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I just had major surgery (an ileostomy) after three decades with Crohn's disease, and I was in some major pain. After an examination of my bandages, it looked like I had one larger size incision (the one I assume was used to remove my colon) and a few smaller incisions (probably for cameras or instruments?). Regardless of how large, or small, or the number of incisions, my whole core felt like one extremely sore muscle.

After this event I'd just been through, I was thinking I might get to rest. One thing for sure, there's no way I could get up out of bed. Like I said, I was hurting. But as we all know, there's no rest in the hospital; blood pressure checks, blood draws for lab work, and of course, all of the various medical staff checking on me. It was Vanderbilt Medical Center after all, a teaching hospital.

But I had to get up. Doctor's orders I guess. So, the very next day they had me sit up and swing my legs over the side of the bed. That seems like an easy task, and it is normally, but I just had my guts removed. Things were moved around inside my abdomen in order to get to my colon, and my small intestines were rerouted. One painful movement at a time, I was adjusting to being on Morphine to help control this pain when normally I hardly ever took Tylenol.

I raised myself up in bed (or so I thought) but wasn't budging since all of the soreness stopped me. That failure wasn't acceptable. The staff was insistent that I had to do this. They said it's important to move to get that soreness worked out. Well, I did just that. The moans and groans and whimpers I produced somehow helped me get into a sitting position on the side of the bed. I had to sit there for a while just to gather myself because it hurt so bad! Once I was ready to stand, I had more issues with sea legs than I did with all of the soreness. But I was eventually walking the hospital hallways.

More posts by Megan: 

THIS HAPPENED: I explained what an ostomy is to my future husband 

Now to learn to care for my new constant companion: my ileostomy. This was scary for me. It was such an unnatural process. I had to empty this bag on my side as it became full. But what was "full" where this was concerned? And how do I get things clean after emptying it? How do I even empty the bag?? Wound care and ostomy nurses to the rescue! Now there were certain things they showed me to do that didn't work for me. But they gave me the basics to build off of.

Emptying the ostomy bag felt strange at first but quickly became the new normal. I learned to cuff the end of the bag for easier cleaning. The end where wastes would exit was folded back, and I could wipe that end off a couple of times and fold the cuff back down into its original position. And then there's a matter of changing the entire pouching system. Definitely changing the ostomy appliance was more nerve-wracking than emptying the bag. There's more detail needed. In the beginning, I had to use a wafer where the small circular opening had to be cut according to how my stoma measured at the time. This was because, after surgery, the stoma is larger than it will be after the healing process. So for a while, I had to measure with a pre-cut guide provided by the manufacturer to see what size my stoma was and cut the opening as best as I could to make it fit securely. Once that's cut, I would apply a product called stoma paste which isn't a paste so much as it is a caulk used to fill in gaps and seal area. The cutting and caulking process is done before actually removing the old appliance as the stoma can become unknowingly active, so the output can't be controlled.

After removal of the old appliance, I had to clean and thoroughly dry around the newly surgery-induced tender area. Then I had to get my new appliance on. Now, this sounds like it was just me and the nurse participating in this. But it wasn't. My parents were learning with me. I was glad. Because I was very nervous about taking care of this "thing" on my own. They were ready and willing to participate in the process when changing time came. We were able to work through the process together. Because not only did I have to care for the appliance, but I also had incision wounds to care for. One was deep and needed to be packed with clean bandages. Again, not something I had ever done before, so we would learn together. And they were right there for me until I was ready to go solo (much like riding a bike without training wheels). Having support from others made the healing process a lot easier.

Fortunately, in this day and time, the internet is available. Although it can provide too much information sometimes, it was of help when looking up things ostomy related. There are people who are comfortable enough to share their experiences online. This can be a big help to a new ostomate who just needs to see how it's done from someone who has actually been there and done that. 

Article credit: Crushing Life with Crohn's