First thing on Monday morning I managed to talk to the stoma nurses about my problems with my ileostomy bags, and they asked me to drop in to see them, and made space for me at 1:30pm that day. As it happened, I was to’ing and fro’ing past the QA hospital to get blood tests at the Spire hospital anyway, so a little fine tuning of the blood taking appointment meant that I could fit everything together without yet another 50 mile round trip, which was cool.
The stoma nurse was really helpful, and had a good look at my bag, how it was fitting, and then the stoma itself, and the how the flange on the bag was fitting around the stoma. Her assessment was that my stoma is indeed herniated (though not too badly) which explains the increase in my apparent waist size. It also explains why the bag is harder to fit to the abdomen than before. In addition, the shape of my actual stoma has changed slightly, making the bags fit less well (all the bags are custom fitted to the patients personal stoma size and shape). In her opinion this is most likely the key reason for the bags to be failing.
She’s given me a selection of options to help with the problems. The first is a new template for the shape and size of my stoma. She’ll send one to the medical supplies company so new bags will come pre-fitted to my new shape stoma, and another for me which I can use to adjust my existing bags with a pair of scissors. It sounds fairly Heath Robinson-ish, but in practice this is how the custom fit is achieved. Low tech is sometimes the right tech.
I’ve also got some reinforcing strips which are used to more securely “glue” the bag to my abdomen. A mixed blessing in some ways – they’ll make the fit stronger, but they’re awkward to fit in place, and look like they will be a devil to remove in due course. However, they may be the answer when my output is high.
In addition she’s given me some larger bags to try for those periods when my output is particularly high. They have a larger flange which will be more “sticky” than the normal sized bags. The downside to these is that (a) fitting the larger flange is again going to be more awkward, and (b) they will put more strain on the hernia as they fill up and get heavier.
Finally, she’s given me some hygroscopic gel which can be added to the bags. When the output is high and watery these will help to thicken the contents of the bag making it easier to detect the fullness of the bag (especially while sleeping) and easier to manage too.
If things get worse on the hernia front then there are more options available (special straps and belts to help support the bag and the hernia) but apparently I’m not bad enough to need anything like that yet – fortunately! So for now it’s a case of seeing what helps me to best resolve my problems. I’m hopeful that simply correcting the fit of the bag to the stoma will make a major improvement, as I can see how that is critical to the effectiveness of the seal. Next up will be the supporting strips & possibly larger bags. The gels will only help with a specific problem, but may be useful once I’m experiencing it, so I’ll hold them in reserve for then.
In the meantime the fact that the stoma is herniating is not unusual (apparently this happens in up to 50% of patients with stomas) but does mean that I’m going to have to take some extra care not to put any more strain on my abdomen. So, although my strength is back to normal, I’m going to need to remember not to do any heavy lifting again. Which is a bit of a nuisance. If I look at the risk factors for hernias I can tick four; surgery, weight loss, age and congential (my father had one a few years back) so I guess I ought not to be too surprised. The stoma nurses are obviously unconcerned at the moment, and as I’m due to see them again in August, and my surgeon in September, they’ll obviously monitor the situation for me. However I’ll keep a closer eye on that whole area of the abdomen from now on too.