Peek-a-Boo Bob! (stoma pics)

  Bob has a new game, but it's no fun for me!  For my first two months as an ostomate, Bob was calm and easy to take care of. Though my ileostomy was quickly changing size as it shrank down from the postoperative swelling, Bob didn't move around much and it certainly did not ever retract.....until the past month when Bob began to move almost constantly. Due to the ostomy nurse I saw preop, I thought retraction was only caused by excess weight gain or being overweight. The nurse explained that I shouldn't have any issues because what causes retraction is a lot of excess adipose tissue that puts resistance on the intestine, pulling on it and ultimately causing it to retract. Also, I had only seen one ostomate with a retracted stoma [on social media] and she was a larger woman who explained her retracted stoma is due to her belly size; I watched a lot of YouTube videos before my surgery to get a grasp on what life would be like with an ileostomy, and nobody was talking about any stoma movement causing leaks. 

My biggest issue in the past weeks has been leakage due to Bob playing it's new peek-a-boo game. Flat barriers no longer work because Bob slinks down underneath the barrier and then spews intestinal contents under there....instead of in the bag where it belongs. I am still trying different products in hopes of finding the perfect appliance for my active lifestyle, which includes sweating and swimming. Unfortunately I have limited time to try products because I'm back to working long hours and cannot afford to have a bunch of leaks at my job; I've had a few (in the same night!) at work and it's not the end of the world, but I'd rather not have to put up with potential leakage and the anxiety that goes with it. 

*I'll write a separate blog post about how to deal with leaks at work, and generally outside the home, later. 

So I switched to convex by Hollister, since this is the company I've used from day one in the hospital, has always been kind to my sensitive skin and the most consistent in lasting more than a day or two...before the peek-a-boo Bob began of course, as when it started hiding under the barrier it caused many leaks per day/night. So far their convex two piece appliance that is made to be good for the skin and a non tape border is the best so far as lasting the longest, but due to its nature, water does make it swell and start coming off so I have to use the large Coloplast barrier extenders to make it last through swims and baths. 

*I'll also make a separate post on these items, as I'm planning a product review of convex appliances also.

The only downside is that Hollister does not have a deep convex system, they only have  standard convexity which is pretty light, in my oppinion, and Bob is able to get under this barrier at times, also. For this reason, I am planning to try other products; Coloplast has a deep convex and I am currently working with Nu Hope as they make custom appliances for more stubborn stomas. 

All in all, I think this whole new Peek-a-Boo Bob is really weird and can be super frustrating as well! Recently in Facebook support groups I've met other people whose stomas move around a lot like this, but it is something that nobody had explained to me prior to my surgery. I was completely surprised at this realization, and it took me a while to figure out why I kept getting leaks behind the barriers all of a sudden because I was unaware this is something that happens. I'm hoping that I'm able to help at least one other ostomate with this information, as it's one of the things I wish I had been told before surgery.....actually, this is a great idea for another blog post as there are other things I wish I was told before surgery!

Below are pics of Bob to show the drastic changes in size and shape which occur at different times in the day/night:

This is Bob retracted, at it's smallest size when it slinks underneath the barrier. There is also some skin irritation seen around my stoma due to the leakage that occurred overnight before this pic was taken

This is Bob fully extended, a huge difference from retracted Bob (and kinda gross looking)....I believe this is the longest it's ever been but at least, at this shape and size, there are no barrier leaks!