Category Archives: Diet

Emergency Surgery??

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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 afternoon.  I 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 drowsy.  I had received both of them in my PICC line about an hour apart.  They 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 hole…I’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..

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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

 

My Annual Trip to The Mayo Clinic in Rochester, MN 2024

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Hello everyone, I hope this post sees you in good health!  In this post, I will let you know what happened while I was at The Mayo Clinic this year and I won’t disappoint you!  I will also let you know the dilemmas I had to go through during this time.  Never a dull moment!

So, referring back to my last post, we were on the way up to The Mayo Clinic for my annual visit.  While we were driving, I received an email from my doctor explaining that she had accidently sent the Prednisone to the incorrect pharmacy, that’s why I didn’t receive it until a week later.  Anyhoo, at least my meds were waiting for me when I get home.

When we finally got to Rochester, MN (8 hours later), we were starving!  My instructions for my Endoscopy for the next morning told me to fast for at least 8 hours before the test was performed.  It was around 5 o’clock when we ate and my test wasn’t until 7:00am the next morning so I believed I would be okay.  I followed the instructions, right?  Every time we get up to Rochester, we have to have some fresh cheese curds first thing.  They are so good, coming from all the dairy farms around there.  YUM!  So, we completely stuffed ourselves because we had some good food and wine!  We went back to our hotel room and I couldn’t eat or drink anything else for the rest of the night.  We also had tornado watches and strong thunderstorms in the area, what a night!

We get up bright and early the next morning because I had to be at Mayo by 7:00am.  I was the first one there but it took forever when they finally called my name to go back.  I waited in the back, which seemed like forever because people that were there after me were going ahead of me.  I think it was because I was considered a special case because of my ostomy.  I finally met with the doctor and nurse and they told me exactly what they were going to do and what they were looking for.  I can’t wait to hear what they found because during this time, my fistula had really opened up.  One good thing about having a PICC line is I don’t have to get stuck for an I.V.  I hate those things!

The nurses are waking me up in no time.  They don’t say anything about the test, they only ask me a lot of general questions and ask if I want anything to drink.  I order a Sprite and it tastes so good!  I’m there for a good 30 minutes and they discharge me.  So now we have one test down, one test to go…at 7:45pm!  We go back to the hotel after the Endoscopy and I change just the bag part of a 2 piece because they got some poop on it during the test.  I read the instructions for my 7:45pm MRI that is scheduled.  It told me to start fasting 4 hours before the test is scheduled so I have until 3:00ish just to make sure.

We piddle around the hotel and then we wanted to go to a Farm Supply store then out to eat.  It was pouring down rain and I asked my husband Mark if he would just pulled up to the door and let me out.  At the last moment, he found a parking spot right up front so I told him to forget about it, I’ll walk.  Boy, am I glad I did!  I stepped out of the car and felt something pouring down my leg – it wasn’t rain.  I looked down and seen a stream of poop flowing down my leggings!  I scream toward Mark and jump back in the car.  He had no idea what was going on and he jumped in the car after me.  I told him and he seen it.  All of the sudden, he rolled down his window and started gagging!  I was laughing my butt off!  It was still pouring down rain and he had his head hanging out the window, driving and gagging!  It seemed like a long ride back to hotel!  I told Mark that I had to laugh because if I didn’t, I would be crying.

We get back to the hotel and I have a dilemma now.  In order to get to the room, we have to go inside, past the lobby and up the stairs (no elevator).  I haven’t been so nervous in a long time!  Mark goes in and shields me as much as he could.  I didn’t make eye contact with anyone and up the stairs I go.  My right side legging is soaked with poop…it is now dripping inside my shoe.  We get into the room, and I immediately run toward the bathroom and stand in the tub to take my clothing off.

I rinse out my clothes, shoes and clean up the bathroom and it only took me a hour.  I inspected the bag and it was defective.  The bottom of the bag was not put together at all so things just fell out.  The next bag I put on, I ran water in it to check for any leaks.  I don’t know what I would have done if that one was defective because that was my last bag!  I didn’t even bring any extra change of clothes!  I guess that’s what I get for being overconfident.  I hadn’t had a leak in years and now I’m down to my last bag that I brought.  A lessen learned.  Mark told me that he seen a pay washer/dryer downstairs in the vending room.  I took the clothes downstairs and washed them.  I was so happy because I had no idea how I was going to get those clothes home.

We decide to head out again as planned.  When we get to the Farm Supply store, I go to the shoes and look at the clearance.  I found a pair of UnderArmor shoes, in my size, for $13!  They were mine!  I felt yucky in the shoes I had to clean out – I didn’t even bring an extra pair of shoes.  We go out to eat lunch and go back to the hotel to take a nap and wait out the time until we need to leave for my MRI.  Around 3:30pm, Mayo calls and told me they had some earlier openings if I wanted one.  I told them I could be there around 4:30 and hurried up to get ready.  Now, I’m in a dilemma again because it hadn’t been 4 hours since I ate, like my instructions said. I go anyway.  They must have been in a hurry to leave on time because they rushed me in, I got dressed and they stuffed me in the MRI tube in record time.  While I was laying there, all I could think about is the big, heavy guard thing they placed on my stomach before stuffing me in the tube – I hope my bag doesn’t spring a leak, I don’t have another one.  All was well and after 45 minutes, the test was over. Now I wait for my results from both tests to come back..

