Illeostomy Reversal

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Rop
New Member


Date Joined Jan 2005
Total Posts : 16
   Posted 3/17/2005 3:36 PM (GMT -7)   
Hi,   I want to know if anyone has had to wait for more than six months for their reversal to happen.  If so why, and what can be done about pushing surgeons to have it done after six months and not have to wait longer??? Can not wait any longer.
 
Rop

Jazzism
New Member


Date Joined Mar 2008
Total Posts : 12
   Posted 3/2/2008 9:54 AM (GMT -7)   
Hi, I just had my Illeostomy reversed. Such a relief, only 5 months. I had serious Chron's Disease surgery which the doctors felt I needed the Illeostomy to bypass the surgical area to heal. Letting the doctors know I can't live like this, I need to work, I can't afford not to work helped push the reversal sooner.

AFTER the reversal I have CRONIC diarrhea. It's been a week and a half plus the incision spot has packing and a dressing needing daily replacement. It'll be another 2-3 weeks or something. The medical people say it'll be a few days, It'll be a while etc, so they're not sure how long it'll be before I'm fully back to normal.

My experience, hope it helps.

jetta3
New Member


Date Joined Feb 2008
Total Posts : 14
   Posted 3/2/2008 4:19 PM (GMT -7)   
My impression is that everyone has different experiences.  My Dad had his reversal 7 months after the ileostomy surgery, he had major diarhhea while in the hospital but since he has come home and is eating pretty much anything he wants, it has settled down. 

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/2/2008 7:54 PM (GMT -7)   
there are some people on this site who've had reversals sooner thatn 6mos. thats my suggestion from my doc. he says i can have it b4 if i heal b4 then. he also says that bc its reversable that whenever i say when he can put it back, but i may end up in the same agony i was in before. So i'm going to see a gi this week, hoping he can give me something to get me on the road to healing
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


butterfly229
New Member


Date Joined Mar 2008
Total Posts : 1
   Posted 3/3/2008 8:53 AM (GMT -7)   
I had a radical hysterectomy on 18Jan 2007 with an Illeostomy that was supposed to be reversed 4 months later. 14 months later, I still have it. I'm at my end, and after having the last exam on 25Feb, after my 3rd surgery to repair a pin-sized hole, there is a fistula that just doesn't want to get better - lucky me :-(. The depression is so deep and yet everyone seems to think that I just need to hang on a bit longer. I'm like..."You're not the one having to wear this stupid bag, you're not the newlywed who hasn't had sex in over 17 months, you're not the one that has this bag leak when ever it wants to." I'm thrilled for people that have had their reversals already, I can't wait to have mine.
As far as rushing the dr....look, I'd much rather have them be 10000% sure that it's fixed before they do the reversal, because if they aren't sure, and it - for what ever reason doesn't work, there will be many more problems down the road.
Good luck to you!!

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 3/6/2008 6:04 PM (GMT -7)   
i was back to work 2 months after my surgery, but could have been back one month. However, I only had the temp ostomy, no other surgery. Now I will need to make it permanent. Why would you have to wait to have it reversed before going back to work?
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


HisWill
Regular Member


Date Joined Mar 2008
Total Posts : 43
   Posted 3/7/2008 2:44 PM (GMT -7)   
Hi, I am new to posting here. I am going to have my bowel removed and a stoma put in permanently. I will be able to do all the things that I do now. I read from a few posts here where they were waiting for reversals to go back to work, leave the house and have sex again. I am confused. If mine is going to be permanent and I will be able to do these things when I heal from the surgery, then why do others need to wait to live their lives once it is reversed. Is there something that my doctors arent telling me about having this type of surgery? Thank you, HisWill

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/7/2008 10:04 PM (GMT -7)   
i don't think there is any reason for people to wait to live there lives before it is reversed. It will take some time after your surgery before you can do everything you want, like for the first couple of weeks you will have a limited diet, and not be able to lift and whatnot, but after that, it will be back to doing whatever!

