Author Archives: Kelly

About Kelly

I live in O'Fallon, Illinois, just 30 minutes east of St. Louis, MO

Complications from Last Surgery

2 Replies

Hello everyone!  I’m sorry it has taken so long for another post.  I have had a few technical difficulties, so to say.  When we left off the last post, I was just getting another PICC line inserted to receive TPN.  In this post, I will give you a recap of what happened during the lapse of time.

I felt so much better after receiving the TPN, no more running to the ER all the time.  In January of 2021, my Urologist told me he thought my bladder had healed from the hole I had in it, so he took the catheter out and sent me on my way.  All was going good until around August of that year.  I was running fevers and I was urinating blood.  I went to the hospital for a week’s stay.  During the stay, they pumped me full of antibiotics.  Afterwards, I was sent home with oral antibiotics.

All was well until February 2022 when all hell broke loose.  I ran a fever constantly and this time I was urinating feces!  I was back in the hospital for another week.  During this week, an incident happened.  So I had to collect my urine in what they call a hat.  I was urinating 50% urine, 50% feces.  It was shocking and alarming when I went to urinate and seen a lot of feces also.  So, housekeeping came along and was cleaning the bathroom.  One lady was overheard, by me, telling another lady in the hall that the patient has pooped in her hat and asked if they expect her to clean it up.  They were dogging me about it and I heard every bit of it.  I was hurt because I couldn’t help it and that’s why I was in the hospital in the first place.  I couldn’t help it.  The nurse came in and I told him what had happened.  I’m not sure, but I don’t think he took me seriously.  Luckily, the nursing supervisor just happened to come in and check on me.  I told her the situation and she asked me lots of questions about it.  She left and later came in and told me she talked to their supervisor and they were being disiplined.  Next time they talk about a patient, they should look around the corner!

It was determined that I still had a hole in my bladder and a fistula.  The Urologist took the catheter out when the hole wasn’t closed completely.  The doctors decided to put a drain in my bladder and the surgeon told me he didn’t want me to eat AT ALL!  Just rely on the TPN for the nutrients and calories I need.  P.S.– Anyone who knows me knows I love food!  They tweeked my TPN up alot to compensate for not eating.

I am going to stop right here and tell you the rest on the next post.  There are as much surprises as this post was.  Never a dull moment around here!  Remember to take one day at a time with this disease and don’t let it overwelm you.  If you would like to ask me something or make a comment, I am here to answer!

 

chow for now!

 

Home Sweet Home

Leave a reply

(My first day home)

Hello everyone!  I hope everything is going good your way, my way is much better!  In this post, I will tell you the trials and tribulations of finally getting home from the hospital after 29 days.

The day I got out of the hospital felt so surreal, I thought I would never get out!  I could not wait for my husband to get off work so I could get the heck outta there!  During my time in the hospital, my Aunt Shirley was on call, so to speak.  She had her bags packed ready to come and help me get around the house while my husband worked.  When we got home, she was like a breath of fresh air to me, for I knew I was close to freedom!

When I was discharged from the hospital, I could not walk very well because I didn’t have much physical therapy in the hospital due to my racing heart rate, so I had to walk with a walker.  I also had come home with a foley catheter, a pigtail (abdominal) drain and of course my colostomy bag.  I had all these drains hanging off me while I was trying to walk – it was some task!

That first week or two, I really couldn’t do much for myself.  Things that I took for granted before surgery, I now had to figure out how I was going to do them.  I couldn’t dress myself – I wore night gowns, I couldn’t shower myself – I had a stool sitting in the bathtub and my husband and aunt would help me shower.  Back then, it literally took all three of us!  I couldn’t cook for myself – either my aunt of husband would fix me something or we would order out.  I couldn’t drive – my aunt or husband would have to drive me to my doctor’s appointments, which averaged 2-3 times a week in St. Louis.  At night, I slept in the recliner in the living room because my bed is high and I couldn’t get in it, also I needed to sleep upright for my stomach.  If I needed something during the night, I would squeeze my dog’s piggy she had and it would oink loudly.  Whoever heard it first would come in and check on me…those were some good times!  Poor pig.

