Thursday, December 31, 2009

Happy New Years Eve

Training is going well...had a rough night tuesday, but was much better last night. I can't wait to hit each milestone...Monday to 4 hrs if I can tolerate...if not 3.5 hrs with a gradual build up. I'm trying to name this stoma like I did my last one. My kids named it Fred...I don't think I want that name again. Maybe I'll go with Tulip...since it looks like two lips...LOL! Looking forward to ringing in the new year with a new lease on life. Happy New Year 2010!

Monday, December 28, 2009

Training Day op day 20

Went to see Dr. Launer today...he removed the catheter and put me on a training schedule. It was really weird driving home with no tube or gravity bag. I kept holding me stoma and I find myself holding it while I'm walking. I'm sure at some point I will stop that. So I got home after visiting my office for a short while and had my first intubation only for nothing to come out...I stood there for a couple of minutes and decided I should flush to get it going...that seemed to do the trick, however I'm not really sure if I emptied as best as I could or not. I guess I will find out in the next 3 hours when I intubate again. I need to drink more grape juice....can't have sludge in there. Wish me luck!

Saturday, December 26, 2009

Day 18

So I decided to venture out and see a movie today...I felt my stomach muscles could handle it...boy I was wrong. The movie was hilarious and my muscles tighted up pretty bad...takes massaging to get them to relax. I saw "It's Complicated"...highly recommend it. The odd thing though was I became incredibly anxiety filled and that freaked me out a bit. I put my gravity bag and as much of the tube in one of my eco was the best cover-up i've had yet. But I could not get comfortable in my chair...worried every 5 minutes about the was a horrible feeling. Thank goodness the movie was funny and kept me distracted a bit. I hope this feeling goes away and I don't experience this when I'm on my training schedule.

Merry Christmas

Posting just past the day but wanted to get in what a great past ae days I've had. Although I couldn't enjoy some of the fish dinner we had xmas eve, I did enjoy a bit of it for xmas. I let everyone be the test dummies to make sure I wouldn't get sick. I only feasted on the crab salad and shrimp, not the muscles, calamari & linguini w/clam your mouth watering yet? Today I enjoyed eating leg of lamb & potatos for dinner. It's sad when you look forward to food and hesitate to eat in fear it will cause a blockage or will not pass thru the catheter or will be very thick. I'm sure I just made you lose your appetite. Talking about crap comes to easy for patients like us. Nothing phases us any more. The nice thing about today was surprising my oldest son with the amp head he's been wanting and finally turning that corner and having great energy and umph. I don't know how to explain's like my body said.."Ok let's get movin today..enough of the tired, sluggishness". I feel if I can only sleep. 3 more days til catheter comes out and I can sleep normal and go places without a tube and bag hanging from my belly. I think I've scared enough people.

Nite nite

Thursday, December 24, 2009

Day 16

I haven't posted in a's a catch up. Was doing great once I left the hospital on the 14th until the late hours of the 22nd. I've had some anxiety intubating and I'm still getting used to the catheter being in there, but I only have until the 28th when it is removed permanently and I start my "pouch training"....that will be a difficult schedule, but better than walking around with a tube in me. I have to say that I really don't care where I go...I carry that thing with me and try to hide it under my coat as best as I can and of course keep the nasty side towards me (I do have respect for others). I just don't want to stop my life for this. I had a set back the other day...woke up to being pouch was pouring out liquid...anything I put in came right back out. I went to the local ER (big mistake) and they admitted me. I was concerned about dehydration. I think I got some 24 hr stomach bug. Torrance Memorial sucked! Not even the GI doctor I saw knew about the K-pouch. Basically they pumped me with fluids and antibiotics and asked me a lot of questions. I should have made the drive to La Jolla and been near my doctor, but it all worked out and I'm home for the holidays. My kids & family were going to postpone it all until I got's just not the same if we are all not there together. I'm looking forward to watching everyone eat our traditional seafood dinner tonight and enjoying watching my nephews & little cousin open their gifts. They are ages 2.5, 1.5, 5 mos. Mine are now 17 & 14 and this year I have managed to hopefully surprise them. You know they make their list (all the super expensive stuff) and you try hard to get at least one thing, but every year they figure it out...this year I think I have at least one of them. I can't wait to see his face tomorrow.

checking out for the day....Happy Christmas Eve

Tuesday, December 15, 2009

Day 5 & 6

I couldn't get on Sunday & Monday so I'm posting for both days. Sunday I was still feeling nausea, but got over it on Monday...just in time to go home. I am home now...didn't have too bad of a night and just getting used to it all on my own. My medena keeps coming out so I'm going to try taping it...we'll see how that goes.

