I'm writing this post as I sit in my hospital bed, 2 days post op. Holy cow this round was a hell of a difference from the first surgery.
I'm normally a tough chick and very rarely cry from pain, but yesterday I reached my limit. I was in the worst pain I have ever been in. It was the most excruciating pain I had ever experienced and the pain pump (aka a PCA or Patient Controlled Anethesia) I have wasn't helping. Again mom spent the night with me and she went to go get the nurse to see what they could do. At that moment the doctors were making their rounds and the came in. I told them about the pain and they said they would give me a bolus of the pain medication as well as increase my pain pump.
They also did their regular exam on me but this round is a bit different. I currently have 2 drains in me. 1 goes into my abdomen and acts as our little spy. It lets us know if anything wrong is going on in there depending on what the color of the output is. So far its been great and no issues. The 2nd drain is on my bikini area. The doctors needed to make a larger incision to do the procedure, and because of the size, it is packed with a wicking type material. This gets changed as needed. Well when the doctors made their rounds, it needed to be changed. Now remember, I'm in the worst pain I've ever experienced. The doctors decided to change the dressing and started pulling the adhesive away. I lost it! I started screaming in pain and told me to take a deep breath. REALLY????? A deep breath? Yeah I wasn't having it at all. They proceeded to pull and I started screaming again. I think I may of scared the intern doctors. They finally stopped and said that we would get the pain under control and try again later in the afternoon. The main doctor looked at me and asked if that would be alright and I replied "as long as you use adhesive removal wipes next time." She smiled and said that they would. WHY DIDN'T YOU BRING THEM IN THE 1ST PLACE ?!?!?!?!!?!?!?
After they left I got my pain meds and things started looking up and getting better. I took a small walk and that got things flowing in my drain and my uninary catheter.
I was on a clear diet and ate everything they brought me and was drinking liquids thru the day, but my gut was taking its sweet time to wake up. Over night though it woke up and around 5ish this morning my bag was like a water balloon. So happy about that! The sooner it starts working, the sooner I can start on a mechanical diet, which means soft food I can chew and not just broth, and the sooner I can get out of here.
So my goal today is to walk more than I did yesterday. Last surgery I was walking laps around here, this time not so much, but I'm going to try!
Thursday, May 8, 2014
Round 2
Tuesday, April 29, 2014
So you wanna take a shower...
I truly love taking showers, washing the gunk off of you from the day. Sometimes nice and hot, other times lukewarm. But with an ostomy bag, it's not a simple jump in and out kind of thing.
First off, are you going to change your bag when you get out. No? Well dont forget to put your little sticker over your filter opening. I have bags that have a handy charcoal filter that "helps" get rid of the gas and certainly helps with any smell. If I dont put the sticker on the bag, it makes the filter wet and pretty much useless. I'm sad to say, I've forgotten more times than not to put the sticker on my bag. Trying to keep something on the front of your stomach dry or at least not soaking wet is quite a task. Yes, yes I could've stopped and put the sticker on, but first I would have had to dry the bag off somewhat, so I just play dodge the water. After you get out you also need to dry the bag off. I have a sort of cover that adds an extra barrier against the bag & my skin to make it a tad bit more comfortable.
Now, if it's a day to change your bag, there's a whole new set of things you have to do and get ready for after the shower. Sounds strange, but these days are my absolute favorite days. It give me some time to feel like a regular person. So before you get into the shower you need to get your supplies out and ready. I even get multiple of some items in the event she gets a bit "talky". I have my wafer (the bandaid part that holds everything to my skin. This part you have to cut the opening to fit the stoma. I have a moldable kind which I prep before hand), bag which HAS to be closed FYI, barrier ring (A ring that goes around the stoma as an extra barrier and 2 just to be safe), adhesive remover, stoma powder (a powder I put on my skin as an extra barrier to keep my skin as happy as it can be), skin barrier wipes (again 2), 4×4 gauze squares, and lastly a bag to put the bag and trash into.
The reason I have 2 of some items is if she gets talky while I'm changing the bag, I obviously can't reuse the some items so I have learned it's better to have more than not, and then rushing to get more supplies. It's like that game Pop o Matic. You know it's only a matter of time before it pops up, but this case, spew all over the place. This is also where the gauze comes into place. I wrap it around as a little diaper to "prevent" any messes.
So, now I have everything and I start to take the bag off. Just as I finish up, I go to start the shower. Once I finish I rush to dry off my stomach, then cover it with the gauze. I dry off the surrounding area and start assembling my bag. It goes like this, completely dry, powder, skin barrier wipe, barrier ring, and then wafer. I then apply pressure to the waffer for a few minutes while I finish drying off.
And like that, I go on with my day. It adds about 10-20 minutes to shower time, depending on how feisty she is and if she enjoyed her marshmallow enough to shut her up, you know women haha.
Thursday, April 24, 2014
Update
So it's been 10 weeks since my surgery and I am happy to say that things are going great. I have gotten the whole bag thing change down, although there are days my stoma does not want to cooperate so things get a bit trying and messy, but I have to keep going since I really don't have an option :)
My PICC line came out on 4/11 and that shower after was AMAZING! My outside of my arm had only been washed with a wash cloth and baby wipes so to wash and scrub the entire arm was like heaven. It is still a bit "gunky" in that I still find bits of adhesive on my arm (like this morning) and it is very dry so I lather it all up with lotion and it is very happy.
Today was my post op / pre op combo appointment. It has been 10 weeks since my first surgery and the surgeon is very happy with my progress so far. We then discussed the next surgery, which is May 6th at 7:20am. This is the most complicated surgery of the 3. They will be doing what is called a Ileostomy Reversal, with an ileal pouch anal anastomosis, flexible pouchoscopy (flex sig) and a laparoscopic diverting loop ileostomy. A lot...I KNOW. Basically, they are reversing the pouch I have now (ileostomy), moving things around thru the anus and then creating the loop ileostomy. In even more basic terms, they are taking 2-3 feet of my small intestine (the part sticking out) creating the J-pouch, and then giving me a loop ileostomy (cutting a hole in my intestine, and securing that part to the outside)
My PICC line came out on 4/11 and that shower after was AMAZING! My outside of my arm had only been washed with a wash cloth and baby wipes so to wash and scrub the entire arm was like heaven. It is still a bit "gunky" in that I still find bits of adhesive on my arm (like this morning) and it is very dry so I lather it all up with lotion and it is very happy.
