Category Archives: surgery

Emergency Surgery??

Hello everyone!  I wanted to continue with the last post as soon as possible because there is a lot of details to tell you about.  They are almost unbelievable!

I left off the last post telling you that the ER doctor had just told me he thought that I would need emergency surgery.  He also told me that they needed to transport me to another hospital because their hospital wasn’t equiped for that (it’s a small hospital).  They were just waiting to hear back from them at that time.  I waited and waited, still in the ER.  Sometime during the night, the doctors/nurses came in to tell me that the hospital, that is my home hospital that I had most of my surgeries at, turned me down saying that I was too complicated of a case.  The doctors should get a hold of Mayo.  So the doctors there at this small hospital called Mayo and Mayo wouldn’t except me saying that they were confident the other hospital could do it.  So now I felt like I was a hopeless case and nobody wanted me.  The other hospital in St. Louis refused again so Mayo agreed to take me then.  Let’s put it this way, if I was supposed to have emergency surgery, these hospitals weren’t getting in a hurry!  I spent the night in the ER.

Mark is at the hospital at 9:00am the next day to see what is going on.  I had texted him in the middle of the night letting him know that they are taking me to The Mayo Clinic now, the St. Louis hospital wouldn’t accept me.  The doctors at this hospital told me that they didn’t want me to ride in an ambulance for 8 hours so they were going to try and helicopter me out.  At this time, the hurricane was coming through our area so we had to watch the weather to find a time to get the helicopter going (my luck).  About 2:00 that afternoon, they told my husband that he could go ahead and leave for Mayo and I will be there shortly after him.  I was supposed to fly out around 4:00pm.  He took off and during this time, there is an update to the weather and I couldn’t fly out until 8:00pm now.  My husband called to let me know he arrived in Rochester around 9:30pm, I told him I was still waiting and they told me it would be around midnight now.

Believe it or not, I was still there at 8:00am the next day!  This is day 3 in the ER now.  My husband was in Rochester waiting on me and the nurse came in to ask me if I thought another St. Louis hospital could look at me.  I told him that my husband is waiting on me and Mayo does know me and my complications so I’d rather just go there.  They understood and I was finally helicoptered out around 2:00 that afternoonI was helicoptered from the hospital to Lambert airport in St. Louis, then placed into a Lear jet at Lambert and flown to Rochester, MN.  From there, I was placed in an ambulance and traveled to The Mayo Clinic.  What a day!  I arrived around 4:30pm. with my husband waiting on me.  While I was in the ambulance, I threw up because somewhere down the line, I developed a migraine.  The nurse was pumping zofran in one arm as I was puking.  When I got to the hospital, I puked again and the nurse there gave me compazine in my PICC line during then.

In case you didn’t know, both Zofran and Compazine are anti-nausea medications that make you drowsyI had received both of them in my PICC line about an hour apartThey kicked my butt!  I was dozing off every minute I could.  The nurse was asking me all these questions and I don’t know what I told her, if anything!  I do know they wanted to do another CT scan with contrast while I was there that night.  That meant I had to drink 2 glasses of the contrast before going into the scan.  I was knocked out!  I would wake up, take a drink, pass back out and Mark would yell at me to wake up and drink more!  I managed to get my scan over with (not sure how) and slept for the rest of the night, kinda.  The nurse tried her best to wake me up to get my vitals 3 times in the middle of the night and it was like wrestling with a sloth!  I could here her yelling at me, but couldn’t figure out how to get my arm where she needed it.  That continued until about 10:00 the next morning.  I am not like that at all, the least little noise, I’m up and looking for what it was.  I had been drugged!

