Update

I have been going to physical therapy for a few weeks now I'm 3 months post op from my total colectomy. I still am very weak in many areas of my abdomen, pelvis and back. I have pain in my abdomen, sore back, and pain in my pelvis.

My main areas of focus at PT are: Pain management (back, pelvis and belly), strengthening transverse abdominals, pelvic floor rehabilitation, scar tissue and visceral tissue therapy.

They started me with some manual therapy, stretches and diaphragmatic breathing exercises initially. I am to wear an abdominal binder for 6 weeks. Still needing to lay down as much as possible (heat helps) to rest belly and back. I received a tens unit that i use on my belly and back for pain management and that helps a lot.

I'm still restricted in my activities...No lifting and very little walking. Walking on land is painful so i am walking in the pool, 40 minutes per day, to lesson the effects of gravity.

Recently they started a technique called ASTYM which is supposed to be a way to mobilize and reduce scar tissue. So far it just leaves horrible bruises on my belly and leaves me sore and swollen for about a day. I was told it takes at least 6 treatments before we can begin to notice a difference, which is good because i have not had any changes since starting ASTYM, I have had 3 treatments.

Scar Tissue on small intestines and in abdomen.

 

The pelvic floor rehab is very "uncomfortable" with many internal examinations and kegal exercises.

Physical Therapy

Well I am still off work two months after my colectomy. I have severe muscle degeneration, abdominal pain, pelvic floor issues (only after surgery), back pain, and my abdominal muscles are thin, too short and my PT could not even get them to contract. Not really sure what this means for me going forward but i know it's not good.

I had my 1st day of PT on Wednesday and my new PT is amazing!! They used an ultrasound machine to map out and measure all my abdominal muscles, bladder, pelvic floor etc. They also took videos while I did kegils, lifted my head and squeezed certain muscle groups in my abdomen. Many of my muscles would not move at all, especially my transverse abdominal that are basically so thin and short that they are non-existent. Part of my bladder and pelvic floor is constantly contracting and other parts she could not get to contract even with manual therapy methods. My bladder was very odd shaped, probably from the extra amount of colon, but now it's causing issues for my muscles. Also causing problems are the what i like to call holes where my huge intestines used to be (i had about 10 feet of huge distended loopy colon) my muscles in these areas don't move and the visceral tissue in there is very hard and will not allow anything to move. I have some rectal and bladder issues along with pelvic pain that started post-op. Also I have scar tissue causing pain in my abdomen and pelvic areas. I know there was a lot more specific issues but these are the ones i remember. Basically i have a huge mess of things not working and it's also causing pain in my back.

NO wonder I am so tired, and in pain when i move. ugh i thought once the healing from surgery (incisions, and the anastomosis) was done i would be all ready to go. I am so disheartened. It's causing me so much stress and anxiety!

PT says I am not allowed to walk anymore!?! WHAT no walking, how do you do that???  They want me to rest for 30 minutes (sit, laying back/reclining, or laying down) after 30 minutes of being up and active.

I am to work up to walking in the pool for 30 minutes 5 days a week. It's painful but not as bad as when i was trying to walk in the neighborhood. It's just so hard to hear that you have to restrict your activity again.

My immune system is all screwy. Basically as my doc explained it is that the majority of our immune system is in our "gut" and now that i have removed so much of it, so now my immune system is overcompensating and attacking my body. I get hives and severely itchy skin that hurts every day!! I am taking all kinds of meds for it but it's not helping. I'm sad.

Bowel movements are still iffy. I can't tell if they are gas, liquid, or solid still. They are pretty much all very loose and "fluffy" and are often. I can hold the BM so i don't ever worry about pooping my pants which is GREAT.

Tomorrow is a long day... PT in the morning (2nd day), then water walking, then i go to see my PCP about the immune system business.  Malnutrition is still a big issue. 

