Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Thank you Kanaaz. This is my 21st year as a family caregiver.

Welcome to the  club!mlmcg

I love your phrase, "Together, we’re a caregiving team." Kudos!

I learned some techniques from stoma nurses and others from my husband, a retired Mayo physician. Together, we're a caregiving team. One problem I haven't quite solved is getting enough sleep.

Hi @harriethodgson1

I noticed your insightful participation in the Caregivers group, and want to sincerely thank you for sharing about your husband. Having an ostomy can change one's own physical perceptions, and it is encouraging to know that you are supporting him in his care. May I ask how your husband coped with this lifestyle change? Did you learn the necessary techniques while in the hospital?

In 2013 my husband's aorta dissected and he had three emergency operations. During the third one he suffered a spinal cord injury that paralyzed his legs, making ordinary elimination impossible. My husband self-caths (I help him) and has an ostomy. To help him with his ostomy I had to learn sterile technique, about wafers and bags and brava strips. We have a routine now, and this makes daily life easier.

I lost quite a bit of weight after my surgery, but I was in rehab and had other issues. The food was not the best and then I was sent to another rehab. This new place worked with me to see what I was able to eat and even went to the grocery store to get food for me, so I could gain weight. When I left there I had gained back most of the weight I had lost at the other place. I still do not weigh what I once did, but my clothes fit and no one says I look thin, just I look healthy, so I must be doing something right. The average person, if there is such thing, depending on the surgery, how sick you were before the surgery, or how long it takes to find out what foods the body can tolerate, it may be months or years to gain your weight back, if you ever do or want to. I feel that if I am healthy and the doctor is happy, then I am happy.Good luck, mlmcg

I see ostomy nurse for appt on Wednesday. And I will get this straight. How much does the average person lose with a new colostomy? Madge

Ditto!  Medicare and Health Net allow me to receive

a 3 month supply of bags, pouches, rings, lubricants, cleaning supplies, and anything else I want to try as long as my wound care/ostomy nurse and PCP Doctor approve.

4 bags! That means you get to clean your stoma only once a week, and never leave your house or have visitors 4 days a week. Hopefully, you don't have diarrhea. There is nothing worst than having a doctor or nurse who have no idea what to do. I receive a three month supply of bags, rings, lubricants, cleaning supplies, and just about anything else I, or my wound/ostomy nurse, want to try. It does not matter where you live or the insurance you have, you should have the supplies you need and/or want to try. I was assigned a "new" wound/ostomy nurse and I feel I knew more than he did, so I asked my PCP to refer me to another hospital. I now have an experienced wound/ostomy nurse and if she has to put in a request to get me more supplies she does. Keep detailed notes on what you ate, how many times you emptied your bag, etc. You will have enough information so you should get more supplies. Unfortunately you may have to fight for every single bag you can get. The bags I use come 10 to a box.Good luck, mlmcg