Friday morning came about and the doctors came in to visit.  They said the CT scan showed the loop and abcess, however, with the contrast, they could see that there wasn’t a hole in my intestine.  The intestinal lining was thinning at that place, however they couldn’t do anything for it at the time.  So I guess I’ll just wait until it gets thin enough to develop a holeI’m not sure I like that either.  They’re plan of attack was to just give me copious amount of antibiotics and let it run it’s course.  They also told me finally that I could eat.  I hadn’t been able to eat or drink anything the whole week leading up to this moment. I ordered that biggest breakfast I could and ate every bit of it!  The doctors did mention that I should be able to leave the hospital the next day, that made my day also!  That night rolled around and I had a new nurse.  She changed out my antibiotics and such and then I thought I heard her ask me if I wanted a back massage!!  I said, “Hell yeah” but then I knew that I couldn’t have heard her correctly and was panicking just thinking about what I agreed to!  She was looking all over the room for something and when I asked her, she told me she was looking for the lotion, then I really panicked, LOL!  After the 5 minute awkward back massage, I texted my husband, friend and daughter and told them that never I have ever received a back massage at any hospital!  Of course they laughed with me!

Saturday morning rolled around and the head of the Gastroenterology department came in to talk to me to see how it was going.  She was really nice and gave me some information and told me that I could go home!  About noonish I was all packed, dressed and ready to go!  Mark and I was on our way and ready for that 8 hour drive back home!  We rested that night and the next day, we went to see our new grandson that was born the week all this was happening.

What a week!  I was so ready to settle down get back to normal.  I’m not a fan of the hospitals because I always end up staying and feel as if I have so much other stuff to do.  It feels like a big interruption of my life and I have to play catch-up when I get home.  I really should learn to relax a bit and I’m trying.  Let me know if any of you have had a similiar experience or would like tell me something that happened out of the ordinary within a hospital setting.  Every experience is unique – never the same!  Just remember to take one day at a time with this disease and we’ll get through it together!

Chow for now,

Kelly

 

 

Everything Happens For a Reason..

Hello everyone!  I hope this post sees you well.  Once again I had a hiccup that pushes other things to the back but I think you will find this one very interesting.  This post shows you that everything happens for a reason.

Since the last post, my Legionaires Disease has dissipated and I have a clear scan on my lungs! When I was in the hospital for that, the doctors took me off my medication for the Crohn’s Disease (Rinvoq).  When I got home, I tried to restart my medication, however, without prevail the medicine stopped working.  This means that now I’m not on any medication for my Crohn’s and this is not a good thing!

During this time, I developed a pain on my right side (again).  This pain was getting worse by the day and I started developing a low grade fever that eventually became a high fever.  I tried to live my day as I always did but at night, I would have the heating pad on me.  I called the doctor to let her know the Rinvoq was no longer working and that I felt I needed to try another medicine.  She agreed and wanted to put me on Skyrizi, after we got approval from the insurance, of course.  It took only a week to get it approved, the next step was to get a TB (Tuberculosis) blood test…

On a Monday, I went to Quest to get my bloodwork done so I could receive the Skyrizi.  While I was there, another doctor had ordered some bloodwork for an upcoming visit.  I told them to go ahead and get that bloodwork also to save me another trip.  I went home afterwards and all was good, so I thought.

The next day, the other doctor’s office called to tell me that my Magnesium was dangerously low and that I needed to get to an ER to receive a Magnesium infusion.  I kind of brushed it off because I didn’t have any symptoms of a low Magnesium, I had a bigger pain – my right side. I thought to myself that I would just double up on the Magnesium supplements.  Throughout the day, the doctor’s office would call to make sure I got to an ER and everytime they would yell at me for not going sooner.  When my husband got home from work, I told him that I would go to the ER down the road to get my infusion, and he could go to his volunteer activity.  This was pretty routine for me so no big deal, so I thought.

It was raining so there wasn’t many people in the ER (only 2), thank Heavens.  They got me right in.  I told them what was going on and that I also had a pain in my side.  The doctors told me they would give me a CT scan while I was there.  When I was scanned, they didn’t give me the contrast because they said I had a history of an allergic reaction to the contrast – which I did back in 2017 when I had the PE blood clot but I had many other scans afterwards with contrast and I was okay.  Anyway, when the results came in, the doctor came in my room, pulled up a stool and didn’t have a happy grin on his face.  He told me that my Magnesium was a little lower than before and that they will get that up with the infusions, however he was more concerned about the CT scan results.

