It sounds like your mom has had a really hard time. I don’t have a loop ostomy, but I did have a parastomal hernia, without the prolapse. I did continue to wear a hernia belt, and I did continue walking for exercise. However, I don’t feel that I could advise you; your mom’s situation is very nuanced. While we on this site can talk about our own experiences, we also recognize that our experiences are not the same as medical advice. Because your mom’s difficulties are so unique, I think it is best for her to consult her medical team for help. 

Please let us know how her medical team decides to proceed; that information could be very helpful to someone else here. I know how frustrating it is to not have answers, and the anguish of watching someone you love suffer and not be able to help is awful. In many ways, the role of the caregiver is just as difficult as the patient’s and often overlooked. Please keep checking in with us - we may or may not be able to give you concrete answers, but we will always listen to the frustration that you understandably don’t want to burden your mom with. I wish you and your mom all the best, and I have faith that the medical team will be able to alleviate her suffering, even if it doesn’t happen as quickly as you both would like.

Laurie

We had to bring mom back to the hospital on Friday as the prolapsed stoma was bleeding too much. A new surgeon saw my mom on Saturday and was able to push the prolapse back in. He sent mom home as he said you need rest and you can’t rest in the hospital. He said that we should not wear the belt with the hole in it as the prolapse will happen again faster through a belt with a hole in it. He suggested that we use a belt with no hole in it that would provide consistent supports across the whole stoma area. We already had a CUI Unisex Anti Roll Mesh Ostomy Hernia Support belt and we applied it immediately when we got home. We usually go through myostomy website and they have a lot of products and are very helpful. Having a hernia behind it can push it out through the hole. He said that mom should always apply gentle pressure to her stoma when she is sneezing or coughing or even having a hardy laugh. They won’t do surgery at this time because of mom’s cancer. But we are speaking with her Oncologist this week to discuss treatments that need to change. This site has been a wealth of information and inspiration for our family, knowing that we are not alone helps us with our journey. 

@nbnorth so, that trip to the hospital was helpful - the new doctor was able to push the prolapse back in, and advised that a binder hernia belt would be a better choice right now. The doctor was certainly right about home being the best place to get rest - being in the hospital is so stressful, and it’s impossible to get any sleep there. What is the plan to treat your mom’s cancer? Is this a new diagnosis or a recurrence? Waiting to hear the plan is the most stressful time; at least when there’s a plan you feel like you’re moving forward rather than stuck in limbo. My colostomy is the result of cancer. I remember how surreal everything felt. Your mom is lucky to have such a good advocate as you! Is it possible that we know your mom here already?

Laurie

Nbnorth ... I appologize for not being able to respond, (vision issues), but you have good advice from (Laurie), Tigerlily, I can't help but wonder how your Mom is doing & how you are doing too.  There IS a lot of stress with cancer but add a misbehaving Ostomy to it... well, very  naughty stoma!! 

I truly hope "things" settled down for you all but ofcourse esp. for your Mom who sounds like a real trooper! Hang in there! No questions here are a dumb questions & if we have no experience with your type of question, we are honest about that too. I'm sorry, I have no experience with what you are dealing with, other then life care for a family member with prostate cancer & end of life support & oh, how I wish I had this group of people here at that time!  My own ileostomy was so knew at that time too.  

Please, if you have time, don't be a stranger, I know I am & would venture to say we are interested to know how things are going for your Mom & you all. Your Mom is extremely blessed to have you on her Team!! 

Posted by: @nbnorth

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He said that we should not wear the belt with the hole in it as the prolapse will happen again faster through a belt with a hole in it.

I was going to say that even though I don't have a need for a hernia belt, when I wear one, it causes me to prolapse, even though I wouldn't prolapse under normal circumstances. It adds a lot of extra pressure on the stoma, so caution is advised.

I haven't used one without the hole, but as @tigerlily has already said, your mom's situation is unique and would require special attention to properly treat/manage.