Good by Colon, Hello Perm. Ileostomy

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T Jane
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Date Joined May 2003
Total Posts : 785
   Posted 3/25/2005 8:20 PM (GMT -7)   
OK, I have a temp. ileostomy , its been almost a year sence my surgery. My fistulas are horriable, they have gotten 100 times worse and I cant stand the pain anymore.  I saw my surgen yesterday and we scheduled the surgery to remove my colon, and maybe my rectum for May 9th. I know this sounds weird, but I am a bit excited about this because I know I am going to be so much better. I was so sick before the first surgery and I almost have my life back ,so I know I will totally get my live back if I have this done perm.
 
But I am am a little scared that I wont heal very fast , I know everyone is different, I think I should do ok but I am still scared. I am taking my son to the beach June 16th, Do any of you who have had this done , think that I will be healed up good enough to go? It will be a little over a month. I wont be doing anything crazy or stressful, just relaxing on the beach and sight seeing.
I have already paid half of the hotel bill and I dont want to loose the money by canceling , plus we have promised him for three years we would take him and we are just getting settled enough with money to go.  if i have to i will postpone the surgery untill after we get back.
 
what do you all think?
 
 
I Just tell myself, it could be worse !!!
          "Even with a Bag!!!"
                Tonia                                                                


Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 3/28/2005 6:49 AM (GMT -7)   
Hi Jane.

I think if it was me I would still go on the holiday. Obviously you are not going to know for certain that you wont have complications or anything but you will have a few weeks of recovery time before your holiday is due.I have just had my rectum removed 2 and a half weeks ago and I think that in another week or so I would be prepared to travel. I had already had my colon removed due to UC 2 years ago so maybe that is why I am recovering so well but they did open me up this time from the tummy and underneath and I think I am doing realy well.

Go for it and have a great time.

Sue


Pin Cushion
Regular Member


Date Joined Feb 2003
Total Posts : 442
   Posted 4/7/2005 11:19 PM (GMT -7)   
Sounds to me like it would be a great idea to go and relax on the beach. As long as there are no problems after the surgery, and you take it slow I would go if it was me. In fact got room for another "bag buddy" to join ya? LOL
Sigmoid Colostomy / Crohns / Type 1 Diabetic / Ostioarthritus / Asthma / High Blood Pressure / High Colesterol / Migraines. Ain't life a joy?



* I think it may be time for a colorful metaphor*


T Jane
Veteran Member


Date Joined May 2003
Total Posts : 785
   Posted 4/8/2005 12:40 PM (GMT -7)   
Heck yea Pin cushion, there's always room for my fellow bag buddies,

 
I Just tell myself, it could be worse !!!
          "Even with a Bag!!!"
                Tonia                                                                


sparkn
Regular Member


Date Joined Apr 2003
Total Posts : 273
   Posted 4/15/2005 6:46 PM (GMT -7)   
Go enjoy the beach! Everyone heals differently, for some reason, the younger you are the hard the rectal wound is to heal, crazy huh? But relaxing on a beach never hurt anyone..Good luck with your surgery. I hope that you feel better soon.
Happiness is a journey not a destination - Souza


NDgrad03
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Date Joined Apr 2004
Total Posts : 1161
   Posted 4/25/2005 6:57 PM (GMT -7)   
oooh, i wish you teh best...by the way, i am 6'0 tall, but you can just fold me right up with my Clyde the crapbag and i fit neatly in a suitcase....<wink wink>
~Eileen
It will always get better...always

J-Poucher; 1st step 11/16/04, 2nd step scheduled for 05/23/05...pouch-vaginal fistula...healed?!

I finally feel FREE!!!!

Please donate to keep Healingwell growing!
http://www.healingwell.com/donate/


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17524
   Posted 5/2/2005 1:59 PM (GMT -7)   
Hi!  I'm new to the board, but I just have to respond to your question.  I had my colon and rectum removed in 1989.  I had a vaginal fistula repaired too.  I had been so sick before...needed transfusions, etc.  Since the surgery, I basically haven't had any  more problems with Crohn's disease! 
 
