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Posts Tagged ‘ostomy nurse’

I know, I know…it’s been a while. But no need to worry excessively – I’m doing okay. Just struggling a bit with motivating myself to write something.

Here’s a slightly overdue recap of recent events:

12/28/09 – I went in for an ultrasound on my right arm to see if the blood clot(s) had resolved. Thankfully, the answer was yes (no clot!). So, I got the “all clear” to have the port removed (although I still have to keep giving myself the Lovenox shot every day for a few more months as a preventative).

Later that day – Off to the cath lab for the port removal procedure. Two nurses told me it would be easy, with no sedation necessary, and nothing to worry about – so, I didn’t. Then, the doctor came in while they were prepping me and gave me a slightly more detailed version of what to expect: the procedure would take about 20 minutes, they’d give me local anesthesia to numb the area, and “most people do fine without sedation, but if you feel anything sharp, let me know…”  (What!?)  They tented my head again, as they had when I got the port installed, so I couldn’t see what they were doing, but I could feel tugging and pulling and hear the sound of clamps being used. At one point I swear it felt like the doctor put his foot on my shoulder and yanked the thing out of me. I’m sure that’s not what really happened, but it felt like it! They sewed me up and I went home. For a procedure that was supposed to be “nothing” I ended up on the couch for the next two days. I was really fatigued and it felt like someone had slugged me hard in that soft area between the shoulder and the collar bone. But I survived (once again), and the dreaded port is gone!

12/30/09 – I had my follow-up appointment with Dr. Brown at four weeks after the surgery. He looked at all the wounds and said they were healing properly and he was happy with my progress. He also commented that when he saw me walk down the hall to the exam room “it didn’t look like you just got off a horse.”  I understood this to be a positive indication of how well I was doing. We discussed the things I’d been concerned about (the stoma bleeding, the wounds still seeping, the bulge on my belly just above the incision…). Everything I brought up was met with his nonchalant “that’s normal.” I’m to see him again at eight weeks after surgery.

1/8/10 – I was having a few problems with the colostomy bag, so I went to see Carla, the ostomy nurse, for a follow-up. She looked at everything and, like Dr. Brown, declared that all was well and normal for this stage of things (being less than six weeks after surgery). I talked to her about the features of the different bags I’d tried so far. There was one bag I liked everything about, except for the wafer (the part that adheres to your skin). I preferred the wafer on another bag, but it didn’t have other features I wanted. Carla looked through her enormous ostomy appliance catalog and found a bag that has the combination of things I wanted, including the “microskin” wafer I liked. I’m waiting for the new bags to arrive any day now so I can see if they’ll make dealing with this a little easier!

Staying warm while at the computer...

Other than that, I just seem to have days when I simply do not feel like doing anything. I think I’ve actually been just a little depressed – which, in Dr. Brown’s and Carla’s words, is “normal” under the circumstances. I’m still adjusting to a having a colostomy (a huge adjustment, I might add). My body is still recovering from the months of being poisoned, burned and cut open. Plus, the chemo and radiation brought on instant menopause, meaning my hormones are whacked on top of everything else. And, it’s been downright cold! So, a tiny bout of depression doesn’t seem out of line, does it?

The good news: It’s a New Year. I’m cancer-free. I’m well enough to get out and walk, drive, go to the grocery or the post office, and generally do many things I once took so much for granted. Only now, I usually remind myself how blessed I am to be able to do these simple chores of daily life. Okay, sometimes I’m sad. Sometimes I’m silly! But, mostly, I’m just grateful for life.

Next time: Ostomy 101 (I’m giving you fair warning about the topic in case you’re squeamish…)

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Yesterday I went down to Albuquerque for my first visit with an ostomy nurse. Tasya went with me and, as usual, when I was struck mute by the overload of information, she jumped in and asked the questions that needed asking.  Thankfully, she’s had some experience with colostomies, with both her mother-in-law and her aunt having them! So she knew to ask all kinds of details I had no inkling about.

Besides getting some education about living with a colostomy, the main reason for this appointment was for Carla, the ostomy nurse, to mark the spot for the surgeon to place the stoma. In order to find the optimal place on my body, she had me stand, sit in a chair as I would normally, slouch in a chair (as I would when relaxing), bend over like I was picking something up off the floor, and generally move around as I normally do. She observed carefully as I did each of these things several times, then she placed a mark on my belly and had me do everything all over again. Carla watched the mark closely as I repeated each of the movements, then announced, “I like it.”

"X" marks the spot

I laughed and said I was glad she liked it! Any chance I was ever going to like it?  Throughout the appointment, she was really very kind and told me over and over that I was going to do just fine.

She also spent some time showing me several different “bag systems” so I could get an idea of the many options out there to choose from. Carla said they’d work with me over time to find the system that seemed right for me. Of the bags she showed me, I naturally gravitated to the “Cadillac” of the group! (If you know me at all, you’re now thinking to yourself: of course she has to have the most elegant version, even in ostomy bags!)

I also learned a little something about stoma caps. Carla seemed to think I would be a good candidate for eventually trying a method of irrigating daily (essentially an enema given through the stoma) and then wearing a “cap” instead of a bag. I really liked this idea – but we also discussed that I would have to see how things went with a bag for a while and work toward the cap option over time. With a colostomy, you really have no control over when elimination is going to occur, hence the need to wear a bag all the time. But, apparently by irrigating daily, it’s possible to train the body to eliminate at the same time each day and then not need to wear a bag constantly. Hey, you learn something new everyday!

Tasya and I left there with an armful of literature, samples, catalogs and even a DVD for me to watch (honest to God, it’s called Ostomy Educational Theatre. Betcha won’t find that at Netflix!). We quickly dumped everything in the backseat of the car and high-tailed it to Starbucks.

On Friday I have my pre-op appointment at Presbyterian Hospital, where they’ll do lab work, take X-rays and do an EKG – all to make sure I’m healthy enough to have surgery. It will be my first chance to see how I like the hospital I’m going to spend about a week in soon.

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Now that the treatment is over, there are fewer appointments scheduled – but the next round looks like this:

  • Thursday Oct. 22 – Office visit with Dr. Fekrazad (blood work and follow-up on Xeloda)
  • Wednesday Oct. 28 – Pre-surgery office visit with Dr. Rajput
  • No date certain – Flexible Sigmoidoscopy (w/ Dr. Rajput, to assess my response to the chemo and radiation treatments)
  • Tuesday Nov. 24 – Colorectal Surgery @ UNM Hospital in Albuquerque

In addition to these appointments, I am still trying to find an Ostomy Nurse to meet with in advance of surgery. I’m told they can be invaluable in preparing you for dealing with a colostomy (the next big hurdle…).

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