The CT scan results showed that I had a pretty big abcess where the small and large intestine connect (I have had 2 surgeries there previously) and that I had a loop of intestine that was bringing in air from my abdominal cavity causing me the copius amounts of gas I’ve been having and that my small intestine was perforated.  He told me that he believed I needed emergency surgery.  I freaked out!  He left abruptly because of a phone call and I called Mark to tell him what was going on.  He freaked out also because the last thing he knew was I went to get a Magnesium infusion and I should be home that night or the next day.

I’m going to stop right here for the time being.  It is quite a long story and I don’t want you to get tired of it because there is alot more that went on that week!  Just remember to take one day at a time with this disease or any other autoimmune disease.  Things can change in an instant!  If you have any questions or comments, please feel free to ask.  We are in this journey together.

Chow for now!

Kelly

 

Remission?

Hello everyone!

I am sorry that I haven’t written anything in a while.  The combination of Entyvio and Stelara that the Mayo Clinic had put me on resulted in a short remission and I tried to live my life to the fullest during that time!

In March, I went to the Mayo Clinic for a checkup.  They performed several tests and came to the conclusion that I could finally get my drain removed, my fistula had closed thanks to the combination of the two meds!  I was so happy!  I could finally soak in a bathtub!  When I got home, I felt great!  I had a doctor’s appointment in April and the doctor told me since I was gaining my weight back and keeping it on, that I could stop the TPN!  They still wanted me to keep the PICC line in and monitor me to make sure everything will be okay (I’m glad they did, later on).  The doctor did prescribe a couple of bags of saline in case I felt dehydrated, I could just hook myself up to rehydrate.

During this short remission, I lived like I was on borrowed time, (and I was)!  I ate what I wanted to eat, drank what I wanted to drink and my house had been cleaner than it ever was!  LOL I had so much energy and I was so happy that I could finally feel like a normal person for a change, I even signed up for a lot more volunteer opportunities this summer!  During this summer also, my husband was traveling a lot for work and I would have to take care of the house inside and out, so then was a good time for this remission to happen.

Around mid-summer, I was sitting on the couch late at night and I felt something very familiar.  I felt a little air pass through where my fistula once was.  I wanted to dismiss it thinking it was my imagination, however, I knew deep down that there was a possibility that my fistula was coming back. — So, just to recap exactly where this fistula was, my small intestine (or what was left of it) had dropped down and attached itself to my bladder fusing my small intestine to my bladder.  Before I had taken the meds, the fistula was causing my small intestine’s contents to leak into my bladder, therefore, I was urinating feces while “urinating” causing severe urinary tract infections.

I kept a vigil every time I felt something that wasn’t quite right. I would note what I ate, what I drank and when I would feel that feeling.  At first it was maybe once a month I would feel some air leakage.  Then it got a little more frequent as time went on.  I then started to notice some symptoms of a urinary tract infection (burning, feeling as if I to go frequently, etc.)  At this time, I had a doctor’s appointment with my gastroenterologist.  I told her my story and what I was feeling at that time.  She ordered a urinalysis and told me she may change my medicine up next visit.  The urinalysis for a UTI came back positive.  So, for me that means my fistula is returning and is leaking again, not sure what the doctor thinks yet.  She ordered me some antibiotics for that UTI.  The UTI disappeared but now I feel as if I may have another.

I am not ready for what the future holds for me quite yet.  I still have a lot of living I want to do.  I am also trying not to get so down on myself because I know it won’t help anything.  This disease is so horrible and unfair, it lets you feel good then shoots you back down without any warning. There is at least one good thing that has happened to me this summer.  I made a new friend who has Crohn’s Disease also. I know I can talk to her when it starts getting too much for me or just to have someone there who knows what I’m going through and how I’m feeling.  Of course I can do the same for her.  I do believe that God puts the right people in the right place when it is needed the most.

Again, I’m sorry that I haven’t written in a while, but I had to get my time in while I could!  I hope that everything is doing well with all of ya’ll.  Remember to take this disease one day at a time, as I need to take to heart now. Please keep me in your prayers. I have asked God for one more favor and I know it will come to light when the time comes.

