Category Archives: TPN

My Follow-Up Appointment

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

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

(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!

I’m Bacckkk!

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!

 

What?? Another Catheter Replacement??

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

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

New Developments

Hello everyone!  I hope ya’ll are doing well these days.  In this post, I would like to update you on some issues that have been going on with me.  One of these days, I hope I can give you some out-of-this-world positive news!

The other day, my doctor’s nurse called me and told me my potassium and magnesium was pretty low. They told me from the looks of my blood work it looks as if I am dehydrated.  I have had lots of diarrhea lately and I am losing a lot of fluids. They talked about putting me in the hospital to pump me full of each.  I said whatever I could say in order for them NOT to put me in the hospital (I hate that place)!  Instead, I suggested to them that I could go on the TPN every night instead of the every other night I had been doing.  Just to let you know, I started out taking it every night and was working on tapering off the TPN until this incident happened.  I took one step forward and two steps back!  I also ask them to take all of the calories out of the TPN bag because I was doing 600 calories a night and I don’t need anymore calories, I’m doing fine on my own!  I am already 12 pounds over my ideal weight from this thing.  Sometimes I feel as if they just don’t understand or care if I get huge or not, just keep gaining that weight, it’s good for you!

Okay, I’m not sure how to tell you this but here it goes..a couple of weeks ago I sat down on the toilet to pee.  All the sudden, I felt something fall out of my butt!  Now those of you who follow me know that nothing should be coming out of my butt due to my ostomy.  Anyhoo, I panicked and looked down.  There is something at the bottom of the toilet that looks like a worm!  Now I really panic and run into the living room to get my camera to take a picture of it!  I finally got brave and fished it out – it was a rubber band or seton, the medical term for it.  Once I picked it up, I knew right away what it was and I calmed down a little.  After they hooked me up with an ostomy during surgery 3 years ago, the doctors placed this seton in my anus to hold things together.  I don’t feel any different than what I did before this thing fell out, no pain or anything.  I kept it and took it to my doctor to see if I need it replaced.  She told me as long as everything feels okay and there is no pain or anything, I shouldn’t need it replaced.  That’s one positive thing that came out of this whole experience!

Now for my jaw issue.  I got an MRI of my jaw back in February and took it to my oral surgeon to get it read and see what he says about it.  Not good news.  He told me that he hasn’t seen anyone this bad in 35 years!  Leave it to me for this too!  Why not go big??  He told me that basically my ball from the ball and joint on each side of my head is gone.  There is just a disk there, it has been worn down to the nub.  Also the cartilage that should be between the ball and joint is no longer there, it’s only scar tissue.  So what he suggested is that I wear a bottom retainer like thing and that should take the pressure off the muscle and hopefully bring my jaw forward a bit.  Both sides of my jaw are dislocated.  If that doesn’t work, I will need surgery to replace both ball and joints on each side.  I don’t want to think about that option right now – only positive thoughts!

It seems to me that the older I get the more interesting my life becomes.  Never a dull moment here!  I just wish I could take all these bad things and turn them in to something good.  I’m still trying to figure out what my purpose here on earth is.  I try to live a normal life or as normal as I can but it just seems that the harder I try, the more difficult my life becomes.  This disease has really kicked me in the butt but I try to take it one day at a time.  Oh yeah, my doctor told me she was glad that I had another doctor helping her out with me because I was a handful.  I just agreed with her, I know I am.

Chow for now!

My Catheter Replacement (it would only happen to me)!

Hello everyone, I hope you are doing well today!  I just have to write you to tell you my experience with the placement of my new Hohn catheter.  It is a doozy (of course I would have it no other way)!

So, remember the last post when I said I was a bit nervous because I was getting my old catheter replaced with a new one without putting me out?  Well, obviously I had a right to be, my sixth sense kicked in…I get to the hospital and they call my name.  I go back and put a gown on and lay on this bed.  They tell me what they are going to do, but I’m still a bit nervous.  This is one of the weird parts – they have me get up and walk to the surgery room and hop up on the table.  One of the doctors put a dressing over my head just enough to see the catheter opening. He then precedes to tell me he is going to deaden it a bit and I told him “How about a lot?”

After the area is deadened (it hurt a lot during this time), he preceded to take the old catheter out and place wires in to mark its place.  It was this time another very unsettling thing happened – the doctor stopped the procedure and looked at the nurse and asked her which petal he should use!  She paused for a moment and told him to try the right one.  Then she stopped him and said “Yeah, I believe it is the right petal.”  Okay, by this time I am freaking out because I am wide awake and can hear all this going on!  My little heart is going pitter patter very fast!  After all this was over, the other nurses congratulated the one nurse and she told them she hadn’t done this in a long time!  So, the one doctor leaves and another comes in to stitch me up.  By this time, the numbing medication was wearing off and I yell “Ouch!”  The doctor then numbs me up with more shots and he proceeds to finish up.  The nurses help me off the surgery table and walk me back to the recovery room bed (weird).  At the same time, as I got off the surgery table, I looked down and saw splatters of blood all over the floor – my blood! It’s over now, so I get dressed and leave – drove myself home.

