Still in NY

The ride to NY the previous evening was horrid. The phantom urgency was on the prowl and did not like the car ride at all. I was suffering bad when we pulled into the driveway. Only day two of the Lyrica at that point. 75 mg 2x a day and a decrease in Nuerontin by 800mg a day, so I am only taking it twice a day now.

I am still in NY. I will go back home around 4pm. We are trying to relax today and take it easy. Yesterday, I had my Doctor's Appointment to have the Urostomy tube come out. That was the easy part. My doctor was the one to teach me how to self catheterize. He went as slow as I needed him to and did not rush me. First he put 240 or so cc's of saline into my suprapubic tube (can't exactly remember the amount he put in) I told him when it was getting full and starting to hurt and then he stopped. Then he removed the Urostomy tube which went smoothly. Then he put lots of lubrication on the stoma itself and on the catheters that he wanted to try. He brought several different ones in to try out. First we tried it with me laying down. We tried two silicone red rubber catheters a straight tip and a coude tip, they went in, but it was very painfuln and nothing would come out, no saline or urine. We switched me to a sitting position.Then we tried an easy catheter which was not too hard but not soft either. It went in much easier, still hurt, but it went in and the saline and urine came out. Then I took off the Urostomy dressing (wafer) and cleaned it all up with warm water and a little bit of soap) Then I threw on a square bandaid. Despite all of our efforts to keep my underware dry, it didn't happen so I had to change underware (luckily) I had a change of cloths with me. I changed my unders, then I got dressed. I also brought all of my own supplies just in case so I anchored down the capped off suprapubic with my own tape. After I got dressed, I asked my Surgeon to explain the surgery to me and use a diagram so I could see what he had done and understand the new "urinary tract" so to speak. He also gave me several of the easy catheters to take home and a script for more of them. He also put in a call to my Urologist at home to explain how the appointment went and what we did and what catheter we ended up going with and how the next 2 weeks would go. Supposedly over the next two weeks I am to self cath every 3-5 hours. I feel comfortable with 3-4. The suprapubic is to stay in place capped off and I am to pretend that it's not there and only use it as an emergency. When I am comfortable with self-cathing, the suprapubic will come out and eventually close up and then I am on my way well into recovery and learning my continent urinary diversion. Catheterizing after that point for the rest of the day was not easy and there was some pain involved. I ordered different types of catheters to arrive at my home before I left for NY but they had not yet shown up so I am stuck with the one that we used in the office that worked while sitting up. My Husband says the catheters have arrived and are waiting for me to come home and try them out to see if there is an even better fit. If not, the one I am using, I am sure I will get used to in time. It will be a bit easier once I am home and it my own environment. It will be more relaxing. Over the next several days I will learn how to navigate my urinary tract with the catheter and hopefully it will get easier. I am confident that with time, and the right catheter and position, that it will ease up. By bedtime I had had enough of catheteizing the stoma and tract, so I decided while the suprapubic is still in place, that I would use it to drain my urine for sleeping. I also took an Advil to reduce the inflamtion that the day had caused me. It worked out very nicely and as soon as I got up, I capped it off and catheterized the stoma to make sure it was still open. It was tight but open. I will self cath up until we leave for home and then I will use the bed bag for the car ride. At this time I don't want to have to deal with the dirty public restrooms. I'd like to avoid an infection. Depending on what time I get home and how the ride was, I will decide if I want to keep the night bag on or start cathing again. Hopefully over the next few days I will be able to cath all the way through the day and night without the aide of the suprapubic but at this time I am trying to make life as easy as possible for myself. It's hard enough dealing with all of this new stuff and the phantom pain and the car ride home. Let's not push the envelope here. I'm only on day 4 now of the Lyrica. I can't tell if it's working fully or not. It is working a bit but I am cautiously optimistic and will keep on going with it. Walking around the block seems to help the phantom urgency a bit. So I am going to start doing that at home.

Positives for the weekend: Urostomy tube is out, I am one tube free, leg bag won't have to be used with the suprapubic so I am lighter, got to see my surgeron have his full attention and help! The Lyrica is having no horrible side effects on me, its not making the urgency worse! I am sleeping without the aide of a sleeping pill. The Lyrica seems to help me sleep better. So I am sleeping pill free for the moment. One less pill to take. I'd like to diminish my pills down to just two medications a day. Stoma looks great! It's getting smaller and becoming more flush with my skin. There is no leakage as of yet (crossing fingers) so the band aids will do for now. I'm on the road to learning how to use my stoma and diversion.

Notes:
Need to order some lubrication (specifically traveling package sizes so I can just use and throw away)
Need to see if I can get a precrption of lidocane jelly to make cathing easier as I begin
Need to find a band aide that does not hurt my skin
Need to try out the new catheters and see if there is a better fit
Need to follow up with Local Urologist
Need to see if I can find an ET nurse in my area (no luck yet)
Need to call the Universtiy Hospital to see if My Insurance covers Biofeedback and Evaluation for Pain Management.