Thursday, May 30, 2013

Progress

I'm doing well! I'm actually able to EAT!! It's a miracle, really god has blessed my life!!!
I'm finally starting to do better and make some progress. I'm at 5 weeks post op and BMs have finally started to slow down! I met with the surgeon on Tuesday and asked him why I'm so tired weak and sore still. He said that because I was so malnourished, weak, dehydrated, toxic etc. before surgery that my body is having a hard time healing and gaining strength back. He also said that because I'm still so thin and was not able to eat for a long time after surgery that my body is just worn out. Makes sence, I can barely shower and when I do I need to take a nap after. So I'm still not back to work yet and we decided to see how I feel in a couple weeks and then talk about going back to work.He wants my body to rest to get strength back, he told me during surgery he saw very little trace of abdominal fat and want me to get a layer of fat before u start anything strenuous. Ha just what I want a belly pooch! Ha I have to laugh. I have always been on the skinny side so when I got sick and lost a lot of weight it was very dangerous. But it's hard to hear a doctor tell you to gain weight.

The surgeon was so thrilled to see how good I'm doing! He was so excited that I could eat! He cheered and hugged me. When he examined my belly he could not believe how flat my belly was. Ha!! He kept feeling my belly and saying how flat it is!! He seemed in shock! Well the appointment before my surgery I looked 9 months pregnant. Big difference!!!

Saturday, May 18, 2013

Fatigue

Oh yes I am very fatigued still. I can barely shower and after I do I have to sleep. I'm just worn out all the time and still sleep a lot. I'm laying in bed all day except to do short walks, get food, and use the restroom and maybe get a shower in if I feel like it. I just don't know what to do to build my energy level back up, do I need "endurance training?" If I do more than short walks, max 10 minutes, I get super sore and the soreness lasts a long time. I'm just so confused as to what to do to get more energy. My surgeon said to do what I can but don't do any more, when I get sore stop, when I get tired stop, so I'm not able to do much at all.

 

Thursday, May 16, 2013

Back Pain

After speaking with the surgein it turns out that every movement I make I use my back to offset the work so I don't have to use my ab muscles. Also he can still feel a lot of swelling in my belly so we know things in there are super sensitive. I also have a lot of gas pains so that might be it. Also laying on you back for a long time can cause it to get sore.

Tuesday, May 14, 2013

Follow up with surgeon, and a trip to the ER

I'm doing well, and so very happy that I had the surgery. Finally i have made some progress as my bowels woke up more about a week ago. I have been feeling better than I have in YEARS. Besides the fact that my gi track is working better now (no bloating, going poop, not having a month of stool fester in my bowels etc.) I have this overwhelming feeling of wellness. I have not felt this good EVER.

I am still very week and have very little energy. I am sleeping a lot. Riding in the car is very painful but putting pressure on my abdomen with a pillow helps some. Sitting up in a chair and walking are painful still as well. My surgeon says this is all very normal and he is very pleased with my progress, mostly with my eating!!

He shared with me how my colon was extra long and had many extra bends and loops. He traced the path it took on my belly today and man i had so much extra colon. He said that during surgery he just kept following it and following it and following it and was wondering if he would ever reach my rectum and just kept on following it and eventually he reached my rectum. The weird thing is that I had EXTENSIVE testing on my colon, many colonoscopies and the GI doc never said anything about it being longer than normal...ugh that dang GI doc, makes me mad. That is something they should see right? especially on a colonoscopy! What was that guy doing down there?

I am now actually eating and i can eat whatever i want!! This is a big deal for me. For the last two years since my colon took a turn for the worst i was living on very little amounts of food. Mostly saltine crackers, and on a good day i could get in a little orgain. I could not keep food down, had no appetite for anything and just the thought of a lot of foot especially meat made me loose it. I lost over 30 lbs in a matter of weeks when things started getting bad. The 6 months leading up to my surgery were the worst because my Dr. said that I had to eat even if i couldn't, so I did...I tried and would balloon up, you can only fill up your intestines so much!!! I'm so happy to be able to eat and not have pain! I am even eating chicken and i had steak the other night!

