New Stoma site questions

redlady23
redlady23 Member Posts: 13
edited March 2014 in Colorectal Cancer #1
I recently under went surgery, post chemo and radiation, to remove most of my rectum along with a bowel resection....there were complications and I had to have a second surgery (3 weeks after the first) which required a colostomy. I am two weeks post second surgery and my incision area is easing up on my pain but the stoma site is still very sore and has twinges of pain.

I am very anxious to find out if this pain will also cease. I am having a really hard time imagining that my life will ever get close to normal again. I am still learning how to make the wafer not leak and how to wear clothes with this bag attached to my body.

If you have any insight that could share with me, I would greatly appreciate it. The last 6 weeks have created great stress in my life and I am so hoping that there is an end in sight.

The Drs and nurses try to tell me it will all work out but, of course, they have no actual experiene with this.

Thank you for any comments.

Comments

  • neon356
    neon356 Member Posts: 137 Member
    #2
    hello Redlady, be assured that the pain will go away and your life will get pretty much back to normal. The first few months can be difficult, the stoma area is still inflamed and probably puffy which can make it tricky to get a good wafer seal. But once the swelling goes away and the stoma reaches its final size you'll be able to find a wafer that works best for you and leakage will be only an occasional problem. Just hang in there for a few months and you'll be OK. Good luck,---Carl
  • libris
    libris Member Posts: 23
    #3
    Just to second what Carl has said. Life gets back to normal, albeit a "new" normal. Do you have an ostomy nurse coming for home visits? If you can get one you may find it extremely helpful. Mine ordered new supplies for me until we found what really worked. Best of luck!
  • kirsten1
    kirsten1 Member Posts: 23
    #4
    Hi redlady..
    been there, kind of...I had an ileostomy. The pain was terrible!!! I had an excellent nurse as well as an ostomy nurse at my surgeon's office. I now refer to her as ST. Mary. She did give me excellent helpful hints, I hope I can explain this in writing. One of the problems I experienced with pain, initially was due to the seal of the wafer. Apparently the "circles" you cut are not the best way to measure the wafer, because no two stomas are the same and certainly not a perfect circle. I used the plastic ring(it's clear) that comes in the hole of each wafer. You hold that up to your stoma and trace with a sharpie, that way you are getting an exact copy, then you cut out what you have traced and use it as a guide to cut all your wafers....it makes the fit almost perfect. I also used lots of paste each time, as well as 3-M spray adhesive, under the powder and made like a crust before applying the wafer with the paste already on it. You can take new tracings as the stoma changes shape. It sounds like a lot, but well worth it for me, I never had a leak after I used that method. It also helped incredibly with the pain, as no waste material was able to escape onto the skin surrounding the stoma. I hope this is helpful, you could e-mail me on my page if you need clarity. It will get better, especially the pain. Try to keep your chin up! those first few weeks after surgery are the worst!
  • vinny3
    vinny3 Member Posts: 928 Member
    #5
    It will get better. The pain will disappear and the stoma will get to a stable size which makes it easier. My ostomy nurses were the most help and I could call or see them at almost any time for help. I use an Eakin seal, which is a maleable material which I put around the stoma and it enhances the seal- makes a more consistent surface for the fit. Sometimes you have to go to a convex ring if your stoma does not stick out completely. I found after about a year I would occasionally still get a leak on one side. I cut a strip of a Convatec Stomahesive wafer to put under my ring on that side and it really holds and seals well. Keep asking and you will get the answer that works for you. After awhile taking care of all of this will just be a normal routine for you.

    ****
  • KierstenRx
    KierstenRx Member Posts: 249
    #6
    Life will be normal again, but it will be a "new normal". I promise the pain will go away. It will be a year since I got mine in February. The first couple months were very challenging. I was scared of leaks and paranoid of clothing. However it just takes some time for your body to heal. I was scared to try different products even though I was allergic to holister tape because it was what I first used. I switched to Coloplast Sensura opaque drainable bags. They are great, no leaks and 6 day wear time. You have to experiment and find what works best for you. Call the company and they will send you free samples. I totally agree with Kirsten1 with her advice. It is more work, but well worth it. Also I read a lot on the ostomy website discusion board. www.uoaa.org I don't post on there, but have found tons of great advice over the past year. Also don't be afraid to go see an ostomy nurse. I have seen mine several times over the past year to help me with issues.

    Best of luck. Please feel free to email me if you have any specific questions.

    Kiersten

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