I had my surgery at the Cleveland Clinic.  I was hospitalized for a week.  My surgery was right before Thanksgiving and I spent that week worried about having Christmas gifts for my family.  Anyway, I got home on a Friday and rested that weekend.  Starting on Monday, I spent 6 hours daily, for four days, at the mall Christmas shopping!  LOL  I felt great!  (I was 42 when I had the surgery.)  I had been so sick before and now I had energy.  My Mom went with me to carry the packages though and to drive me there.  On the fifth day, (the following Friday), I had to go back to the Clinic to have 89 staples removed.  They couldn't believe how well I was doing. 
 
On New Year's Eve, which was six weeks after my surgery, I had forty people in for a big thank you party for all of their help.  I had been in the hospital for five weeks before the surgery and these wonderful people helped my husband with our three children.
 
So, I surely think you will be able to rest at the beach!  I'd be sure to ask the doctor about going in the water, though, that soon after surgery.  Once you are completely healed, you can do anything.  I have a swimming pool and am in it all of the time.  I go to the beach, travel around the world, and I've even been snorkling and parisailing! yeah   You'll have your life back.  I'll keep you in my prayers.  I know that God gave me the ability to heal so rapidly. tongue  

T Jane
Veteran Member


Date Joined May 2003
Total Posts : 785
   Posted 5/3/2005 7:15 AM (GMT -7)   

Hi sherrine,  you made my day by telling me your story. yeah   I hope i recover fast too, I'm glad you are better .   thanks !! :-)

who did your durgery at cleveland clinic, Dr. Strong is doing mine.

 


 
I Just tell myself, it could be worse !!!
          "Even with a Bag!!!"
                Tonia                                                                


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17524
   Posted 5/3/2005 1:27 PM (GMT -7)   

Hi, T Jane.  I had Dr. Victor Fazio do my surgery.  He is chairman of the gastric surgery department at the Clinic now, I believe.  He was wonderful.  I also believe he was the one who developed the J-Pouch surgery.  They really know what they are doing at the clinic.  The ET nurses are great too. 

You will be just fine.  Keep a positive attitude.  That and prayer has been proven to really help in illnesses.  I had to wait an extra week for Dr. Fazio to get back to the Clinic.  He was in Spain training doctors in various gastro-surgeries.  When I finally met him, I told him that God gave me the best doctor on earth.  He replied that God had given him the best patient on earth! 

Another thing...I was told to let my family and friends know that they wouldn't be hearing from me for a couple of days...that I would be "out of it."  But, that didn't happen either.  I got back to the room at 11:30 at night.  I slept and then woke up around 7:00 AM.  I sat the bed up and called my husband, my mother in Florida, and my neighbor!  LOL  Now I can't promise this will happen with you, but with a positive, "nothing will keep me down," attitude, you usually do much better. 

One last tip because this is getting long and I don't want to bore you.  As you probably know, they don't take the NG tube out of your nose until they hear gastric sounds in the intestines.  Well, as I said before, I had been in the hospital for nearly 5 weeks and had been on TPN...no food to eat!  I had heard that if you start thinking about food, it will get those gastric juices flowing, so I brought along magazines that had wonderful recipes in them.  After surgery, I pulled those babies out and started reading them and getting hungry.  By the third day after surgery, the NG tube was gone and they started me on a liquid diet!  I was eating regular food a couple of days later. yeah Best of luck on your surgery.  I will be wonderful to get your life back.

 

Sherrine 


T Jane
Veteran Member


Date Joined May 2003
Total Posts : 785
   Posted 5/3/2005 9:30 PM (GMT -7)   

Hey Sherrine,   i am wondering if i will have to go that long with out eating because i already have a ileostomy and they are suposed to leave it where its at.  the nurse is suposed to call me in the morning, so i will be able to ask her all of these ???'s.  I just hope she calls before i leave for school,   two more finals and I'll have my very first semester of college over with. lol.  that's something for me seeings how i have been out of school for 17 years and i've been sick all semster. 

