An abdominal stoma is a surgical opening in the abdomen to allow faecal matter to exit the body following injury, blockage, or the removal of all, or part, of the large bowel. An abdominal stoma is also required to allow urine to exit the body in the case of the removal of the bladder.
There are three types of abdominal stomas, Colostomy, Ileostomy and Urostomy. An ostomy pouching system, colloquially called a “bag”, is used to collect the faecal matter and urine emanating from the body.
A colostomy is when the large bowel is surgically cut and the end coming from the stomach is brought through the wall of the abdomen and attached to the skin. This is done to allow the faecal matter to exit the body. This can be a temporary operation to rest the bowel following injury or disease, or for the removal of part of the bowel because of conditions like colon cancer, blocked bowel or medical conditions such as diverticulitis. It can also be permanent if a major part of the bowel has to be removed or if there is damage to, or close to, the rectum. The stoma can be flush with the skin or can protrude approximately 2-3 Cms and is normally positioned on the left side of the abdomen.
There are also three types of colostomy procedures; an End Colostomy, a Loop Colostomy, and a Double Barrel Colostomy.
An End Colostomy is when the functioning end of the bowel is brought out through the abdomen and a stoma created. In this scenario the remaining part of the bowel may be removed leaving the patient with a permanent stoma.
A Loop Colostomy is created by looping the bowel and bringing it out through the abdomen. It is held there temporarily in position by plastic pins and the bowel is then cut to allow the faecal matter to exit the body. This procedure is normally carried out to allow the bowel to rest or to heal from injury or surgery. It is a temporary procedure to divert the faecal matter and is reversed after a period of time.
A Double Barrel Colostomy is where the bowel is cut and both ends are brought out through the abdomen creating two stomas. The functioning end of the bowel emits the faecal matter while the other end emits small amounts of mucus. This is almost always a temporary procedure to allow healing and is reversed after a period of time.
An Ileostomy is a surgical procedure where the end of the small bowel is brought out through the abdomen and a stoma is created and attached to the skin. An Ileostomy is normally located on the right side of the abdomen. This procedure is necessary when the large bowel has been completely removed due to medical conditions such as Ulcerative Colitis, Crohn’s Dieses or Cancer. An Ileostomy can be temporary, but when the large bowel has been removed it is permanent. In this situation the rectum is often also removed.
Urostomy surgery is a procedure which diverts the urine from the kidneys and ureters into a stoma located on the abdomen. The surgeon will create the stoma using a piece of the small intestine from which he will make a tube known as an ileal conduit. The two ureters will be connected to this tube which will be brought out and attached to the abdomen. The urine will pass through the stoma, completely bypassing the bladder. Urostomy surgery is necessary when the bladder is diseased or defective because of cancer, injury or possibly a birth defect. The bladder may be removed and a Urostomy is almost always permanent.
Being told you have to have bowel surgery, and the realisation that you will have to have a “bag” of shhh (you know what) hanging off your abdomen, possibly for the rest of your life, is a devastating experience.
You think of all the aspects of your life that will be affected by having to wear a bag; how will you be able to hide it, how will the bag stay on, what happens if it does not stay on, will there be a smell, will everybody know you have a bag, will you be able to wear normal clothes, what about intimate relations, etc., etc., etc.. And, this is even before coming to terms with the physical experience of having to go through major surgery.
Everybody’s experience of this is different, so the only experience I can relate is my own!
Some brief background; I had Ulcerative Colitis for over 20 years and I was both unlucky and also very lucky. When I was diagnosed first I went through all of the normal procedures and was put on the usual medication. It was quickly discovered I was allergic to the medication; it destroyed my immune system and I ended up very ill in hospital. In fact, it was discovered I was allergic to all of the medications used to control Ulcerative Colitis. However, I was also lucky because my Colitis was not severe, I rarely had a cramp, and it would only flare up every couple of years, usually because I found myself in a stressful situation at the time. So, life was good; until my new doctor convinced me see a new consultant to check out new medications on the market. As part of the assessment I had a colonoscopy and some ‘polyps’ were discovered and unfortunately one of these was deemed to be ‘potentially cancerous’. I was informed I had a 60% chance of developing cancer within 3 to 5 years! So, the rollercoaster started!
The consultant put me in touch with a surgeon who informed me because of the location of the polyp it was not possible to simply remove the “offending” part of the bowel. The surgeon said to me “have all of the bowel removed and you won’t have to worry about the potential cancer or the colitis”. If I wasn’t so stunned, I don’t know what I would have done!
The surgery wasn’t urgent so I took six months to sort my head out. To this day I don’t know if that was a good thing or not; it gave me a lot of time to ‘think’! Anyway, following several consultations with a Cognitive Behaviour Therapist (CBT), speaking with other people who had gone through the same situation, and obviously with my own family, I made a ‘date’ with the surgeon!
Thankfully, although difficult to deal with at the time, the perception of having to live with a “bag” was worse than the reality. I remember reading somewhere that some people will see things as a problem and others will see them as a challenge, and a fantastic piece of advice I was given before my surgery, by another ostomates, was to ‘accept’ the situation I found myself in. This helped me to focus on my life ahead and not become a ‘victim’.
So, that is what I did, and I spent the next two years developing STOMAPROTECTOR.
The initial motivation for STOMAPROTECTOR was based a bit on vanity; I work in the fashion industry so clothes were very important to me. I simply wanted a device that would allow me to wear my normal clothes when I returned to work, so that I looked and felt “normal”. The idea of wearing high-waisted, baggy trousers, or wearing old fashioned braces (as was suggested to me) or wearing elasticised trousers, would mean my life had visibly changed as well. Having to deal with a bag of s..t hanging off me was bad enough, but having also to change my life style was just too much to deal with! I was not prepared to stop wearing smart cut suits, jeans, slim fitting shirts, etc.
So, STOMAPROTECTOR was created; and as well as achieving its intended purpose the lengthy design process threw up several unexpected advantages. There were many of these (as you will have seen on the website) but the best of them was; after wearing the device for a period of time during the day I noticed the bag was really stuck to my skin. The constant pressure on the adhesive flange had created a much better seal onto my abdomen. Prior to wearing STOMAPROTECTOR, because of the constant fear of leaks, I was changing my bag nearly every day to ensure it had a good seal. I now change my bag only every 5/6 days. The confidence it has given me is fantastic, while commuting to work, socialising with friends, playing golf or any other leisure activity, I don’t worry about leaks any more. I have not had a single leak since I started wearing it regularly.
I stated earlier that I was both unlucky and lucky, but overall I feel I was lucky. This is not the case for a lot of people who find themselves in this situation. There is a lot of help out there for people who find themselves in this position. The first point-of-call should be the three support associations for the three conditions. These are The Colostomy Association: www.colostomyassocation.org.uk , The Ileostomy Association: www.iasupport.org and The Urostomy Association: www.urostomyassocation.org.uk
There are also other excellent websites, for example; www.ostomy.org, which is the United Ostomy Associations of America (UOAA), www.living-with-a-stoma.co.uk which is a good site for accessories, www.fittleworth.net which has good clear information about living with a stoma. Obviously the Health Services websites in each country also have a lot of practical information.
There is no shortage of information on the net, but please be careful and consult with your Doctor and Stoma/Specialist Nurse before making any major decisions.
I hope this information has been helpful and good luck with living with your stoma.
Brendan Magee.