I am having a lot of diarrhea and have been having a hard time staying hydrated. Sunday i was dizzy, light headed, bad headache, leg cramps the works. I was taken into the ER at 2 AM on Sunday. They kept me, gave me fluid, potassium and magnesium and ran a bunch of tests. Today the surgeon prescribed lomotil to help slow down the diarrhea but I'm afraid to take it, i am so worried about getting constipated again! I'm going to start it tomorrow along with Metamucil.

I also got more pain meds because i have a lot of cramping at the anastomosis site when i have a BM. Doc said this is a normal part of the bowels waking up. My stomach and small intestine did not fully wake up until about a week ago and when it did the diarrhea picked up, having close to 25BM's on some days. For me there is no pattern yet, and the BM's do not corelate to when I eat. They will in time, the doc reassured me and eventually he hopes i can back off the lomotil.

I started having back spasms today after going to the appointment, i was upright for way longer that I have been since surgery so I am assuming they are from not using my abs at all and because i have to use my arms to put pressure on my abdomen at all times when walking.

I see the doctor in two weeks from today and then we will start the conversation and process of going back to work.

Sunday, May 12, 2013

At home recovering

I'm at home resting and eating pretty much what ever I want, I started getting bloated and constipated a few days and it's because my stomach and intestine are still very slow because they have not fully woken up yet so i was advised to eat food that is easy to digest (toast, applesauce, bananas, chicken, eggs, yogurt, ice cream, canned peaches and pears etc.). I am doing OK and have been trying to walk to get things moving. BM's are getting better (less bloating and more frequent) and going about 8 or more times a day. But I have lots of pain when i do have a BM, i checked in with my surgeon on Tuesday to check on this, but I don't have a fever and pain only comes when i have a BM so its nothing that's an emergency. He says I'm about a week behind on recovery because i just started eating last Friday so the pain is probably the fact that I am eating more and more each day. My infection is doing much better, no more red and swollen hips, but and sides of my abdomen, but I'm still taking my antibiotics.

I'm very pale and weak, very weak and have no energy still. Thinking my blood levels are low again but will get that tested and taken care of on Tuesday. I'm guessing he will do some xrays as well for the pain I have during BM's to check on the anastomosis. Today I have had a light fever, about 100 so we need to watch it, if it gets over 101 then i am to go straight to the ER and my surgeon will meet me there.

I must say I had the BEST care team. They day of surgery I met with both anesthesiologist that would be in the room, then two of the nurses and the lead nurse that would be working with me, my surgeons assistants (3), and then my wonderful surgeon. Dt. T is definitely a superhero surgeon in my book!



All these people were wonderful and were very through and explained their part to me which was wonderful. After surgery I had the best nurses taking care of me for the most part, a couple of them were iffy and had a hard time handling my extreme vomiting and were too busy to help me efficiently. But I had some amazing nurses when I really needed them, like when I was the room number being announced over the loud speaker at 3 am for an emergency! I hated being "that patient" you know the sick one on the unit that demanded the nurses attention and felt bad about being so needy, that was emotionally hard for me.

But I must say I am so happy to be home resting with my kitties in my own bed. Going home was very scary and painful. I was very nervous to be leaving the hospital and be on my own at home with no nurses there every minute to help me up to the bathroom, shower, eat, drink, and give me medication and nutrients via IV, it was extremely scary leaving their care.

Post-Op hospital stay

I stayed on the 6th floor of Legacy Good Samaritan Hospital, here are pictures of the Surgical Specialties unit I stayed in:

 
I don't remember waking up from surgery or much of anything of the day after surgery.  Apparently the first thing I did after waking up was pull off the sheets and gown and expose my belly to see the scars! Matt reports that I was feeling great, laughing and joking right away (thanks pain meds, ha) Here is a picture of me just after surgery with my special surgery buddy that my Mom and Dad gave me during my first surgery last year:

 
The next morning I was still feeling good so the nurses decided to advance my diet and I was allowed some sips of orange juice that went down ok! Day two is still a blur, all I know is that Matt said I was feeling good, and not complaining of any pain, thanks to the epidural. Here I am trying to figure out my spriometer all drugged up (I don't remember this):
 
Soon it was time to get up and start walking.  I do remember this hurting and the nurses had to sit me up and get me out of bed.  I made it to the doorway of my room to peek down the hall and then it was back to bed. Look no NG tube yet! Ha!  And the nurse is hiding out of the picture, I steadied myself against my "walker" enough for a quick picture, I was determined to look "helathy":
 
The day after surgery the nurse took my bladder catheter out. Later I was screaming in pain because my bladder was over full (used a bladder scanner to see it over full) and the nurses had to straight cath me and she ended up removing the equivalent of "3 IV bags of fluid from my bladder" she told me later. We went through this process two more times and finally ended up putting the foley back in.
 