Today was my post op / pre op combo appointment. It has been 10 weeks since my first surgery and the surgeon is very happy with my progress so far. We then discussed the next surgery, which is May 6th at 7:20am. This is the most complicated surgery of the 3. They will be doing what is called a Ileostomy Reversal, with an ileal pouch anal anastomosis, flexible pouchoscopy (flex sig) and a laparoscopic diverting loop ileostomy. A lot...I KNOW. Basically, they are reversing the pouch I have now (ileostomy), moving things around thru the anus and then creating the loop ileostomy. In even more basic terms, they are taking 2-3 feet of my small intestine (the part sticking out) creating the J-pouch, and then giving me a loop ileostomy (cutting a hole in my intestine, and securing that part to the outside)
So this is the next step for me. This is the most complicated surgery of all 3 and I may be in the hospital longer than with the first, but only time will tell.
As for my liver, my bloodwork from today show that the levels that were elevated are still coming down. We are still in the high range, but still getting closer to the normal ranges. A battle I've been fighting for the past 10 years and slowly been winning.
Saturday, March 22, 2014
Appointments and supplies
***Warning, there is a picture of my stoma in this post***
Well I am officially 1 week post surgery and almost 1 week being back at home. Man it feels great to be a "normal" person again.
So this week was my visit with the Wound and Ostomy care nurse, Lenore. Well she showed up and we spent a good while talking about my surgery and getting a medical history on me. I should have known there would be an issue with her when she could not figure out how to turn the brightness up on her tablet the company provided her with so she just wrote everything down. She then informed me that she would need to see me 3 times a week and that I would have a co pay of $30 a visit ($120 a week). Now, we were told that this service was completely covered by my insurance and I told her that I would mail the check in. Once we got all the formalities out of the way it came time for her to show me how to change my bag and wafer, or so I thought.
It was clear that when she showed up she was expecting someone who was older than I was and not as mobile. She told me that I needed to lay down so she could change the bag. I replied "Then how will I see what you're doing? Aren't you supposed to show me how to change it?" She answered, "Well I guess I could." You guess you could? Gee that makes me feel confident. Luckily for me, I had done my homework and watched a few videos when I was told I would be under going the surgery so I already had the items I needed downstairs for the change. She then proceeded to open the "ostomy pack" I had made for mom & dad in the event I was stuck downstairs and needed a new bag. It included a wafer, a bag, a skin barrier, 3 adhesive removal wipes, a skin barrier wipe, and a single pair of gloves.
She put the gloves on and started to pull the wafer off of my skin. This wafer had been on my skin since Thursday and it was now Tuesday. I told her to hold on a second and to please use the adhesive removal wipes! IT HURT!!!! We then got the wafer off and then she just looked lost. I had the template that the ostomy nurse gave me in the hospital of my stoma and I showed it to her. She tried to trace and cut the wafer on the wrong side. There are 2 sides to the wafer I have. 1 side had the adhesive that sticks to your skin and the other has a raiesd flange that connects to the bag. She was trying to trace and cut on the flange side. Yeah not going to work. I took the wafer, flipped it over and then proceeded to trace and cut the hole and place it on me, all while she just sat there with my gloves on.
After about her being here for close to an hour she left and I proceeded to call the service to let them know about her, to let them know that I did not think it was a good match and that I would like someone with a bit more ostomy knowledge, and that 3 times a week was a bit excessive in my book. The manager sounded a bit shocked that Lenore was planning on coming out that often and told me that I would have a different nurse and the replacement nurse will be coming by on Mondays to check my stoma and incisions.
This is 1 week post surgery
I also had a visit from the PICC nurse on Thursday. That was another crazy appointment, but not as bad as Lenore. Since I have the PICC line, I need to have the dressing changed weekly which normally takes about 15-20 minutes. All they do is come in and replace the adhesive that is covering the line and holds it in place. The service called me and asked me if Thursdays worked and if 10 am would be fine. I told them that was great and would have my fluids done by then. So I woke up early and got started on the fluids, finished up around 9:45 and then started getting cleaned up for the nurse. 10:30 rolled around and I called them. They asked if Steve had contacted me about a time and I reminded them that THEY told me a nurse would be out around 10 and that no one had contacted me. They informed me that he was probably with a patient and that he would call me to arrange a time. He called around 12 and asked if 1:30-2 would be fine and I replied that it would be ok. I then received a call around 1 by Janet letting me know that there was an issue with Steve and if 3:30-4 would work. now by this time I am getting really frustrated with all of this. I sighed and replied, "I don't care what time as long as it gets done today." Luckily she showed up and the dressing was replaced, but 6 hours after it was originally scheduled.
Now for the supplies...holy cow! You lose your colon but you have wafers, barriers, bags, adhesive removers, skin prep wipes, gloves, and optional bag deodorizers that you have to try and order. You go to the company websites, BUT YOU CAN'T ORDER THE SUPPLIES THERE! You have to go to an outside site to order. Its just a pain in the stoma and I need to get the supplies orders Monday YIKES. And then with the PICC lines, you have liter bags, lines, saline, heparin, alcohol wipes, caps, daily blood thinner injections. Luckily the company who supplies the nurse also sends the supplies so they just call weekly to find out how much I have left over and ta-da Friday the supplies show up at my doorstep :)
I am hoping that this upcoming week will be better with the nurses. Plus I also have my 2 week recheck coming up on Thursday so I am excited to see what the doctor has to say about my progress.
Well I am officially 1 week post surgery and almost 1 week being back at home. Man it feels great to be a "normal" person again.
