Scheduled my surgery today! So many questions...

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Ju330
Regular Member


Date Joined Dec 2009
Total Posts : 175
   Posted 10/5/2011 6:00 PM (GMT -6)   
Hiya. I have been over at the UC forum, but decided to come over here because I've decided to go ahead with surgery! I met a surgeon in NYC today- the same surgeon who did my uncle's J-pouch surgery 20 years ago, actually. Ended up scheduling surgery for October 18- less than two weeks away! Wow! I can hardly believe it's finally going to happen. The doctor was very informative, and answered all my questions before I even asked them, such as surgery prep (just clear liquids the day before- piece of cake after colonoscopy preps!), insicion/scarring, time between surgeries (I may have to do three steps, depending how bad things look inside...), etc. Now that I'm home though, and looking around on here, I have more questions! I have the doctor's direct email for questions, but I figured I may as well try here, too. So, if anybody could help me out, I'd really appreciate some insider's advice. :-)  Here goes....
 
A) I'm a little spooked about taking care of my stoma after the first surgery- do I need to order "supplies" ahead of time from somewhere? What the heck do I need, anyway? I will have a visiting nurse for my first week home to help me, but I'd still like to know as much as I can ahead of time. Also, I found several posts on here about people getting their stomas "placed" ahead of time- I didn't have that done today, and don't have anymore appointments until the day of surgery either. Is that bad?
 
B) What do I bring to the hospital with me? Will I want people visiting me during my week there? (I know that probably varies by person... but, in general, what do you think?)
 
C) How long should I expect to be out of work after this first surgery? The doctor said 4-5 weeks, but on here I saw people said 6+ weeks. Just want to know what I should be telling my boss tomorrow...
 
D) The first day or so after surgery... will I be puking a lot? Lol, I know that's a strange question, I just wondered...
 
Thank you soooo much for taking the time to read and/or respond!

Ju330
Regular Member


Date Joined Dec 2009
Total Posts : 175
   Posted 10/5/2011 6:02 PM (GMT -6)   
Oh, p.s.: I forgot to mention I've had UC for 11 years, gone through all the drugs including Remicade, and, well, here I am. Haha.
Diagnosed with "moderate to severe" ulcerative colitis, affecting the entire colon, in 2000 when I was 10 years old.

I have taken... sulfasalzine, prednisone, 6mp, entocort, Pentasa, Humira, Asacol, Remicade.

I am now 21 years old and am currently: On Asacol, 6 tabs/twice a day, Remicade infusion every six weeks, fish oil, iron, vitamin D, probiotics, aloe vera (George's), multivitamin.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 10/5/2011 6:43 PM (GMT -6)   
Ju330,

1. Yes prior to surgery it is VERY important to meet with the surgeon's stoma nurse and have your potential sites for the stoma marked with a surgical marking pen. They should have you bend sit, stand, twist and do some normal movements. It is very important that your stoma be marked for in a place where you have no bends or body creases as it will be harder to place the appliance that way. My stoma is to the diagonal lower right of my belly button about 3 inches down. You do need to be seen again to have that done. My surgeon said when you are laid out flat on an OR table he would have no clue where my bends would be if I was not marked first. Then be sure to remark yourself as you shower and so on prior to surgery.

2. I had one close friend come see me at the hospital. All I brought with me was my cell phone and my purse but with very little money with me and no credit cards etc. You will not want a ton of friends visiting as usually you don't feel that great afterwards.

My case was bizaare as I had to get my stoma due to irreparable damage to my rectum and colon and severe scarring of my small intestine which had given me small bowel obstructions for almost a year. (this mess was created by other surgeons who did what turned out to be an unneeded surgery, long story) So I hadn't been able to eat for almost a year. I had a SEVERE post op ileus. That is where your guts shut down from being handled and from being under general. They did wake up after only 24 hours but as they advanced my diet too fast, I was in the hospital for 3 weeks and needed an NG tube. That is NOT as bad as it sounds as if you need it it sure is better to have it than not. It totally relieved the pressure building up in my abdomen.

YOU WILL NOT HAVE THIS EXPERIENCE! Likely you are able to eat so your body is used to it. So you may not even need an NG tube nor experience any prolonged post op ileus, this was purely my own experience due to my specific situation. Many on here are fine in a week with no NG tube.

3. I would vote for the 6 week rest after surgery, but you are young and if done laporoscopically, you could be fine in a lot less time. This really varies from person to person. Tell your boss that recovery time varies and give a frame of time 4 to 6 weeks sometimes 8 is even within a normal range. It all depends on how things go.

