A patient's experience with SCI and bladder and bowel management

On the 5th of May 1993, 30 years ago at an age of 16, John (fictive name of patient) had a C6/7 spinal cord injury (SCI) and spent 16 weeks in hospital whereof 4 weeks in local hospital and 12 in a spinal unit. The injury resulted in paraplegia with limited dexterity but a reasonable grip, even if there has been muscle wastage. 
Since the injury, bladder and bowel issues have always been on his mind, fearing the risk of a bladder or bowel accident.

Bladder management

Just after the injury, John tried a penile sheath, but was never successful with it and was then offered a urethral indwelling catheter. It was changed to a suprapubic catheter, so that John could independently attach a bag or flip flow for urine drainage. The catheter is changed by a close relative at home every 5th or 6th week depending on planned activities and if necessary, for instance if it becomes blocked.  Since starting with a suprapubic catheter, he has ongoing symptoms of a urinary tract infections, with increased spasms and darker coloured urine, if he uses a urinalysis stick to test his urine it will show leucocytes. However, his GP is reluctant to medicate unless he is feeling unwell. But has been treated twice during the past year for urinary tract infections. There have also been some issues with the positioning of the leg bag.

He has never been offered intermittent catheterization and has regularly been on free flow catheters occasionally with a valve, which has reduced his bladder capacity to less than 100 ml.

Bowel management

When leaving the hospital after the injury John was assisted to do digital removal of feces, but the district nurses refused to give bowel care. In 2011 he returned to hospital and was taught how to do his own bowel regime. This included use of suppositories every night for bowel emptying and self-managing the digital evacuation.

3 years ago, John was introduced to transanal irrigation (TAI) by a Wellspect nurse who also did the training with him. Today, a nurse helps with inserting the catheter and then he performs the irrigation with Navina Smart and controls the hand unit himself.

To be able to perform TAI John needs a shower chair, which does not fit over the toilet in his bathroom at home since it is not adapted. Therefore, John does his bowel regime on bed, consisting of two glycerin suppositories, when at home and uses TAI when away from home. He is an athlete and when he travels for competitions, Navina Smart is used by him and his care team. These speeds up his bowel routine and ensures his bowel is clear for the next day of competition. He feels clearer, cleaner, and much less at risk of an accident when using TAI.

But his home situation does not allow him to use TAI every day.

Bladder and bowel impact on life

Routine and planning are key for John to manage the bladder and bowel. And to avoid accidents. He travels a lot and there is a constant worry about catheter blocking and the risk of autonomic dysreflexia. If flying, he always needs someone with him.

After starting with TAI, John is more comfortable with his bowel issues and feels independent. But it took years. It is dreadful for the patient to have to do bowel care on the bed at home, but this is his only option. He does not want a hospital bed and the bathroom is not adapted.

To follow up his bladder and bowel management he visits the spinal unit annually to do a full check with for example ultrasound for bladder stones, etc. This did not work out very well during the pandemic. And there is always the stress that the local surgery will try to reduce costs and change to cheaper products.