I am having major shoulder surgery in a few weeks. I have had a continent ostomy for over 30 years, and besides the obvious stress about the surgery, pain, not being able to move or work, I am very concerned about handling my ostomy. It requires two hands to intubate and irrigate, and the doctor does not want me moving anything other than my wrist. I have yet to figure out how I am going to manage that! No one in the medical community where I live has any experience with my type of ostomy, so I am feeling panicky about the situation. I have to have the surgery - it is a major injury and getting riskier the longer I wait. I was also told that I will have even more pain if I have to move the arm for any reason, and it will be possible to prevent healing, resulting in the need to re-operate. So I am worried about many things - managing the ostomy, managing the pain, and being under anesthesia and having a problem that no one is prepared to handle. Any help out there?!
I've always had a fiercely independent nature, and I've wondered how I'd change my ostomy gear if I no longer had use of both hands.
I'm assuming you've already considered the people in your life who you could train to help you.
During the 2010 Winter Paralympics in Vancouver, I was a videographer for a group of wheelchair-bound performers. When we needed some performance adaptations for the wheelchairs, we were directed to a group of engineers at a local university. For many years, these engineers had been donating their skills to find practical solutions for day-to-day dilemmas like yours. The engineers were affiliated with a machine shop that would fabricate their designs.
I'd suggest you contact the engineering department of a local university to see if such a service exists in your area. I don't know the role each of your hands plays when you intubate and irrigate, but perhaps it's possible to design a stand with a clamp that could hold the tube at the correct position while you move your body towards it.
Engineers can accomplish amazing things!
Please keep us posted as to what happens. Thanks.
MeetAnOstoMate is a remarkable community of 41,460 members.
“I found real people, real humor, and answers I couldn’t get anywhere else.”
“The support here impressed my husband’s medical team - they plan to recommend it.”
“This community saved me when I thought I was a freak. Now I’m thriving.”
“Thank god for this site - I finally knew what to ask my surgeon.”
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
I'd love to know if you get answers to this, because I have the same problem and have been avoiding the surgery because of it. I have an ileostomy, and never know when the bag needs to be emptied, therefore, I certainly can't have home health care 24 hours a day, nor do I know anyone who could help me with this. It's a definite problem. I have a friend who had the surgery, accidentally lurched forward to reach out for something that dropped, ending up ruining the surgery, had it again, 2nd time failed, and she just had something called a reverse shoulder procedure. (??) However, she does not have an ostomy! But I do know that caution is very important. My shoulder is bothering me more and more lately, and I'm stumped as to how to solve this one.
Joyce
Learn how convex skin barriers work and what benefits they offer.
Are you having this surgery in a hospital where there is no ostomy nurse??? Good heavens, there should be standard info - I know all our nurses have to have training -- including the visiting nurses -- is there a person (friend/family) that can help -- my daughter was there for me at home, but in the hospital, the medical team checked the bag hourly and they dealt with it 100%. I cannot imagine that the medical team, once aware, won't be right onto this for you. Good luck and please let us know ----
PB
How to Manage Emotions with LeeAnne Hayden | Hollister
It will be one year in March since I had my surgery and I am having problems with a shoulder and I worry how the ileostomy will be taken care of. It's not something that only needs attention once a day or that you can predict when it will need emptying ahead of time. My son had shoulder surgery and he had to keep his shoulder very still and not use it at all for almost 6 weeks, so what would a person do? I don't know of anyone that would want to take care of the bag. I usually have to change bags every 3 days and I rinse it out every time I empty it. It depends on how much I eat to how many times I empty. Then I also have bad problems with my back too. A specialist is trying to see how he can help me without surgery, which I refuse to have. I am hopeful he can do something! I will be interested to see if something can be done for a person with the bag when you need the shoulder surgery. I will hope and pray for you. Please keep us informed. Thanks!