So this week was my visit with the Wound and Ostomy care nurse, Lenore. Well she showed up and we spent a good while talking about my surgery and getting a medical history on me. I should have known there would be an issue with her when she could not figure out how to turn the brightness up on her tablet the company provided her with so she just wrote everything down. She then informed me that she would need to see me 3 times a week and that I would have a co pay of $30 a visit ($120 a week). Now, we were told that this service was completely covered by my insurance and I told her that I would mail the check in. Once we got all the formalities out of the way it came time for her to show me how to change my bag and wafer, or so I thought.
It was clear that when she showed up she was expecting someone who was older than I was and not as mobile. She told me that I needed to lay down so she could change the bag. I replied "Then how will I see what you're doing? Aren't you supposed to show me how to change it?" She answered, "Well I guess I could." You guess you could? Gee that makes me feel confident. Luckily for me, I had done my homework and watched a few videos when I was told I would be under going the surgery so I already had the items I needed downstairs for the change. She then proceeded to open the "ostomy pack" I had made for mom & dad in the event I was stuck downstairs and needed a new bag. It included a wafer, a bag, a skin barrier, 3 adhesive removal wipes, a skin barrier wipe, and a single pair of gloves.
She put the gloves on and started to pull the wafer off of my skin. This wafer had been on my skin since Thursday and it was now Tuesday. I told her to hold on a second and to please use the adhesive removal wipes! IT HURT!!!! We then got the wafer off and then she just looked lost. I had the template that the ostomy nurse gave me in the hospital of my stoma and I showed it to her. She tried to trace and cut the wafer on the wrong side. There are 2 sides to the wafer I have. 1 side had the adhesive that sticks to your skin and the other has a raiesd flange that connects to the bag. She was trying to trace and cut on the flange side. Yeah not going to work. I took the wafer, flipped it over and then proceeded to trace and cut the hole and place it on me, all while she just sat there with my gloves on.
After about her being here for close to an hour she left and I proceeded to call the service to let them know about her, to let them know that I did not think it was a good match and that I would like someone with a bit more ostomy knowledge, and that 3 times a week was a bit excessive in my book. The manager sounded a bit shocked that Lenore was planning on coming out that often and told me that I would have a different nurse and the replacement nurse will be coming by on Mondays to check my stoma and incisions.
This is 1 week post surgery
I also had a visit from the PICC nurse on Thursday. That was another crazy appointment, but not as bad as Lenore. Since I have the PICC line, I need to have the dressing changed weekly which normally takes about 15-20 minutes. All they do is come in and replace the adhesive that is covering the line and holds it in place. The service called me and asked me if Thursdays worked and if 10 am would be fine. I told them that was great and would have my fluids done by then. So I woke up early and got started on the fluids, finished up around 9:45 and then started getting cleaned up for the nurse. 10:30 rolled around and I called them. They asked if Steve had contacted me about a time and I reminded them that THEY told me a nurse would be out around 10 and that no one had contacted me. They informed me that he was probably with a patient and that he would call me to arrange a time. He called around 12 and asked if 1:30-2 would be fine and I replied that it would be ok. I then received a call around 1 by Janet letting me know that there was an issue with Steve and if 3:30-4 would work. now by this time I am getting really frustrated with all of this. I sighed and replied, "I don't care what time as long as it gets done today." Luckily she showed up and the dressing was replaced, but 6 hours after it was originally scheduled.
My daily companion
My PICC line. It looks red/orange because we used betadine instead of chlorhexidine since that stuff made my skin irritated and burned on Saturday :(
Now for the supplies...holy cow! You lose your colon but you have wafers, barriers, bags, adhesive removers, skin prep wipes, gloves, and optional bag deodorizers that you have to try and order. You go to the company websites, BUT YOU CAN'T ORDER THE SUPPLIES THERE! You have to go to an outside site to order. Its just a pain in the stoma and I need to get the supplies orders Monday YIKES. And then with the PICC lines, you have liter bags, lines, saline, heparin, alcohol wipes, caps, daily blood thinner injections. Luckily the company who supplies the nurse also sends the supplies so they just call weekly to find out how much I have left over and ta-da Friday the supplies show up at my doorstep :)
I am hoping that this upcoming week will be better with the nurses. Plus I also have my 2 week recheck coming up on Thursday so I am excited to see what the doctor has to say about my progress.
Saturday, March 15, 2014
Cool Stoma Bro
Just a heads up on my posts there will be poop humor. If I can't stay light and have humor about this whole situation and path, then I'm sorry...for you.
Well it's official, I have completed my start to getting healthier! It has been a crazy five days and so far so good. Lets go back to Tuesday the 11th.
Tuesday March 11th, 2014: We, myself, mom, and dad, had our check in at UCSD La Jolla Thornton Hospital at 5:30am and needless to say we were all pretty tense but I was keeping my cool so that it would hopefully calm mom and dad down some. I figured if I was tense and worried it would make them worry more than what they already were. I got my nifty hospital bracelet and we headed up to the pre-op check in. Mom and I already knew where it was since we had been there a few times before for my colonoscopies, but that morning it was different. Usually we had a wait before anyone even realized we were there, but not that morning. As soon as we got up there, there was a nurse waiting there for us and she whisked me and mom to the back where I got into my {sexy} hospital gown. Although I will say it was the kind that blew up with warm air which I truly enjoyed. Next were the normal pre-op procedures, blood work, a million questions about medical history and medication, IV line placed, and then of course...the waiting. Remember check in was at 5:30, but my surgery was scheduled for 7:30am, so the 3 of us had some time to kill listening to the monitors beeping and other people coming in and getting set up as well. Along with the prep work it was meeting with the assistant to Dr. McKlemore (my surgeon), a few residents since it is a teaching hospital, the anesthesiologists, and the assistant again, and then finally the ride into the surgery suite with the an anesthesiologist. I gave mom and dad a hug and a kiss, told them I would be fine and off I rode into the suite. They put an oxygen mask over my nose and mouth, told me to take some deep breaths, a nurse told me they were going to put some cuffs around my legs to help with the blood flow, the anesthesiologist then told me that they were starting to give the medication and the last thing I remember saying was, "Yep, I;m starting to feel it."