So I get home and look at what was done.  By this time the numbness is wearing off and they didn’t give me any pain meds for this.  I forgot to ask because it was numb when I left.  I could definitely tell a male placed this catheter in because it went right under my bra strap.  I cannot have the strap over the catheter or it will eventually rub itself out.  So my next step was to call my Home Health nurse because the dressing was falling off me and I was in a lot of pain.  She looked at my catheter placement and by this time I was black and blue.  It had looked like someone beat me up!  She changed the dressing and couldn’t give me anything for the pain unfortunately.  For the next week, I was taking 3 Tylenol every 4 hours and was in a lot of pain.  The HH nurse called the hospital and told them about the pain and severe bruising.  They said the bruising was from all the shots they gave me to numb me.  Nothing they can do, just wait it out!

If I ever have to have this thing replaced again, I will definitely tell them they will have to knock me out first!  There is no way on earth I will go through all this pain and suffering just to have it replaced!  The first catheter didn’t cause half this pain nor did it ever bruise but of course they gave me pain meds for that one!  I also had to go to the mall and buy a couple of strapless bras so the strap wouldn’t rub the catheter out.  It will get some getting used to wearing strapless bras constantly but I guess that’s the price I have to pay in order to keep myself healthier!  I am taking one day at a time and it is getting better now but I still have a long way to go to get back to where I was with the old catheter.  I feel as if I took one step forward and two steps back!

Chow for now!

 

 

Never a Dull Moment!

Hello everyone!  I hope everything is going well your way.  In this post, I would like to give you an update from older posts as well as some new things that have popped up.

  This past week I found out from my last blood work that my iron count is still really low (28).  The normal range is 40-140. I’m not sure what is going to be done with this yet. During this time, I decided that I would try and decrease my Entecort steroids down to one capsule a day because I was feeling better and I don’t like to be on these any longer than I have to.  Steroids have many side effects and the longer you are on them, the more damage they can do.  Boy, was that a mistake!  From the day I dropped down to one capsule a day, I started feeling really fatigued and sluggish.  A couple of days had passed then all of the sudden it hit one day really early in the morning.  Let’s put it this way, I had to muster enough energy and strength to take Bella to school and afterwards I went straight to the couch and didn’t move for the rest of the day (until I had to pick her up).  I somehow figured out what went wrong and quickly took the maximum amount of steroids I could take (3 capsules a day).  The next day I was feeling a little better and by the day after that, I was back to my old self.  So now I realize that one capsule was not enough and to not do that again for some time now.  I was doing good with 2 capsules so maybe after I get better with 3 again I will try to get back down to 2.  This is a prime example of taking this disease one day at a time – you never know from day to day what this disease will put you through.

A couple of days later, I was to take my daughter to a basketball homecoming 3 hours away near my hometown.  Everything was going well until we were getting ready to leave.  We were on the gym floor talking to people and I just turned around and seen nothing but a basketball coming right for me.  I didn’t even have time to put my hands up to protect myself and the basketball was aimed right at my catheter of all places. It got me good!  I was scared to look at the catheter because in my mind, it had fallen out.  I asked my aunt and uncle to look for me and everything was still intact.  It hurt, but I think it scared me more than anything.  I went to my aunt and uncle’s house and texted my home health nurse to tell her about my incident.  She told me when I got home to flush it with my saline wash and heparin to see if I had damaged it in any way.  I did and everything went through okay.

May 2016

The next day, I hooked myself up to my TPN nutrients and everything went through fine, however, the next night when I hooked myself up to a dehydration saline bag, nothing went through.  The infusion rate is suppose to be for 4 hours and I finally took it off at 6 hours and there was still a full bag.  The next day my home health nurse came to draw blood from my catheter and she couldn’t get any blood out of it.  She tried everything she could but nothing would come out for her.  She ended up drawing blood from my arm instead.  When she left, she told me she was going to call the doctor and suggest I get a new one put in because she thought I may have damaged it when the basketball hit me.  Also, my heart rate was back down to 63 bpm.  I guess I should call my doctor and see what the plan is.

In the mist of all this, my TMJ has come back this week and I finally made an appointment with an oral surgeon.  After examining me, he told me he wanted me to get an MRI done to see where the cartilage is in my joints, if any.  He told me that he believed I had a dislocated jaw joint and believed I had this since I had orthodontics in my teen years!  I have been walking around with this all that time and had no idea.  I did know something was not right, and it’s been like this for years but didn’t know it was dislocated!  Never a dull moment here!

