Illeostomy Reversal Apprehension

kristasplace
kristasplace Member Posts: 957 Member
edited March 2014 in Colorectal Cancer #1
Finally!!! I have a date for my ostomy take down! I honestly thought this would never happen! I have learned over the past year to hate my ileostomy, but now that it's going bye-bye, can you believe i'm a little apprehensive to see it go! I've heard all of the horror stories about re-training bowels, and how long that all takes. Over the past year, i have not had to worry about diarrhea, or constipation, or whether or not there has to be a bathroom nearby wherever i go. I haven't had a good night's sleep since getting the ostomy due to my fear of rolling over and bursting the bag (of course that's happened many times). But at least i didn't have to race to the bathroom leaving a trial of feces behind me. I would love to hear other's experiences with their reversals, and if they wish they had just kept their ostomies?

Thanks!
Many hugs, and wonderful wishes for Christmas and Hannakah!
Krista

Comments

  • jillpls
    jillpls Member Posts: 238
    #2
    HI, I had my reversal June 07. It was painful in the beginning but by 5 weeks I was able to dance every dance at my daughters' wedding. After 3 months I liked my new system better than ever before. Unfortunately, I had a reoccurance this past March and am back in treatment. You'll be fine and enjoying life in a short while. Just be patient.
  • momofsix
    momofsix Member Posts: 2
    #3
    Congratulations on your
    Congratulations on your scheduled date. The first three weeks were really hard. The incision was painful and I went to the bathroom at least 15 times a day. But after the first three weeks things were great. I learned certain foods would make me have to go to the bathroom pretty quickly after eating them. My reversal was March 08 and now the only problem I have is eating too big of a meal. If we go out to a all you can eat buffet and I can't control myself, I will end up going to the bathroom before we leave the restroom. As long as I'm good and watch the size of my meals I have no problem.

    My biggest advice is take your own toilet paper to the hospital. When you first start to go, you want some really soft durable tp not the thin hospital stuff.

    Good Luck,
    Jennifer
  • kimby
    kimby Member Posts: 797
    #4
    Take Down
    Krista,

    My colostomy take down was May 08. I was as apprehensive for mine as you are! I had heard so many stories and still talk to people that now wear diapers rather than have that ostomy. I would get another in a moment if I was at the point of no control - the diaper thing seems much worse to me than my ostomy ever was.

    The first month was rough. You will need to get that sphincter muscle working properly again and if it hasn't been used in awhile it'll need some physical therapy! Start doing kegals now, they say it helps. The first two weeks I really couldn't leave the house at all, not even to walk around the yard. I needed to be very close to the restroom as urgency was a real issue. By the fourth week I could do normal things but still needed to be within a few minutes of a restroom so travel (I work out of my car) was an issue. I still use Lomotil and used immodium with it for several weeks and ago when I went back on chemo. I recommend Cottonelle toilet paper wipes. They are moist, like baby wipes, but are flushable. There are a couple of brands on the market but they are my favorite. You will need something easy on the bottom!

    Good luck with your surgery. I am so glad I didn't back out. I decided to have the take down and if it didn't go well I'd have my ostomy put back. It really is amazing - I wanted it gone so badly, too, until I started to hear such discouraging stories. I've since discovered that many people want to ditch the ostomy so badly that they find a surgeon that agrees to reverse what was meant to be permanent. That's ok if you're willing to live with the consequences, it just wouldn't be worth giving up my freedom and independence for that!

    Kimby
  • pamysue
    pamysue Member Posts: 105
    #5
    My surgery is in about 6 hours
    but, my reversal is a bit different. I began having bm's not quite a month after my lower anterior bowel resection. I had a loop ileostomy and it began to close up after a couple of months. For months I was dealing with a bag and diarreah. So not fair. Finally, my stoma closed up completely. I have been able to find no cases of this and my surgeon also says he has never seen or heard of it. Every doctor or nurse I see wants to look at it. Weird. So I am nervous for a whole nother reason. I'm afraid he will put my intestine back inside and it will open up. Everyone says to have faith in my doctor, but I am nervous since I can't find anyone else who says they have been through this. I guess we will find out. At least I don't have to retrain my bowels. Have had pretty good control except for a few rough rounds during chemo.

    I hope you all have as happy of a holiday season as possible. I wish you peace.
    Pam
  • kristasplace
    kristasplace Member Posts: 957 Member
    #6
    Thank you all for your
    Thank you all for your advise, and experiences! Kimby, i totally understand what you're saying...the horror stories are very scary. Like many of them, i think i'll opt for the diapers. Nothing is nastier than waking up in the middle of the night, feeling something moist on your tummy, reaching down, and getting a handful of caca!! At least moisture in the diaper automatically tells you where it came from.

    Pam, what a horrible experience! One of my worries after getting the ileostomy was that the stoma would go back inside. I don't understand how it stays out? Sometimes mine would kind of go back in, and later come back out, but yours was healing shut?? I have also had problems with back flow, and got scared when i produced real turds. Didn't know that could happen either. I sure hope they can put you back together. It's like correcting a mutilation.

    I will try the kegal exercises. It makes sense that could help.

    Again, thank you all, and i'll let you know how the surgery goes!

    Many hugs,
    Krista
  • tiny one
    tiny one Member Posts: 465 Member
    #7
    I had my takedown 10 months after my resection and 2 months after my last chemo treatment. It's been 1 year since the reversal. I've had alot of pain and soreness from the frequency of the BM's. At first I was having over 12 BM's a day. Lomotil slows everything down. I usually can go at least 6 hours without anything passing through. Use a good barrier spray or cream. Don't eat to big of a meal at one time. Use soft toilet paper, I use wet warm washcloths after I have a BM. Sitz baths help also. I would've still had my takedown even if I would've known how hard it was going to be.
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #8
    No Probs Here
    Hi Krista,

    I had mine reversed after 9 months, and have been fine literally from Day 1. No complications, no crazy bathroom stories, nothing. I guess I'm boring! lol

    I still have my port though.......going on 8 yrs clear and can't seem to let go of my little security blankie!

    Happy Thursday!

    Stacy
  • kristasplace
    kristasplace Member Posts: 957 Member
    #9
    Thank you all for replying! I guess the stories about 12 bm's every few hours is scary for me since that's how my life was before the diagnosis, and treatments. I was never more miserable in my life, and i'm so fearful that will happen again. Even after the radiation shrank the tumor to near nothing, i was still blocked! I am doing the kegel exercises, so i'm hoping that will help.

    I can't believe the surgery is only five days away! Can you ever be prepared??

    Many hugs,
    Krista
  • pamysue
    pamysue Member Posts: 105
    #10
    kristasplace said:

    Thank you all for replying! I guess the stories about 12 bm's every few hours is scary for me since that's how my life was before the diagnosis, and treatments. I was never more miserable in my life, and i'm so fearful that will happen again. Even after the radiation shrank the tumor to near nothing, i was still blocked! I am doing the kegel exercises, so i'm hoping that will help.

    I can't believe the surgery is only five days away! Can you ever be prepared??

    Many hugs,
    Krista

    Krista,
    So your surgery
    Krista,
    So your surgery should have been today and I have been thinking about you. I hope all went well and they are letting you sleep for more than 10 minutes at a time. I'll look forward to your first post.
    Pam

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