The next thing I remember was waking up in the recovery room with the nurse, Anna, and a parent. Honestly I am not sure who was there with me first because I kept dozing in and out and every time I woke up it was either mom or dad. Anna however was always there until I was fully awake and I heard someone bringing it up that she was retiring, so I locked that away somehow. We made sure every step along the way we asked for a private room and I'm sure as soon as they told mom and dad I was out of surgery, mom was asking again for the private room. I would say I was fully aware of what was going on by 2pm and that's when mom told me that the surgery took only 4 hours (we were told 5-5 1/2 hours) and the doctors were extremely happy with how I looked and how the whole procedure went. We finally made it up into my private room around 6ish Tuesday night. As Anna left me in the room I remembered to tell her congratulations on retiring and she left with a huge smile on her face. I was also lucky enough that my son, Caleb, his mom Cindy and sister Nikki were in Del Mar and they stopped by to see how I was doing.
After dad, Caleb, Cindy, and Nikki left, mom and I got all settled in and man was mom was such a trooper! She stayed the night with me on the little fold out chair bed they had there. It was nothing more than springs, but of course she wasn't going to leave me alone that first night. So there we were, 2 peas in a pod, besties, by each others sides for the first long night, no idea of what was in store for either of us, but we would do it together.
Wednesday, March 12th, 2014: My first 24 hours with the pouch and a day full of meetings. I have to say it feels weird. The only way I describe it is as if you have maybe 5 layers of duct tape stuck to your stomach and you know you CANNOT take it off! If you have an itch you try your best to scratch it, but you cant really do anything about it. The night was a rough one. The nurse and her student was in about every 2 hours to check vitals and to give me good ol' pain medications. I was not a patient with a PCA (patient controlled anesthesia) pump so I was dependent on them for the pain control, but luckily the pain never really got any higher than a 7 my entire stay. Another reason they didn't have me on a pain pump was because the medications slow down the gut response and keeps them from "waking up" after surgery and in order for me to go home they needed to be awake.
The doctors showed up extremely early, like 5:30 early! It was the assistant I met in pre-op as well as some residents and another doctor. Later in the day I also met with McKlemore and she told me how happy she was with the surgery and she took a look to see how I was doing.
I also met with my case manager for my stay there who was going to get me all the home care and physical therapy I needed before I would be able to go as well as I met with the Occupational Therapists. The OT showed me the easiest way to roll out of bed and got my up and out of bed. The farthest we got was just to the chair, but later that day I did take a walk around the ward with a nurse and mom and then later 1 with dad. They have an incentive chart for the patients to get up and walking. It's nothing more than a simple white board with rows, numbers and a magnet that you get to move along as you make your laps. 26 laps and you have walked a mile AND you get to pick your choice of "destination" magnet once you have reached the "finish line". I also {ate} for the first time since Monday's prep for surgery. I was on a full liquid diet which ranged from some sort of broth, juice, as much water as I wanted, and sometimes jello. I also received another visit from Caleb, Cindy and Scott (highlight of the day).
Thursday March 13th, 2014: Today was another day of learning about my pouch and the wonderful way it worked. We needed to empty it over night and I starting to notice when I would "go to the restroom". There is no way to control it and no real way to explain how it feels. It just feels like pressure and then a release. Now, sometimes with the release comes some noise, aka stoma farts. These can range from the high pitched farts to the, well there is no nice way to say it but the wet farts. Again I have no control over it and I'm apologizing in advance if I ever see you and I fart, I don't mean it :) OK good, we have gotten that out of the way.
Now back to the day. The nurses backed off to about every 4 hours over night and the doctors didn't come in as early (thank goodness), although mom was there at 5:30am just to make sure she heard anything they said. She went home Wednesday night and came back in the morning for a bit. Well the morning doctors don't really say anything much but they do like to mess with the bag and see the consistency of the output. I tell you that so I can tell you this. After the doctors left, I asked mom if she wanted to take a few hot laps around the ward. Oh I was also supposed to get up and walk four times a day to keep the gut moving and to help prevent blood clots (sorry for the side track). So as I went to get out of bed, I stand up and SPLOOSH! Either the night nurse didn't close the flap all the way or the doctor tugged it a bit too much on her rounds that it opened completely up as I stood up. All mom could say was " Ah shit!" I mean what else can you say in a situation like that! I started giggling and closed up the pouch and the nurses came in to clean up. After that we went on our little 3 lap walk. Again another day of meetings, walking, poking, and laying around in bed. By now, I was starting to get bored. I turned off the TV and started watching Netflix, but I fell asleep 3 times while trying to watch House of Cards (so good but don't let me falling asleep deter you from checking it out). My ostomy nurse, Cheryl, also came in and we changed my bag and she showed me the steps and some tricks on the easiest and best way to change my bag. Yes it is something that does not get changed daily, but every 3-4 days. You do rinse out the bag (I do at least 3-4 times a day) but you keep the wafer on 24/7. It is waterproof so I can take showers with it on or off and they do recommend you take a shower with it off at least once a week. "So what happens if your stoma act up while you're in the shower?" Ummm...you rinse it off and clean the shower. You still need to wash the skin and since you have no control, you just kind of roll with it. Rollin' without a colon ;)
I also met with the physical therapist. I needed to meet with them to show them that I was able to walk up and down stairs since mom and dads house has them (14 exact) before I could go home, which of coursed I aced. There was no way I was going to let anything slow me down because there was a rumor going around that I MIGHT be getting discharged on Friday. I was also bumped up to applesauce level. I'll tell you what, that was some of the best applesauce I have had.