Saturday, December 12, 2009

day 4

Today was a mixed day. Finally started eating food..that was good only they brought me all the food I wasn't supposed to eat so I got upset. Between that and the removal of my pain meds I wasn't in a good place. I snapped at everyone and felt really bad. After calming down and getting some pain meds (only cause I started to withdrawal) I slept it off and woke up in a better state. My ostomy nurse came in and we removed the medena and I was able to take a nice shower. It felt great. I was scared to intubate but it wasn't so bad. Just weird sticking something into your body you think its going to hurt but there are no nerve endings in the intestines. I did however discover today that my butt hole was sewed shut. I had a feeing but chose not to investigate that before the surgery. I wonder what it will look like when its all heeled. I've managed to be in a better place this afternoon and hope I have a good nights rest.

Friday, December 11, 2009

day 3

Today started out with news that my blood levels dropped below 7 and it was time for a transfusion. I've never had one so I was a little nervous. Well the first bag went fine but when we put the 2nd bag on about 15 minutes in I started a fever. They immediately stopped the tranfusion and disconnected everything. We thought it was a reaction to the transfusion. I got really scared and I was really tired. We took a urine sample but nothing showed up. So with my temp increasing they decided to run more tests. Chest xray for a cough I have, more blood draws (feel like they took all I got) and another urine test. this was earlier in the day and at 7:30pn I was told that I did in fact have a UTI. I was very relieved. Now getting antibiotics and should be getting that cleared up. They are typing me now to continue the transfusion. Let's pray this was the worst day.

Thursday, December 10, 2009

day 2

Started my day @ up to be weighed and went for a walk. Stayed up in bed for a while. Dr Launer came in and said everything was doing good, but my blood count was a little low and I am on the boarder of getting a blood transfusion. I'm praying my count increases and I don't need one. I'll know in the morning. In all my surgeries I've never had one and I really hope to keep it that way. I got up and walked quite a few times today and was able to have the catheter removed. I'm feeling really good considering and see myself getting stronger each day. Tomorrow I will learn how to use my catheter to intubate. I'm a little nervous but ready. I've been watching the nurses irrigate and so far so good. I told my grandma that I had the surgery and ended up crying. The realization that my jpouch is gone and I have a new one. Its a huge loss for me, but its now a new adventure. I hope I will get used to this quickly and get my life back on track free of pain.

Wednesday, December 9, 2009

surgery day & day 1

The day started @ 5am with the washing of my body with this anticeptic soap. Mom & I took the time to get ourselves ready to go. We met a lovely lady & her daughter in the waiting room. She unfortunately found cancer in both lungs. I feel so bad for her but she came out & first thing she asked was how I was doing. Someone suffering so from the news & all she was thinking about was me..a complete stranger. there are wonderful people in this world. Oddly enough I asked about her as well as soon as I was coherent enough. It's amazing how people connect. Ok back to op nurse was Kaye, a very kind, gentle woman. The anesthesiologist was Lars, a very tall man who didn't strike me as an anesthesiologist, but he did a great job. My Dr who held my hand while they put me under. I knew I was in good hands..God & my guardian angels were watching over me. I was feeling nausea before dr launer came in & then I felt the calm come over. I felt myself drift off to lala land & then waking up in post op. I was nauseas all night but it subsided by midnight..thank goodness. The nurses were kind enough to move me to a private room because they heard my mom wanted to stay & they didn't want her sleeping in the lounge. So far everyone @ this hospital has been great.

I slept when I could..they come in what seems to be every hour to check your vitals & empty tubes which I have quite a was a feat to get up this morning to get on the scale. I think it took 10 minutes just to get the tubes untangled & in place. I managed to get hurt like a bitch. Most of my pain is under my rib cage so it hurts to breath. Dr Launer came in this morning & he said he was incredibly happy with the pouch. He couldn't use the old one but he said I had really good tissue and was happier to use that and create a new pouch. He said he's done a lot & can tell I have a great pouch & will do really well with it. That made me feel great! He is so reassuring & said I should be home by monday. I hope that each day gets better & that I will become a pro at emptying. He said I have a new lease on life. What more do you want to hear. Thank you to my mom for being here with me & always being by my side. I know my caring genes come from her. Bye for now!