Struggling with new cholostomy

[mandylu2]

I got a temporary cholostomy a few weeks ago. I suffer from pelvic floor dysfunction, constipation and pelvic pain, having the surgery was to see if my quality of life improved and to relieve some pain. This is not anything I imagined. hate having a bag attached to me, I cry whenever I need to empty it and I can’t look at myself in the mirror. I was told by nurses that it would probably only need to be emptied once a day if that. Not true. Wearing the apparatus is uncomfortable, will it ever get better. I am always aware of it, stool passing is uncomfortable. Does it ever get better, any of it ?
Amanda

[steiconi]

Yes, all of it gets better, you gotta hang in there.

since you have a colostomy, you might want to talk to your doctor about irrigation. My doc made me wait 3 months, some docs seem to say it's OK right away. Irrigation is like an enema through your stoma; you pass all or nearly all of your poo for the day, then don't have to worry about output.

You might look into medications or therapy for depression. This is a huge change in your life, and it sounds like you need a little help getting through it.

Call around and get free samples from the ostomy manufacturers. You can probably find an appliance that you like better than whatever you're using. I started with a huge clunky thing that I was happy to get rid of; other people love that model!

Here is contact info for some manufacturers (thank you, Charles in Tx)
COLOPLAST http://www.coloplast.us/about-us/colopl ... lsrc=aw.ds (888) 726-7872
ConvaTec http://convatec.com (800) 422-8811
Hollister http://www.hollister.com/ (888) 740-8999
Marlen Ostomy Care Products http://www.marlenmfg.com/ (216) 292-7060

Dansac http://www.dansac.com/ (800) 699-4232
Eakin Cohesive Seals (800) 345-0473 http://www.eakin.eu/categories/2/patients.aspx (800) 345-0473
Genairex http://www.genairex.com (877) 726-4400
Nu-Hope(800) 899-5017 http://www.nu-hope.com/
Ostaway http://ostaway.com/ BagItAway.com Ostomy Supplies (Ostaway x-Bag) Providing a more discreet solution for ostomy pouch disposal (800) 774-6097
Osto- EZ-Vent http://www.kemonline.com/content/home/ (888) 562-8802
CAVILON by 3M No Sting Liquid Bandage, http://www.shop3m.com/70200763947.html? ... (800) 228-3957
Colo-Majic Liners http://www.colomajic.com/colo-majic-liners/ Toll call (604) 988-2707

The Phoenix Magazine for Ostomates http://www.phoenixuoaa.org/ (949) 600-7296
Torbot Skin Tac http://www.torbot.com/ (800) 545-4254
CliniMed

www.cymedostomy.com

If you have trouble with a product, or need advice, call a helpline:

Hollister's helpline is: 888-740-8999
Convatec's helpline (which is staffed by WOCNs): 1-800-422-8811
Coloplast: 1-877-858-2656
Marlen: 216-292-7060
Nu-Hope: www.nu-hope.com (form on line)

[Soccermom2boys]

Hi Amanda—welcome! I have had a permanent colostomy (due to rectal cancer) for two years now. I am not going to say it is an awesome experience, but I will say you do get used to it with time. Yes, I do feel bowel movements, not always, but a decent amount of time. I guess in time it just becomes more normal to you.

As for how many times you have to empty it, that really does depend on the day and your eating habits. I will often just “squish” output down to bottom of bag and can then just empty once or maybe twice later in the day/evening. I know, it’s not the same as the original way we were used to, but for me, there wasn’t much of a choice in that I needed the colostomy if I wanted the best chance of being cancer free. I am still a work in progress mentally on living with a permanent colostomy two years later, but that is small compared to the 45 years I had my rectum LOL so I anticipate it will get more and more natural with time.

I teach high school students so I am definitely mindful of my appearance and odor with an ostomy while in front of twenty some teenagers (who don’t even know I had cancer let alone an ostomy). Depending on how “form fitting” my clothing may be, I will sometimes wear a wrap or a second pair of underwear to conceal and that does make it easier to forget the pouch is hanging there. With a colostomy however, since our stool is generally thick and pasty, don’t want the pouch to be too compressed or else the pressure of the output can make the wafer lift off of your skin—ouch and eww, smelly mess likely! So I find that I like to wear my pouch over my underwear, the waistband on my underwear (boy shorts from Maidenform) comes up to right under where the pouch hangs from wafer. Then I often wear a camisole or tank under tops and it is long enough to go over top of the pouch that is hanging outside of my underwear. That is enough to tuck it in safely under my clothing. Now if I am wearing a dress or skirt where I want some extra security/smooth lines, then I will put a second pair of my underwear over top of the pouch and make sure the waistband goes above the top of the pouch. That works very well and is not too much pressure that if stool is thicker it won’t force the wafer to lift off skin and get stool under the wafer.