WOW that was very long, and i didn't even get that detailed. I have a lot going on, craziness! And i haven't even gone back to work yet. As far as energy level and what I can do physically, I'm very behind on this recovery process compared to where I should be (my PT does not want me working yet) but i have exhausted my FMLA So hi-ho, hi-ho its back to work i go!!!

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!!!

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.

 

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.

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.

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.   

 

Surgery Day

It's finally the day of my surgery.  I woke up feeling excited for the healing process to start but scared to death of this major surgery that is about to take place. 

I'm just happy Matt is here with me and that we will be meeting my family in a little while at the hospital.  I'm most scared about trusting the nurses after surgery to take care of me, I know, I definitely have control issues.  I made Matt promise me that I would never be alone while I was in the hospital, what a great husband I have.  I had to wake up very early to take one last shower and to wipe down with the special antibacterial soap and wipes they gave me.

I then put on my comfies and gave the cats and the dogs one last hug...Well the day has come whether I'm ready or not. Wish me luck! 

One last quick picture of my belly before surgery, the last few moments of a scar free belly!

Clear liquid diet day...surgery is tomorrow

I can't believe that today is my last day with my colon (large intestine).  Weird to think that in less than 24 hours my surgery will start.  Tomorrow I will loose my entire colon which is 5 feet long!  Not to mention that they must remove my appendix as well, it's connected to your colon.

Good riddance you malicious colon!

My home for the next week!

Legacy Good Samaritan Hospital

 

So today I am on a clear liquid diet, no fun when you are already weak, malnourished, anemic, and dehydrated consistently.  FUN FUN, NOT! We stocked up on popsicles, juices, Gatorade.  I hate that you can't drink anything red or purple, the red colors are always the best flavors. Right!!

 

So I will be spending the day with my Bella, she goes to my mom and dad's house tonight and will be on "vacation" there for a week until I come home from the hospital.  My kitties are snuggled into me as I speak, they know somethings up I think.  I have been doing some packing and they want to lay on everything I put in my bag which is a big problem.  I was instructed that everything I pack must be fresh laundered, aka it must go directly from the drier into my hospital bag. 

 

I also have to wash the sheets and bed linens today and I can only take them out of the drier and put them on the bed right before I get in.  Before getting in bed I have to wash with special soap tonight and then put on jammies straight out of the drier as well.  The surgeon is really addressing and working to prevent infection because my immune system is not working up to par.  The worst part is I am not allowed to be around my kitties after the shower tonight! They usually both sleep on me.  I am going to miss them tonight, I can't get comfortable without them smothering me, HA.

 

 Surgery is tomorrow!  It has come up so fast.  When we scheduled surgery it felt like it would take forever to get here.  Now it's tomorrow!

 

 



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Surgery Wednesday

I can't believe that surgery is the day after tomorrow.  I'm ready, I know that this is what I have to do to get myself better.  Yet, at the same time, I am scared to death.  Praying for a calm mind and body the next few days. 

Ive been a good girl, drinking my Impact specialised nutrition drink (pre-op for high-risk patients prior to major surgery).  Drinking what fluids I can and resting up.  I have all my clothing laid out already and we have moved the bed from our spare bedroom to the downstairs living room at our home so I have a place to rest downstairs so I don't have to do much walking. 

Tonight is my last meal. Tomorrow morning until midnight i am only allowed to have clear liquids and then nothing to eat after midnight. 

Wednesday morning I check in at 6am for a 8am surgery.  It's coming up so fast, am I ready?

Surgery one week away! Pre-Admission Appointment Today

Had my Pre-Admission Today.
Went down to Good Sam's today.  Traffic was horrible getting there, and then we got lost in the parking garage...but we figured it out and got there.  Just remember level H has the sky bridge to the main building. 

The nurse we met with today was great!  We went over EVERYTHING.

Pre-op skin preparations (antibacterial wash the night before with clean sheets and PJ's then I have special wipes to use after another antibacterial wash in the morning).

Pre-op nutrition: My meals for the next week...

