Sarah's Crohn's Blog - Life with an Ileostomy
Sarah’s Crohn’s Blog is a series of journal entries related to Sarah’s battle with Crohn’s Disease. She was initially diagnosed with ulcerative colitis in 2010, but since then the diagnosis has changed to Crohn’s Disease. Anything referring to ulcerative colitis in these blogs was simply written before the diagnosis changed.
January 19, 2020
It's officially time to introduce you to my stoma! I named her Piper after she gave me a "musical" night in the hospital, and although she behaves for the most part, she can be quite vocal if I eat certain trigger foods. The red part in the first photo is what I am referring to as the stoma. It is the end of my small intestine, and this is where my poop comes out. The weirdest thing about this is that it has no nerve endings, so I can touch it all I want and not feel it at all. I wear a bag over my stoma 24/7 (see second photo), and if I want to spare my friends the sight of poop, I will wear one of my cool new bag covers (I found a doggie one on Etsy!). The bag attaches to my skin via an adhesive.
The first photo was taken as I was doing a bag change, which I do twice a week. Prior to the bag change, I take a shower with everything off so that I can expose my skin to the air a little bit. The bag fills up with poop pretty much continuously throughout the day, and I empty my bag 4 to 6 times a day through the opening on the bottom. I do this at the same time as I pee (I just scooch back and spread my legs), and it only adds a few minutes onto my bathroom trip. It is really no different than what you would do when you poop, except instead of wiping my butt I wipe my bag clean and seal it back up.
Life with a stoma is not as big of a lifestyle change as I thought it would be. I have had a long time to prepare for this and I'm comfortable with my body, so the transition was quite easy for me, but even with that being said I don't even notice it and it really is not as bad as it looks. The only issue I have right now is learning the technique to apply the bag so that the adhesive doesn't irritate my skin and so that I don't have any "leakage" (when the stool goes underneath the adhesive and touches my skin). That will be a learning curve, but I have a great stoma nurse that has been helping me learn these tips and tricks.
In regards to my general health, I am feeling amazing. My surgical pain is nearly gone (I'd say I'm down to 20% of the pain I was originally at), and my appetite is amazing. I have not had a single episode of cramping since waking up from my surgery. I cannot even explain to you how much of a relief that is to me. I literally have been in pain since August, and even bland foods would put me into severe cramping episodes (I'd have cramping even when I wasn't eating). The ability to enjoy food again is so nice, especially since I need to gain weight. My current weight is 96 pounds, and my goal is 120. I was 95 pounds in the hospital before surgery, and my colon was 5 pounds when they removed it, so I've actually gained 6 pounds since January 3 which is awesome!
My surgeon has given me permission to eat whatever I want, but I am following the stoma nurse's advice of starting with pureed foods and then moving up from there. Certain foods like popcorn, peanuts, beans, certain fruits, etc. can cause an obstruction, so I have been following the stoma nurse rules and gradually introducing new foods to avoid any problems. So far I have not had any issues other than gas, and the only reason that's an issue is because it can cause the bag to burst if you don't "burp" it! Being able to eat has helped me get my strength back, and this is my biggest area that needs to be improved right now. I still have my skinny weak Holocaust legs, but I'm working hard to get my strength back by walking around the house and going up/down stairs (I can't do much else until I get clearance from my surgeon).
The only other challenge I face at the moment is weaning off the prednisone. I no longer need the prednisone to control my ulcerative colitis since my colon is gone, but because I have been on it since August, the drug has basically taken over the function of my adrenal system. If I stop it cold turkey, I would go into what's called adrenal crisis, which is why I need to do a slow taper. Even tapering by 5 mg a week has given me significant side effects like night sweats, whole body aches, extreme fatigue, headache, and a general feeling of "I don't feel very good". This is not anything that will harm me, but instead it is pure withdrawal/discomfort and something I just need to push through, but it certainly is annoying! I'm hoping as I continue to taper, my adrenal system will wake up and start to take over things more quickly.
All of these "problems" I have are so minor compared to what I've been through, and I am so happy at where I am right now. I am so happy I got the surgery and don't regret it one bit, particularly since I tried every other option to cure my disease beforehand. I feel super optimistic about everything and am so ecstatic to finally get my life back. In three to six months, the plan is to have another surgery to reconnect my small intestine to my rectum. The reason I have to wait that long is because we need everything inside to heal so that the connection "takes", but I am in no rush and am happy to do what I need to do to make everything as successful as possible. I will continue to post updates, but I imagine from here on out it will be less gory photos and more fun adventures that have been much anticipated!