Friday, March 14th, 2014: Friday was a big day. Of course because of the possibility of my going home was stuck in my head but also because I was bumped up to a low residue diet (basically adding banana and peanut butter to my meals along with the added applesauce) but it also included Malt-O-Meal! WOOHOO! Big timer, I know! It was pretty much the same over night except I was pushed back to every 6 hours with the nurses and the same with the rounds, but the morning round doctor told me again that there was a really good chance I would be able to go home today. So as I had made it my morning routine, after or before the doctors, I got cleaned up and then go on my walk around the ward. But today was different (no my bag held fine today). When I got back, I had another try of food on my table, but it had an actual plate. I lifted it up and on the plate was a plain egg "omelet", 1/2 an English muffin, and some potatoes! REAL FOOD! The first real food since Sunday night family Mexican blow out! If I were to eat the omelet today I would say it was the grossest thing ever, but then, man it was so good!
Later that day, McKlemore came in and dropped some news on mom and I. Yes I would be able to go home today, but, I would need to have PICC line inserted. It is also known as a Peripherally Inserted Central Catheter. It is basically a long term catheter that stop right before it enters my heart.
The doctors were afraid that I was loosing too many fluids out of my stoma and this way I would be able to give me fluids at home daily and prevent me from becoming dehydrated. Plus in the event if I became dehydrated and did need to go to the ER, I would already have the IV placed instead of them trying to find a vein (no thank you, been admitted dehydrated before and that was no fun). This came as a blow to me and mom. Mom because she really did not understand all that was being said or what it all meant and as for me because I was already dealing with the bag, now I would have to deal with the line. This was one of the few times I cried since I got news about the surgery. I held it together while the doctor was there, but after she left I cried. Not sobbing, just crying. I knew it needed to be done for my health, but dang it, that's 1 more thing I have to worry about!
Around 1pm the PICC nurse came in and we had it placed in about 30 minutes. We still had no idea if I was leaving today but in the event I didn't and still needed the PICC, they are off on the weekends, so I would have had to wait until Monday. stay in the hospital for 3 more days, NO WAY! The x-ray techs came in shortly after to take a chest x-ray to make sure it was not in too far and the nurse told me if you see me again, it is in too far, and if you don't, then i did my job and it's in the right place. Well, I didn't see her again.
Then came the case worker again to finish up paperwork and to give me the news that I would be going home. Now, she gave no time, but I would be leaving the hospital that day. Dangle that carrot in front of my a little bit closer. A few hours later came in a home care specialist to talk to us about having the nurse come out once a week to change my dressing on the PICC line and to give us information on all of that. I will say this about my insurance, all of my home care, ostomy and nursing care, is covered. All I have to go is mail in a $30 check weekly for the PICC line nurse when they come out to change my dressing.
All paperwork was done and then the waiting began. Now I have a small idea how the military feel when they know they are told they can go home on leave, but they have no time as to when they can actually leave. But my last nurse Martin came in as I was coming out of the restroom with all of my discharge paperwork...FINALLY!!!!!!!!!!!
We finally made it home around 8 last night and man it felt great to be home.
Saturday March 15,2014: Was I in a dream? Nope I was back home in my own bed and man it felt fantastic. Woke up and headed downstairs and dad made some pancakes for breakfast and it seemed like any normal Saturday morning. Then I received a phone call from the company who would be dropping off my infusion supplies around 9am. It was honestly kind of like Christmas. I got a big box full of supplies as well as an IV pole to hang the bag off of. The receiver in dad came out to double check the delivery and my medical side came out helping him and the driver make sure everything was there. Mom was out doing some grocery shopping so I started labeling the items, dressings, IV lines, Saline, Heparin, caps, and put them all into 1 box. I wanted it to be as little as intimidating for mom when she got home because I knew this was something she was going to have a hard time with.
Around 10:45 the nurse showed up and the teaching started. I know how to flush a line and clean things off, but mom and dad did not so I wanted this to be a teaching for them more so than for me. I knew that if a nurse was here to go over the steps with them instead of me it would be more settling for them plus they could ask any questions they wanted. I also wanted them to know what a good line felt like God forbid anything happens to me and I need them to give me the fluids. Time for me to brag, they killed it! They prepped all of the syringes, cleaned my port, and hooked me up! Granted I did not have an extension on the PICC line yet so I needed them to do it anyways but now they know that they KNOW how to do it. Rockstar parents all the way! So just short of 3 hours of me being on the fluids I finished up and stayed on the couch.
This whole resting thing for me is really hard and if you know me, you know it is something I will struggle with at least for a bit while I am healing internally but I will tell you, if my parents had any idea of what kind of kid they were going to get with me, they would probably of had second thoughts about the whole thing. I have put them through so much, much more than any parent should have to go through and all while they stand right beside me with our Lord surrounding us with family and friends to help get us all through this.
I love you mom and dad!
Well it's official, I have completed my start to getting healthier! It has been a crazy five days and so far so good. Lets go back to Tuesday the 11th.
Tuesday March 11th, 2014: We, myself, mom, and dad, had our check in at UCSD La Jolla Thornton Hospital at 5:30am and needless to say we were all pretty tense but I was keeping my cool so that it would hopefully calm mom and dad down some. I figured if I was tense and worried it would make them worry more than what they already were. I got my nifty hospital bracelet and we headed up to the pre-op check in. Mom and I already knew where it was since we had been there a few times before for my colonoscopies, but that morning it was different. Usually we had a wait before anyone even realized we were there, but not that morning. As soon as we got up there, there was a nurse waiting there for us and she whisked me and mom to the back where I got into my {sexy} hospital gown. Although I will say it was the kind that blew up with warm air which I truly enjoyed. Next were the normal pre-op procedures, blood work, a million questions about medical history and medication, IV line placed, and then of course...the waiting. Remember check in was at 5:30, but my surgery was scheduled for 7:30am, so the 3 of us had some time to kill listening to the monitors beeping and other people coming in and getting set up as well. Along with the prep work it was meeting with the assistant to Dr. McKlemore (my surgeon), a few residents since it is a teaching hospital, the anesthesiologists, and the assistant again, and then finally the ride into the surgery suite with the an anesthesiologist. I gave mom and dad a hug and a kiss, told them I would be fine and off I rode into the suite. They put an oxygen mask over my nose and mouth, told me to take some deep breaths, a nurse told me they were going to put some cuffs around my legs to help with the blood flow, the anesthesiologist then told me that they were starting to give the medication and the last thing I remember saying was, "Yep, I;m starting to feel it."
