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Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 8/15/2009 4:04 PM (GMT -7)   
So got home from the hospital yesterday and am still pretty sore and wimpy and well maybe just a bit weepy. This was WAY harder than you guys mentioned.

I thought of you all everyday. I kept telling myself if others can survive, I will too. It was really a comedy of errors and mishaps. Poor Americans who want medical care like ours. Not that it's the worst system in the world, but it seems there are problems. One that was brought to mind many times was why they would have see-thru toilet paper. You couldn't pull it with one hand because there would be too much pressure and it would rip. Ever been in a stall with tiny paper shreds all over the floor? That was my private bathroom annoyoance. So instead of crying about stuff (there are bunches of fun things to tell you about my stay and adventures) I would sit on the toilet and laugh about the craziness of it all.

So question, I have the ileo version of things and it isn't watery at all. Matter of fact it reminds me of tile grout it's so thick. Is that usual?

Also how long for the bum staples to not kill? I can't even sit any longer at this computer and I have sooo much to share.

Love and appreciate you all and hope your summers are moving along well (and everything else)

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/15/2009 5:29 PM (GMT -7)   
You are lucky with your output...sometimes it take us a long time to figure out how to get our output that way!!! Your diet could be helping with it too...some foods are wonderful thickening agents!!!

I don't know about the bum staples, since mine never bothered me, but my midline incision staples were VERY painful!! The one thing I remember is to not sit directly on your bum...sit on one cheek or the other and NO donut pillows since they can mess things up.

You'll be on you way in no time...Glad things went well:)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/15/2009 6:13 PM (GMT -7)   
yeah you are lucky that its thick. Mine was just water at first, and still is sometimes.

Anyway, it takes a while for your butt to quit hurting Like Ohio said, dont sit on it and no donut pillows you can try sitting on a regular pillow if you hae to sit on a hard chair. Otherwise, try to sit sort of on your back, if that makes sense

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 8/15/2009 7:47 PM (GMT -7)   
It never occurred to me until I read this post that I did not have staples in my bum! Is that the 'norm?' I had subcutaneous stitches and my belly hurt so much I never even noticed any bum pain.

Keep your chin up...it will get better.

Lyonene
Regular Member


Date Joined Jun 2009
Total Posts : 64
   Posted 8/15/2009 9:43 PM (GMT -7)   
I'm glad to see you're back home. I didn't realize they'd staple your bum you poor thing!

I can't wait to hear about your hospital stay. It sounds like it was very different from mine? We'll see.
 
You're right, that toilet paper is probably the worst kind I've ever come across!  I mentioned it to a nurse and she told me there's a trick to pulling it -- you have to pull at a certain angle and wouldn't you know it, she was right.  I never ripped it again after that.

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 8/16/2009 4:00 AM (GMT -7)   
Its pretty normal to be wimpy about what you've been through, I still am and had my ileostomy done back in early march, although it has only been 2 weeks since I had my bum sewn up and I never knew you could'nt sit on a donut pillow thats what ive been using since and my butt is still stinging bad. Anyway hope you will continue on your path to health. Take care and keep us posted

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 8/16/2009 9:55 AM (GMT -7)   
Okay, I'll add a few rolls of Charmin Deluxe to my hospital packing list when my time comes!! Also Cottonelle Wipes. I LOVE my Cottonelle Wipes.

(Meeting with a surgeon to consult tomorrow, thinking about having the surgery over the winter, post holidays, give me something to look forward to ;-) )
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Achieved almost-remission mid October 2008 (rectum still inflamed)

17 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 7/18/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 8/16/2009 10:42 AM (GMT -7)   

I first want to congradulate you and give you an official WELCOME smilewinkgrin   to our wonderful Cool Club of Awesome Ostomates!!! cool

I know it's difficult right now.  Really, there are no words to prepare one for such an experience.  You have physical adjustments, mental adjustments and emotional turmoil.  Each of our situations are unique to us, but all in all, we have each suffered a great deal before the final suffering of the surgery.  I never really saw the surgery as suffering though.  It was always the first and most exciting step toward a better life.  Not all good things come easy.  shakehead

Your output is probably thicker b/c of your diet, as previously mentioned, and that is pretty great!  I actually prefer a more watery output so it's easier to empty and be on my way.  blush    What thickens mine the most is mashed/baked potato and rice.  I also try to drink as much water each day, so I do use the Crystal Light packets for bottled water and pour one of them in my super huge cups to flavor my drink just a little. 