Give it time, and by time I mean at least a year, before you throw in the towel. It is a complete lifestyle change so it needs the proper amount of adjustment period. Also, many people with colostomies irrigate (which is basically a daily enema that empties bowel for 24-48 hours) and then the pouch is relatively empty and you can control the timing of bowel movements. I have not gone this route because I respect that it is a dedicated process and I am not interested (yet anyway) in that daily commitment and process, but you may like that option, something to think about as you go forward. This forum is a God-send though, it’s not like ostomies are super common and what the medical profession tells you regarding living with one is limited because living with one vs reading about one are completely different experiences. The people on this forum are so kind and helpful and positive and always willing to help out with practical tips when possible. Stay with us and keep reaching out.

[Diane C]

Hi,

You've been given wonderful advice already. I also received a colostomy in 2002 for the same reason. (I plan to write a book about my long journey and wonder how many of us have pelvic floor disorder.... I tried SO many procedures over the years and want to inform others.) Pelvic floor disorder, incomplete evacuation, lack of synchronous relaxation of the puberactalis and anorectal sphincter muscles. I spent my life avoiding an ostomy but we can get used to just about anything. Agree that if you can irrigate, you may find living with an ostomy easier -- and altering your diet may help, too. I also am an irrigator -- check out the gator forum below.

You indicated that your ostomy is temporary. At the risk of suggesting more surgery, did your surgeon mention the Malone Appendicial (or Antegrade) Colon Enema procedure? That's the MACE procedure (it has many names). Basically, before I had my ostomy, a surgeon made a tube within my abdomen using my appendix (it can be made from other tissue if you no longer have an appendix). This tube goes from my caecum or start of my large intestine to my navel where there is tiny, almost invisible stoma in my navel. The MACE allows patients (or parents of patients as generally infants and children with spina bifida or other paralyzing disorders get this surgery) to irrigate water downward with gravity to flush out the colon. In my case, my anorectal muscles were too dysfunctional and this procedure did not work completely -- even with bioreedback and botox (which you also may have tried?). However, two previous gals were in communication with me and had this surgery which worked for them. This was years ago -- and the MACE is now performed via laparoscopy. One gets a MACE instead of an ostomy to irrigate the system to alleviate constipation, distension, etc.

In my case, I needed the ostomy since the MACE did not do the trick but still irrigate through the MACE. I insert a small catheter into my navel and pump water though the cather. The water does not reach my anorectal muscles since I have a colostomy but output now comes out of the stoma into an irrigation sleeve. It's how I irrigate and I highy doubt any reputable surgeon would give someone a MACE to irrigate an ostomy. I use it because I had the surgery before the colostomy.

I hope you get used to the ostomy and find it's not as burdensome as you initially thought. But you MIGHT want to consider reversing the surgery and trying the MACE but there are no guarantees it will work. I'm surprised it was not mentioned but some doctors are unaware of it or perhaps an exam of your muscles and nerves indicated that the MACE would not work effectively. It's NOT fool-proof and frankly, an ostomy is but you might ask your surgeon. It's difficult to explain to talk honestly with a knowledgeable surgeon about it.

Gosh, the MACE is now at Wikipedia. You can read more about it here before conferring with your surgeon. https://en.wikipedia.org/wiki/Malone_an ... ence_enema

I do wish you luck with your ostomy. The above from others is excellent info and this discussion board may help with your mental outlook. It helps mine very often.

Diane C

2000 MACE Procedure for Pelvic Floor Syndrome/Chronic Constipation
2002 Colostomy for the same

[Brimeek]

Diane C: I’m just seeing all these posts for the first time ever. My name is Bri:)

I’m curious if I could exchange medical stories with you and get some advice from you prior to me considering a colostomy for my pelvic floor dyssynergia...

Thank you for your openness. If able to chat further, I’d love to hear of your experiences.

You may contact me using the Contact link in the right column.

Bri Meek

MOD Edit: removed explicit email address to shield poster from spambots

[paula]

Hi there, I can relate to all that you said. I had a colostomy for 16 years, and the first year at least, was not easy at all, I too, couldn't even look at it, and my husband, God bless him, had to do a lot of the work for me. However, it does get easier. I had no choice as I had colo rectum cancer and had to have this done. After a couple of years, I was Ok with it, of course, it's always hard, but as everyone here have said, you will get more used to it. Unfortunately for me, I had some problems and my large intestine had to be removed about a year ago, and I now have an ileostomy, which I'm getting used to that still. Bottom line, foe you, things will get easier, hopefully you have some support which is very important. All the best to you.....................paula

[Diane C]

Bri,

I just saw your private msg. I'll try to get back to you tomorrow but pls send me more info about your condition. Do your colorectal muscles work? Have they been tested with a manometry and via other means? What have you already done to improve your situation? I found that biofeedback only helped me 50 percent. Statistics are usually better than that but "it depends on the patient." I also had the nerves tested twice. Done? More info please. You can post anything up here but if you're more comfortable sending me the details privately, please do.

Diane C