 

Because I'm a "high risk" patient due to low weight, malnourishment, and very low caloric intake recently they prescribed IMPACT, I'm to drink 3 of them a day for the five days prior to surgery.  I was told that they also help your immune system and help prevent infection and help wound healing.

We went over anesthesia and my difficulties previously, anesthesiologist will contact me this week. 

Pain management

Day of surgery directions, I'm the first case in the main operating room.  This will be so nice, can't get pushed back. 

Keeping my lungs clear post-op with a incentive spirometer

Advanced directive

Current medications and current health status

Then we did some lung tests, blood pressure, temp, glucose tests, and blood work for the anesthesiologist. 

Left with a bag full of "goodies" and I start my IMPACT tomorrow, lets see if I can get it all down and I'm praying that it stays down :(

Surgery schedulded for April 24

In less than two weeks I will have a laparoscopic colectomy with ileorectal anastomosis...Surgery is scheduled for April 24th at 8:00 am.

I will be having my surgery at Legacy Good Samaritan in Portland. I have never even been inside this hospital and actually did not really know where it was located. So today we drove down and went on a little self directed tour today.

My Surgeon is GREAT... 

Nervous, scared, excited, it's still sinking in... Gotta keep on being strong...

Total colectomy with ilecorectal anastomosis

A: Normal anatomy
B: After Total colectomy with IRA

I will be having a surgery called a total colectomy with ilecorectal anastomosis.  The surgeon will remove my colon and then attach the end of my small intestine (my ileum) to my rectum.  There will be no need to have a ileostomy bag becauses of the ileorectal anastomosis (IRA), thank goodness!!!

Zombies

We must be watching too much of the Walking Dead because we were laughing about the fact that if a Zombie apocalypse happens the walkers will be so disapointed when they rip me open and find that I'm pretty empty!! I will be a snack, haha

Don't let your struggle define you!

Colon HAS to come out

I met with my favorite surgeon today for a "second" opinion.

First He shared with me the results of my latest sitz marker study. The radiologist report stated "minimal to no movement after day one" and re-confirmed my diagnosis of"colonic inerita" for the third time. By the way we took xrays until day 7 and stopped there because they had moved so very little.  I can tell you that those markers could easily stay on their vacation in my colon for the next month!!  All doctors have told me that I have colonic inertia and this surgeon described it as an "atonic colon".

Next he discussed all the tests that I have had done, diets I have tried, and medications tried. He stated that I have had an extensive amount of tests run and have been really put through the ringer with the massive amounts of testing. He stated that my doctors have done a very good job of ruling out ALL other possibilities (they have tested every organ in my abdomen and checked for problems in my entire body). He even said that I had more testing than necessary to confirm this diagnosis!  

He stated that with all my tests, things I have tried and the sitz mark study that he is 100% positive that surgery is my ONLY option.

I asked him about an ileostomy (as the 1st surgeon had suggested an ileostomy as an option) to make sure that removing the colon will relieve my symptoms. He said that there is NO reason to do that because the tests show "without a doubt" that the rest of my body is "working excellent" and that my colon has stopped working.

He explained that I am the "ideal candidate for a total colectomy with with ileorectal anastomosis" because of how healthy all my other organs are and that I passed all of the outlet tests very well.

We discussed post-op recovery and life after. Looks like I will need to stay in the Hospital for 3 to 5 days, and recover at home for 3 to 6 more weeks after that. 

We go back to the colorectal surgeon recommended by my GI who specialises in treatment of pelvic floor dysfunction and outlet problems (she did all my testing for these issues, that thankfully I'm free of) next week to hear her opinion after the latest sitz marker study.

Then we will be deciding on a surgeon and setting a date.

I'm so scared for surgery, the pain mostly. But surgery is what it's going to take to get me on the path to recovery then I'm going to "man up" and dot it.