Chow for now,

Kelly

My, My, My, Myyy Seroma!

Hello everyone !  I hope everything is going well for everyone.  In my last post, I told everyone about my “Big” surgery, this time I would like to tell you about an experience I had after the surgery.  I will tell you one thing, if I didn’t have bad luck, I wouldn’t have any luck at all!!

When I returned home from having surgery at Mayo this past October, I noticed a large bump underneath my incision.  As the days went by, I also noticed that this bump was getting bigger by the day.  I got home on a Saturday and by Friday of that same week, I spotted some liquid seeping out from under my incision.  The surgeon had told me before I left that if I seen any liquid coming out and if I had a fever, to go to the emergency room as soon as possible because I could have an infection.  I called Mark at work and told him what was going on and that I believe I should go to the ER before I start developing a fever.  He agreed and left work a little early to take me.

When we arrived at the ER, boy, was it crowded!  This was during the time RSV and the Rhinovirus was prevalent throughout the area and there were a prethora of children throughout the ER.  We sat there for a total of 3 hours before we were seen in a room.  During our wait, a nurse needed a urine sample while I was still sitting in the waiting room.  She gave me a cup and I went into the bathroom.  OMG!  My clothes were soaked all in the front!  My shirt and pants were soaked and I didn’t have a change of clothes with me.  The bump had exploded and I didn’t feel or see it until I got into the bathroom.  Before we left, I had put a bandage on the area where it was leaking, however, then it was a small leak.  Now, I had to go back and wait in the waiting room that was packed full of people, and sit there with soaked clothes.  I told the nurse, however, she acted like it was no big deal.  I felt as if everyone was staring at me.

We finally get back to a room.  The nurse wanted me to put on a gown, however, I told her that my clothes were soaked with some kind of unknown liquid coming from underneath my incision.  She just had me expose the area where the liquid was coming from.  The doctor came in and took a look and told us it looked like a seroma A seroma is a pocket full of liquid that developes under an incision usually after a surgery.  It grows until it finally pops.  The scary thing is it could come back at any time and expode again multiple times and it could do this up to a year!  I was kind of low-key freaking out!  The doctor squeezed the area until all that was coming out, came out.  They gave me some pain pills and bandaged the area up and sent me home.

For the next 3 weekends, the area leaked a lot.  It was weird, it wouldn’t happen through the week but only on the weekends.  Anyway, it stopped flowing finally and life got a little better.  It never fails, I always have some kind of issue after a surgery, whether it be a seroma or being put on a ventilator, something is going to try and take me down but I’m still here fighting it tooth and nail!  All you can do is take this disease one day at a time because it will try and do it’s best to overwhelm you any chance it can get!  If you have any questions or comments, please let me know.  It’s never a dull moment with me!

Chow for now,

Kelly

 

My “Big” Surgery at Mayo!

Hello everyone!  I hope this post sees ya’ll doing well.  I would like to give you the details regarding a surgery that I had at Mayo this past October.  This surgery would entail fixing the hole that is in my bladder from my 2020 surgery and fixing the fistula that has also been there around the same time.

Back this past August, I decided to go ahead and have a surgery that would get me back to feeling better and being my old self.  I have had a drain in my abdominal cavity since this past 2022 February and I was desperately wanting it out because I really would like to swim and soak in a bath.  I really didn’t know how much I missed it until I couldn’t do them.  I also decided that I wanted The Mayo Clinic to perform the surgery because they were supposed to be the best around.

When I called for a date for the surgery, I tried to get ahold of my G.I. doctor there and they told me that he had graduated, because he was a fellow, so they looked to see who his attending physician that was over him was and he too, had left The Mayo Clinic in Rochester to go to The Mayo Clinic in ArizonaThat meant that I did not have a G.I. doctor at Mayo anymore to schedule the surgery for me.  I told Mayo my situation and they told me I could go ahead and have the surgery then they would assign me a G.I. doctor to look after my recovery.  I called my surgeon, someone who I had already met with previously, and scheduled a surgery date.  October 25th, 2022 would ultimately be the day.