The next thing I remember was waking up in the recovery room with the nurse, Anna, and a parent. Honestly I am not sure who was there with me first because I kept dozing in and out and every time I woke up it was either mom or dad. Anna however was always there until I was fully awake and I heard someone bringing it up that she was retiring, so I locked that away somehow. We made sure every step along the way we asked for a private room and I'm sure as soon as they told mom and dad I was out of surgery, mom was asking again for the private room. I would say I was fully aware of what was going on by 2pm and that's when mom told me that the surgery took only 4 hours (we were told 5-5 1/2 hours) and the doctors were extremely happy with how I looked and how the whole procedure went. We finally made it up into my private room around 6ish Tuesday night. As Anna left me in the room I remembered to tell her congratulations on retiring and she left with a huge smile on her face. I was also lucky enough that my son, Caleb, his mom Cindy and sister Nikki were in Del Mar and they stopped by to see how I was doing.
After dad, Caleb, Cindy, and Nikki left, mom and I got all settled in and man was mom was such a trooper! She stayed the night with me on the little fold out chair bed they had there. It was nothing more than springs, but of course she wasn't going to leave me alone that first night. So there we were, 2 peas in a pod, besties, by each others sides for the first long night, no idea of what was in store for either of us, but we would do it together.
Wednesday, March 12th, 2014: My first 24 hours with the pouch and a day full of meetings. I have to say it feels weird. The only way I describe it is as if you have maybe 5 layers of duct tape stuck to your stomach and you know you CANNOT take it off! If you have an itch you try your best to scratch it, but you cant really do anything about it. The night was a rough one. The nurse and her student was in about every 2 hours to check vitals and to give me good ol' pain medications. I was not a patient with a PCA (patient controlled anesthesia) pump so I was dependent on them for the pain control, but luckily the pain never really got any higher than a 7 my entire stay. Another reason they didn't have me on a pain pump was because the medications slow down the gut response and keeps them from "waking up" after surgery and in order for me to go home they needed to be awake.
The doctors showed up extremely early, like 5:30 early! It was the assistant I met in pre-op as well as some residents and another doctor. Later in the day I also met with McKlemore and she told me how happy she was with the surgery and she took a look to see how I was doing.
I also met with my case manager for my stay there who was going to get me all the home care and physical therapy I needed before I would be able to go as well as I met with the Occupational Therapists. The OT showed me the easiest way to roll out of bed and got my up and out of bed. The farthest we got was just to the chair, but later that day I did take a walk around the ward with a nurse and mom and then later 1 with dad. They have an incentive chart for the patients to get up and walking. It's nothing more than a simple white board with rows, numbers and a magnet that you get to move along as you make your laps. 26 laps and you have walked a mile AND you get to pick your choice of "destination" magnet once you have reached the "finish line". I also {ate} for the first time since Monday's prep for surgery. I was on a full liquid diet which ranged from some sort of broth, juice, as much water as I wanted, and sometimes jello. I also received another visit from Caleb, Cindy and Scott (highlight of the day).
Thursday March 13th, 2014: Today was another day of learning about my pouch and the wonderful way it worked. We needed to empty it over night and I starting to notice when I would "go to the restroom". There is no way to control it and no real way to explain how it feels. It just feels like pressure and then a release. Now, sometimes with the release comes some noise, aka stoma farts. These can range from the high pitched farts to the, well there is no nice way to say it but the wet farts. Again I have no control over it and I'm apologizing in advance if I ever see you and I fart, I don't mean it :) OK good, we have gotten that out of the way.
Now back to the day. The nurses backed off to about every 4 hours over night and the doctors didn't come in as early (thank goodness), although mom was there at 5:30am just to make sure she heard anything they said. She went home Wednesday night and came back in the morning for a bit. Well the morning doctors don't really say anything much but they do like to mess with the bag and see the consistency of the output. I tell you that so I can tell you this. After the doctors left, I asked mom if she wanted to take a few hot laps around the ward. Oh I was also supposed to get up and walk four times a day to keep the gut moving and to help prevent blood clots (sorry for the side track). So as I went to get out of bed, I stand up and SPLOOSH! Either the night nurse didn't close the flap all the way or the doctor tugged it a bit too much on her rounds that it opened completely up as I stood up. All mom could say was " Ah shit!" I mean what else can you say in a situation like that! I started giggling and closed up the pouch and the nurses came in to clean up. After that we went on our little 3 lap walk. Again another day of meetings, walking, poking, and laying around in bed. By now, I was starting to get bored. I turned off the TV and started watching Netflix, but I fell asleep 3 times while trying to watch House of Cards (so good but don't let me falling asleep deter you from checking it out). My ostomy nurse, Cheryl, also came in and we changed my bag and she showed me the steps and some tricks on the easiest and best way to change my bag. Yes it is something that does not get changed daily, but every 3-4 days. You do rinse out the bag (I do at least 3-4 times a day) but you keep the wafer on 24/7. It is waterproof so I can take showers with it on or off and they do recommend you take a shower with it off at least once a week. "So what happens if your stoma act up while you're in the shower?" Ummm...you rinse it off and clean the shower. You still need to wash the skin and since you have no control, you just kind of roll with it. Rollin' without a colon ;)
I also met with the physical therapist. I needed to meet with them to show them that I was able to walk up and down stairs since mom and dads house has them (14 exact) before I could go home, which of coursed I aced. There was no way I was going to let anything slow me down because there was a rumor going around that I MIGHT be getting discharged on Friday. I was also bumped up to applesauce level. I'll tell you what, that was some of the best applesauce I have had.