My mother also came up to take care of me.  There was this instance where I was trying to change my colostomy bag for the first time since I had been home.  No matter what I did or tried to do, I did something wrong.  I was on my third bag change and at my wit’s end when I thought I finally had done it correctly.  I looked down and I forgot to peel the backing off and I just broke down right there.  My mom told me to just walk away from it for awhile because I had been trying for an hour and a half and was mentally worn out.  If it wasn’t for her there telling me to walk away, I probably would have gone crazy!  I enjoyed our time time together and the talks we had.  I miss them now.  My best friend, Luann, also came up for a few days to take care of me.  I am so blessed to have someone like her in my life!

During this whole time, since I came home from the hospital, I have been eating and it came right out. I couldn’t keep anything in me because before the surgery, I had short gut syndrome and after my surgery, I really have short(er) gut syndrome!  To no surprise I was getting very dehydrated because of this, no matter how much I drank during the day.  My hair was falling out big time (I’m glad I had plenty to begin with), my nails were so brittle that they were just crumbling off and my skin was so dry and ashy it looked like it was snowing when I took my clothes off!  One day, before leaving for an appointment, I started vomiting and feeling light-headed.  I was headed to an appointment with my G.I. doctor so when my aunt and I got there, I told my doctor what was going on and she ordered some labs.  Just as I was almost home, my doctor was calling me and telling me that I needed to go to the ER and get an infusion of magnesium and potassium.  I was very low on my magnesium and that’s why I was vomiting and feeling light-headed.  I got my infusions and was admitted to the hospital for 3 days receiving more infusions until my levels were normal.  This issue happened 2 other times which landed me in the hospital again for 3 days each time.  It was then that the doctors and myself decided to put me on TPN again for the second time in my life.

I’m going to stop right here and save the rest for the next post.  This is what I endured during my recovery at home.  In the next post, I will tell you about the TPN and some of my mishaps during this time.  Just remember to take one day at a time and we will get through this together.  If you have any comments or questions, please feel free to ask.

 

Chow for now!

Life in the Hospital

2 Replies

 

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

2 Replies

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

Leave a reply

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!

 

I’m Bacckkk!

Leave a reply

Hello everyone!  I hope everything is going well your way!  I took a bit of hiatus but I am back again!  I just wanted to catch ya’ll up on what’s been going on for the last several months I have not been in touch…

Well, after the major hemorrhage that I had back in April, I had a couple more, however, not quite as major.  For some reason that the doctors still can’t figure out, my RBCs (red blood cell) counts keep dipping on the low side.  I have been either admitted to the hospital or been in the ER at least two to three times after I had the big one.  I just can’t seem to keep my bone marrow producing the blood cells like it should be!  There was this last instance when I was outside planting bushes and my doctors kept calling me and telling me that I should get to the ER and get a blood transfusion because my level was at a 7.3. (The normal level is 12-15) way lower than it should have been.  I thought the reason I was feeling dizzy was due to being dehydrated because of my Crohn’s Disease.  Anyhoo, I told the doctors they would have to wait until I finished planting my bushes or they would die!  It really had gotten that routine it was just a nuisance every time I had to drop everything and go!

I do have some great news for a change…I just got my catheter out last week!  I had mixed feelings before I departed with the catheter because it had been a part of me for 2 1/2 years and kept me hydrated and well.  I still have a little anxiety over this ordeal but I am going to only try and think positive thoughts and I can do this, I know I can!  I was thinking the other day that now I will be able to shower instead of bathe, I can wear bras with straps instead of my strapless bras and I will be able to continue doing yoga!

About 2 weeks ago, my father had a bad wreck so I was down there helping him out.  The day I was to leave and go back home, I changed my bag that morning.  It later turned out to be a big mistake!  Anyhoo, I had been on the road for about an hour when I had to pull over at a gas station and go to the bathroom.  When I got in there, I noticed that my bag had busted because the paste from changing my bag earlier hadn’t cured yet and my seatbelt had been on top of it causing the bust.  I drained the bag and prayed that I could make it home without too much of a mess.  When I got about 30 minutes down the road, my bag was really getting full and I knew I was going to have to pull over and change the whole thing..never done this in public before.

