Kristi arrives in the middle of the night and we talk for a while. One thing I can do with my two daughters is talk, we have some great conversations.
I sleep for a while then wake up in pain, and get another shot. It is not too bad, and I get some rest. The morning brings more meds and a Dr. visit, not the regular surgeon but his associate and that is who is on call during the weekend. It is Saturday. Kristi goes out and gets breakfast, I eat hospital fare as they don't want me to take in too much food until they can make a better determination as to the cause of the pain. The surgeon who did the work has already said he does not want to have to go in there now as it is too much of a mess and it might just really complicate matters.
Kristi comes back with some cards and a cribbage board. I have not played cribbage in years. I call Terry, she is rested and in better spirits and we talk about her not coming to the hospital. Kristi is with me and she will be staying until Thursday. So Terry stays home, gets some much needed peace and quiet and can nap when she wants to and I'm not underfoot.
Kris and I while away the day playing cribbage, reminiscing about the days when we played cribbage as a family and traveled to the U.P. of Michigan for vacations. It is easy talking with my daughter and I am much comforted. The pain seems to ease and the time grows between injections. In the afternoon they move me to a pill and everything is better. I still have bouts of pain as the meds wear off but they seem to becoming less frequent.
Sunday comes and the pain is eased quite a bit. Kris and I still seem to find a lot to talk about and we play cribbage, It is the most relaxing time I've had since the start of chemo/radiation. She is a knowledgeable nurse, is constantly critiquing the nursing care at NEA and is frankly impressed with the attention the patients received. Kristi is an RN on a cardio ward in Valparaiso, IN and their nights are so busy they often do not have time to just tend to their wards. NEA nurses seem to make time and have a nice way about them. They instill confidence that things are going OK.
Finally Monday morning, the Dr. comes in, a urologist and they decide they cannot pin point the source of the pain and seeing it has gotten much less intense I am released to go home.
Home, home, home. You just do not know how good that sounds when you are not feeling good. There is my wife, my dogs, my bed, my stuff and Nurse Kissy. That name comes from her nieces and my grandchildren. My other daughter Jenny's children.
So a pleasant week begins with the attentions of my own personal RN and my wife sharing the burden of care instead of carrying it alone. Kristi does not like the process of changing the bag, at one point she comments, "God, Dad, that is your intestine sticking out." She looks a little white around the gills. Terry and I smile, Terry has learned to tolerate the little devil.
However, all good things must come to an end and Kristi returns home and I miss her terribly. The load is now on Terry, but I am feeling better.
After a bit I go back to work for a while. I still do not like the rustle of the plastic bag under my clothing. I still have leakers, and Terry is much better at replacing the bag than I am. When I stand my tummy has too much of a bulge, lying down the skin lies flatter and is easier to work with.
I am still suffering skin erosion from the acidic output. It really burns some times and even may bleed a little. No one seems to have a solution. We go back to the Wound Clinic for follow up on the butt wound which is now completely healed. Still the nurses aren't able to make any great headway on appliance attachment. I now start looking forward to the "reversal" surgery in October as the skin irritation is sometimes quite annoying.
The one thing I am grateful for is I have no bowel issues with the illeostomy. The bag is one thing, but I empty it when I want, I do not have an urge to go to the bathroom, I have no pain in the anal area, no inflammation, and am at ease for the first time in four years. I am having should I keep it, should I reverse it talks with myself, but I lean more and more toward reversal as time goes by.
Days run together. I am working much of the time and still having bag problems. However Terry and I seem to have grown at ease with the issues and while neither of us like it we handle it. Terry has become quite good at handling bag replacement and has developed a method that is most reliable even though I still encounter leakage. It seems as if the stool erodes away the adhesive and will literally tunnel an escape route. When we remove the appliance we can follow the track of the leak.
Nothing we do seems to make much difference although once an a while we get one that stays for the full three days. Emptying the bag is my job. It opens and empties through an tunnel into the commode. I use a spray to flush it and rinse it out then reseal it with some clamps. It works until I forget to apply the clamp and then I am the creator of the leak. The initial odor upon releasing the content is quite over powering at times. It is job best done in private and by yourself as it is the nastiest part of the illeostomy. However neither Terry or I notice odors when the bag is sealed and works correctly. Like I said earlier, not having to go to the bathroom with the same frequency I did before surgery is a relief. At least I feel almost human when I'm out and about.
Other than the skin erosion and the cleaning of the bag four or five times a day time passes and I am quite comfortable. October approaches and the date for the illeostomy reversal is soon at hand.
End of part 5
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