Friday, March 14th, 2014: Friday was a big day. Of course because of the possibility of my going home was stuck in my head but also because I was bumped up to a low residue diet (basically adding banana and peanut butter to my meals along with the added applesauce) but it also included Malt-O-Meal! WOOHOO! Big timer, I know! It was pretty much the same over night except I was pushed back to every 6 hours with the nurses and the same with the rounds, but the morning round doctor told me again that there was a really good chance I would be able to go home today. So as I had made it my morning routine, after or before the doctors, I got cleaned up and then go on my walk around the ward. But today was different (no my bag held fine today). When I got back, I had another try of food on my table, but it had an actual plate. I lifted it up and on the plate was a plain egg "omelet", 1/2 an English muffin, and some potatoes! REAL FOOD! The first real food since Sunday night family Mexican blow out! If I were to eat the omelet today I would say it was the grossest thing ever, but then, man it was so good!
Later that day, McKlemore came in and dropped some news on mom and I. Yes I would be able to go home today, but, I would need to have PICC line inserted. It is also known as a Peripherally Inserted Central Catheter. It is basically a long term catheter that stop right before it enters my heart.
Around 1pm the PICC nurse came in and we had it placed in about 30 minutes. We still had no idea if I was leaving today but in the event I didn't and still needed the PICC, they are off on the weekends, so I would have had to wait until Monday. stay in the hospital for 3 more days, NO WAY! The x-ray techs came in shortly after to take a chest x-ray to make sure it was not in too far and the nurse told me if you see me again, it is in too far, and if you don't, then i did my job and it's in the right place. Well, I didn't see her again.
Then came the case worker again to finish up paperwork and to give me the news that I would be going home. Now, she gave no time, but I would be leaving the hospital that day. Dangle that carrot in front of my a little bit closer. A few hours later came in a home care specialist to talk to us about having the nurse come out once a week to change my dressing on the PICC line and to give us information on all of that. I will say this about my insurance, all of my home care, ostomy and nursing care, is covered. All I have to go is mail in a $30 check weekly for the PICC line nurse when they come out to change my dressing.
All paperwork was done and then the waiting began. Now I have a small idea how the military feel when they know they are told they can go home on leave, but they have no time as to when they can actually leave. But my last nurse Martin came in as I was coming out of the restroom with all of my discharge paperwork...FINALLY!!!!!!!!!!!
Saturday March 15,2014: Was I in a dream? Nope I was back home in my own bed and man it felt fantastic. Woke up and headed downstairs and dad made some pancakes for breakfast and it seemed like any normal Saturday morning. Then I received a phone call from the company who would be dropping off my infusion supplies around 9am. It was honestly kind of like Christmas. I got a big box full of supplies as well as an IV pole to hang the bag off of. The receiver in dad came out to double check the delivery and my medical side came out helping him and the driver make sure everything was there. Mom was out doing some grocery shopping so I started labeling the items, dressings, IV lines, Saline, Heparin, caps, and put them all into 1 box. I wanted it to be as little as intimidating for mom when she got home because I knew this was something she was going to have a hard time with.
Around 10:45 the nurse showed up and the teaching started. I know how to flush a line and clean things off, but mom and dad did not so I wanted this to be a teaching for them more so than for me. I knew that if a nurse was here to go over the steps with them instead of me it would be more settling for them plus they could ask any questions they wanted. I also wanted them to know what a good line felt like God forbid anything happens to me and I need them to give me the fluids. Time for me to brag, they killed it! They prepped all of the syringes, cleaned my port, and hooked me up! Granted I did not have an extension on the PICC line yet so I needed them to do it anyways but now they know that they KNOW how to do it. Rockstar parents all the way! So just short of 3 hours of me being on the fluids I finished up and stayed on the couch.
This whole resting thing for me is really hard and if you know me, you know it is something I will struggle with at least for a bit while I am healing internally but I will tell you, if my parents had any idea of what kind of kid they were going to get with me, they would probably of had second thoughts about the whole thing. I have put them through so much, much more than any parent should have to go through and all while they stand right beside me with our Lord surrounding us with family and friends to help get us all through this.
I love you mom and dad!
Monday, March 3, 2014
X marks the spot
Well here we are 1 week away from my much anticipated surgery. Last Thursday mom, dad, and I went to go meet with my surgeon, Dr. Macklemore (no not Thrift Shop Macklemore) down at UCSD La Jolla. She is an amazing and very confident woman who puts you at ease instantly when she talks about the surgery. The game plan is my first surgery on March 11th, second on May 6th and then the final the end of August or beginning of September. We did find out though that she will only be doing the first two surgeries. She was offered a position at a another hospital and I am lucky that she will be there for the 2 major surgeries. Granted they are all major surgeries, but the third is the easiest surgery of the 3. It is just the reversal and closing up the whole in the intestine and skin.
Next we met with my case manager, Maureen. She is a HOOT! I mean all she does is talk to the doctors patients about the surgery and what all needs to be done prior to the surgery (forms, lab work, questions, and a ton of laughs). I mean of course we were all tense about the meetings, but Maureen came in and just lit up the room. She was cracking jokes left and right. I think the 2nd sentence out of her mouth was, "Dang it! I forgot my colon pin.I normally wear one so people know which doctor I belong to." She late then told us about her last name Cavanngh. She proceeded to tell us about her and her friends trip over to Ireland and they were looking up their names and what they mean. She could not find the spelling of her name anywhere and as they were walking from shop to shop, one friend started laughing and told her to look on the ground. There on the sewer cover was her family name! Quite fitting for the type of nurse she is. 45 minutes later she then tells us about my Ostomy nurse, Cheryl, and how she can talk up a storm.
Cheryl came in to mark me and to go over what I can and can't eat with the bag, what I can and can't lift (just a whole bunch of do's and dont's). She then looked at my dad and told him he looked familiar, and my dad told her the same. We then asked if she goes to the Stater Brothers in Encinitas and she started laughing. "That's where I know you from!" It never seems to fail, where ever we go, it seems like one person always recongizes my dad. Later that night I told him, "Well if you ever get lost, we can rest assure someone will know who you are." Cheryl and I spent a few minutes finding the correct place where the stoma will be placed. Then she brought out the surgical marker and officially marked me!
