Even though my friends and family have gone through the process with me, I still get a lot of questions. Thankfully my people aren’t afraid to ask those weird or outrageous questions so I can embrace them and answer to the best of my abilities. This helps avoid ignorance and continues to spread awareness though knowledge.
I’m going to try and keep this page as updated as possible so keep those questions coming!!
- Did they remove the whole intestine, or just part?
- They removed my whole large intestine (colon). My disease affected the entire thing and it was too sick to leave any in my body. Technically the procedure was called a sub-total colectomy though because the surgeon left my rectum, which will allow for a J-pouch surgery down the road.
- What’s a stoma ?
- The stoma is the opening in which my small intestine was pulled through on my stomach. Mine is on the right side of my tummy, just below my bellybutton.
- What’s the difference between an ileostomy and colostomy?
- I have an ileostomy. The opening where my stoma is uses a part of my small intestine. A person who has a colostomy would have a healthy portion of their large intestine used. I didn’t have a healthy large intestine and that’s why it was all removed.
- What does it feel like?
- The actual stoma does not have nerve endings so I can’t feel that. There is some irritation around the stoma site which I do feel as it’s a little bit painful and itchy. If that was healed it wouldn’t really feel like anything. Sometimes I can feel a gurgling sensation as either waste or gas is eliminated
- Where does it come out?
- Waste comes out from the centre of the stoma. I can’t feel when it’s coming or happening and when it does happen it just sort of oozes bits at a time. It was really weird to see for the first time. I was told that marshmallows help slow it down so whenever it’s time for a bag change I eat a bunch of marshmallows first. I don’t know if this actually helps or is just a myth but it’s worth a try. When the bag is on, the waste just collects in there until I can empty it.
- Do you have the urge to go?
- I can’t feel when I’m going to have a bowel movement and aside from a little gurgling I can’t feel when it’s happening. I know I have to empty the bag either when I can visually see it’s getting full, or from the weight of it.
- How many times a day do you empty it?
- I usually empty the bag about 5 times a day. Since there isn’t a large intestine my digestion process is a little bit faster than the normal person, and the bag is the only place to hold it so it needs to be frequently emptied. There is a clip at the bottom of my bag that I take off while sitting on the toilet, and empty it right into the toilet. I then clean it all up, put the clip back on and am good to go.
- When do you change the whole bag?
- Generally you’re supposed to change it about every 5-7 days. If it begins to lose its adhesiveness or leaks you have to change it immediately. Right now I’m finding my bags are lasting about 4-5 days. This is just because my nurse and I haven’t quite found the right combination of products that work best with my skin. My skin is also still adjusting to having a big sticky square stuck to it.
- How does it stay on?
- I wear a 2-piece system right now. The first piece is like a big sticky square called a flange. Once my skin around the stoma is clean and dry, I measure the size of my stoma and then cut a circular middle in the flange for the stoma to stick through. Around my cut circle is also a round plastic piece where the bag attaches. I also use a barrier ring, which is like moldable play-doh that goes on the flange around the circular opening. This part just helps stick the appliance on and fills in any small gaps where the skin may be exposed. Once the flange is on I can clip on the bag, similar to a Tupper wear container. I then put on a clip at the bottom of the bag where I will eventually empty waste in the toilet.
- What does the output look like?
- Initially since I hadn’t eaten it was just green liquid bile (gross, I know. Now you can understand my hate for the transparent bags). Now it’s the same colour as a normal bowel movement however still either liquid or very soft. This is because the large intestine is where water was absorbed making a normal person’s bowel movements solid.
- Does it smell?
- To anyone else, no. It doesn’t smell under my clothes and people around me can’t smell it. When I empty it, it smells. It smells foul.
- Do you still fart?
- Gas is also eliminated through the stoma so I basically fart from my tummy. I can’t feel it coming and I can’t control it but it sounds like a gurgling, grumble and can potentially be fairly loud. I also need to monitor the air in the bag and make sure it doesn’t fill up. I can open up that Tupper wear part on the flange to release air if I need to.
- Did the staples hurt to come out?
- Nope I didn’t feel it at all. And the stitches kind of dissolved on their own from the other incisions.
- What happens to your butt?
- It’s still there. Now nothing comes out of it though.
- Do you still need to take medication?
- Nope not right now! Before I was taking about 25 pills a day. Now other than my supplements, nothing.
- How long until you can have the second surgery?
- Generally they like to wait about 6 months to a year. I don’t have a ton of information about the second surgery because it will be done at Mount Sinai and I haven’t had a consult with their surgeons yet. My GI said we may be able to do it sooner than 6 months since I haven’t been on steroids buuuut since I’m going away in March we may be pushing it. She said we can start the process once I’m recovered from this operation and have everything in place for when I get back. On the other hand though I feel like I’m just starting to get my life back and I don’t think I’ll be in any rush to go through another trauma. I might just let my body heal and become healthy first. I also want to start working out again so I can ensure I’m in the best possible health I can be for the second recovery.
- What are they doing in the second surgery?
- Again, I don’t have as much information about this one but I can try to explain it to the best of my knowledge. Basically instead of the small intestine sticking out from my stomach, they’re going to reconstruct it to attach to the rectum that was left from the first surgery. They will bring it down and loop it to form what looks like a “J” creating a pouch. This is where waste will collect until I can eliminate though the anus like a normal person. It will be smaller space for storage so I will likely have to go more often than normal person. But it should lead to an even more improved quality of life.
- How is your diet now?
- Stay tuned for this blog post of it’s own. It’s been a little bit of a whirlwind.
- Will your hair come back?
- YES! It already is starting to. It actually looks quite funny right now because it’s so thick around the scalp with baby hairs. I’m hoping it will come in healthy and stay put.
- Can you still pee?
- Everything about my urination is normal and always has been.
- Do you feel better?
- YES!!
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