It’s been almost 3 months since my first surgery, and it has been a game changer for me. Every issue that my UC was causing me while in a flare has been eliminated since having my colon removed, including my chronic fatigue. I can now eat whatever I want with no issues (with the exception of the two items forbidden by my surgeon – artichoke and handfuls of nuts), and I can do normal day to day things without worrying about where the closest bathroom is or how much pain I’ll be in. I notice these improvements on a regular basis. I constantly find myself thinking “wow, I would never have been able to do this before.” Three weeks ago, I attended the Lion King Broadway. I sat in the middle of a long, tight row of people. Anyone with stomach issues knows this is a nightmare of a position to be in, but thanks to the surgery I no longer had anything to be concerned about and was able to enjoy the show.
I ask myself, what did I loose by having this surgery? Maybe I’m one of the lucky ones – I’ve heard nightmarish stories of people’s experiences with ileostomies, but I can’t think of anything negative to share – I’ve had no complications.
The first month after the ileostomy was the toughest. It took time for physical recovery to occur – the stoma shrunk nearly an inch in diameter once the swelling went down. It also took time for me to get used to the feeling of the bag, learn what clothes I felt most comfortable in, and learn what I could or could not do physically – in the beginning I was very fearful of hurting the stoma.
At this point, I can confidently say I’m in the swing of things. I no longer fear hurting the stoma – its pretty resilient! Oftentimes, I forget its there. I wear a Stealth Belt that I love as it allows me more freedom and gives me a feeling of safety. I still wear a lot of dresses because I have found them more comfortable, but am also fine in jeans.
I have found two styles of bags that I like. One is a “mini” – it is more comfortable when I’m out and about as the normal size bag feels bulky and rubs against my leg. I use the larger size bag at night. The bag tends to fill with air at night, and I’m afraid that if I wear the smaller size it will burst or leak. Below are pictures of both kinds of bags, as well as the stealth belt.
I change the bags quite often, nearly daily – but can also go several days without changing it if need be. I change the base every 5-7 days. The less often you change it, the less irritating it is to your skin.
The first couple times you do a full bag change, its usually intimidating and oftentimes messy. It gets better with time as you learn the best tricks (and the best time of day) that work for your body, but its still the most complicated and cumbersome part of having an ileostomy.
After much thought, I have made the decision to move forward with the next surgery to get a J-Pouch. The ease and convenience of the ileostomy has caused me to put a lot of thought into it – making a decision that could make life difficult again, is a difficult decision. Fear of the unknown is real. In aid to my decision, I’ve asked for many people’s opinions who have gone through the J-Pouch procedure and the majority say that even with complications, IT IS worth it. I’ll tell you my opinion later this year, as my next surgery is scheduled for October 10th.