We needed to find a place where it wouldn't be on a fold and that I could easily see it and take care of it. We then attached a bag on me and honestly, I could not feel it or even see it under my clothes. That was the biggest "worry" I had. The relief of knowing that if I couldn't see it and I was LOOKING for it then others won't be able to see it either! The vanity of everything has vanished, for now. I mean I am sure I will be super conscious about it once I know I can't take it off, but I am at peace with all of this.
So with that said, I am planning on stuffing my face with all of the foods I will have to put off eating until I have my last surgery in August, mainly popcorn! I love it and I can't eat it, stupid kernels! I will be able to eat pretty much everything except any fruit or veggies with skin on them (apples, potatoes, grapes, etc) unless I skin them. I will also have to be careful of nuts. If I cannot fully chew them, then chances of them getting stuck is pretty high and that would result in a trip to the emergency room, no thank you. And then on Sunday I am having my family over and we are going to stuff our faces with yummy Mexican food. That is the one last meal I want before I have to prep and wait to eat again after surgery :)
Next we met with my case manager, Maureen. She is a HOOT! I mean all she does is talk to the doctors patients about the surgery and what all needs to be done prior to the surgery (forms, lab work, questions, and a ton of laughs). I mean of course we were all tense about the meetings, but Maureen came in and just lit up the room. She was cracking jokes left and right. I think the 2nd sentence out of her mouth was, "Dang it! I forgot my colon pin.I normally wear one so people know which doctor I belong to." She late then told us about her last name Cavanngh. She proceeded to tell us about her and her friends trip over to Ireland and they were looking up their names and what they mean. She could not find the spelling of her name anywhere and as they were walking from shop to shop, one friend started laughing and told her to look on the ground. There on the sewer cover was her family name! Quite fitting for the type of nurse she is. 45 minutes later she then tells us about my Ostomy nurse, Cheryl, and how she can talk up a storm.
Cheryl came in to mark me and to go over what I can and can't eat with the bag, what I can and can't lift (just a whole bunch of do's and dont's). She then looked at my dad and told him he looked familiar, and my dad told her the same. We then asked if she goes to the Stater Brothers in Encinitas and she started laughing. "That's where I know you from!" It never seems to fail, where ever we go, it seems like one person always recongizes my dad. Later that night I told him, "Well if you ever get lost, we can rest assure someone will know who you are." Cheryl and I spent a few minutes finding the correct place where the stoma will be placed. Then she brought out the surgical marker and officially marked me!
We needed to find a place where it wouldn't be on a fold and that I could easily see it and take care of it. We then attached a bag on me and honestly, I could not feel it or even see it under my clothes. That was the biggest "worry" I had. The relief of knowing that if I couldn't see it and I was LOOKING for it then others won't be able to see it either! The vanity of everything has vanished, for now. I mean I am sure I will be super conscious about it once I know I can't take it off, but I am at peace with all of this.
So with that said, I am planning on stuffing my face with all of the foods I will have to put off eating until I have my last surgery in August, mainly popcorn! I love it and I can't eat it, stupid kernels! I will be able to eat pretty much everything except any fruit or veggies with skin on them (apples, potatoes, grapes, etc) unless I skin them. I will also have to be careful of nuts. If I cannot fully chew them, then chances of them getting stuck is pretty high and that would result in a trip to the emergency room, no thank you. And then on Sunday I am having my family over and we are going to stuff our faces with yummy Mexican food. That is the one last meal I want before I have to prep and wait to eat again after surgery :)
Sunday, February 16, 2014
Life Changing Surgery
As many of you know I suffer from an auto immune disease called Ulcerative Colitis (aka UC). It has been ruling my life pretty much since 2008 and we have finally gotten a bit of a hold on in with the help of many medications and for that I am grateful full. Without modern medicine I would be so much off worse than I can even imagine, but even sometimes, not all the medicine in the world is healthy or will help control or even cure a disease.I have been on probiotics, anti inflammatory drugs, mild forms of chemo, infusions and even self injections but sadly they have only controlled the UC, not cured it.
This past October on one of my regular scopes we got word that things are not getting better and that I have developed some precancerous cells. granted the doctor on the phone told me that I have the big "C" word which threw me and my family into a panic of a tail spin, but once we went to go meet with the surgeon she later confirmed that they were only precancerous cells. I have to tell you that was the biggest weight lifted off of my shoulders! **Side note - along with my UC I also have a condition called Primary Sclerosing Cholangitis ( aka PSC) which is also an auto immune disease. It is not uncommon for people with 1 AI disease to have multiple AI diseases. With the UC and PSC my chances of getting colon cancer are 25% higher than that of a normal person so when they told me I had the precancerous cells, it was a relief, but I also knew that it was a matter of time before they were true cancer cells.
The surgeon then processed to tell me parents and I what her strong opinion, along with my 2 internal doctors, that the next step for treatment would be to have a Total Coloectomy with a J-Pouch. This means that they will be removing my entire large intestine (aka colon) and my rectum and I will be having a temporary ileostomy. Yep I get a poop bag lol. They will be performing 3 surgeries over the period of probably a year or so.
The first surgery will be to remove the colon and rectum and give me the ileostomy. The second surgery will be to start the J-Pouch surgery which is they will be making a faux rectum out of the part of the small intestine that would normally connect to the large intestine. And then the 3rd will be to reverse the loop-osteomy and to open up the J-pouch.
It will be a huge change for me as I will have to trick my body to absorb liquid which is the job of the large intestine, but if you know me, I am always drinking water anyways since my large intestine isn't 100% working as is. I will have to learn my digestive tract again, and from what I have read, watched (there is a GREAT YouTube channel with someone who has the same 2 conditions I do - UCandPSC), I will be pretty much as normal as anyone else, eventually. I will be able to decrease my immunosuppressant medications since I will not need the anti inflammatory medications anymore and will be able to feel healthy again.
Surgery is scheduled for March 11th and I will be on here throughout the process giving updates on how things are going. I have to say I am so excited to not be in pain anymore and not have to worry about having an "accident". I am also so very blessed to have the parents God has given me. And lastly for my family and friends. I love you all!
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