After surgery the spinal caused me to be super itchy all over my body and i was itching my skin off! Benadryl in large doses and special lotion were my best friend. Itching was a constant battle the entire hospital stay. We determined that removing my colon had messed with my immune system and everything was upsetting it.  I had an allergic reaction to the bedding and gowns.  I developed a red rash over half of my face from the magnesium.  And the bad reactions just kept coming. 

One morning I remember the surgeon coming in and talking with me about what went on during surgery.  Surgery went well and the surgeon said that my colon was very long (the longest colon he had ever seen) it ended up being twice the normal length about 10 ft and had many extra loops in it. He also stated that my colon was extremely floppy which meant that the nerves and muscles of the colon had not been working for a long time, which was something he had not seen before either. I really wish I had them take a picture of that nasty colon so I could see it, I had contemplated it before admittion to the hospital but I thought they would think I was some crazy sadistic person, so I skipped it. That same morning the pain and nausea set in and they upped my pain medications (morphine) and reassured me that the nausea was most likely from the pain meds and not to worry.  The surgeon suggested that I eat something little to see if we could get things moving (I still had not passed any stool and could not urinate on my own). So I decided upon pancakes.
 

I remember texting Matt a picture of my pancakes, I think he had left the hospital to go shower and get something to eat. I was so happy to be able to eat again, and ready to start my "new life" filled with EATING!! I was so wrong...within minutes of eating i started vomiting.  It was dark green bile and I was vomiting all over myself and the nurses, my family and my bed.  It hurt at my incisions and especially inside my abdomen when I would vomit.  It felt like my insides were ripping. 
 
What was happening was that my small intestine had shut down and was creating a blockage and nothing could pass. Bile had been backing up into my stomach for days.  
 
I vomited violently like this for hours, they gave me medication to sedate me but I just kept vomiting.  I was so thankful that Matt and my Daddy where there to help out.  I one point I was in so much pain, cyring and vomiting.
 
The next thing I remember was a group of nurses coming in with orders from my surgeon to place a nasogstric tube (this is a tube they insert into your nose and it gets pushed down until it reaches your stomach) they forced my family out of the room and began to hold me down while I vomited all over them, myself and my bedding while they began to insert the NG tube.  I was so angry that they were holding me down, but I could not do anything about it because I just kept vomiting.  It hurt so bad and they could not get the large tube past my septum for the longest time. Finally they got the NG tube in.    My memory of the vomiting and NG tube is pretty foggy but I defenately remember some "big" parts, I'm guessing my memory of these events is a little stronger because when I started vomiting they stopped giving me pain medication to see if I was having a bad reaction to the pain meds, well it turns out I wasn't.
 
I had developed a severe prolonged postoperative paretic ileus (ileus lasting over 6 days) which they confirmed by in room xrays.  They alos took xrays to confirm the NG tube had been placed correctly by my surgeon. Even with the NG tube in to suction out the bile and IV injections of ondansetron (Zofran), Haloperidol (Haldol), and Promethazine (Phenergan), I still was vomiting unrentlessly through the night and into the next day. Because of the prolonged ileus I had increased pain, delayed bowel sounds, delayed defication and delayed wound healing. In order to go home I was required to keep down food and liquid, pass uring on my own, and pass gas and stool. 
 