Likely I had brought a couple of extra bags just in case.  I pulled over and brought a couple of things to the bathroom with me.  My plan was to pull my bag off, clean myself up and hurry up and put another one on.  Well, it didn’t go as planned unfortunately.  As soon as I pulled my bag off, the bag overflowed all over the floor and toilet!  I hurried up and put the bag in a ziploc and threw it in the trash.  Then I had placed some supplies where I could get to them to wipe myself off and before I could get there, I was pooping everywhere!!  All over the floor again, my pants and my shirt!  I was literally freaking out at this point!  I hurried up and put the new bag on then had to clean up the mess.  When I walked out, I felt like everyone was staring at me…I figured I pooped on myself and missed something while cleaning it up.

I went straight to my car and didn’t get out again until I was home.  I called and warned my family beforehand that I was going right to the bathroom and clean myself up and put another bag on and get in the bath!  I immediately took my clothes off and put them in the wash and I was a whole new person afterwards.  It did, however, wear me out because I couldn’t rest after that 3 1/2 hour drive.

I’m not sure I will ever change my bag in public again but I do know not to change my bag before going on a long trip!  I should have just waited til I got home.  Another lesson has been learned!  After almost 5 years with my colostomy bag, I still have to take it one day at a time and learn from my experiences what to do and what not to do.  I just hope this helps someone who may be new to all this ostomy stuff not to panic, and they are not out there alone.  We all have troubles and feel down at times, even the people who have had ostomies for a while.  I tell you one thing, I have to laugh at my mishaps because if i didn’t, I would cry.  I may not laugh when it is actually happening, but after I think about it for a bit, and think of how I could have done something differently and how it probably looked like, I have to find some kind of humor to it but learn from it too.

Chow for now!

 

God’s Not Finished With Me Yet!!!

1 Reply

Hello everyone!  Hope everything is going well your way!  Mine has been very interesting to say the least.  Not something that I would like to relive…ever!

It began in March when I began to feel not – so- great.  I was in the middle of a flare from my Crohn’s Disease.  I was kinda getting nervous because I knew in another month our family was scheduled to go on vacation in Las Vegas and I didn’t want to be in the middle of a flare.  I went ahead and took the maximum amount of steroids that I could take and that took care of my energy, however, I still felt a pain in my right side.  I can live with that, right?? 

During this time, my mother – in – law had been in the hospital for multiple issues.  On one particular day I was feeling better with my flare and decided to visit her in the rehabilitation unit she was in.  While I was there, she received some bad news of a set back and she needed to be transported to big Barnes to get some testing done.  All of the sudden, I felt an all to familiar pain in my back but I kept it to myself because I was trying to be strong for my mother- in-law.  When I got home, I laid down for a while and the pain subsided a little but was still there.  In the morning, I called my doctor and described my pain to her over the phone.  She told me since I have a history of these, my best bet would be to go straight to the ER.  I did and I was right – I had developed another blood clot in my right lung again!  This would make the 3rd PE blood clot in a year!  God definitely has something bigger and better in store for me! I was in the hospital for 3 days.  Need I remind you that my mother – in – law was still in the hospital also, therefore, my husband had his wife and mother in two different hospitals at the same time!  He could get no rest, bless his heart!  I was put on Coumadin again.  Now, Vegas was really getting too close for comfort to have any hiccups!

Vegas was fun, however the first day I was there, either I twisted my right knee or my arthritis was really acting up.  I mean I was in a lot of pain with this knee and could barely walk the rest of the time there!  To subside the pain, I took a lot of Advil that I had brought with me and that still really didn’t work.  I tried not to let that stop me from having a great time but it was always there with me.  The day after we got back from Vegas, I noticed a lot of blood in my bag and was kind of frightened with what I saw.  My home health nurse came that day to check my PT/INR and other blood tests as well as to change my dressing.  She just about freaked when my PT/INR turned out to be 7.3!  The normal range for me is 2 -3.  My blood was extremely thin and she told me to not get cut or fall or else I could bleed to death!  When she changed my dressing, she noticed that my stitches had somehow popped again and my catheter was just hanging there!  I just got this thing replaced back in February and now it has popped again!  That turned out to be the least of my worries..