The time was approaching quickly.  My husband and I went to The Mayo Clinic on a Sunday, I was going to go through testing and consultations on Monday and the surgery was on Tuesday.  I seen the urologist first.  My husband, Mark, and I immediatly liked her.  She was very thorough in her field.  She did a cystogram test on me to see exactly where the hole in my bladder was.  Mark was also in the room and could see the inside of my bladder, the hole and the fistula.  He thought that was pretty neat and in the meantime I’m not liking the test at all because they had  to stick a cannula through my ureter in order to take a look.  I was very uncomfortable.  In the meantime, she seen what she was looking for and we finished and went on to the surgical appointment.

The surgeon told us that the surgery could go either of 2 ways1) she could get in there, find what she’s looking for easily, fix it and get out, or 2)  get in there, can’t find the area easily and have to cut her way through and a lot more intestine would be cut out.  That’s not good because I already have a short gut and really can’t afford to get much more cut out.  At least she told me the truth even though it wasn’t pleasant.  The next appointment was with the anesthesiologist.  She just asked a whole lot of questions about everything.  I was given my meds for a good clean out and left Mayo just to see it again early the next morning.

When we left Mayo, we went shopping and out to eat.  I could eat one meal before I started to clean myself out.  I chose a place where they serve breakfast all day.  I had all the fixins of a breakfast that I could handle then we barricaded ourselves in the hotel for the remainder of the night.  Later that night, I had to call The Mayo Clinic to see what time I had to be there for my surgery.  Surgery was at 8:00am.

I got there bright and early that morning.  Everything seemed to be going as scheduled.  My whole team consisted of women; the surgeon, the urologist and the anesthesiologist.  I knew I was in good hands and was told by a couple of nurses there that I had the A team.  I was also told that I had the best surgeon they had so I felt really confident my surgery was going to go good.  The anesthesiologist told me the day before that they were going to give me an epidural of opiods in my spine instead of giving it to me through the IV because it would be less addictive.  So they reel me in, give me the epidural, sedated me and out I was!

When I woke up, I remember them bringing me into a hospital room.  My husband was there and he told me they didn’t do anything to me!!!  They opened me up, looked around, cut a few adhesions out and closed me back up!  Neither one of us was very happy at that time.  When the surgeon came in to talk to us, she told us that they opened me up and my small intestines where attached to my bladder, therefore she couldn’t lift them off the bladder to see the fistula nor the hole without my quality of life changing drastically so she sewed me back up.  That said, if I ever have to have another surgery, she told me she would have to take all my small intestine out and I would be TPN dependent for the rest of my life.  We understood where she was coming from then, but I still didn’t like it because I still have this drain attached to me.

After 5 days in the hospital, they released me to go home.  I noticed something wasn’t quite right with my stomach but wasn’t sure what it was until about a week after I got home.  I’m going to save this secret until the next postAnother adventure.  Just remember to take this disease and all of it’s issues one day at a time.  I was really looking forward to getting things fixed so that I can go on living my life the best I can.  On the other hand, as bad as I must be for Mayo to open me up and close me back up, I still believe that I have a little bit of life left in me before the next “Big” surgery comes around.  I’m going to begin living my life to the fullest until then!

Chow for now,

Kelly

 

 

 

 

 

The Mayo Clinic

Hello everyone!  I hope this post is finding you doing well.  I’m still chugging along.  In this post, I will tell you about The Mayo Clinic, how I got into it and what happened the week we were there.  The way things are done there is so different from what I am used to from all the other places I’ve been!

In my last post, I told you that my G.I. surgeon told me that he would talk to some of his contacts about getting me into The Mayo Clinic.  Well, I waited and waited and on occasion I would drop him an email to check the progress and to “remind” him if nothing had been done yet.  In the meantime, I have a drain in my bladder that the doctors told me I would have to keep in until I see someone from Mayo.  I was getting anxious to see someone and get this thing out!  One day, I was sitting at the computer and decided to look up The Mayo Clinic to get some information about it.  As I was scrolling, I noticed there was a button on the right that said, “make an appointment.”  I thought to myself, “It can’t be that easy to get into Mayo because my doctor is trying and can’t even get into it.”  So I push the button to see what would happen.  Low and behold the page was asking for my information and what time would be a good time for them to call me!  They called me the next day and I made an appointment to see them!  When I thought about it, I became furiated at my surgeon because supposedly he had been “working” on this for 8 months and kept telling me that it was difficult to get in and I just pushed a button and made an appointment all in a day!  