In the middle of the night I remember a new nurse coming on duty who insisted that I get up and walk.  Between vomiting fits I pleaded with him to let me stay in bed, but he refused.  For a moment the vomiting slowed down and he was certain the vomiting was done and I told him "if I stand up I will vomit".  He made me stand up, guess what, I vomited into the nice blue chux bag he was holding.  He continued forcing me to walk, I got to the hallway and stopped because I was about to pass out, my legs gave in and the nurse had to catch me and in that same moment I began to vomit, it went everywhere!!! Still holding me up and with me vomiting in the hallway he immediately called out to the other nurses at the desk to call the doctor ASAP! haha, I did warn him. He quick got me back into bed and didn't bother trying to get me to walk all night!  Instead he sat with me most of the night while I continued to vomit.  Then they tried keeping me sedated but I just continued to vomit while being extremely sleepy. Nothing like vomiting in your sleep... UGH
 
That morning my surgeon and my surgery team came to assess the situation along with the supervising floor nurse. Apparently he had never been sent a copy of the the first x-rays to approve placement of the NG tube and he became super mad at the nurses. Upon examining the x-rays he found that the NG tube had been place to far down and was actually pushed into my small intestine so it was not suctioning much of anything.  My surgeon pulled the tube up and took more xrays in my room and the NG tube was finally in the right spot and by the end of the day the vomiting had slowed.  UGH! Tube stayed in until the day before Ileft the hospital. I was miserable.



 
I also had developed intense swelling on the sides of my body from my ribcage down to my thighs which turned out to be excess fluid that had accumulated due to an infection, and I also developed a high fever. I was so swollen that I was double as wide as I normally am, i looked ridiculous and it hurt bad. Not only was the sides of my abdomen and hips swollen but red and painful due to the infection.  They put me on IV antibiotics to heal up the infection 

They took blood every day to watch and monitor my infection and nutritional levels since i was not allowed to eat anything by moth for 9 days.  My magnesium, potassium and iron levels fell drastically low during and after surgery so I was given these through IV. I had a bad allergic reaction at my IV site when the magnesium was given my arm was instantly swollen, red and burning and started itching! Over the 10 days in the hospital I had over 8 IV's placed, each at a different site due to IV fluid leaking into the tissue outside of the vein (infiltration),  inflammation of the vein (Phlebitis), and blood clotting in the veins surrounding the IV catheter. 

I tried walking as much as I could tolerate, on one of my last days I was able to make it across the hall to the elevator that took me down and right to the garden.I was determiined to get to that garden after passing a guy in the hallway who had to be in his 90's (and was lapping me by the way) mentioned how he had gone down and sat in the garden for a while. If he could do it and make it back, I had to be able to.  Finally on my last day I finally pushed myself to do it, I got tired on the way and stopped a few times to sit down.  I walked with very slow steady movemts and all I was all hunched over (my abdomen hurt so bad to walk I could not stand up straight yet) and I shuffeled my feet! I was so happy to be outside! Matt and my family would come and go during the day heading to work, taking walks and leaving for meals or to sleep at home for the night, it was nice to have the quiet time, and who wants to be stuck at a hospital for that long anywas? But I was very jealous that they got to leave! I was having bad anxiety beeing stuck in that room and stuck in my bed all the time, which is crazy because I was only awake for a few minutes at a time.  Here I am on one of my walks all hooked up, I posed by myself for the picture.  During my walks I was usually held up by a nurse on one side and a family member, or two on the other:






 
The garden I finally made it to:

The next day they allowed me to try drinking sips of water, the first thing to enter my mouth for 9 days! With the NG tube in I remember being so uncomfortable with dry mouth and all i wanted was to have some liquid in my mouth, it was torture. They gave me these little green sponges attached to sticks and a cup of water, I was only allowed to wet my lips, and the nurse had to supervise me to make sure I was not sucking water off the teeny tine sponge.  Even if I did I don't think there was even enough liquid on the sponge to swallow.  

The fever made me super uncomfortable and compounded with the pain, vomiting and itching I was miserable beyond belif. Many times I thought relif would never come. At one point I was itiching myself so hard at one point I started bleeding.  We tried everyting to make the itching stop, special lotions and creams, benadryl and other alergy medication that just made me super sleepy but nothing really helpe.  But we figured out that the epidrual can cause you to be very itchy and it turned out that I was aving a bad reaction to the laudry detergent they use at Legacy.  They gave me special allergy bedding that is wased specially for people with skin irrations and it helped! Another great thing were the heated blankets and hot packs they would put on my sore belly.  I'm pretty sure I had one constantly and it helped to ease the pain some. When my fever was at it's worst it felt so good to have ice packs on my head.  But that's about all the comfort measures the hospital had. 