I wil stop there.  Tomorrow we leave to go back home.  I had been so worn out from all that happened that day, I just wanted to go home and soak in a hot bath.  I also got my results back from the tests, on my way home and I have an appointment with my Mayo doctor on May 9th, so I will keep you updated on what she has to say.  All in all, I learned a lesson on this trip.  Never be so over confident that it clouds your judgement.  I haven’t had a leak in years, so I didn’t think it would happen then.  I let my guard down – you should always be thinking “what if” and have a solution if it should happen.  I didn’t pack and extra set of clothes – I thought if I’m not worried about leaks, why should I bring an extra set of clothes/shoes?  We were just going to be up there for 3 days – what could happen? To tell you the truth, that’s not me.  I’m always the one who brings 5 outfits for 3 days and at least 3 extra bags, just in case. I’m not sure what I was thinking then..Remember to take this disease one day at a time, and always practice what you have learned through your journey.

Chow for now,

Kelly

 

 

 

Remission?

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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 Follow-Up Appointment

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Hello everyone!

How are ya’ll?  I hope this post is finding everyone in a good place today.  Me, I’m doing well.  In this post I’m going to tell you what happened after the doctors told me I couldn’t eat any food by mouth and what I did about it, what my surgeon was going to do for me, along with a lot of things in between.  Here we go!

While I was in the hospital for the week, they were tweaking my TPN bags to up the nutrients and vitamins so that I could totally rely on the bags for food and not any real food.  I begged the doctors and surgeon to at least let me eat a small snack here and there.  They finally agreed.  Later on, they would let me eat 1 small meal a day, then 2 small meals a day til I’m back to fully eating all meals.  The reason they didn’t want me to eat in the first place was because the food was going through my fistula in my colon and into my bladder then my bladder had a hole in it so it ended up everything that went through the fistula would be going out through my bladder and into my abdominal cavity, therefore causing an abscess.  I have to really watch my eating now and not get too full or else the food will go through the fistula (and it hurts).  I have a drain in my bladder, so it catches some of it before going into the abdominal cavity but I try not to get stuffed.

When I was discharged, the surgeon told me that he was going to refer me to the Mayo Clinic.  Supposedly he knew some people up there that he could refer me to.  That gave me some hope at least.  I came home with 7 TPN bags (one for each night).  I was home for 2 days when I wasn’t feeling very well.  I could not catch my breath and my breathing was erratic.  At the same time all this was happening, my husband Mark had just accepted a promotion.  He was honestly thinking about not taking it because it meant he would have to travel some and he wasn’t sure about it because of my health.  I assured him that when he had to travel, I would have a few people lined up in case something was to happen.

When he was scheduled to travel to Mesa Arizona for a week is the day I had a follow-up doctor’s appointment.  I couldn’t drive because I wasn’t feeling well and I was short of breath so my daughter, Isabella drove me.  When we got into a room at the doctor’s office, the doctor took one look at me and told me to go straight to the ER and don’t pass go!  Bella took me to the ER and she had to wait in her car because the hospital still had Covid rules – patients only in the ER except for minors of course.  When I checked in, I told the nurses my symptoms and they told me to have a seat.  I sent Bella home after an hour and I sat there for 3 hours in the ER and couldn’t hardly breath.  I’m not lying, I honestly thought I was going to pass out!  Finally, they called me in for an EKG and blood work.  My heart rate on the EKG was everywhere on the charts and my potassium was a 6.6 (normal rate is 3.5-5.0).  A 6.6 can cause a heart attack and/or sudden death.  They immediately brought me back to a room and gave me a huge syringe full of dextrose to bring my potassium down.  During all this, Mark’s plane was about to take off and I was constantly giving him updates.  My mother was supposed to come up for the week and spend it with Bella and me.  I had to call her and let her know the situation, but she still came up.  I spent 4 days in the ICU after just spending a week in the hospital a week earlier.  The diagnoses was too much potassium was added to the TPN bags causing me to receive too much potassium.  During my stay, they tweaked my TPN again and sent me on my way home.  I felt like a guinea pig waiting for something else to be too high or low sending me back to the hospital.  Sure enough, when Mark leaves, all hell breaks loose but we muffled through it!

I do have to tell you something that happened in the hospital.  When I got wheeled up to the ICU, I had a guy nurse.  He told me his name and I about flipped out!  He was one of the nurses that took care of me 2 years ago when I had surgery!  He remembered me too and we talked about him and my husband talking about hunting and everything that had happened since.  At least I had a friend to talk to in the hospital.

That sure was a hectic time in our lives but we seemed to make it through okay.  Bella ended up  having to take care of the house and dog for a week while I was laid up in the hospital.  I felt so guilty about that.  Bella, mom and I was supposed to spend the week together and do girl’s things, I felt responsible for that not happening also.  I told Mark not to worry about me and go ahead and take that promotion and I’m sure he was worrying about me all week while he was in Arizona, I felt bad about that too.  Sometimes with this disease, I feel as if I let a lot of people down and I get a little depressed about it.  I know they are used to it by now, but they shouldn’t have to be.  I thank God that I have such a great family and support system, I hate to think what I would do without them.  I just have to remember to take this disease day by day.  If you have any questions or comments, please ask!

Chow for now,

Kelly

Complications from Last Surgery

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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!

 

Life in the Hospital

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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!

God’s Not Finished With Me Yet!!!

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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