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 3/8/2008 5:08 AM (GMT -7)   
I went back to work 2 months after my first surgery and would have gone back sooner, but had to gain strength back after losing so much weight. After second surgery I went back in 6 weeks, I agree with summer that you have to keep a low residue diet for the first six weeks, but after that you can eat just about anything and resume life as you did before the surgery.

I would try to be patient, the doc's have their reasons to hold off for as long as they do, and you want to make sure that everything is healed properly so that you don't have problems after that could cause more surgeries or delay healing.
Theresa

Originally diagnosed with CD in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


nurse42
New Member


Date Joined Dec 2007
Total Posts : 18
   Posted 3/8/2008 6:23 AM (GMT -7)   

HisWill, Just note to let you know that I just received an ileostomy on Dec 2007. I just love it I do all the things I did before i had one plus more because I feel so wonderful. I swim and run and have a blast with my kids who are 13 and 24. My husband is so happy that i had the surgery and we are better than ever together. I adjusted well to my ileostomy because I feel great and I eat just about anything i want except for popcorn and things with seeds. Your doctor will give you a diet to go by. I can have a reversal but have chosen not to I don’t want to mess up a good thing. I went back to work and no one at my job evens knows I have one, I have a friend who has had one for 10 years and no one at her job has ever figured it out! So see we are normal and just have a positive out look.  Nurse42

 


Lialdia 4tabs/day

Prednisone 40mg in Am just started this week

Imuran 150mg

Folic acid

protonix 40mg


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/8/2008 9:06 AM (GMT -7)   
yes HisWill, nurse42 is right. I've only had mine for about 2mos, but i'm going back to work in two weeks. I can't pretend i'm not nervous about it. and u can ask any regular on this site and they'll tell u, how i used to say i'll just stay in doors until my reversal. But once i got my strength and started feeling better, i didnt want to stay in the house. I've been to the mall, target (shopping is my therapy lol) out to eat, and took my first trip to philly and went to dave and busters! that was my first time emptying in a public restroom and it wasnt so bad. Mayb b/c the bathrooms were really clean surprisingly lol. N e way, this thing hasnt turned out to be as bad as i thought. There are adjustments that come along with it. But u wont want to be a hermit. Being out of pain is worth it. At least for now...lol
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


donut
Regular Member


Date Joined Jan 2008
Total Posts : 54
   Posted 3/8/2008 9:18 AM (GMT -7)   
I had a temporary ileostomy after a developed an abcess and fistula from a bowel resection for diverticulitis. Last week, I had my ileostomy reversed and am now at home gaining back strength and starting to get back to normal. Everyone's recovery will be different. I did not go back to work after my ilesotomy because I was still trying to recover from an infection, and as an elementary teacher,I did not want any setbacks by getting sick at school. Really, though, there is no reason if you are feeling well that you cannot return to your life. This site helped me through those three months with all kinds of tips about preventing leaks, using public restrooms, packing a good travel kit and foods to avoid. This site has been WONDERFUL! As I recovered throughout the winter, I would check this site every day for support. I am fortunate that I do not have a chronic bowel condition like Crohns or UC, but for those folks, I am sure that the ileostomy beats the disease. I could have easily coped with the ostomy forever if I needed to, especially with the support of all the people who offer advice on this site. THANKS FOR GETTING ME THROUGH THIS ROUGH WINTER!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/8/2008 4:12 PM (GMT -7)   
Donut,
 
Congrats on your reversal and recovery.  And a big You Are Welcome for the support.  For me, an ileo lifer, it is therapeutic for me to be able to help others, even if I really can't suggest a "fix" but to let them know I am listening.  
 
