Recently I have faced quite a few struggles with my ileostomy and they have taken quite the toll on my mental health; this comes after having my ostomy for over 4 years and having little to no issues prior to this.
Some of the struggles I have been experiencing are:
- leaks – I do suffer with leaks but these have been happening far more often than usual
- sore peristomal skin
- increase in retraction
- stoma cramping – this is probably my bowel kinking or becoming caught on adhesions and my goodness it is some of the most debilitating pain I have ever been in!
To an extent I have experienced all of these before but not to this extreme where every day my stoma has become uncomfortable, tight and sore. I have linked to previous posts within the Comfizz blog archives that relate to specific struggles.
It seems more and more likely that I will be having surgery to resite my stoma and hope that this time the spout actually forms rather than just being a red blob that falls back in on itself. I was supposed to have had a meeting with my surgeon at the beginning of April and obviously lock down happened, then due to all hands on deck my telephone consultation was also cancelled. Since then I haven’t heard anything and apparently it is completely unheard of to email him!!
It is more than what my trusted stoma care nurses could deal with; they obviously can offer short term ideas but I’m not sure anything other than surgery will help at this stage. It has really knocked my mental health as I’m constantly in pain again, plus the constant leaks are really degrading.
Do you get any of these frequently or infrequently and if so how do you cope with them?