home-procotcolectomy/ileostomy

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sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 2/28/2009 2:36 PM (GMT -6)   
I feel awful. I was doing so well in the hospital they sent me home early (impending snow storm). Switched from morphine to percasett to tylenol with codeine. So much pain. Some nausea. Don't want to eat. What should I eat? What should I do?
24+ years with Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08;codeine for D; sometimes supplements: MSM, e, selenium, C, B complex, multi, iron; recent meds to get through til surgery include propranolol and xanax


moreglorydays
Regular Member


Date Joined Feb 2009
Total Posts : 38
   Posted 2/28/2009 5:38 PM (GMT -6)   

Hi Sammies.  I came home from the hospital on Tuesday, and have been too out of it to post anything.  I am sorry you have so much pain.  My doc gave me vicodin with tylenol and told me I could take one every 4 hours, or two every 6 hours.  I only took two a couple of times because they knocked me over, but can you call someone to increase your dosage of pain meds, or give you something else?  Today I haven't taken any pain meds. for the first time, and my surgery was on the 19th.  As far as eating goes,  if you are nauseous I would think you would want to stick to crackers, toast, tea, maybe some applesauce?  I have been somewhat cautious with my food choices..... kind of the same diet I followed when I was flaring.  I have added smooth peanut butter, cream cheese, and today I had some string cheese.  I have been sticking with soup, toast, toasted bagels, canned peaches, and  fresh bananas.  I have eaten some cheese spinach raviolis and oatmeal, too.  I also have been drinking an ensure a day, because I am so skinny after this process, and figure the protein will do me some good.  When I saw my surgeon on Friday, he told me there were no restrictions on what I could eat.  This information doesn't agree with what the stoma nurse gave me, and I told him I was too afraid to try just anything.  He did say to try something new each day (string cheese today).  Hang in there.  You do need to get your pain under control, so your body can heal.  We will get through this with the help of all the amazing people on this site!


scheduled for permanent ileostomy surgery 2/19
tried asacol, rowasa, remicade, humira
currently on 40 mgs. prednisone
51 years young


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/28/2009 6:46 PM (GMT -6)   

sammies--I am so sorry you are having such pain cry    The first thing you have to do is get ahead of the pain AND stay ahead of it.  Start by taking the max dose per the allotted time period (if it is two pills every four hours, do that 3 times) and see how things are after that.  My proctocolectomy experience was more difficult than I expected and I was taking 2 vicodin EVERY 6 hours for TWO WEEKS...but I needed to and once I was able, I started cutting back to 1 pill than just 1 pill only am and pm than only 1 pill pm until I could live with the discomfort (no longer painful)...you could do a similar "step down" to your activities/life...don't worry about addiction as long as you know when your body doesn't need them anymore you taper until you don't take them anymore.

Your body WILL heal better when you are comfortable...and not in constant pain.

With all that, you MUST eat.  Make sure you are eating protein to help with the healing process...I craved peanut butter and jelly and ate that for breakfast/lunch/dinner during the first 2 weeks at home...is there something that you are craving?  Make sure you take any meds with food...crackers if that is all you are interested in...but your body won't start feeling better until you nourish it with food and water!! yeah

You will start to feel better, I promise.  I know that doesn't sound like much right now, but I've been there, too, and everyday is BETTER than the one before.

Do you have a home health nurse coming in?  When is your follow up?  Were they able to do your surgery laproscopically like they thought?  Okay, enough questions from me...You are okay and you will not believe how much better things will be in a week...hang in there smurf


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/28/2009 7:43 PM (GMT -6)   

I am so so so sorry to hear about your pain issues!!!  I can completely relate.  My surgeon is a shmuck and Rx a lesser dosage of vicodin that what I had during my open wound issues.  So that was a joke. 

I called my GI nurse for help b/c I just don't like my surgeon's office (who didn't end up calling me back till the end of the day instead of right away, and they knew I was in extreme pain).  Anyway, my GI nurse is absolutely amazing.  She called in a stronger Rx of vicadin and oxycodone (sp)...well, that was was faxed and then mailed.  Anyway, I took two of one and then two hours later took two of the other.  I did this strictly for two or three days.  Then I kind of lengthened the time to three to four hours...then I started taking just one of each every two hours until I quit the oxycodone all together and took the vicodin.