That night I continued to lose a lot of blood through my ostomy bag.  I felt light-headed and dizzy and my heart raced when I stood up.  I continued to feel this way throughout the night and into the morning.  That next morning, my home health nurse called and told me that my hemoglobin (blood) count was an 8.1 and that I should go to the ER (normal range is 12-15).  She told me that the doctors usually order a blood transfusion at 8.0.  My GI doctor also got these results and she told me to go to an ER pronto!  I went to the nearest one to my house.  I really shouldn’t have driven in the state I was in but I was okay sitting down and driving, it was when I had to walk from the parking lot into the hospital where I had problems.  They got me settled in an ER bed and gave me a unit of blood because now my blood count had dropped to a 6.8!  About 45 mins later, I lost a lot of blood through my bag by emptying it 3 times in a row!  The second time, I nearly passed out, thank Heavens I had a friend sitting with me that could notify someone!  During this time, my ostomy bag decided it had enough and it blew!  I literally was sitting in a pool of blood!  It looked like I was a victim in a crime scene!  I broke down while I was trying to clean myself up because I was’t feeling well and this was a lot to deal with at this time.  An all-time low for me..I just wanted to go home and jump in the bath.  The ER doctors decided that they couldn’t do much more for me so I was to be transported by ambulance to SLU Hospital in St. Louis.  I waited forever until a bed was ready at the hospital then had to waited a long time for an ambulance to take me..

When I got to the hospital, it was 12:30am.  They drew some more blood and this time my blood count was at an all-time low of 5.3!  I was losing blood pretty rapidly.  Early the next morning, I received 2 units of blood.  They diagnosed me with an active GI bleed.  That day they scheduled me for an endoscopy and colonoscopy so they could try and find out where the bleeding was coming from.  They couldn’t find anywhere that I was losing all this blood.  Ultimately they decided to chalk it up to the combination of the Coumadin I was on along with the massive amounts of Advil I took for my aching knee in Vegas.  That day I learned not to mix Coumadin and Advil!  They kept me there to monitor my blood count and to make sure it wasn’t going to go down anymore.  My blood count kept around 7.0-7.5.  When I was released last night, my count was 7.4.  I still have a way to get to the normal count of 12-15 but I am trying to eat foods that are rich in iron so that I can get my strength back.  Right now I am pretty weak, just taking a little bit at a time, but I’ll make it!  Before they released me, they sutured up my catheter so I wouldn’t have to go to another hospital to get it done.  Again, my mother – in – law is still in the hospital/rehab and my husband again had his wife and mother at different hospitals at the same time!  These past 2 months has been boogers for our family to say the least!!

Please pray for our family, we need all we can get at this time..I am so blessed to have such a great support system!

Chow for now!

Kelly

What?? Another Catheter Replacement??

Leave a reply

Me now!

Hello everyone, I hope everything is going well your way!  You will not, or maybe you will, believe that I had to have my catheter replaced AGAIN!  This time it was purely my fault – let me tell you the story..

So, every since winter started, I have been trying to figure out an exercise that is both ostomy and catheter friendly for me to do.  First, I tried walking/jogging on the treadmill that has been doing nothing lately but collecting dust.  I was doing good for a while, until my arthritis in my knees started creeping in, so I had to stop doing that exercise.  I didn’t do anything for a while which was really getting to me, so I thought that maybe I should try something else.  I decided I would try the yoga DVD that I had bought a year ago that was collecting dust.  I was really getting into that, and actually started to enjoy it.  I would say I did this exercise for about a good week and a half before I had to stop doing this also.  One day, my home health nurse did her weekly visit to collect blood and change my dressing.  She took off the dressing and started cleaning it, obviously not paying much attention to what it looked like because we were blabbering on like school girls.  I asked her if my catheter/stitches were red because the alcohol she was cleaning the area with was burning.  She looked down and told me that my stitches had been popped and the catheter was barely hanging in there!!  Obviously, when I did my stretches for yoga, I stretched too much and it pulled my catheter right out!  I knew I couldn’t do some of the stretches and the ones I did sometimes hurt a little so I would stop..not sure when it happened during that week.  She immediately taped me up as good as she could and called my doctor to tell her what had happened and to see what she wanted to do as far as replacement. The doctor had 3 options: 1. We could take it out and leave it out. 2. We could replace the catheter and 3. We could put a port in.  The doctor chose option 2..

