Hey everyone! Sorry I haven’t posted in a while, I took a break to spend time with family for the holidays!
This morning I made a post on my Facebook asking friends to ask and submit questions they’ve had but never asked about my ileostomy, and I’m going to answer them here and now!
Question one: Why did you have to get the ileostomy?
So, I had to get my ileostomy because my Crohn’s disease was progressing, and I had gotten a second perforation in the same spot in my small intestine that caused sepsis. The doctors all decided that I needed the surgery to ultimately save my life, and they cut out over two feet of diseased intestine(plus my appendix), and gave the ileostomy to let my colon rest a bit.
Question two: Is it painful/uncomfortable? Can you feel it every time you move?
It’s not painful per say. Like it hurts when changing the bag if I don’t use my medical adhesive remover spray. And sometimes the surrounding skin hurts when it’s irritated, but that’s mostly itching. Can I feel it every time I move? I feel the bag, not the Stoma itself. The Stoma (his name is Charlie), doesn’t have any feeling really, I can feel pressure. The only time it hurts is if there’s pressure being applied directly to it (like if my son accidentally puts his weight there.
Question three: How does it affect your everyday life? What you eat? Your shower routine? Going out to eat? Does it affect your relationship with your husband or son? Side note- my mom had a pee bag and I had to help her saran wrap up so she could shower and change the dressing on it for her.
It doesn’t affect my daily life too much, just that I have to make sure there’s a place I can empty my bag wherever I go, and I have to carry a little pack with extra supplies in case I spring a leak, but that’s not too bad because I keep the pack in the diaper bag. I can eat whatever I want at this point, just have to be sure to chew everything very well. My surgeon said he’s only ever seen an obstruction once (and he’s been doing this for YEARS) and that was an elderly woman with no teeth who swallowed a whole piece of broccoli and it got stuck! Haha! Going out to eat, is fine! I just empty my bag before I leave the house, and leave the restaraunt. Showering I can wear my bag, or I can take it off. I’ve gotten more comfortable with taking my bag off before getting in the shower and then putting a fresh one on when I get out. It lets my skin get some air, and it’s nice to shower completely naked 🙈. My relationship hasn’t been effected with either of them from my Stoma. The only thing is, is that I had to stop breastfeeding my son due to me getting malnourished for it (I weighed 77 pounds).
Question four: What does the actual Stoma feel like?
Honestly, it feels kinda like jello. It’s funny.
Question five: Can you feel when you’re pooping?
No, not really. Not unless it’s really gassy and it’s making bubbles. A lot of times I forget about it all until I stand up and feel the weight of my bag pull down. Then I go empty it.
Question six: This is kind of TMI but is it like hard or liquid or what?
TMI questions are totally fine with me! It’s usually liquid, some times thicker than others. Depends on how much liquid I intake. Thickest I’ve ever seen it is like pudding consistency.
Question seven: Are you often embarrassed by it?
Nope, I used to be embarrassed if it would show under my shirt or something, but honestly I don’t care anymore, plus I have a pretty cool bag cover I can wear!
That’s the end of the questions for today, and I TOTALLY loved them! If anyone has any other questions, feel free to comment or send me an email! Crohnswarrior2016@gmail.com