Though I have talked a lot about my different surgeries, I know it can be a bit confusing and difficult to understand and so I thought I would dedicate this post to explaining exactly what a jpouch is.
A j-pouch has a few different names which can cause a little confusion, it is also referred to as an ileal pouch-anal anastomosis (IPAA), an ileo-anal pouch, restorative proctocolectomy, s-pouch, w-pouch or an internal pouch and it is a bag formed from the small intestine that is attached to the anus. It was was pioneered by Sir Alan Parks at St. Mark’s Hospital in London in the early 1980s.
“It is a surgically constructed internal reservoir; usually situated near where the rectum would normally be. It is formed by folding loops of small intestine (the ileum) back on themselves and stitching or stapling them together. The internal walls are then removed thus forming a reservoir. The reservoir is then stitched or stapled into the perineum where the rectum was. The procedure retains or restores functionality of the anus with stools passed under voluntary control of the patient.” (via Wikipedia)
In simple terms, when the large intestine (colon) has been surgically removed, doctors create a pouch out of the small intestine that is attached back onto the anus. This pouch acts as a store for waste matter so that patients regain the ability to ‘hold it’ when they need to poo and therefore improves life quality.
Ileo-anal pouches are constructed for people who have had their large intestine surgically removed due to disease or injury, this could be from;
- Ulcerative colitis
- Crohn’s disease
- Familial adenomatous polyposis
- Colon cancer
- Toxic megacolon
It is entirely internal and not the same as an ostomy in any way. From the outside you can not see anything and people with a jpouch go to the toilet and poo in the same way as anyone else.
Immediately after surgery, the patient tends to pass liquid stool with frequent urgency, up to 20 bowel movements per day, but this eventually decreases with time. Because the jpouch is a considerably smaller space than the colon, patients tend to have more frequent bowel motions; typically 6-8 times a day.
Also because the small intestine does not absorb as much water as the colon, poo is much more fluid than usual and some patients need to take daily medication to slow the process and thicken the stool. Because of the loose stools, more water is lost and patients can get dehydrated easily and can also suffer salt deficiency. For this reason, some are encouraged to add extra salt to meals or electrolyte mix drinks.
Because the ileum does not absorb as much of the gastric acid produced by the stomach as the colon did, poo also tends to burn the anal region slightly meaning many patients need to use wipes and barrier creams.
One complication of a jpouch is Pouchitis which is an inflammation of the ileo-anal pouch. The symptoms are normally somewhat similar but less acute than those of colitis, and include (sometimes bloody) diarrhea, urgency or difficulty in passing stools, and, in few cases, pain. The standard treatment for pouchitis is a course of antibiotics. Other complications that can occur are pouch fistula, and pouch stricture. Early complications can be leaks and the pouch coming apart which will require more surgery.
I can’t find any official success stats but I can say that my surgeon told me this.
40% will be perfect/excellent
40% will be acceptable with some issues
10% will be poor but the patient will put up with the problems as they are stoma averse
10% will need to be defunctioned
So you can see that even though this surgery is called a ‘reversal’ (meaning it is reversing the surgery of having a stoma/ostomy), it is not that simple and people with a jpouch have their lives changed forever. You read an awful lot of negative stories about jpouches, but I always think that it is because all the people who are having a good experience aren’t on the internet telling you about it, they are off living their lives!
For me it has been 18 months since my surgery and in the early days, I did struggle and wonder if I had done the right thing. As time goes on, life is getting a lot better. I go to the toilet around 8 times a day but usually without urgency or pain. My jpouch is working well and I am happy with it.
It hasn’t rid me of all the extra intestinal manifestations of having IBD, I still struggle with fatigue, bad joints and sore eyes. I still take medication every single day and I have had to accept that i have a chronic illness that will never go away, an auto immune disease that affects my whole body.
I hope this post has answered some of your questions, the more we all speak out, the better it is for everyone. I aim to educate, raise awareness and as always to #StopPooBeingTaboo
Love Sam xx