I have had my ileostomy for 40 years. During the past 2 years my stoma has shrunken to 1/4 inch on good days and is usually flush to my skin. I also have a hernia around it, and a very tight opening through the stoma. I do suffer from cramps but no real blockages. My surgeon has suggested a stoma revision and hopes he will be able to mobilize enough small bowel from the scar tissue to make a new longer stoma. If not he will need to relocate to the other side which terrifies me. My quality of life has suffered since the shrinkage and I have given up sports and am on antidepressants but I am terrified of more surgery-especially elective surgery. I do get 3 to 4 days wear time now but my activity level is low as I am so afraid of more retraction. Are there others who have had revisions that I can contact, and do you think it is possible to get remove enough scar tissue to leave my stoma where it is and just lengthen it. Also is it extremely painful?
Forty years ago you were very ill, and required major surgery in order to create your ileostomy. That was a very frightening time for you, and so, it is entirely understandable that you are terrified at the thought of undergoing another surgery at this point in your life. Having said this, it sounds as though your quality of life has deteriorated over the past 2 years with no indication that this life situation will improve without some form of intervention as suggested by your surgeon.
Today there are many more operative options available than 40 years ago, some of which are low-risk, minimally invasive procedures. It is very important at this time that you schedule a meeting with your surgeon to discuss:
- your current health situation
- potential options
- what is involved with each of the options
- recovery time
- potential complications
Preoperative planning is critical to your peace of mind, full preparation, and recovery management. It is valuable to both you and your surgeon to thoroughly discuss the options available to you, what is involved with the options, and your concerns.
In addition, a consultation with an Enterostomal Therapy Nurse, (E.T. Nurse), can help you immensely, with regard to, practical information and emotional support. Most E.T. Nurses have experience with ostomates who have undergone various procedures such as stoma revision and/or relocation, and will be a wealth of knowledge for your understandings. Before you book your consultation ensure the E.T. Nurse is aware that you want to discuss the surgery options your physician is offering, your concerns, and your desire to consult with an E.T. professional who has experience with these procedures.
(E.T.) Nurses, are the “go to” professionals for ostomates. An E.T. Nurse is a registered nurse with advanced specialized knowledge and clinical skills in wound, ostomy, and continence care. E.T. Nurses work closely with ostomates and have the experience to assist them. To find an E.T. Nurse in or near your location; go to the Ostomycanada.ca website. You will find the menu at the top bar, click on “Support”, there you will then see a drop down menu, find and click on “Find an E.T. Nurse”, follow the instructions on that page.
There are Ostomy Support Groups in many communities, where you can discuss your situation with other ostomates, and this can be very helpful. To find a Support group near your location; go to the Ostomycanada.ca website. You will find the menu at the top bar, click on “Support”, there you will then see a drop down menu, find and click on, “Find your Local Support Group”, follow the instructions on that page.
There are of course various online ostomy related forums you could visit through google, and if you are on social media such as Facebook, you will find ostomy related groups.
Your quality of life is being severely affected at this time in your life. Your activity levels have gone down greatly during the past 2 years. There are options and solutions available for you. With in-depth consultation with your surgeon, Enterostomal Therapy Nurse expertise, and the experiences of Ostomy Support Group members, you will be physically, intellectually, and emotionally, prepared to make well informed decisions for re-establishing the quality of life you deserve.
Our friends over at Nurses Specialized In Wound, Ostomy And Continence Canada [NSWOCC] (formerly called The Canadian Association for Enterostomal Therapy (CAET)) have renamed their handy look-up page on their website. It was formerly called “Find An ET Nurse” and is now called “Find a NSWOC“. Click on the image to the left or link here to go to their site.