I remember trying to watch TV at one point in my stay but it was just too much.  Talking and holding conversations was exhausting and frustrating so I mostly layed in bed holding my family members hands and closing my eyes when I was awake.  I was so fortunate to have lots of family visit me during my stay.  During some of my roughest moments the only thing that kept me fighting was my family!  Thank YOU!!!!!!  As you can see in the pictures my room quickly became filled with cards, flowers, plants and stuffed animals from my friends and family!

One afternoon the nurse cam in and said "lets get you a shower".  I'm assuming I was super stinky if the nurse had to point it out, pluss I'm sure I still had vomit in my hair.  Funny how quickly you don't care if your clean when your in pain!  Most days spent there I was sure I was dying.  Showering turned out to be a horrible, exhausting mess. I was still all hooked up to all my different IV's, catheter, and had my NG tube in, all this had to be brought into the shower with me.  Thank goodness for the kind, patient, caring nurses.  I was so exhausted I just layed in bed while she got everything ready to transport. She pulled me out of the bed and helped me "walk" to the bathroom and into the shower.  She did everything for me while I stood there holding onto my "walker" all hooked up with everying.  By the time my shower finished I was exhausted.  She got me dressed and back into bed and I was out.  Most of my time in the hospital was spend sleeping. 

My saving grace for this hospital stay was a round neck pillow and headphones!  The nurses had to check on me every 30 minutes max during my stay.  And each time they would wake me up.  With the headphones on if they came in to change an IV bag or empty my NG suction I would not be woken up!!! YAY

During my stay I had a couple of wonderful nurses.  One in particular night nurse was amazing and I had her for a few nights in a row.  She was so gentle and reassuring.  In the middle of the night when I as sleeping she would greet me for my shots (heparin shots for blod clots, and another one I can't remember) by softly stroking my forehead and simply saying "sweetheart I'm here with you".  That statement I found very comforting.  To have someone acknowledge that they are WITH you was just what I needed. She was so gentle and rubbed my swollen and infected belly before gently giving me my shots and then she would stay with me for a while afterward making sure I was comfortably tucked back in.  Before leaving she would place a comforting hand on my head and say "sleep now my sweet".  Every time it was the same sweet reasuring interaction with her and I was so thankful to have her. Many times nurses would hustle in in the middle of the night loudly, give my arm a quick forceful shake and practically yell "time for your shots and meds" to make sure they had fully scared me awake and then proceed to pull back the covers and stab me in the belly (heparin shots for blod clots) before I even knew what was going on.

I had a few other bumps in the road with student nurses, antibiotic side effects, severe dehydration, walking, continuing ileus, not being able to pass stool or urine, and then when I did go I was pooping blood and bile (not good), I also developed intense pain at anastomosis site, encountered more medication complications and handful of other issues. But my memory of these issues are pretty foggy.

I was just so thankful when the vomiting stopped and my surgeon finally came in and said we could take the NG tube out!  It was not a fun experience with the NG tube in, they are very painful and cause a lot of irritaion in you nose and throat.  With the NG tube in place it hurt to talk and swallow, I was given some numbing throat spray to help ease the discomfort but I was horrible at squirting it into my mouth and all it did was make my toung numb, but it was liquid in my mouth.  Throat spray had never tasted so good, HA! The NG tube also hurts inside your nose and caused sores deep inside my nose and on the outside where they had taped it to my nose for so long.  I started to get a stuffy nose and I was not able to blow my nose because of the NG tube and that caused everything to become even more irritated. 

I remember overhearing a nurse go to each room on my floor with a menu and saying she would be badk to take their order.  She never came to my room becaue of the ileus and I was so mad, I just wanted to be given a menu, just to look at and dream about the food. Well not really I guess because I was so natous.  But I wanted to be included in the basic human process of eating.  I wanted to feel normal.  My family was great about not eating in front of me much but really I didn't care if they ate in the room because I was not hungry at all.