Best of Luck ....  keep us updated.
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


HisWill
Regular Member


Date Joined Mar 2008
Total Posts : 43
   Posted 3/8/2008 8:09 PM (GMT -7)   
Hi, Thanks to everyone that replied to my post. I definetly feel better about having my surgery and my life after my surgery. By the way, my surgery is going to be on April 3 at 7:30 am. My surgeon told me that she does her surgeries laparoscopically (sp?). She said the only reason she may not be able to do that way is if my colon is too big. Four days before the surgery she is going to have me do enemas and take ducolax to try to get rid of as much stool as I can. Has anyone here had a laparoscopic surgery? I think it will be so much easier as far as recovery goes. So I am praying that I will be able to have my surgery done this way. Thanks again to everyone here. I will be in touch! Love to all..HisWill

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/8/2008 9:07 PM (GMT -7)   
Mine was done laproscopically and it was awesome! I had hardly n e gas pain n the hospital. And my stoma startes working almost immediately. I had my surgery done on a tuesday and was discharged saturday.

However its important to note that everyone is different and this all depends on how healthy u r when u go in, what ur situation is, etc.

The best part for me was that there is virtually no scarring. I have 2 tiny dots on the left side of my belly, which are hardly visable and I'm sure if I treat them w/co co butter will probably go away completely. Ill probably have a scar from my reversal, but I don't mind at all.

It was still an adjustment, I had the gas pains once I got home. And the soreness of my belly made using the two piece appliance somewhat difficult. But I hear with the open surgery healing is more tedious.

Please keep us posted!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


HisWill
Regular Member


Date Joined Mar 2008
Total Posts : 43
   Posted 3/9/2008 4:12 PM (GMT -7)   
Hi, I have noticed that some of you who post here have medications listed at the end of your name. Can I ask why you are on prednisone? Is that something you have to take because of the surgery? or for another reasonVIEW IMAGE?  Thank you..HisWill

jconti423
New Member


Date Joined Apr 2008
Total Posts : 1
   Posted 4/13/2008 4:22 PM (GMT -7)   
sad  Hi, I had  a reversal Ostomie in the beginning of March and sometimes I wish I had the Bag back (Oscar) I feel terrible, I can't leave the house because of the gas and the diarahea, when does it stop?? My Dr. pit me on Lomotil, it hasn't been a week yet, but I don't see any major improvement. Is this part of the process? I dealt with the Ostemie better than this and tha almost killed me.!!

the car guy
New Member


Date Joined Feb 2007
Total Posts : 7
   Posted 8/13/2008 8:41 PM (GMT -7)   
I had a bag for only three months then had the reconnect I tryed to live a normal life but it took a good six to seven months to really feel normal cause my body and mind was shot and not to add to the healing my wife left me while recovering from surgery in the hospital but now 13 months later life is truly great and was definatly cause I rested till i was ready so my suggestions is do what ya can and nothing more its not worth pusing anything cause when your body is better its like being bone again for me

snake dr
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/23/2008 9:13 AM (GMT -7)   
I had a bowl cancer operation in April 2008,given a temp illeostomy which was to be reveresed in July, I developed a fistula between my vagina and bowel,they tried a repair but it failed, I am now awaiting an operation in Sept to drop a collagen sheet between the bowel and vagina,they say they will reverse me in Dec,but only if the opp is successful. They say that there is above a 50% chance of success but no guarentee.
I have struggled dreadfully with illeostomy and the fistula, I have spiralled into depression, rarely leave the house,I have been off work since 1st April 2008,I am now struggling financially, my relationship is splitting up and the cancer has been diagnosed stage 3.
I feel if I didn't have the illeostomy then I'd feel stronger,more normal and be able to face the cancer,get back to work and just fight on.

I am desperate that the fistula operation will work, has anyone had the same problems as me, how did you get through them, I am at my wits end.

fin
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/24/2009 9:30 PM (GMT -7)   
Hello Im a newbee on this site, im 26 years old and I have a temp illeostomy i have herd from a couple people that I will lose alot of weight after the reversal......is this true?

fin
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/24/2009 9:51 PM (GMT -7)   
I feel like I should tell a little about myself.....like i said im 26 (female) I have a 3 year old daughter, been married for 7 years. I struggled with sever UC for the last 6 years, almost died once when my hemo dropped to 4. In dec 2008 i had to have emergency surgery...colon removed. Its been really hard, im allergic to all the bags, so i cant wait to get the reversal! However i dont know much about the reversal....like is it true that most people drop weight? Is it hard to eat fruits and veggies? Do I have to eat junk? Like pasta bread ? Will my bottom be terribly sore all the time? Im sorry I just have so many questions!!

snake dr
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 4/26/2009 11:02 AM (GMT -7)   
Hello, I had my reversal 23rd Dec 2008,after having the illeostomy for 8 mths, I should've had the reversal in July but due to a fistula was unable to.

