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Spouse of new ostom(y)(ies) user looking for emotional support group.
My wife recently had total pelvic exenteration (TPE) surgery to eliminate a recurrence of vaginal cancer. She is recovering well both in body and spirit. By contrast, I'm still looking to find spouses or other caregivers who can help guide me through the emotional and physical weight of these changes in my life, and hers. It's been a lot to adapt to, particularly because the time between diagnosis and surgery was so short (2 weeks), and because our hospital gave all its attention to my wife's survival and recovery, and short shrift to my own emotional needs.
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I’m sorry to hear about your Wife, I myself had to get an Ileostomy and it is a very difficult at times for me. I’m here to find emotional support as well. I will pray for you and your wife ❤️🙏
What you describe is exactly what happened to me 6 years ago but as the patient. Maybe I can be of help and support? Does your wife have an ileostomy(bladder) or colostomy(intestine)? I had an ileostomy, that is the area
I can share with you. Tell us what you are looking for to help both of you through this life changing surgery.
Meanwhile, take a look at this link: https://www.ostomy.org/support-group-finder/
Also be aware that YouTube is a tremendous source of videos showing detailed steps on the bag change process.
The surgery offers a life extension, it requires some tweaking but after learning, you should both go on living it as the Gift that it is.
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1 Reaction@cromme50 I just want to make sure that you don't mean an ileal conduit rather than ileostomy? An ileal conduit is where a piece of ileum is used to divert urine, and is usually called a urostomy.
An ileostomy is when the colon is removed completely, and the end of the ileum forms an stoma, the output is stool, typically liquid to paste consistwncy. A colostomy is when part of the colon is removed, and the output is also stool, but often thicker than an ileostomy.
If I understand correctly, you had a TPE, with an ileal conduit because of bladder removal, and a colostomy because of rectum removal?
@soxfan55 I'm so glad your wife is adjusting, and welcome to Connect. There is a caregivers group here that you might find helpful
https://connect.mayoclinic.org/group/caregivers/
There are some information on life with an ostomy here onsite:
https://connect.mayoclinic.org/blog/ostomy/
@susanf8 You are absolutely right, Susan! Thank you for catching my mistake.
I had a urostomy, bladder removed when I had a pelvic exenteration with bladder
removal but no rectum removal. Therefore, I have an ostomy. Again, thank you for letting me know I used the wrong word!
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1 Reaction@grandj Thank you very much. I look forward to future exchanges.
@susanf8 Thank you, Susan. I will check these resources out today. (I think I may already have joined the caregivers support group, but I will confirm.)
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1 Reaction@cromme50 My wife now has both an urostomy and a colostomy. She is beginning to explore the videos on You Tube and other social media. And yes, we so look forward to once more celebrating and indulging in the joys of life. In little, brief ways, we already are.
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4 ReactionsThere is also a private urostomy group on facebook.
Thank you.