Your bottom will be sore for quite some time...though the intensity will ease hopefully within a couple weeks.  I didn't have any staples, as mine was laparscopic and surgical glue was used...even on my bottom!  It was weird.  I do remember the extreme discomfort of my bottom and the nurses told me not to put anything on it, but I did end up using A&D ointment and that made a world of difference!  I had nasty output stuff for a week, so I wore panty liner set further back.  I figured that my experiences with UC trumphed any sort of yuckiness dished out by the surgery. 

My surgery was a little over six months ago and I am so so so so so so so so HAPPY!!!! yeah    I drive at least 2 hours a day for my job and my bootie does get sore even now...but it's more of a hemmy feeling, which is funny b/c there is no way that's the issue.  Anyway, I think that you'll find that even once you start for feel healed your body is still going through adjustments.

Also, being six months in to a UC free life I have to tell you that I really do like having an ileo.  I named my stoma Penelope, and she's definitely a part of me now.  I just got back from vacation a week ago, and never was I inconvenienced by having her.  It was wonderful!!!!!!

I'm sure you'll continue having questions as you continue down this disease free road, so please ask away!  I will caution you to broccoli...I ate a ton of it steamed about two weeks out of surgery and boy did it do a number on me!  I haven't had it since!!!  I think we all have certain foods were look out for, or eat with great caution, so please let us know if we can help! 

You are going to do terrific!  Make sure you get plenty of rest, and if you find that your pain medication is not helping maybe your doctor, nurse or even GI specialists can prescribe you something more powerful.  I had to go to my GI nurse for help with pain management, and I am so glad that I did!

smurf  


: )  Robin
 
29 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


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 8/16/2009 6:44 PM (GMT -7)   
Thanks for all the good advice and encouragement. I am printing it out to keep and read over. I guess I need to count my blessings again. Adjustment is a word I need to ponder at this point in time. Too bad they don't have more emotional counseling with this lifestyle upheaval.

Have a good weekend!

Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 8/16/2009 8:22 PM (GMT -7)   
Sounds like you are doing great. Just for reference, it took me a good 6-8 weeks to not feel completely overwhelmed and weepy with the toll of adjusting to everything, and then by about month #3 I realized I was feeling quite normal. Be patient, and just let yourself feel how you need to feel, you will get there.

My output is often cement-like... my ET RN gave me good adivce in the hospital: right before I empty, I pour some water into the pouch, hold it closed while I mush things around a bit, and then it empties quite smoothly/easily/cleanly.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Proctofoam, Entocort, Remicade, Humira
10/10/08 colon removed, temporary ileostomy
11/10/08 FINALLY off prednisone after 18 months
2nd of 3 surgeries planned for '09 to form j-pouch


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 8/18/2009 3:17 PM (GMT -7)   
The water and slush around procedure works great.

Thank-you all for the comments and encouragement.

Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 8/18/2009 4:50 PM (GMT -7)   
I rinse mine out, too. I carry a little travel-sized bottle of water in my emergency kit.

Ulcerative Pancolitis (dx'd 6/2002)
Colectomy w/ileostomy 6/2/09; iron infusions; Aranesp injection every week for anemia;
Remicade; Pentasa; 6-MP; Prednisone; Lialda; Asacol
various meds for other conditions


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 8/22/2009 8:19 PM (GMT -7)   
HURRAY Trigirl!
I've been thinking about you and how you're doing.

Don't be so tough on yourself about your recovery. You just had your guts ripped out! Have patience with yourself. The healing process takes time. Both inside and out. Cry as much as you want. It sux. BUT then pick yourself up and be thankful for what you have. A cure!

It took me a few months b4 I felt 100%. But you'll get there. Don't rush it. If you do rush it, you could injure yourself more and cause a set back. (I should know, i was lifting my toddler too soon and hurt my muscles more)

Are you drinking enough? B/c it seems that your output is a little thick. It may be that way, everyone's different. So if you are drinking plenty, then great! It took me a couple of months for mine to get to that consistancy.

I don't think we ever said it wasn't hard, just that it IS BETTER! You don't feel it now, but next year, you'll be planning your next triathalon and not have to plan out your bathroom breaks!

Hang in there! *hugs*
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."

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