Meeting with surgeon today for second opinion on colectomy options

I'm getting more nervous by the minute!! I thought I was ready for surgery but it turns out I'm freaking nervous!!! I don't think I'm going to handle this appointment today. I'm freaking out. Crying all day.

I'm not OK with hearing I need surgery, even though I already know it. I'm a mixed bag of emotions, most of the time I have been ready for surgery and had a bring it on attitude. But now I'm scared! Very scared! I don't want to be cut open again... The pain!!

It's getting real now that I'm most likely going  to be picking a surgeon in the next couple of weeks and then scheduling surgery after that. I'm freaking out!!

Broken

Sitzmarker day 7

Went back to St. Vincents today to get my final xray taken.  The receptionist now not only knows my name (first and last), but she knows how to spell my last name!!  Every person I talked to asked why I was still coming back. So I had to explain that the rings will still be sitting in my colon a month from now because I only "go" once a month with help of super does of medications that make me super sick for days.  They were all very suprised to hear this... Is my problem really this rare?

Took the xray and I asked to see it.  The rings did not move but a centimeter or remained in the same spot.  On one had this was devistating but on the other hand it just confirms the fact that my colon is not working.  Having this concrete evidence makes the idea of surgery less scary (well maybe not) because at least we know for a fact that my colon is dead!!

Sitzmarker Day 5

All markers still retained. Over half were grouped together in the beginning of a ascending colon (right side) and a few were scattered beyond that and were making there way into the transverse colon there were three in the descending colon.

The xray tech started to freak out because she had never seen this many markers retained by day 5. Weird (maybe she's new).  Called the ER and asked if they thought I should go imediately there because of how full my colon was (backed up all the way to my small intestine. So I explained my situation and that this is "normal" for me. She made me wait to get the OK for me to leave from the head radiologist and the ER, took forever!!

Once I was finally able to leave the head radiologist he said that my doctor would call and let me know if I needed to take another xray. I guess it's up to her if i continue xrays. I hope not. I hope i'm done, sick of having to leave my class with a sub all the time.

Dr.'s nurse called and said that she was on spring break and that the on call Dr. would call me shortly.  The next day we got the call.  I need to take another x-ray on Wednesday March 27th.  One week after i ingested the capsule with the 24 markers.  Normal transit time is 24 to 36 hours. 

This xray did give us the evidence we were looking for. Now after the next x-ray and when she returns on Monday April 1st I need to make a follow up with her to discuss my options.

Sitzmarker Day 3

Update on sitzmarker study:
Went and had my seccond xray done on today for day three of the sitz marker test.

On day one the markers had just left the small bowel as they should have, but on day three they just sat in the beginning of my asecending colon (they didn't move much if at all).  Your ascending colon is the very first part of your colon after just leaving the last portion of the small intestine.

Going back on Monday (day 5) for another xray to see if they have moved at all. 

Who she is

She's banged up,
physically and emotionally.
Literally and metaphorically.
But every day she walks outside
with a smile on her face
because that's who she is.

Sitzmarker Study Day 1

Today I had my first xray taken (day one). Its pretty sad that the office staff and xray techs know me by first and last name! They can even SPELL my last name, haha!!  This truely testifies to the amount of testing and hard work i have put into getting better.

Markers were "right where they should be"!  Meaning that they all made it through the stomach and small intestine already... So far so good.

Sitz Mark Study...What is it?

The Low Down on the Sitzmark study...

The test is used to diagnose severe constipation or other colon disorders. You are given a capsule to swallow that passes naturally through the digestive tract just as food and waste do. You will then have X-rays taken on day 1, 3 and 5.

The SITZMARKS^® capsule contains 24 “radiopaque” rings – this means that each individual ring will show up on an X-ray. You can see the rings inside the capsule before you swallow it. The capsule itself dissolves, releasing the rings inside your digestive tract. By counting the number of rings still present in your digestive tract after each X-ray, your doctor can diagnose your condition and recommend treatment options.

