Living with a parastomal hernia can be quite challenging, especially when it comes to finding or creating an effective hernia belt. The struggle often involves dealing with discomfort and the lack of suitable commercial options. Here's a look at one person's journey and some helpful insights they discovered along the way:

- The individual tried various commercial hernia belts, but they all had issues like curling, creasing, irritating the skin, and failing to provide proper support. This led them to design and make a custom belt with the help of a stoma nurse who provided suitable materials. Although the homemade belt isn't visually appealing, it is practical.

- They faced difficulties with irrigation due to a blockage, likely a muscle behind the stoma. To address this, they used a modified pressure-spray container with about 3.5 liters of water, which provided better results than a Braun Medical electronic irrigator that lacked sufficient volume and force.

- Their irrigation routine is performed at night. After the main evacuation, there is a delayed small liquid release about an hour later, which a sleeve can manage.

- The individual believes that hernia belts should be custom-built, much like bespoke wheelchair adaptations. They are also looking for ready-made parts to improve a leak-prevention idea for irrigation.

- Early attempts at creating a belt included using a flat jam-jar lid to compress the stoma/hernia. However, this design was abandoned because the rigid disc caused discomfort by digging into the ribcage or thigh when bending.

- A member shared their experience with the Nu Hope hernia belt with a prolapse support flap. They found it did not adequately support a 1½-inch prolapsed stoma and was too wide and thick to wear with regular-fit jeans, requiring larger clothing. The belt's bulk and the prolapse made irrigation difficult, as water leaked out before the stoma size reduced enough for the cone. Constipation and occasional painful bulging required lying down until the stoma settled. This experience supports the idea that belts need to be tailor-made.