So I told the doctor that this time I wanted to be sedated because I had a bad experience last time (see previous post).  They wanted to do it the next day so I had to hurry and let my husband know so he could take off work to take me..

Everything was going well until the doctor himself tried placing the IV into my arm..he attempted to stick it in a place I’ve never been stuck before (backside of arm) and of course he didn’t get it so he had to go up but this time he grabbed the ultrasound machine for tracking veins.  I told him where to look and he stuck the IV needle right through the gel and into my arm!  I thought to myself that I just may get sepsis from him doing something like that but I’m still here to tell the tale!  The next one was a gusher and he tried to stop it from pouring out by putting a clear tacaderm on it.  That was funny because it just slipped right off from all the wet blood that was on my arm!  Finally, he got the IV bleeding under control and when he left, there was blood everywhere!  There was a big pool of blood on my bed covers and drops of blood on the floor from where it dripped off the bed.  My whole arm was covered with dried blood and he just left me that way!  The first nurse that came in told me he was there to give me my blood transfusion – I must have looked confused, then he looked at me and told me that by looking at all the blood everywhere, I may need one!

May 2016

All in all, the surgery itself went well, a lot better than the last one!  If the doctor would have chosen the first choice, they would have taken the catheter out and put me on a medicine called Gadex (not sure of the spelling).  This medicine helps the inside part of the intestine (villi) grow back allowing me to absorb what is needed to help me thrive.  The one small drawback is the dosage involves one shot of this medicine per day.  It also makes you gain weight since you are absorbing much more than before.  Okay, the TPN has made me gain 30 pounds, now they are telling me I will gain more??!!  I know being healthy, in more ways than one, should be my main goal, however, I know me and it will affect me mentally if I gain any more weight!  No kidding, I have 7 big tubs of just my clothes in the basement because for every season, there are sizes 4-14 already, I cannot imagine adding on an extra size or two more!

All in all, I’m doing pretty good, despite a couple of mishaps.  I do feel like I am getting another fistula and my bag is pancaking but that is just something I’m going to have to live with right now, I am trying my best to take care of them both without having to go to the doctor.  I have to change my lifestyle again and drink plenty of fluids and so far, it hasn’t been too bad.  I know I need my doctor’s permission, but is there an exercise that you can recommend that is both ostomy and catheter friendly?  Maybe something low-key?  My main objective is to firm up some.  Just remember to take one day at a time and we’ll somehow get through this crazy world together!

Chow for now!

Kelly

New Year’s update

4 Replies

Hello everyone, hope ya’ll had a very Merry Christmas and a Happy New Year’s!  Sorry I have been in somewhat of a hiatus lately, just trying to get through the holidays.  There isn’t a whole lot going on with my health but there are some things I would like to mention.

Back in December, I had gone to a wedding.  During the reception, there were some people out on the dance floor looking as if they were having a really good time.  I was sitting at a table and watching them laugh and carry on.  Someone who knows me quite well and that I haven’t seen in ages came up to me and told me that the Kelly he knew would be the first person on that dance floor, no doubt about it.  Truth is, he was right.  I would be the first person on that dance floor, without a care in the world back when this disease hadn’t yet consumed all of me.  It’s as though most of my fun had been sucked out of me.  I just have so much to remember and worry about with all that is currently going on with my body.  I can’t just spend the night somewhere because I have to pack all my TPN supplies and then an extra set of ostomy supplies in case the bag that is on me should have a blowout.  I can’t plan anything that involves going in the water because of my catheter dressing.  I’m just not the carefree person I used to be any more.  I try, and I try my best to be fun loving and outgoing but where it used to come naturally, I have to try my best to block out worries and have a good time.  Sorry for the pity party it’s just when others see what I feel it just confirms my fears.