Within a couple of weeks, The Mayo Clinic sent me a schedule of tests and consultations that I will be going through during our visit.  It was a whole week’s worth (Monday-Friday)!  I had all kinds of consultations with several doctors and all kinds of test, some I’ve never even heard of!  This had just become real to me!

We went up to Rochester, Minnesota on a Sunday because my first appointment was early Monday morning.  It took my husband and I around 8 hours to get there.  When we arrived at the hotel, I noticed they had a shuttle sign-up sheet to go to and from Mayo. Nice.  We put our things up and left to find food.  We tried one of Minnesota’s staples – cheese curds.  They are delicious!!!  Everytime we go there now, that’s the first food we look forward to eating!

We get to The Mayo Clinic and WOW, this compound is huge!  Even though it is huge, it is so easy to manuver around.  My initial consultations were an hour long.  The doctors literally ask every question you could think of.  They were thorough in everything they asked and they actually listened to what you had to say.  Throughout the week I also had all kinds of tests such as MRI’s, CT scans, drain checks, blood draws, ostomy checks, colonoscopies, endoscopies and others that I never had before and can’t remember the names of the tests.  I literally felt like a guinea pig after the week ended but we learned so much about how Mayo works.  We love that place!  Since then, we have been back 3 times.

The Mayo Clinic is definately worth a try if you feel your care needs a boost.  My Crohn’s has been a trouble maker every since I turned 40.  I’ve had this since I was 25 and it seems like the older I get, the more troublesome my Crohn’s gets. I will definately go back because I love the way the people treat me.  They actually listened to what I have to say about what is going on with my body.  The next post will tell you what recently happened during a surgery that I had at Mayo.  If you have any questions about Crohn’s, Colitis or Mayo, please feel free to ask! I have also added a link to the Mayo Clinic to the right of my post if you would like to view their website.  Remember to take this disease one day at a time.  Right now, I need to take my own advice.

Chow for now!

Kelly

Life in the Hospital

 

Hello everyone!  I hope everyone is doing well these days, I’m hanging in there myself.  In this post, I will tell you what it was like for me to recuperate in the hospital during my 29 day stay.  It felt like a lifetime!

So, let’s pick up from where the last post left off.  I told everyone about my ventilator experience.  Now, this is my time after waking up but still on the ventilator and completely off.  The first thing I remember when I woke up is these two male nurses talking in my room.  One worked at the hospital and another was a military nurse that was interning there.  I hadn’t opened my eyes yet so they didn’t know I was listening or was even awake.  They were each talking about their wives and what hobbies they liked doing together.  It was really sweet to listen to them talking highly about their wives.  All of the sudden, one of them starting yelling my name, thinking he was waking me up from being on the ventilator.  I didn’t open my eyes yet and I heard him tell the other, “She’s probably pissed off, I would be too if I had to be on the ventilator.”  I then opened my eyes and the both of them rejoiced!  They were giving each other a high five and asking me how I felt.  Of course, I still couldn’t talk because I was on the ventilator still but I gave the thumbs up.  They then started telling other nurses in the hallway I was awake.  They also stripped my bed sheets, stripped me of my gown, gave me a sponge bath, changed my sheets and I felt like a brand new person! By this time, I had no shame in male nurses vs female nurses.  All this happened about 4:00 in the morning.

