I have had a permanent ileostomy for 45 years with no problems at all until recently. Over the past 6 months the opening has gradually moved from dead center of a perfectly formed stoma to being at the top of the stoma and almost to the edge of the abdomen. What will happen if it goes below the abdomen? Should I look into having a revision?
Oldfogie
Sep 24, 2017 9:03 pm
Bill
Sep 25, 2017 5:22 am
Hello Oldfogie.
Thank you for posting about this movement of the hole in the stoma, which you describe as a 'problem'.
I was wondering if it causes you any other problems apart from worrying about it.
My stoma regularly moves about, changes shape, inverts and expands but luckily, these changes have not posed any significant problems with regard to its functionality. My biggest problem was when the muscles for peristalsis tighened so tight it blocked the hole altogether and nothing passed through. I fixed this by using a dilator and training the muscles to relax and let stuff through. With that problem solved, I saw no reason to opt for further surgery.
I know from first-hand experience that these things can be very worrying but my take on it is that if the stoma is still functioning and not causing excessive problems, then I would choose to leave things alone rather than opt for surgery.
I hope this helps
Best wishes
Bill
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Immarsh
Hi All, If you have an " old" or recent ostomy, this is the place for you. I think I've been a member for more than 15 years, but I have had my surgery, since I was a kid of 15 ( do the math-that's more than 60 years ago). As a teen, with a new ostomy ( for Ulcerative colitis) my parents dragged me off to my first ostomy association meeting. I wasn't happy, but in the long run, it's the best thing that happened to me. I met others, older, and teens like me, adjusting to the changes. A group of us started a Young adult group, and helped each other, and even visited kids who were new to the world of ostomies. But soon I married, and moved out of state, and although made some connections with other NJ ostomates, I became pretty much isolated. Until I discovered MaO. By then, I was having a myriad of other medical issues, and my aging stoma " wasn't doing well". I received a lot of help and support from members! I was pleased that I was also back to supporting others. I met a gal on line (from Papua New Guinea) who was trying to help ostomates in her country. There is a scarcity of supplies in some other countries, and unlike the US, insurance to pay for supplies isn't available. When my son followed his "love" twenty years ago, and moved to Australia I took advantage of an opportunity to help other ostomates. On one of my first visits to Oz, I brought a suitcase full of Ostomy supplies, handed them off to an Ostomy assoc. On the Gold Coast, who then had a friend take them to PNG. They were grateful for the help, and Janet and I still write.. This is the place to be, if you need help, and it also gives you the opportunity to provide help and support to others. Feel free to write, if you'd like to chat, about things ostomy, or life in general. Best REgards to all.. Marsha
Immarsh
Sep 25, 2017 11:40 pm
Hi, I'm Marsha, and I've had my ileostomy / stoma for more than 50 years. It started out round and cymetrical, but time, and two pregnancies, plus weight gain and losses, have caused it to shrink, in diameter, and has pulled back into my belly considerably. I saw a gastro surgeon a number of years ago, and he said that as long as it works....don't consider surgery. That's pretty much what Bill wrote...... and that's the consensus I've gotten from other doctors as well. These days, I do have more leaks than I use to have, but still plan to avoid surgery as long as possible. I'm 69.
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Oldfogie
Sep 26, 2017 12:34 pm
Thanks to Bill and Marsha. That relieves my mind a lot. I was just worried about what would happen if it pulled below the abdomen. If I had really thought about it I would have known it would be ok. Just different. I am a nurse and have worked in nursing homes, home health, and hospice and I was always given the ostomates to care for I have seen some really weird looking stomas. I guess since it was my stoma I lost objectivity.