Firstly can I say its been the worse 8 mths of my life and if I can get through it then anyone can.

I was not prepared for my reversal, I didn't know until I came out of the opp if they could indeed have done, but all my Christmas pressies came at once when I woke up 'cos they did it.

The diarreha is horrendous, the soreness is horrendous, its now 4 months after the reversal and I still don't sleep through the night as I have to get up, but it is getting easier.
I found sitting on bags of ice during the first 6 wks help immensly, my surgeon told me that it can take up to a year for the bowel to function normally.

I take 8 looperamide a day to solidify and slow it down.

In terms of weight loss, I've only lost 7lbs and am still 2 stone over weight.
Soups are no good for me, protein is good, plenty of eggs, not too much fruit and veg but a reasonable amount is now ok for me,coffee,tea etc are fine, chocolate is a big no-no, although I have eaten more than I shoul d and paid for it!!

It does get easier as I said its 4mths now and its so much better and improving all the time, but the most important thing is that the reversal is so much better than the illeostomy, I'd rather go through this than to have to keep the bag, I struggled so much with it and am so happy that I don't have it anymore.

There were so many times through the 8 mths I had it that I couldn't see myself functioning 'normally' again, but truely I am so happy now and you all will be to.

Good luck with the operations xxxxxxx turn

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/26/2009 4:54 PM (GMT -7)   

snake dr,

Welcome to HW and thanks for posting.  Best of luck to you on your healing and recovery process.  Have patience.. it will continue to improve and you will feel better and better in time.  A lot of people measure how well they are doing on a daily basis.  I have heard others to measure your success by weeks or eveni months in this situation and you will see great improvement.

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


jsteele87
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/28/2009 4:21 PM (GMT -7)   
i had  severe uc  back on 0929/08 and had a stroke caused by the uc. my colon was removed on my 40th10/06/08. iwas told my ileostomy could be reversed. have asked the drs when i could have it reversed. i am told in awhile not to soon wants to make sure i am ready/healed.  i am not wanting to wait. this hasd been a nightmare. my husband. thank god for him has been my caregiver. je is a wonderful husband i am so lucky to have him. i have voiced my wanting to have this reversed. seems people thinki need more time.  i am afraid but i think i would have a better outlook to getting better if i did not have to rely on others to take care of mt illy. ibecame paralyzed on left side after stroke. can someone tell me what to expect from the surgery? i heard lots of accidents and with the depression i currently have the don't think i am ready. with my depreession. i think it would help make me feel better about myself. can anyone give me some insight??

snake dr
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 4/29/2009 3:12 PM (GMT -7)   
Hello jsteele87, I went through depression after my opp for bowel cancer, April 1st 2008,I couldn't accept my illeostomy, then I developed a fistula, despite my illiostomy my back passage was also going through my front passage,this took two operations to put right, which meant my reversal which sould have been in July didn't happen until Dec, so it was 8mths that I had the illeostomy for.
I'm not sure what your question is, if its the reversal or issues with the bags?
If its the reversal, you do have severe diarehha which can last up to a year, I'm now 4ths on since my reversal and am managing it so much better.
I had to sit on bags of ice to cool me down in the beginning. However I am not moaning, I am so much happier to have had the reversal and I too feel my recovery was quicker once I was rid of the bag.

If its the bag, yes I had a number of leaks which are absolutly gutting, I cried each time.
Hang on in there because soon you will have the reversal and you'll be so happy ,please write back and let me know if I've understood your questions correctly. Snake dr.
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