In the following days, the Respiratory Therapist gave the nurse the thumbs up in getting rid of the ventilator.  That day, the doctors made their rounds and the RT came up to me and told me that he was following my case closely because his wife has ulcerative colitis and wanted to know what they could be facing in the future with her disease.  He then gathered the nurse and a technician and took out my ventilator.  They told me to take a deep breath in and while I was doing that, they were taking the ventilator out.  I thought I wasn’t going to make it, it was a scary thing to go through.  I couldn’t breath until the ventilator was completely out.  My mouth/teeth were heavily coated with some funky buildup that comes from having the ventilator in my mouth for 10 days, vomiting and not brushing my teeth since the beginning of the month.  I was pulling chunks out of my mouth that were caked to my teeth.  The nurse handed me a warm wash cloth to wash my face and then toothpaste and a toothbrush. When I finally got cleaned up, the nurses asked me if I wanted to call my husband at work.  They handed me the phone and I called – he was surprised!  I believe I called a lot of people that day – I finally had a voice even though it was soft and scratchy!

The remainder of my stay was very interesting and heartbreaking with many ups and downs.  The nights were sleepless.  They ended up giving me Amberen to help me sleep.  With all the bells and whistles that were going off at all hours of the night, there was no way this girl could sleep.  Also, there were many days that I was in there and couldn’t do my physical therapy because I had a problem with my heart rate.  I would just sit on the side of my bed and my heart rate would jump up.  Physical Therapy wouldn’t “walk” me if and when my heart rate was too high.  That meant my walking sucked.  I was so afraid I wouldn’t walk right again because I wasn’t getting enough PT.  I also had so many wires coming off me, it took 30 mins to get me into the chair just to sit.  The surgeon wouldn’t let me eat anything for a week after I got off the ventilator because he didn’t want to “wake up” my digestive system for all the problems we were having at the time.  One thing at a time.  The only thing I could do was put ice chips in my mouth and suck them out with suction before I swallowed it.  I wanted so bad just to swallow some, but I didn’t.  Didn’t want to wake up my digestive system.  The days were boring, I had never watched so much tv.  I couldn’t wait until Mark got off work so we could visit for a while.

One day, I had a nurse that made me so nervous.  She was older, and she talked my ear off and really didn’t pay attention to what she was doing.  She was trying to give me my call button and she accidently pushed a wrong button somewhere that signaled a code.  All the sudden I had all these doctors and nurses in my room looking at me and wondering if I was coding.  Also, she was draining my colostomy bag and wasn’t paying attention to what was going on and spilled poop all over my bed.  I was laying in poop!  The next day she was scheduled to be my nurse again and my night nurse had heard what she had done the day before.  She told me that I could request another nurse for the day if I wanted, so I did!  That other nurse made me feel anxious and there was no way I was having another day like I did the day before!

While in the hospital, I was fighting depression.  One big reason was my daughter, Isabella, was moving out and getting an apartment.  She was going to be a big college freshman.  Even though I was still in the hospital, it was time for her to move and start getting ready to go to school.  I was thinking that I, her mother, should be at home helping her pack and move.  Something that mothers and daughters do together and look forward to.  I would just sit in my chair in my room and look out the window and wish so bad that I could be with her.  Even though she reassured me that she was handling it and her father was helping her, it was heartbreaking.

I was so looking forward to finally going home.  When that day came, the surgeon came to see me for the last time in the hospital.  He was taking a look at my stomach, all of the sudden, he stuck his finger in some stitches and broke them apart creating a big hole in my stomach!  I asked him what the hell he was doing.  He told me he was afraid that those stitches were going to get infected so he wanted them to heal again.  So now I’m going home with a big wound on my stomach that I have to take care of at home.  I also had to go home with a foley catheter and a drain tube coming out of my stomach because I now have a hole in my bladder from the surgery.  Long story short, I had scar tissue that adhered my bowel to my bladder so the surgeon had to call the Urologist in to take care of the bladder part.  While healing, the hole appeared in my bladder.  I still have the hole to this day and still have the catheter and drain in.  That’s an ongoing problem I’m having now.  Hopefully I won’t have to go back into surgery for this.  Instead of my 2 day recovery, I ended up staying 29 days and I had to learn to walk again because I didn’t have much PT in the hospital.  I walked with a walker for about a month after being released from the hospital.  In the next post, I will tell you the trials and tribulations of being at home facing the uncertain.  Remember to take one day at a time and keep moving forward!