READING THE RESULTS: information from: (http://www.sitzmarks.com/)

If over 80% of the markers are passed by day 5, colonic transit is not grossly abnormal. If the remaining markers are scattered about the colon, the condition is most likely hypomotility or colonic inertia. If the remaining markers are accumulated in the rectum or rectosigmoid, the condition is most likely functional outlet delay, e.g., internal rectal prolapse, anismus.

1. If 5 or less markers remain, patient has grossly normal colonic transit
   
   
2. If most rings are scattered about the colon, patient most likely has hypomotility or coIonic inertia.
   
   
3. If most rings are gathered in the rectosigmoid, patient has functional outlet obstruction.
   

Update after meeting with colorectal surgeon

Met with a colorectal seurgon today at St. Vincents who siad that in order to feel better I needed to get rid of my colon. She said that I have had extensive testing, and have exhausted my non-surgical options.  There are no more medications or therapies to try.  We have tried them all.  Ugh, I was holding out for a mirical drug to come along and fix me!

She explained that there are two surgeries for me to consider.

First is an ileostomy where they leave the colon in place. If my pain and symptyoms disappear then we would proceed with taking the colon out.

The seccond is colectomy with ileorectal anastomosis.  This path would consist of removing the colon and attaching the small intestine to my rectum.

Before we begin discussing specifics of either surgery she wantes me to complete yet another sitzmarker study to confirm the diagnosis of colonic inertia, she wants an updated look.  The last sitzmarker study was done in August of 2012. 

So off I went downstairs at St. Vincents once again to the raidiology/x-ray department.  By now they all know me by my first name! They greet me with "Hi Chelsea, why are you back?"  Ha ha...wait that means I have spent way too much time at the hospital, dang! The things I find funny these days. Anywhoo, I  took the pill for the sitzmarker study imediately following the appointment so there are 24 radioactive markers floating in my belly.

The seurgon we saw today is a highly regarded colorectal surgeon.  She is very straight to the point and does not mess around. We are also going to go to my previous seurgon that performed my gallbladder surgery for a "seccond opinion". He is one of the best seurgons in the US.

Colorectal Surgeon

 

I'm counting down the days until I meet with a colorectal surgeon.

 

I'm trying to be optimistic and realistic at the same time.

 

I'm looking for answers and a solution.

 

A new medication, therapy, diet...anything...I need a next step. 

I just want to be better, to feel better, and to start living again!

ER Nightmare

Last week I was having a very high heart rate and ended up in the ER to get things checked out. I was feeling faint and very weak. I could barrly stand up and my vision was going blurry.
Heart rate monitor hooked up and normal heart beat just very rapid. Blood pressure very high.

Then the nurse tries to take blood. What a disaster!! She put the needle in, it was one of the butterfly ones and the blood would not flow past the butterfly part even with her digging around, it was a nightmare!! Then it gets worse, she hit a valve in my vein and my vein blew the needle out of my arm and blood started squirting all over me, the nurse and the room. She tried again 4 more times over each arm, digging around and couldn't get any blood to come out. I almost vomited on her at this point, and was not a happy camper.

Another nurse came in and after another 3 sticks and a lot of digging around he finally got the blood to come out drop by drop and eventually we got enough to run the tests.

Blood work shows severe anemia, low electrolytes, low potassium. Gave me an iv (very hard to start) in my hand. Nurse tells me I'm dehydrated (duh) that's what happens when u can't keep food or water down because your colon is so freaking packed with weeks of stool!

We are all  pretty sure the anemia is due to the face that I've been living on "soft" foods and very low calories.  They say the high heart rate was due to the anemia and dehydration.

Today it really hit me that I can't live this way! I can't live in pain, being so bloated that I have stretch marks on my belly and my belly button pops like a pregnant woman's.  I can't eat or drink because I'm so backed up, I am miserable all the time.

I was such an active person before, I rang long distance, triathlons and lots of classes at the gym and I loved it. I'm praying for my return to my "normal" active self!!