It's been a busy and eventful couple of days! Ok, eventful if you are someone who has mostly been sitting around reading, taking naps, and learning the fine art of pooping in a plastic bag. So here is what I've been up to:
Thursday home health nurse Molly made her visit. I did the bag change start to finish all on my own with her watching over me. I can't believe how nervous it made me! I actually got all sweaty on my forehead because I was nervous and concentrating so hard on trying to get it all right. I did it though! The tricky part was removing the old pouch and wafer because part of it overlaps my incision. The staples are gone, but the steri-strips are still there and I actually had to pull three of them off in the process of removing the wafer. It was a little nerve wracking to be pulling this adhesive stuff off of a healing incision. I kept waiting for something god awful to happen, but it turned out ok. Molly left me some extra strips, so I can just replace the ones that get pulled off when it happens. No biggie.
The only other ostomy related issue I am having is a little bit of skin irritation. It's a two part thing, really. The first is a little bit of raw skin right next to the stoma site. This is pretty common, actually. So much so that I already had this bottle of stoma powder (I think it's pectin or something?) ready to put into action. You sprinkle a little on the raw skin, brush off the excess, and then you're ready to go with putting the new wafer on. The second bit of skin problem is these weird bumps that look like crazy white heads or pimples out around where the outer layer of adhesive is (the tape part). I had a few with the last change, and more this time. The only thing I can think of is the ET/ostomy nurses at the hospital always used the adhesive remover wipes to take the wafer off and Molly and I hadn't been doing that. I am going to try using them next time and see if it makes any difference. If not, I'll have to figure out something because those little suckers bleed if they get bumped or scratched and I don't want a bunch of raw skin. No bueno.
In the end, I did a good enough job with the change that Molly said I graduated and she didn't need to come back anymore unless I wanted more help. I declined and thanked her kindly for all of her help. She really saw me at my super wimpiest and was very sweet and kind and didn't laugh at me (at least not to my face!). As nice as she was, I'm kind of glad that part of the adventure is over. It made me feel weird having a home health nurse. Like an invalid or something. I know it was necessary for awhile, I'm just glad it isn't anymore.
On the exercise front: I am pleased to report I can now walk for 30 minutes on the treadmill. Yay! This is progress. I've also managed to bump the speed up from 2.5 mph to 3.0-3.2 mph. I am very excited about this. Last week my energy levels dictated that I had to pick either leaving the house to go anywhere/do anything or taking my walk, so I skipped it a few times when I would have like to have gotten the exercise. I am hoping this week is better. I'm working toward 5 days a week for at least 30 minutes each time. Ultimately I have my eye on that 2 miles at a brisk pace by May 31st. Barring any major setback, I know I'll be ready. I have no idea yet when I'll be able to run again. I see my surgeon for follow up in about a month, so I will be sure to ask him then. I also need to ask about push-ups because my arms are looking pretty darn sad.
Sleeping has improved a ton. I am now able to lay on either side which is a huge relief after being stuck with having to lay on my back for all that time. I'm always a side sleeper, so just having that option back helps a ton. Last night I even managed to go to bed Vicodin free! I think I'm done with them now which is great. I am grateful for pain pills, and I definitely think they have a valid place in recovery since they let you control your pain and stay more comfortable and mobile, but it's a relief to be done with them and not feel like such veggie all the time.
My other big news is that I drove today for the first time since surgery. I was only supposed to wait two weeks, and this was closer to three, but the desire and opportunity hadn't really come together before today. We went to two different grocery stores today. I actually made it through both stores without wanting to collapse into a heap. I even did most of the picking things from the shelf which I haven't been doing. Hooray for progress! When we were leaving the second store, I decided I wanted to drive us home. Since I had been off of the Vicodin for about 36 hours or so, I felt safe doing so. The drive was uneventful and it felt good to be back behind the wheel. I now feel comfortable if I need to go somewhere which is good since my husband is going back to work tomorrow.
It's still rough not being able to do much to take care of the baby. Sometimes he cries and I'll try to comfort him until my husband can come and get him and he just looks at me like, "Why won't you pick me up, Mom?" Then when his dad has him, he snubs me and won't look at me. I know he doesn't understand, but it still makes me really sad. There are lots of times though when his dad will hold him out to me and he'll hug my neck and slobber all over my cheek giving me "kisses" and we laugh and it feels great to see that he still loves me. Just a couple more weeks and things will be more normal again. My older son has taken everything really well. He is so good about coming up to me and asking if it's ok to hug or touch me and then being really gentle about it. He asks me if I feel ok or if I need to take a nap. Such a little man. I can't believe he turned four last week. I'm so proud of him and the way he is growing up.
That's all for now, I guess. Having the ostomy is less of a big deal as each day goes by. I wouldn't go back to my pre-surgery days with UC at this point. I know there is still a long road to travel with the additional surgeries and recovery from them, but it's a road I'm happy to be on. I still can't believe it when I lay down at night and I don't have that ache in my guts from my poor sick colon. I also realized that I went through two different stores today without once thinking about the bathroom or needing to leave my grocery cart and rush off to go. How liberating!
Thank you so much for your posts!!! I also am a wife, mother to a baby and I have uc. I'm seriously considering surgery-ready to be done with the remicade, obsession with where the bathroom is, and feeling terrible! Praying for you!
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