I had my surgery three weeks ago yesterday, and I still take my lower dose of vicodin every so often.  Normally after a day of being out and about I take it while I'm out.  Last night after be out and about I was super sore so I took the oxycodone before bed. 

I will tell you that I've had a hard time adhearing to the lifting rules...and just the overall relaxing.  I'm sure that had I been better at the resting part I wouldn't hurt around my stoma.  I think I sprained my muscles and harmed areas that were seriously traumatized...so now my tummy is just super pissed b/c I had been using my stomach musles.   shocked  

But I'll tell ya...just having the UC gone gives me the feeling that I conquer the world!  I am very excited about going back to work and start back to my chores and basic daily responsibilities.  I'm really not one to lay around AT ALL!!!

I wish you the best of luck, and please do contact someone about a higher dose of vicadin.  My low dose was 5/500 and my higher dose I think was 7/750 or something like that...I know the first number was 7.  The oxycodone really made a HUGE difference.

Good Luck!!!  smurf


: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 2/28/2009 8:30 PM (GMT -6)   
thanks for the support. I was walking around without any support on the third day and the doc asked if I wanted to come home today (5th day--no infection). I am so glad to be home but I guess I was flying high from the morphine and all the distractions in the hospital. I hurt, it's hard to eat, and I feel so gross.

Ohio76 --thanks for taking such an interest. The visiting nurse comes tomorrow. I am allowed to shower starting tomorrow too. Even if it's 3 seconds--I can't wait for the shower. My follow up appt with the surgeon is Monday 3/ 9. I will call on Monday for stronger pain med. Called the doc on call who told me quite simply to take the med that made me feel better and to take more of it---so I am taking the percocet. I just realized as I was typing that I'm still to take xanax as needed which is helpful too. YES they did the surgery laproscopically. The incision looks good. However it is very close to the stoma so the tape from the wafer is slightly on the incision which is painful. Ordered pizza tonight and ate a slice and a little more. In laws brought me a cake too but it has raspberries--we all thought they were cherries. Maybe I'll get another piece down later.

moreglory-- my skinny top half (see below about bottom half) is scaring me. I know I can't fix it in a few days--that it took a while to get here and will take a while back. I don't want you to be ill but I am glad we are in this together. I am going to try ensure again. Tonight I wil make a list of the foods I should try to take in tomorrow. ie. the powerade, ensure. Thought I could eat a whole banana today--ate 3 bites. Dumped a pat of butter and a packet of brown sugar on my cream of wheat.

Two weird things: I have SUCH a heightened sense of smell (think it's from the anesthesia) and my legs/feet are about twice the size as normal. Surgeon did see them twice. Says it's the malnourishment. My arms were huge too but they have come down in size-almost normal.

I hope the appetite comes back soon.
24+ years with Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08;codeine for D; sometimes supplements: MSM, e, selenium, C, B complex, multi, iron; recent meds to get through til surgery include propranolol and xanax


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/1/2009 7:32 AM (GMT -6)   
sammies--you can cut a small part of the wafer/flange tape (before you stick it to your skin) to keep the area by the incision open...I had a HUGE stem to stern opening and I did that with my wafer's tape which made a world of difference!

Keep us posted! Glad to hear you will be taking the stronger meds, they'll make a difference:)

lipgloss
Regular Member


Date Joined Jan 2008
Total Posts : 70
   Posted 3/1/2009 4:56 PM (GMT -6)   
hi sammies, i'm sorry for the pain your going through, well everyones gave you the right advice, all i want to say is that, first you will feel alone and confussed because at the hospital there were people looking after you and now you have to do it yourself, but it will get better i promise, and please make sure your always taking your painkillers, if your going to get better you need to be in no pain so that you can move about.
and try asking your doctor for nutrition drinks which make up for the food you need if your not eating well, i had them after my first opp, well after my second emgerncy opp becose i wasn't eating and had to get my enery.

hope your feeling better, and remember always take one day at a time

samie xxx

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 3/1/2009 6:13 PM (GMT -6)   
Sammies,

Sad to hear of the pain you are in, and it will get better just takes time to heal, ya know? Make sure to take your pills before the pain gets out of hand and it will help keep it tolerable.

The issues with the feet swelling sounds like what I had after my first surgery which was cause from the fluids in the IV. My feet were so swollen it scared me, but I kept them up on pillows and tried to stay off them as much as possible, and it went away within a week.

Hope you see improvements soon.
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08

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