When one of the members of the surgical team came in and hinted that I might be able to leave that day I was thrilled and all I could say was how quickly can we leave! I had my family imediately start packing and taking things out to the car.  I could not get out of there fast enough.  They had to give me another set of IV medications because the morning blood work came back bad again and then a while after the IV's they would run the blood again and if the levels had normalized I could go home.  So all that was left to do was wait and get my perscriptions to take home with me filled.  I'm pretty sure I layed in bed and slept with my go home outfit and shoes on for a few hours.  I was so ready to get out of there and to finally be able to go home that when I heard that there might be a chance I got myself ready in an instant.  Getting dressed hurt so bad, I had forgotten to bring a shirt the buttoned in the from and having to pull a shirt over my head was excrusiatingly painful.  After a few hours they ran the blood tests and I had passed, my levels looked good and we got the OK to leave.  After hearing all my discharde insturctions and meeting with the doctor one last time I was wheeled out of my room and through the hospital.  I always find it funny that they make you sit out in front of this bid hospital all sickly after surgery and wait for you family to pull up the car.  Once we reached the entrance to the hospital and we went outside into the sunlight I remember instantly becoming very scared.  I wanted to go back up to my room where my wonderful nurses could continue to take care of me, I was scared to go home and be on my own.  I was scared I was not ready to go home and looking back I probably wasent.  I was still in a lot of pain and hadent really eaten much or drank much and I had only had the NG tube out for about a day max. 







The morning of my surgery

OK! Now that I'm home I thought I would reflect upon my surgery and update everone...I'm trying hard to remember all the details but they kept me pretty drugged up and my memory is all distorted!

Matt and I arrived at the hospital early on purpose so that I can have my time to go through the pre-op process slow and take time to mentally process everything.  I was going to be my surgeon's first case of the day and the first surgery taking place in the operating room. 

Upon arriving at the hospital I remember how relieved I was that my Mom and Dad where there, having my family by my side allowed me to relax a little bit and made it easier for me to trust the staff and nurses. 

I remember checking in at the main entrance of the hospital and having to sign my life away!  Then they gave me my ID band and took me back to the pre-op room.  The nurses that I met there were wonderful and spent time going over everything with me to make sure I truely understood what was going to happen and when.

A nurse came in to place the IV line in my hand.  Puttine one into my inner elbow was not an option any longer as I have had many IV's started there recently and the area is too brused and sore,  Because of the severe dehydration that comes with not being able to tolerate and/or keep down food and liquid my veins had become hard to find and very tiny.  She tried three times to get the IV into one of the veins on the top of my had before getting another nurse.  This seccond nurse chose a spot about halfway up from my wrist to my elbow, and it worked on the seccon try and he started fluids and antibiotics. 

Then I was escorted to the restroom where I was to change into the lovely hospital gown and wipe down with antibacterial wipes one last time. Here I am in the pre-op room:

I had woken up super nautious again thanks to my "dead" colon. We had decided in my last pre-op appointment that to fend off nausia I would be getting a squalamine patch, they placed the round silver patch behind my ear very quickly, thank goodness. My surgeon had also explained that women are more likely to respond to anesthia with nausea and vomiting after surgery so they wanted to get a head start on that and be proactive. Such a great idea, i love when doctors are proactive about your health. :)

I must say I had the BEST care team. Before wheeling me down to surgery I met with both anesthisiologists that would be in the room, then two of the nurses and the lead nurse that would be working with me, my surgeons assistants (3), and then my wonderful surgeon.
 
My surgeon has a very calming presence, when I saw him the morning of my surgery i felt very relieved and relaxed.  While he was talking with me and my family about the procedure I began to cry as a wave of calm swept over my body. Finally I could let all the anxiety, fear and pain go, I was finally going to get the surgery I had been needing for years! My trust in my surgeon made this possible. God had guided me to this moment, to this surgeon and everything was falling into place. 
 
Before I knew it I was saying my last goodbyes to my family and getting lots of hugs and kisses from everyone.  Then the ansteologist wheeled me down the long hallway and into the operating room. On the way there I started getting extreemly nervious and I guess that the nurses could tell because the anestologist gave me a sedative through my IV.  
 
I remember beeing wheeled into this huge operating room, just the sheer size of the OR was intimidating not to mention all the machinery and surgical tools!  Next I was situated to recieve my upidural and that is the last thing I remember.  My surgeon and I decided to do an epidural that would help with pain so that i would not have to take so many narcotic pain medications. I must warn you that I was very happy for the epidural because I woke up after surgery in very little pain for the first two days but it made me itch horribly, i was told this happens some times. The reason for the epidural was because we were concerned about the posiblity of an ileus from narcotic pain medications so wanted to limit the amount i was taking. In a previous surgery i had a serious bout of an ileus.