 

Chow for now!

The Aftermath

Hello everyone, I hope everything is going good for ya’ll!  For me, I’m hanging in there.  In this post I’m going to share with you what I remember the days after surgery.  There are a lot of firsts that happened this time around!

After the surgery (small bowel resection and scar tissue removal) I woke up with a NG (Nasogastric) tube coming out my nose. I’ve never had one of these before but I have certainly heard about it from a support group that I’ve attended.  I thought this was funny looking because it was taped to my nose so I had to snap a few pictures with it!  Well, I’ll tell you something, it definitely wasn’t funny coming out!  The tube extended from my nose to the inside of my stomach and it felt like it covered the whole inside of my throat and nasal cavity when it came out!

From here on out, I have to rely on partial hearsay due to the condition I was soon to be in.  So, somewhere down the line, I developed pneumonia in both lungs.  I had also developed a high fever so they thought I may have the Corona virus!  I was in the ICU when all of the sudden the doctors and nurses fully geared up for the Corona virus and tested me.  I tested negative.  As the days went by, I was placed in and out of the ICU several times.  The surgeon gave my husband the choice of putting me on the ventilator before it became an emergency or wait until it became an emergency.  Of course, my husband chose to put me on it then.

While I was on the ventilator, they had me totally sedated and tied down.  Unfortunately, I tried to pull the ventilator out so they had to put big mittens on me and tie them down to the bed.  I couldn’t even scratch my nose when needed!  There were a couple of times I actually vomited in the ventilator also.  Of course, no one would be around when I vomited, so I would have to lie there until someone came in to check on me and clean me up.

You know, when I was under sedation, I had some very weird, dark and twisted thoughts that I could have sworn I heard and were true but were not.  Just like I was living it.  Some of these were:

  • My aunt, grandma and dad were literally throwing money at the surgeon so that he would perform surgery on me.
  • Mark (my husband) decided to cremate me alive.
  • Mark and I decided to go to a voodoo doctor to heal me, however, it didn’t work.
  • Mark and my best friend, Luann dropped me off at a hospital in Louisville, KY for surgery but they didn’t stay.
  • While I was in the hospital, the doctors and nurses mistreated me so I called Bella to get me out and her and a friend busted me out of the hospital.
  • Mark put the house up for sale.

I don’t know where in the world those dreams and thoughts came from but I did not like being sedated at all.  It was terrible.  There was one instance where I knew I was in my right mind..there was a nurse, (or could it have been an angel?) who would come in my room and wipe my face with a warm, wet cloth and pray over me.  It was so calming.

To my knowledge, this is what I had endured after my surgery.  I believe the surgery itself was a piece of cake compared to what I had experienced afterwards.  Remember to take one day at a time and keep moving forward.  We are all in this crazy world together!

Chow for now!

 

Well..I’m back again but different

Hello everyone!  I hope everything is going well your way!  I am sorry I haven’t been around lately until now, however, there was a time where my life had nothing new going on so I just placed myself in hiatus.  Now that I have had another surgery, I am back to having a lot to talk about and boy is it different from the last!

I decided to have another bowel surgery because I started having a “bloated” feeling.  It seemed that every time I didn’t chew well or I ate too fast I would get bloated and feel like I just ate a four course meal. I would go out with friends and end up not eating or drinking with anyone because I literally couldn’t fit anything down me.  I was losing a little weight because I could only eat a little at a time and I was constantly running a low-grade fever.

After delaying it for as long as I could, I finally called my surgeon and set a date for the surgery.  The date was August 3rd, 2020.  The surgeon told me that he was going to take out the dialated part of my small intestine then clean up the scar tissue (if any) as well.  A few days later I received a letter in the mail from my health insurance company informing me that they have approved 2 days for recovery in the hospital.  I thought to myself that it’s going to be longer than that, knowing me and boy was I right!

Please read my next post to find out how the surgery and recovery went.  It’s something worth reading, trust me.  Also, just remember to take each day as it comes.  We’re in this together!

 

Chow for now!