Monday, May 12, 2014

So… what IS a stoma anyway?

Someone asked so… again… I'll create a post which you can read or not depending on your curiosity level.

Ok! So let's get to the 'nitty gritty' of what everything is! First an ileostomy is formed when the whole  colon is taken away and a 'stoma' is formed from the end of the 'ileum'  which is the end of the small intestine. A colostomy is formed when only part of the large colon (large intestine) is taken away and the 'stoma' can be formed from the end of the remaining colon. A stoma is the part of intestine that is taken out of your body through a small incision on your stomach, typically on the left hand side for a colostomy and the right hand side for an ileostomy.  The dictionary definition for stoma is 'a mouth like opening'. A stoma has absolutely no feeling in it, I touch mine for cleaning purposes and feel nothing. a stoma looks very pink, because it has good blood supply to it.

My first surgery left me with an ileostomy. The stoma for that had two holes in the end as it was a loop of sorts (still not totally clear on why that was - I think because the idea was to reconnect my small intestine to what was left of my colon). The stoma was (and still is) on my right side. A colostomy would have been if I was still using the part of my colon I kept but we were bypassing it to try to get it to heal up - which it did not.

The second surgery removed the rest of my colon. My surgeon did not change my stoma site but did change how it ends. It is now an end port (the end of my small intestine) instead of a loop so only has one hole.

Now, since you can not control what comes out of the stoma like you can through your rectum, you need to wear a bag all the time. The bags I use are two piece. So, there is a part that sticks to your skin called a flange. It looks like this:



Then you attach a bag to the ring, the bags look like this:


The bags have a velcro part at the bottom. You fold it a few times and seal it. The bags can be emptied as often as needed. You can also change the bag without having to change the flange if needed. I like to try to leave the flange on as long as I can as you do not get as many of those in a box as you do of the bags. The bags are on the large side and can be hard to hide when they get full so it's best to empty them often. The output from the stoma with an ileostomy is different than a normal bowel movement. Because I no longer have a colon, things to not digest the same way - some things not very well at all - and I have to be careful about some foods as I do not want to block the stoma hole. I hear that is very painful. The output varies from watery to mushy - never anything formed. 

I am still learning all the ins and outs of this stoma thing. I will have this for at least a year. I am trying not to think about this as temporary because we never know - it could be permanent. I've already had one letdown and it is currently taking it's toll on me. I think if I don't think of this as a temporary issue I won't be heartbroken yet again if I can't get surgery #3 next year. I still have my rectum which means I can possibly, get my small intestine hooked to my rectum and no longer have the stoma. I do wonder though what that will mean for me. Will I have chronic diarrhea for the rest of my life? Something to talk to the surgeon about and take into consideration. However, I do want my insides all back inside my body someday.

For the foreseeable future though, I have this: 



I have to learn to be comfortable with it and deal with it because it is now a part of my life. I do hope it helps with my pain and I do hope my Crohn's can go into remission. As we've removed the largest problem I was having with this disease, the hopes are high that my quality of life will be much improved.

A couple people have asked what the stoma looks like. You can google it if you want but you'll see some pretty nasty things. Next time I change my flange and clean my stoma I will take a photo of it and share it here - don't worry, I'll make sure there's a warning for anyone who is squeamish or doesn't want to see it.

No comments:

Post a Comment