My J Pouch Story

My J Pouch Story


Having a J Pouch can be the result of a bowel condition such as Colitis, Cancer or in my case Hirschsprungs Disease. If you know what a J Pouch is, it will probably be from either having one yourself or knowing someone that does. The surgery (restorative proctocolectomy), involves the removal of the entire colon and rectum. A J Pouch (ileo-anal pouch) is created from small intestine which is folded up along side itself giving it the ‘J’ shape. This creates a reservoir at the base of the ‘J’ for stool to collect. The bottom of it is attached to the edge of the anus, allowing the patient to release stoolThis may need multiple surgeries, one to form the J Pouch and then a temporary ileostomy formed to allow healing time.

Following this, the ileostomy can be reversed for the patient to start using their new plumbing system! Your surgeon will discuss the right time frame and approach for you. A J Pouch does not store as much waste as the rectum, meaning patients need the toilet more often. For most patients the surgery improves quality of life, but depending on your state of healththis may not always be the case.

 

Through investigation I found a highly insightful report by the Association of Coloproctology of Great Britain and Ireland from 2017. It is open to public view and gives a thorough examination of the surgical options and outcomes for patients. The Association compiled a registry in 2005 to record the outcomes and by 2017, 5,000 patients under the care of 150 surgeons were recorded, including procedures as far back as 40 years ago. With my own condition having little known research in this country I found this simply remarkable!

 

Three quarters of patients were found to have a temporary ileostomy at the time of surgery, which is what I had myself as a baby from being born with Hirschsprungs Disease. As a result of having a reservoir to collect stool of a much smaller size, it required far more trips to the toilet and loperamide became my best friend. With toileting being such a taboo subject outside of my family home, it was difficult to navigate daily tasks, having the fear of no access to facilities and not wanting to eat or drink to encourage that. As I grew older I learnt to adapt to situations, but as a small child is wasn’t the best experience.

 

 

I kept my pouch until the age of 30 when I needed another ileostomy due to my Hirschsprungs causing chronic pain. Despite this I had gained my own tool kit to cope with navigating daily life with a J Pouch:

1. A radar key for access to disabled toilets (ensure you qualify first) and planning trips to ensure there are facilities to not ruin your day with such anxiety.

2. Change of clothes – accidents happen to EVERYONE! Being prepared lessens the worry.

3. Keep hydrated – ensure you are drinking a sufficient amount as more toilet trips means more loss of salts and water, especially with no colon whose job it is to absorb most of our water intake.

4. Toilet pass – for children this is essential in giving more independence and dignity to avoid having to formally ask in an educational setting. This eased the anxiety of leaving the classroom.

5. A box step –Sitting on the toilet with your feet on the step is putting less strain on the muscles where you have had surgery and is found to be a more natural position that humans should take when toileting.

6. Barrier cream – your bottom will be sore as it gets used to passing stool so stay on top of your barrier cream for combating this. Skin can change very quickly. Use according to manufactures instructions and do visual checks regularly.

7. Be kind to yourself – it is major bowel surgery and your body has a new job to get used to. Ensure you have a good support network around you and give it time. It will soon be your new normal.
Ensure you bring a notebook or family/friends to help remember what is discussed in hospital appointments. It can be a lot to take in and you may want to do your own research to prepare for the procedure behand hand. During those appointments don’t be afraid to ask the smallest questions as well as the big ones. It is important you understand what will happen to help you be mentally prepared to fight it head on and recover well afterwards. As always my inbox is open on Instagram via @gutsy.mum.

 

Take care, Rach x

 


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