Seeking Tips for Upcoming Ileostomy Surgery

Hi, I'm getting an ileostomy done on the 29th. Are there any tips or advice you guys can give me?

Hi Peeches. Good luck with your procedure. You'll get plenty of advice here as you adapt to your new situation. Here's my two cents. Several days after your surgery, an ET nurse will visit you and teach you how and when to put on and remove your appliance. Your insurance may even allow you to have a visiting ET nurse come to your home once or twice for follow-up and to be sure you do things correctly. You will need to be patient with yourself while you learn this new skill. You can expect a leak or two at the beginning, but you will learn to trust your appliance in time. There are some useful demonstration clips on YouTube which you may want to check out before your surgery. Best wishes, and welcome to this community!
PB

Hi Peeches, first of all, good luck with your upcoming procedure. I will have my one-year surgery anniversary in October, and I have adjusted well to this change. Not sure what your circumstances are for surgery, but I think of how sick I was with Crohn's and a 36-month flare, and the surgery has truly given me my life back. I have not missed a day of work since, and I am back golfing three days a week. Enough about me, you need some time to adjust to this lifestyle change, but be patient and you will get lots of support from this site. The emotional side of things can be trying at times. PB really helped me out with a few things. Plus, the ostomy supply companies have good counsel through their specialists. The way I look at this is there are people out there with a lot more health problems than what we are dealing with. Keep your chin up. Rod

Greetings Peeches xoxo ...aww hunny I'm sorry you are going through pain and surgery, know that we understand much of what you will be likely going through and feel free to share with us or ask us anything so that we may hopefully be of some help and support to you dear.....keep us up-to-date on how you are doing, I am one of many who will check back in here to see how you are ...xoxoxo...

~Doe

Thank you all so very much. It means a lot to me. Well, I've been sick for fourteen years, but I don't have IBD or anything like that. One day, I just started not being able to move my bowels at all. I have had so many surgeries and tests, but I have no answer as to why. I've been tested for everything by numerous doctors, and no one can find out what's wrong. I've even gone out of state to new doctors, but it's a mystery. So, when I was 12, I had surgery to have a tube put in my abdomen to flush my bowels out. Many surgeries with my tube and other issues with that, so I've known for a while this day would come. Mentally, I'm prepared for it, and I have watched YouTube videos to see how to change them. But thank you all so much for the support. It means so much, and I wish you all the best.

Words of Encouragement from Ostomy Advocates I Hollister

Have you been tested for FAP? It is very rare and many doctors have no idea -- genetic issue and worth asking about.

Anyway, the best thing I did ahead was have the ostomy nurse meet with me ahead of time and we put on a real bag to which I added water to try for a couple of days -- made everything so much easier when the surgery happened. I also discovered a severe reaction to one company's adhesive, and they were able to get the right one for me ahead of time. Good luck and think positive.
ewesful

Hi Peaches, just want to wish you luck on your surgery. I've had my ileo now for almost 29 years, and it gave me my life back. Ron in Mich.

Hi Peeches,

Wishing you all the best and a speedy recovery from your surgery. This is a busy road to be on, adapting, learning, and accepting. You sound strong, so I am sure you will do well. Accept help when you need it, and always check this site. There are always great questions and tips. I have had my Ileostomy for 40 years, and I am still learning. Best wishes.

Hi there, peaches! What I can say is that the first few weeks, things will be hard as it's a totally new experience and not a natural one! You will have leaks, and you will feel like it's taking over your life at first. But once you get used to it, you will have your own way of doing things, and it will become part of life. It all just takes time. If you need any advice at all, always come on here because there are lots of people to help! Good luck with the op. x

Hi Peeches,
One of the best things that you can do for yourself prior to the surgery is to have an ostomy nurse visit with you and draw out on your tummy the best place for your stoma. She will have you sit and stand to determine this and she should then advise the doctor. This will help you immensely in order to have as much comfort and fewer leaks when you get your ostomy. I am sure that you must have many questions and maybe some fear at this point. I remember that I did too 40 years ago when I got my ostomy, too. But, I have never regretted getting my life back and being free of the pain. Best of luck to you and let us know how you are doing once you have it and if you have any more questions.

If your ileal conduit is permanent, then please let me know. I have had mine for over fifty years and have approached and resolved many long-term issues that arise. If your ostomy is temporary, given your age, you will survive just fine. Best of luck to you.

Best of luck to you, Peeches, for a successful surgery ... and may this be the beginning of a healthy manageable life for you.

Lots of good info here ... especially about meeting the ET nurse before the op ... she will help locate the best place for the ostomy. Makes a HUGE difference. The docs/surgeons know the area ... but sometimes less than 1/2" to the right or left can make a big difference to how the ostomy sits and performs on your belly.

Let us know how it goes. And as others have said ... the early days can be a bit rough. But take it from us -- it gets better and better!

Hugs from Bea (Ileo Dec '09)

Hi peaches, your story sounds like mine. I had so many surgeries: prolapsed small and large bowel resections, rectopexies, out-of-state surgeries, a surgical mistake, a temporary ileostomy, and then a reversal. I also had the appendicostomy/mace bowel flush thing. But the end of what was left of my colon was so redundant, and I had narrowing above the rectum. So even with the antegrade enema bowel flush thing, I still was unable to empty my bowels completely and in a timely manner. I could have had a colostomy, which in hindsight I wish I did, but I went for a BCIR continent ostomy with a total proctocolectomy. It is not working out for me, and I will be getting a permanent ileostomy on Sep 6th. And I must say, when I had my temporary ileostomy before for 14 months, it was a relief after 10 years of spending 3 to 4 hours a day doing high colonic water enemas just to move my bowels. So people see an ileostomy as a problem, but to others, it is a solution, as it seems it will be in your case. I think you said or implied you will be getting an ileostomy as opposed to a colostomy. I am sure you will feel so relieved. Two things I would advise: every time you empty your ileostomy bag, take a water bottle and rinse the bag out. Just pour some water in the end of the part of the bag that you empty and swish it around. Do this several times until it is all clear and clean. I also think Hollister bags have the best seal. They stick great and feel very secure. I like the one-piece drainable because it is more discreet, and I felt it was less likely to come apart, but their two-pieces are great too. Also, one thing I would definitely invest in is an ostomy bag support wrap called Stoma Safe Plus. It's about $30. I found this one to be great. It is a stretchy wrap that goes around your body, and it has a nice-sized pocket to hold the bag. Also, a lot of bags are typically 12 inches, and I think for some, this can be too long. I know there are a few companies that have 10 inches or 9 inches. Anything less than that, like a pediatric bag, is not enough for most people's ileostomy output needs. You can PM me if you want. I know there doesn't seem to be many ileostomates that have ileos due to bowel movement difficulty. Most seem to be IBDs or FAPs. But I'm with you in the bowel dysfunction category. Also, some products that look good but I have not tried are the Stealth Belt for swimming and this other company that makes neoprene ostomy holder vertical belts. PM me if you want to chat more. And good luck. I am sure once you heal, you will be happy to be rid of your defective backside.

Hi everyone,
I noticed another member recommended a belt, so I wanted to let you know about another place to purchase a support belt: www.ostomybagholder.com. I just ordered one from this place and if you look on their website, you will see that they have very detailed sizes and options. They ask for all the pertinent measurements and sizes and customize the belt to fit you and your needs. If you like, I can let you know if it lives up to their advertisement after I try it out.