Will be having surgery tues...

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Regular Member

Date Joined Dec 2007
Total Posts : 151
   Posted 3/1/2009 2:53 AM (GMT -6)   
Hello,  I just wanted to introduce myself here. I have always been at the UC site, but wanted to start coming here.    I will be having the surgery on Tues.  Its called (are you ready?)   A Laparoscopic total proctocolectomy, ileal pouch anal anastamosis, loop ileostomy.      wow,  is that a mouth ful...but basically it means I'm having my colon removed with a jpouch made and a temp ileostomy until healing occurs and can reconnect to the jpouch.   This surgery is approaching very fast,  it  will be Tues.....I'm getting very very nervous...its all the "what if's" that are killing me.  any helpful advice re:  the surgery or recovery hints,  or any hints are appreciated.  Just plz don't try to talk me out of it,  it's happening!! I know i'm very nervous, but in the long run ,  I know its the best thing for me..anyways any tips are appreciated.!   What was most helpful to you...what was it like after surgery?  how much pain?  best method/meds for pain?  anything..thanks alot!!!  nice to meet ya all!!
42 yo RN, happily married, with 2 beautiful daughters, Tianna(15 yo) and Alyssa(11 yo).   Diagnosed Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05. Have apppointment with colorectal surgeon Jan 29th to talk about surgery....IT"S TIME!!   
Remicade infusions ~ Every 8 weeks since 11/6/07,  6-MP 100mg daily, Pentasa 500mg twice a day, Lantus insulin 15 units daily, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, and B complex vit daily (currently on pred taper...15mg twice a day)

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 3/1/2009 8:10 AM (GMT -6)   
ChristieAnn67--welcome to the ostomy side smilewinkgrin    You'll find a great group of people hear who are living disease free and some med free!
I don't have a j-pouch...it's a perm ileo...and haven't felt this good in years!  I don't think you'll have to worry about any of us talking you out of surgery skull
The best piece of advice you will hear is WALK, WALK and WALK!!  That will help you throughout your recovery!!  BTW laproscopic surgery is an easier recovery since you will not have a large open incision...but you will still have to take it easy (being an RN you probably already know that...)!  Take your pain meds when needed, too! 
I am sure the j-pouchers will be along...they'll be able to give you helpful suggestions for your specific surgery...Good Luck, I'll be thinking of you.

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 3/1/2009 10:50 AM (GMT -6)   
i would NEVER try to talk you out of it, i'm all about talkign people into it.

I dont have a jpouch either, i hace a perm ileo, but you will have one of those for a while so here is some advice abotu that.
Its goign to hurt, morphine will be your bestest freind ever, lol But it wont hurt for long, i was onpain med within 10 days during the day, and within 2 two weeks at night.
Now this is what i really wish someone had told me. When you wake up you will probably have a clear bag on (that's what most hopstials use so they can keep an eye on your output and stoma without haveing to take stuff off all the time!) and the output thats in there is probalbly going to be this nasty nasty green stuff, and it's going to smell like roadkill on a summer day!
BUT it wont be like that once you start eating regularly. So probably only for 2 or 3 days, then after you get home you can put your regular bags, the kind you dont see through, on.
I freaked out when i saw and smelled the stuff, i thought OMG this is sooo nasty,lol. But it doesnt bother me now.
Anyway, whenever you try to talk yourself out of it, start thinking of all th things you will be able to do after surgery without feeling bad or runnign to the bathroom, think about all the meds you wont have to take anymore, and about how you are getting your life back!
good luck and i will be thinkign of you!

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 3/1/2009 11:30 AM (GMT -6)   
Welcome, Christie! It's nice to meet you, too. I bumped up the thread "Soon getting permanent ileo" because it has a lot of good information for you. I had surgery 3 years ago and have been thrilled with the results! Good luck on Tuesday, I'll be thinking about you. If you have any questions between now and then, please feel free to ask. :-)

Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 3/1/2009 12:17 PM (GMT -6)   

Christie, I bumped up the thread "I have more questions" for you. It has info about pain and pain medicine.

Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.

Regular Member

Date Joined Jul 2007
Total Posts : 280
   Posted 3/1/2009 7:27 PM (GMT -6)   

Good luck on Tuesday! Lapro is much easier to recover from than an open surgery, so that's already one point in your favor! I agree with walking as soon as you can as it will keep the gas pains away. Drink lots of water as your colon used to absorb it and you will have to drink more than before to to keep hydrated. Have a small pillow for after surgery when you cough and the ride home, it will also help keeping small kids/pets off your belly when you get home.
Don't lift anything heavy (10 lbs) for at least 6 weeks. As your surgeon if you can chew gum after surgery ( It's not proven, but could help wake up the bowels and prevent ileus) Immodium helps slow things down when you have a loop ileostomy and also snacking on pretzels/chips while drinking helps bulk and retain fluid.

jpouch.org is great place to go for those with this type of surgery. Just take one step at a time and don't look ahead, just concentrate on what you are going thru now. Realize that if you read about problems, that it doesn't mean that you're going to have them too. It really is a luck of the draw kind of thing, but all will agree that it's better than living with UC!

Congrats ahead of time for being UC free and on your way to a healthy life! Keep in touch and let us know how you are doing!


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

Regular Member

Date Joined Oct 2008
Total Posts : 262
   Posted 3/1/2009 8:05 PM (GMT -6)   
Just want to wish you all the best for Tuesday!!!   