 ,look out next semester, i'll be able walk up the stairs instead of using the elevator !!!!

Thanks Sherrine


 
I Just tell myself, it could be worse !!!
          "Even with a Bag!!!"
                Tonia                                                                


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17524
   Posted 5/4/2005 2:10 PM (GMT -7)   
T Jane, once you have your surgery, you will be started on clear liquids once they hear the bowel sounds...usually in a couple of days.  If you do fine on the clear liquids, they will start you on soft foods the next day.  I was eating regular food within five days after surgery.  The five week span of not eating that I was talking about was before I got to the clinic.  So, don't give it a thought!  You're not hungry the first few days anyway. 
 
You will be in my thought and prayers, kiddo.  I can't wait to hear YOUR success story!  Hope we hear from you real soon.  God bless!

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17524
   Posted 5/4/2005 2:16 PM (GMT -7)   
OOPS! I just saw that they are leaving your stoma where it is. I'm not sure how that surgery works. I'm just relaying how my surgery was and they had to creat a stoma for me. You quite possibly could have a much easier time! I'm anxious to hear how things went for you. Rest assured, the Cleveland Clinic is one of the leaders in digestive disorders surgeries so they will take great care of you.

Lola88
New Member


Date Joined May 2005
Total Posts : 2
   Posted 5/18/2005 7:27 PM (GMT -7)   

Hello I am new to this board, My fiance now has an ileostomy. after many years battling with cronhs desease his quality of life has been an amazing improvment. i have a couple of questions i was hoping maby some of you could answer for me:

 

1. its been 6 months since his last surgery (he had a hard time in the hospital he ended up having 9 total due to infection and the small bowell resection came apart) he still cannot stand to have it touched and isnt comfortable raising his shirt or looking at it, i was wondering if the pain he feels is common or more likly to be a more psychological thing (he went through alot of pain in the hospital and was pretty much constantly in pain) was the pain of the inscision a long term thing for any of you?

 

2. we are planning a vacation to mexico this comming june. He wants to still be able to go snorkeling and swimming in the ocean but is worried about it being a "floatation device" any tips? Also how does the seal hold up in the ocean? Have any of you heard or tried a "swimming cap" for it?

 

Thanks alot!


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17524
   Posted 5/19/2005 4:48 AM (GMT -7)   
     Hi!  I'm so sorry your fiance had so many problems with his surgery.  I had no problems so I'm not sure if I'm the one to answer your question.  My incision was uncomfortable for several months...not painful.  The scar wasn't flexible like the rest of the skin.  So, if he really is in pain with it he might want to go see his doctor about it.
     Swimming is something I CAN speak about, since I have a pool and swim all of the time.  I have never had any problem with my appliance while swimming...and I have been in the pool for hours at a time!  I also travel and I have been swimming in salt water and snorkling too.  I never have had a problem.  But, I know many people "picture frame" their wafer with additional tape.  It would be worth doing if he is concerned about it.  That might help him relax and enjoy himself.  If you want to check it out before your trip to Mexico, fill up the bathtub and have him climb in with a good book!  LOL  That could very well put his mind at rest.  Have a great time in Mexico!
 
Sherrine

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17524
   Posted 5/19/2005 4:57 AM (GMT -7)   
     I forgot somethng else.  I wear a lightweight spandex panty, not a girdle, under my bathing suit to hold my appliance in place.  It makes me feel secure.  I've seen similar products for men.  A medical supply store or medical supply magazines would have that kind of thing.  You might be able to find it on the computer also.  But, he might not need it, depending on his bathing suit.  Good luck!
 
Sherrine

Lola88
New Member


Date Joined May 2005
Total Posts : 2
   Posted 5/19/2005 6:16 PM (GMT -7)   
Awsome thats a great idea about the spandex thing ill definitly check it out! thanks sooo much
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