From A Bigger Life
Who can get a J Pouch?
If you have been diagnosed with Ulcerative Colitis or Familial Polyposis and you have the option of your stoma to be reversed and your pouch formed you may be overwhelmed with the amount of information that you will receive about the procedure. It is important that you have 1 or 2 discussions with your Stoma Care Nurse or Colorectal Nurse to enable you to make up your mind that this is a good option for you.
What is a J Pouch?
After you have had your stoma forming surgery you will meet with your surgeon. They will discuss with you whether you will have your rectum removed or if you will have another procedure to form a pouch inside. What this mean is the surgeon will take a length of your small bowel and open it up, joining all the folds of bowel into a pouch. They then pull this down onto your rectum and stitch it. It doesn’t mean that you will have normal bowel functions after the surgery but it does mean that you would live without an ileostomy pouch. The output that would come from your internal pouch is still going to be a toothpaste consistency. It’s important that you are aware that it will never be a more solid bowel motion.
It’s important that you understand how extensive this surgery is. There is a real learning curve after the surgery and there is no guarantee that you will have a similar quality of life after the complex procedure.
The patient group is divided into thirds:
1.The first third of people would have as good a quality of life as they would have with their ileostomy, that means you would be emptying your internal pouch the same number of times as you would normally have emptied your ileostomy pouch. You would have no increase in levels of infection or inflammation in your internal pouch and you would have no night time leakage. All in all a good outcome for this group of people.
2. The second third of people would have a little bit of night time leakage whenever your bowel relaxes. This group would be at a higher risk of developing some inflammation in the pouch, which is a little bit like what you would have experienced with Ulcerative Colitis, high temperatures, feeling unwell and going to the toilet alot more frequently. They would also be emptying their pouch more often than what they would have done with their ileostomy. For many people this is fine and they are willing to deal with a slightly poorer quality of life.
3. The final third of people, their pouch has given them a much poorer quality of life. They would suffer from pouchitis, which is very similar to your Ulcerative Colitis, you temperature would rise periodically, you have have an increased amount of time going to the toilet, you would be on antibiotics periodically and be feeling unwell. This group also has a greater risk of having leakage and you wouldn’t have good control of the output coming out.
It’s really important that you get counselled in all this information before you make your decision about proceeding on with pouch surgery. There is no guarantee where you would fall within the three groups. Some people have been living with an internal pouch for a good 15 – 20 years and are doing fantastically, of course if you speak to one of these people you are going to be very encouraged buts it’s important that you have all the facts before you make your decision.