Hysterectomy 1998
Diagnosed IBS 2000
Vaginal Prolapse Surgery 2001
3 Hernia Repairs, 2004
Repeat Vaginal Prolapse Surgery 2006 (the mesh from previous prolapse surgery had let go and fallen into my bowels)...
Removal of mesh from bowels (it was piercing holes all through my bowels and appendix and cecum, causing 2 fistulas and heavy bleeding vaginally and rectally)...mesh was removed, two pieces of large bowel removed and resectioned with a loop ileostomy. 2008
I have underlying connective tissue disorder (Ehlers Danloss Syndrome) which is the reason for the two failed surgeries)
 Reversal surgery scheduled for March 9/09

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 3/1/2009 9:07 PM (GMT -6)   
Best of Luck to you during your surgery on Tuesday --- that's tomorrow!!!! We are here to help you thru it, not talk you out of it. We've all been in your shoes, and it can be scary. But, you will be a new person once all of that disease is out of your body. Keep your chin up, keep a positive attitude and you will do just fine! Check back and let us know how things are going for you.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Regular Member

Date Joined Dec 2007
Total Posts : 151
   Posted 3/1/2009 10:08 PM (GMT -6)   
Thank you so much for your replies and good thoughts.   I will go check out those bumped threads...thanks again. wink
42 yo RN, happily married, with 2 beautiful daughters, Tianna(15 yo) and Alyssa(11 yo).   Diagnosed Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05. Have surgery for colectomy and jpouch formation on Mar 3rd.     
Remicade infusions ~ Every 8 weeks since 11/6/07,  6-MP 100mg daily, Pentasa 500mg twice a day, Lantus insulin 20 units daily, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, and B complex vit daily (currently on pred taper...15mg twice a day)

Veteran Member

Date Joined Dec 2008
Total Posts : 511
   Posted 3/2/2009 12:42 AM (GMT -6)   

Hi there!

I had my laparscopic proctocolectomy with a permanent ileostomy three weeks ago this past Friday...and besides the prolonged pain from over doing it (my fault entirely!) I feel AWESOME!  Being UC free is the absolute BEST EVER!!! 

My suggestion is definitely have some trashy tabloid magazines b/c you won't remember much during the first day or two (possibly three) and it's nice to have them to reread once home in bed.  : )  My best friend gave me a bag of blow pops b/c I was told that having hard candy and gum would help move things along...so I just figured that having both together was a good plan...besides, I love blow pops, YUM!  Also maybe bring a blanket and definitely your own pillow.  My mother-in-law made me a blanket just before my surgery and it was so nice to have it with me.  Please make sure your surgeon and you have discussed the pain management plans...I just assumed I would be given a pain pump b/c everyone said they had one and my uncle is a retired abdominal surgeon and he said it was a given...well, I didn't have one.  I hate my surgeon who is now called Dr. Ass----.  : )  Shmuck.  Oh, I also think you would greatly benefit from purchasing a bottle of Hollister's deotorizer prior to your stay at the hospital.  It works great.  I really wish I had gotten some once I got a whif of initial output...like summerstorm said, it's gross.  You can pick it up at your local medical supply store...specifically it's called Hollister M9 odor eliminating drops...it says 4-12 drops are substantial, but I just squirt a bit in and go about my way.  I also use a little squirt water bottle and fill my accessory (that's what I call the pouch) a bit with water each time I empty.  Some people clean their pouches daily, but mine stays pretty clean b/c I rinse each time.  Uhm...let me think...oh...please do not over do it when you get home.  : )  I have a toddler and I completely did too much my first two weeks, so the third week I tried hard not to do much I began to heal a bit more...so I started being more active and OUCH!!!  I'm an idiot.  I appreciated my sleep mask, my slippers (with backing), extremely loose clothing, and cotton panties.  You'll probably want to either use old ones or get some that you wouldn't mind throwing away b/c your bootie may ooze a little.  Which is normal and gross too.  : )  Also make sure you drink plenty of fluids within the first week or two b/c it helps your output move through and felt it was just so much more comfortable.  The output will thicken fairly quickly, and the tummy toots last about two weeks (on average) and then they subside greatly!  I promise!!!  : )  I would just joke with my family and friends about my tummy tooting b/c it sounds more like a little kid making noises with their mouth or a tummy gurgling. 

I'm sorry I wrote a book, but this is just so fresh in my mind!  I'm still off from work and recooperating, but slowly getting back into a routine.  I went to the store today for the first time by myself since my surgery.  Well, since before my surgery b/c my UC was super angry and started to make life difficult.  So, it was awesome being alone, but man was I in pain by the time I left!  I gimped around when no one could see me, and I was very nervous about my accessory pooch showing.  I'm still too sore to wear panties over it, which I recently learned that the high cut tall panties are comfy and decently attractive, so I bought some today.  I also appreciate Gas-X...I like it better than Bean-O.  : )

I am so happy that you are going to be UC free!!! Yea!!!  It is such an amazing feeling!  I was in tears when I no longer felt the pain...UC pain that is.  I still take my moments to think about my tummy and how amazing it is to not feel anything there!!!

Also, FYI...I'm in the process of designing designer pouch covers!  They are going to be gorgeous and custom designed for everyone's preference.  I am still in the drawing board stage, and I will try them out before submitting the "open for business post" : ) but do not fear, I will have some very awesome pieces to help personalize your 'accessory'!

: )  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

Regular Member

Date Joined Feb 2009
Total Posts : 38
   Posted 3/2/2009 11:23 AM (GMT -6)   
Christie, I am sending positive thoughts and prayers your way. Let us know how you are doing when you are up to posting after you are UC free.
scheduled for permanent ileostomy surgery 2/19 proctocolectomy with permanent ileostomy 2/19
tried asacol, rowasa, remicade, humira
currently on 40 mgs. prednisone, 20mgs and tapering every ten days
51 years young

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