Shoulder Surgery and Ostomy - Need Help Managing Both!

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?!

Hi littlered1,

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.

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

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 ----

I know it's easier said than done, but maybe you need to go well outside your local medical community, if only for a consultation. Never settle for convenience in obtaining critical health care, especially when you have options. Good luck!
    PB

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I have had many surgeries and procedures since having my ileostomy 3 years ago (one of which resulted in a frozen shoulder), so I understand your concerns. I do not irrigate my ostomy, so I don't know much about that, but I also lost my esophagus due to Crohn's disease and had what is called a spit fistula that no one was familiar with how to care for. So here's my advice... Plan ahead. Make sure you pack and carry with you everything you need to care for your ostomy when you go to the hospital and alert everyone to it. If you can, teach a close friend or family member how to do it now. Also, I would make contact with a home health agency and alert them of your anticipated needs. You should be eligible for home health services following your surgery if you ask for it, and most home health agencies have at least one ostomy/wound care nurse on staff. Explain that the care of your ostomy is a bit different and try to arrange for the nurse to see it before the surgery. I have managed to talk many people through the process of emptying my pouch and changing it when I couldn't do it for myself, so I'm sure you can too. Most hospitals have special ostomy nursing departments, so I would seek them out now in advance of your surgery and let them brainstorm these issues with you. Good luck!

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!