4. If you puke, they will give you antinausea meds, if you have severe ileus and puke poop then they will drop and NG tube and you will feel a LOT better with it. As I said, you will not likely have a long ileus as I did as I had not been able to eat in a year and on day 4 post surgical they gave me a plate of pasta. OF COURSE I went for it I had a whole year's worth of hunger and could not help myself. Then I was up and down in and out of ileus and finally got better.
Others will chime in here and tell you of more normal experiences.

Best wishes, Rosemary

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 10/5/2011 9:55 PM (GMT -6)   
I called and set up an acct before the surgery with a supplier for my husband so when the time came for his first order the acct was already established.  The hospital will send you home with supplies, the visiting nurse will or should also have some and in all likelihood place an order for you as well.  Our first order needed to be faxed as we had to have the written orders from the Dr and hospital with my husband's diagnosis and a summary of what kind of supplies he would need.  These papers were given to us at discharge.  Of course our initial order was for the type of wafer and pouch the hospital outfitted him with.  That cooperated for a few months and then he had a skin irritation issue so we tried a different one and then a 3rd one that seems to be "the one".  Also the companies are very good at sending out samples once you can tell them the size of your stoma as the wafers are different sizes even if you have to cut to size.
 
Definitely make sure your stoma is going to be marked by the stoma nurse.  Wear the type of clothes you wear most of the time so she can get a good sense of how to place it.  So long as the surgeon can...he will put the stoma in that location.
 
  My husband wanted no visitors.  I was with him from early morning to late at night and stayed with him the first 2 nights and then the other nights to the connecting hotel.  I had my laptop and sent out blanket e-mails to family and friends to keep them up to date.
 
Anything you bring to the hospital - especially something you would not want to lose....if it gets misplaced....put a label on it beforehand with your name and cell # and ultimately the room # of the hospital.
 
A backscratcher from the dollar store....lol.  You will be amazed at how itchy your back will be from being in bed, sweating etc.  The first day I ran out to a dollar store near the hospital as he was wishing he had one.  I put a label on that too...brought some extras with me.  Cell phone charger if you bring your cell phone.  Eucalyptus cough drops hubby appreciated a few days after surgery as his nose was very dry and it was soothing for his throat.
 
If you have someone staying with you in your room a lot of the time bring a notebook to write down day, date, time and who came in when and who said what.  Since I kind of lived there in his room for a week I kept a journal for him to read after he got home with all the comings and goings among other  personal feelings & things.  I also sent a copy of the e-mails to our e-mail too so he could read those later too and the e-mails he got.  I read them to him in the hospital but he was 1/2 out of it or sleepy and half remembered them.
 
For the ride home (ours was 2 1/2 hrs ) several pillows to make the ride home as comfortable as possible for your tush, side and abdomen area.  NO donut type cushion to sit on AT ANY TIME...need a waffle type inflatable cushion or egg crate type pillow to sit on.
 
I'd plan on 6 weeks out of work....if you can go back sooner and it is allowed that would be great but if you tell them less...you don't want to force yourself to go back too soon.
 
Drink plenty of water...when you start food and even afterwards...chew, chew, chew and go very slowly introducing different foods.  But you will get those guidelines given to you. 
 
My husband never got sick...I believe he was given some kind of anti nausea medication in his IV.
 
Initially when the pouch needs to be emptied the odor is very strong and will be for (?) a few weeks........don't let that discourage you as it will get better and there are products to help neutralize that also.
 
If you experience pain in the shoulder area don't be alarmed after the surgery...that can be an after effect of the anesthesia and will go away.
 
Also if you are in pain and need additional medication please speak up.  There is NO reason for anyone IN THE HOSPITAL to be in pain. 
 
That is all I can think of at the moment...others will chime in with more suggestions I'm sure.

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 10/6/2011 4:30 AM (GMT -6)   
Hi Ju330,
I was freaked out when I first saw my stoma but then my surgery was done as an emergency due to crohns/colitis and although I knew I was going to wake up with a stoma it was still pretty confronting when they first showed it to me and I burst into tears. I was like you and tried every drug in the book but proceeded to get worse, even the prednisone didn't work for me anymore, I was diagnosed with crohns 23 years ago and changed to crohns/colitis.
I had quite a few visitors when I was in hospital but I spent a total of 5 weeks in and many of my friends and family didn't think I would pull through. There were times I really didn't want company so I would just go to sleep and they understood and went home. I also was given anti nausea injections so I didn't vomit while in hospital . Everyone is different in their recovery time but don't push yourself to go back to work too soon, depending on what type of work you do as well, but I think its wise to give yourself longer rather than rush back to find your not ready. Take each day as it comes and you will know when you feel ready but give your work the heads up as to estimating a time to go back but make it clear you may need a little extra time.
Bring anything to make your stay more comfortable in the hospital, your own pillow some reading material, your phone, your own toiletries and anything else you can think of that you would like to do while recouperating. All the very best for your surgery and look forward to hearing how well your doing
Doreen
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