Monday morning I will go to Barnes in St. Louis and get a new Hohn catheter put in.  They told me that they are only going to numb me up.  I am kinda nervous about this because when I first got this one, they gave me a twilight where I was awake but didn’t care and now they are just going to numb this one?!  Please say a little prayer for me during this time.  I am so glad that I did not accept that job offer from a month ago.  I’m falling apart again!  Remember to take this disease one day at a time because if you don’t, you will go crazy and it will get the best of you!  Do not give this disease the satisfaction!

 

Chow for now!

My experience with TPN – Part II

May 2016

Hello everyone – welcome to part II of my TPN post!  In this post, I will tell you my experience with the surgery, starting the TPN and my home health experience so far.  Boy, is it a doozie!

So, the reason why I needed the TPN in the first place was because my weight had dropped down to a dangerous number.  Before my ostomy surgery, I was 120 lbs.  After the surgery, I was 110 lbs for 2 years then my weight started dropping more without changing my diet.  I was at 105 lbs for about 6 months before my G.I. doctor told me I needed to get on the TPN.  My heart rate was faster and my blood pressure was very low.  I was so dehydrated, I had to make a trip to the E.R at least twice a month to receive IV hydration fluids. Basically, my small intestine just stopped absorbing much of anything for some reason.  Looking back at all the symptoms, I am surprised I didn’t get the TPN sooner than I did..

When I went to the doctor who heads up the TPN department, she told me:

  1. I would have a catheter placed in my chest
  2. I would have to spend one week in the hospital after in was inserted
  3. I would have to take the TPN bags and supplies to New York City with me because I couldn’t skip a day.  BUMMER!

When I got in the hospital on a Monday, it felt weird because I didn’t feel sick.  Tuesday morning when I got up, I couldn’t eat or drink anything because of the upcoming surgery.  They came in and talked to my husband and me and told me what they were going to do and what kind of catheter they were placing in me.  The Radiology Department actually done the “surgery” and they had an ultrasound machine right at my face so that they could see where to place the catheter.  I was awake but loopy during the whole thing.  When I came to, I had a big bandage on me.  I slept good the rest of the day!

When I got up Wednesday, I had a huge headache all day!  Waay past a migraine!  Even the pain medicine wasn’t doing any good.  I had a very inadequate nurse that made it worse.  I was throwing up and had a cold pack on my head to try to help it.  All I could think of was that I was going to stroke out.  A stroke is one of the side effects that could happen to you due to the position the catheter is in.  I was not a happy camper and when the doctor came in the next day, I made sure she knew how I felt!

On a different note...it never fails, I always, and I mean ALWAYS get a roommate that has her TV blaring until the wee hours of the night.  ALWAYS!  Or they don’t turn it off at all!  I have been known to go over the other side myself, IV pole and everything, and turn the TV off because they are fast asleep.  The last one I had, I turned it off and 30 mins later, she woke up and turned it back on!  This was 2:30 in the morning!  I make sure and get them back during the day when they are trying to nap!  This is why I hate hospitals so much!

Anyway, for the rest of the week, I had a nagging headache and felt nauseated.  I learned later the reason for this.  My body was so malnourished and it was not used to receiving all these nutrients and absorbing them that it had to have some time to get used to them all.  After about two weeks, my headaches were gone and I was no longer nauseous.

When I finally got home, I had a home health nurse to teach me how to prepare my TPN bags and start my IV.  Also she changed my dressing and drew my blood twice a week.  Let me tell you about my home health nurse’s trainee.  This incident happened the first week I was home.  This trainee changed my dressing one day and it kinda hurt a bit.  She was actually scrubbing the catheter with the alcohol wand they have!  It hurt.  Then it got quite, she was trying to work as fast as she could to get out of my house.  When they left, I looked in the mirror and she had popped a stitch!  I had to go back to the hospital and have the doctor stitch my catheter back up.  These stitches are held together internally and they are metal stitches.  It didn’t feel very good.  This was only my first week back home!

I had to wear this TPN bag for 12 hours a day, 7 days a week.  One bag was called a Lipid bag and it had 1900 calories in it.  I took that twice a week.  The other bag was a clear yellow and it had 1400 calories in it.  I took that 5 days a week.  I have also been eating a regular diet on top of the nutrient bag!  I have now gained 30 pounds since last May and they stopped the Lipid bag completely.  Also, I am taking the clear yellow bag every other day and they lowered the calories on that bag to 1000 calories per bag.

Me now!

Me now!

Maybe sometime soon, they will take this out of me.  I really wouldn’t mind keeping something in so that I could hook myself up to hydration bags when I felt a bit dehydrated instead of going to the ER every time.  However it plays out, I am thankful for the TPN that I have received.  The way I was before, I may not be alive now.  Remember to take this disease one day at a time, I am living proof that things do get better over time.

Chow for now!