - great suggestions.

Ditto on the extra pillow!!! Loved my extra little pillow, even for just moving about in the bed. Wouldn't be without it even at home for awhile.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


jetta3
New Member


Date Joined Feb 2008
Total Posts : 14
   Posted 2/13/2008 5:21 PM (GMT -7)   

You folks are amazing....My dad had colon surgery on August 2, 2007, 20 inches of colon removed due to cancerous polyps and an ileostomy constructed.  We had little preparation for that scenerio.  He came back from surgery w/o ostomy but 3 days later they operated again constructed the ostomy and left his 10 inch stomach incision open.  He remained in the hospital until September 9th....long process of trying to eat, vomiting, NG tube and waiting for the "wake up" of his system.  He was doing well with the ileostomy and had completed 6 sessions of chemotherapy and suddenly his ostomy herniated, pushing about 4 inches of his intestine out thru the stoma.  So....after an enema and x ray to determine if his colon had healed, last Wednesday he had surgery to remove the stoma and reconnect his small intestine.  Well....here's where your wonderful advice comes in and I've been checking out your forum since last September, you all are inspirations, I often give him info that I have read from your posts and you have been incredibly helpful, I wish we had had a lot of the first surgery info while he was in the hospital, we felt we were traveling with little knowledge of where we were going.  Anyway, he has been in the hospital since last Wednesday, up on Thursday walking walking walking, some broth and juice on Friday and the morning on Saturday, then....vomiting and the NG tube, and diarrhea started on Saturday night also,  pretty much uncontrollable.  The NG came out on Sunday, food started on Monday, broth and then a dinner tray containing ravioli, spinach, and garlic bread which I insisted he  not eat (by phone as we had left the hospital)  Tuesday, cereal, rice, mushroom soup,Tuesday evening again vomitting and again the NG tube.  So now it's Wednesday and they are suggesting removing the NG tube again in the morning.  My question for you is : What should we do to help him get thru this w/o the NG tube again?  He also still has diarrhea.  It's been a tough road, he went into the hospital last August a very strong 70 year old and has become a very frail 70 year old.  Your thoughts will be greatly appreciated.

 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/13/2008 7:08 PM (GMT -7)   
i followed all of ASH'S suggestions and they really came in handy! especially that pillow! laughing was a killer when i finally started, coughing and sneezing hurt too!.

Also another lifesaver, as trivial as it may seem, THE EYEMASK! for when ur sleeping. The nurses come in at dreadful hours to draw blood. If u manage to get any sleep ur not going to want it to be fully interrupted, in all my years being hospitalized (practically every year since 14yrs old), I never slept thru the night and i never took an eye mask. For this surgery, I took the eyemask as was suggested, by AMEY i think, and i slept thru the night! It made a huge difference!

I hope ur surgery goes well. O yeah and the walking will help alot. I think that's the reason i got out of the hospital as quickly as i did!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


JWC
New Member


Date Joined Feb 2008
Total Posts : 10
   Posted 2/13/2008 11:56 PM (GMT -7)   
As far as avoiding the NG tube....
One must first understand what it is used for (I had no idea at first). Following an extremely detailed explanation from both my doctor and nurse, i can summarize - the negative pressure (vacuum) simply pulls stomach contents out to prevent vomiting. No, it is not used as punishment or to keep you quiet - although it feels that way.

I managed to avoid it by not reporting my 2nd vomiting incident. In my mind, having it re-inserted FOLLOWING the vomiting episode made no sense. Besides, while the 2 nurses inserted the tube, one did not close the valve and I vomited through the tube all over their faces (I did not think they wanted to go through that again).

I had words with the staff on the NG tube. I spent 8 years in a small Fast Attack submarine 1000 ft below the surface of the Atlantic crawling around in tight spaces. Tight spaces do not bother me, I have no fear or anxiety inside an MRI machine, etc. But this NG tube was the MOST UNCOMFORTABLE thing ever in my life.

jetta3
New Member


Date Joined Feb 2008
Total Posts : 14
   Posted 2/14/2008 5:31 AM (GMT -7)   
Thanks JWC, I appreciate your your insights from your experiences. I'm hoping we can work on the small amounts of food and patience. I hope your recovery continues to go well. This past year has certainly been a learning experience.

jennatoga
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 2/14/2008 6:28 AM (GMT -7)   
Carlow- what day is your surgery? Mine is the 22nd- I am nervous but I guess that's pretty normal, huh? :-)   This forum has been a godsend. Thanks for the refresher on the list, Ash. I've been adding to my list all month! I am petrified of the NG tube though. I had one for my esophageal manometry. It was in for 20 minutes and I thought that was torture. And now hearing from JWC? Yikes! My surgeon says I'll have one for at least two days!! I just don't know how that's going to work. That's the only thing I'm anxious about. But I guess I can make it through, knowing there's only good things on the other side of this, huh? Thank you to all who have helped me through a very scary time.  8 more days!!!

Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 2/17/2008 7:47 PM (GMT -7)   
The 21st! And yeah, the forum really has been a lifesaver. I had no idea about this NG tube being used as part of the procedure. My doc didn't say anything about it, I'm really anxious about having to go through with it. And here I though the colonoscopy the day before was the biggest fear I had. Crikey. 4 days....
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February)

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (30mg taper)
Asacol 8 (Ran out and waiting for refill...actually improving off of it...hmmm)


jennatoga
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 2/18/2008 8:45 AM (GMT -7)   
Awesome! Well, lots of love and luck to you. We'll be able to compare notes on our recovery together! I just found out my surgery's not till 4:15pm, so with my two day prep I won't eat from Tuesday night through till Friday night! Then the surgery, and then who knows how long it'll be before I can eat. I will just die! LOL And my surgeon says I won't lose any weight! Yeah, right. I just can't wait till this is all behind me, and the I can be on this forum encouraging other people with my awesome success story!

Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 2/18/2008 9:51 AM (GMT -7)   
Thanks, you too! And I'm sure we will. Yeah, I think I lucked out, my surgery is at 1045am thursday and my prep starts tuesday. So only two days sans food, oh boy. Did I mention I'm on 30mg of pred? I'm going to be sooooooooooooo cranky starting tomorrow, eek. Did your doc really say you wouldn't lose weight? Thats crazy. They're taking out 6-8ft of organ mass...of course you'll drop weight, lol. I can't wait for this to be over too. Every time I have to run to the bathroom and sit there in agony I just tell myself it will be over soon and I know that any pain or misery from the surgery will be moving forward to getting healthy, whereas now I am in stasis and the pain isn't going anywhere.
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February)

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (30mg taper)
Asacol 8 (Ran out and waiting for refill...actually improving off of it...hmmm)


jennatoga
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 2/20/2008 8:13 AM (GMT -7)   
Carlow...Just thinking about you today!! I'll be thinking good thoughts for you tomorrow!! Woohoo! We're almost fixed! Can you believe it? I just can't wrap my head around the fact that soon I'll be able to have a BM without any help! Lots of love and light headed your way...see you on the other side of this!

Ash83
Regular Member


Date Joined Nov 2007
Total Posts : 128
   Posted 2/22/2008 6:45 AM (GMT -7)   
Hey Carlow- Hope the surgery went well and you're recovering with comfort and ease. Please update us when you can!
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