I also had a lung scan performed in December to see if I could get off my Warfarin.  I read the results online before I went in to see the doctor but wasn’t sure what he was going to do with this report.  The report read that the clot was still there as before, however, no new clots were present.  I, as well as my home health nurse figured he would keep me on the Warfarin until the clot has dissolved.  The day of my appointment, the Hematologist told me “congratulations, you can get off your meds!”  I then asked about the clot that is remaining.  He said the clot is surrounded by tissue and is going nowhere.  He then told me that there is a small possibly that the clot could come loose and go somewhere!  I didn’t have a warm-fuzzy feeling when I left his office..I got a second opinion also and they told me the same thing.  I know me, and if there is a small possibility the clot could come loose, it will!  

 All in all I have been chugging along pretty good, just little hiccups here and there.  I did read in an article that there are natural probiotics in Tequila of all things.  I have been tempted to take a shot a day, but I really do not like Tequila very much!  Maybe I will and get back to ya’ll and let you know how it works!  Currently, I have a bad cold and I’m hoping and praying it doesn’t turn into pneumonia (it has many times before)!  Of course my husband gives the cold to me and he is over it within 3 days versus when I get it, it lasts for 2 weeks due to my compromised immune system!  All I can do is take one day at a time and hopefully come out better!  Please keep me in your prayers as I will keep you in mine.

Chow for now!

Kelly

Fighting Depression

3 Replies

 

Hello everyone, I hope you are doing well.  Me, I’m doing okay, however, I am fighting a little depression these days.  I will try and tell ya’ll what is going on, if I can make some sense of it myself.

Where do I start?  I don’t know how or why this depression has slipped up on me because I try and try my hardest to live one day at a time and not look back.  I know you can’t live your life looking back, you must always move forward with your life.  Although I know all of this, reminding myself is another task…

Well, my youngest daughter turned 16 a few weeks ago and it just seems as if we have been head to head about things since her birthday!  It’s just one thing after another with her these days.  I guess she is trying to see what her boundaries are.  I’m strong but every once in a while I need a break!  It’s just the drama we have to go through to get to an endpoint is unbelievable, but of course I still love her!

At the same time, I am thinking of the future and future bills we will come across.  The big one is Bella’s college and then she will need a car for college.  It seems like a lot of money when just one person is working and the other on disability.  I am feeling the itch to get at least a part-time job, however, I know me and will eventually end up in the hospital for some reason and with that comes multiple doctor appointments.

I know I should give my worries to God, and I do on a daily basis and I also know that I should live one day at a time, but I can’t help to think that I should help with the bills that will be coming in.  As you can tell, I still struggle with this no working thing after 5 years.  I have never had to rely on someone else to help me out with the bills, house cleaning and taking care of myself at times but this is what this disease has done to me.  I feel as if I am a totally different person than I was before.  I used to be self sufficient and hard working and was proud of myself for accomplishing that.  There are some days now when I try my best to muster up the strength to get out of the bed and onto the couch.

Sometimes I ask myself and God what I did that was so wrong that I am being punished for now.  I probably don’t want to know the answer to that!  I admit, I wasn’t exactly an angel in the past but that was in the past, way past.  Maybe I should believe that God is preparing me for something excellent that he has for me in the future.  I need to be ready for what he has in store for me!

If I think about it in that way, I do feel better about all the things going on in my life.  I also feel better now that I have talked out what all is in my head and have many ears listening to me.  Thank you for being here for me.  You can imagine what all this has done to my Crohn’s Disease, can’t you??  I am trying to get my diarrhea under control as we speak.  Please send up a little prayer for me today.  I truly do feel better now, thanks again!  This is just another symptom of having Crohn’s Disease – depression.

Chow for now!

Kelly