Musings and not freaking out.
Once back in Bismarck, our lives seemed to settle down, and we went about the business of healing Joanie.
I was able to get her to walk now more often. In fact, we had established a regimen that included a walk in the morning, and one in the afternoon. I had pretty much goaded her into going a little further every time, until we were walking about a half an hour, or more at a time.
Her appetite continued to grow, and her gastro-intestinal tract seemed to be cooperating, and there were no episodes of throwing up. Both good signs.
We weren’t scheduled to see Dr. Carson until late April, and it was a welcome respite from having to go to Minneapolis.
After we had been back a few days, I began to second guess myself regarding keeping the news that Dr. Carson and I had talked about that Sunday morning to myself when I saw how she was progressing. She wasn’t back to work yet, but she was in contact with her office, and was keeping up on what was going on. She was anxious to get back, but it would still be a few weeks before she would do that. I was seeing the seeds of the strength of her spirit grow every day, but I still thought I was doing the right thing by letting Dr. Carson handle it until we knew for sure what was going on.
In examining my motive for keeping it from her, I wondered how much my own feelings about the prospect of the permanent colostomy entered in. I knew that projection comes into play when one is involved in a situation like this, and trying to keep from being subjective in one’s judgement and decisions can be difficult. As a caregiver, it is important to know the distinction between how you feel about a major change versus what is important to your patient. The way I dealt with it was to just try to put my own judgement aside, and focus on what was best for her.
The Miami Pouch proved to be not much of a challenge for her, and except for my occasionally helping her with irrigating it, that part of the change was going well. She seemed to be adapting to this change without making a big deal about it. I think for her she was well on her way to making it part of her new reality.
The difference between the Miami Pouch and the ileostomy was control. With the pouch, at least she had control over the elimination process. There was no such control over the ileostomy, when the bag was full, it was full, and had to be emptied lest the pressure break the seal.
The mechanics of changing it were being handled by me, and that gave her some confidence. The cloud that hung over this part of her life was how strong was the seal, and what would happen if, and when, it might leak. We knew that sometime it would, but there was no way of knowing where or when it might happen, and it wasn’t long before it happened for the first time.
One night, about 2:30 in the morning, she woke me up and told me it was leaking. It took me just a moment, and I could smell it. As a caregiver, I knew what I had to do, and that was to not freak out. Freaking out, would only make Joanie feel worse than she did, lying there helpless to control what was going on with her body.
I matter of factly got up, went to the kitchen and got a roll of paper towels, then to the bathroom for a wet washcloth and the necessary stuff to change the “appliance.”
An ileostomy presents a different problem than a colostomy would, in that the waste hasn’t been processed completely, and is fairly liquid.
I just told her to relax, and we’d take care of this. I approached it like I was a nurse, not making a big deal about it. It had leaked quite a bit, and had soiled her undergarments as well as the sheet on the bed. She was upset, her face was flushed and I felt so sorry for her, but went about cleaning her up, as if it was not big deal.
Another problem arose when I went to remove the bag and more started coming out of the stoma. When that happens, there is nothing to do but grab more paper towels and keep the flow from running all over. I just covered up the stoma until it was quiet again, went about cleaning it up and as quickly as I could, laid down the paste and pressed the bag over the stoma. I told Joanie to put her hands on it and press down for a few minutes.
After a few minutes, I got her into the bathroom and turned on the shower. While she was showering, I took her nightgown, undergarments and the sheet off the bed, bagged them and threw them outside for the garbage. By the time she was done, there was a clean sheet on the bed.
When she got a fresh nightgown on, and got back into bed, I knew this had been traumatic for her. She was distraught, and she shed a few tears, and told me she’d be glad when this was gone. I just held her and told her we’d get through this. About then, Muffin, who had been standing by watching everything, and wondering what the hell was going on, jumped up on the bed and sat on her chest and started purring as she scratched her.
At that moment, I knew I had made the right decision to not tell her the news I had gotten from Dr. Carson, and didn’t second guess myself again, all the time clinging to the outside chance they could do what we hoped they could.