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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

 

Life Interrupted….Again!

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Me in the hospital for Legionnaires Disease

Hello everyone!  I hope this post sees you in good health.  I am going to “skip” over a few posts and tell you about my recent health scare.  I know a few of you have been asking about why I was in the hospital last week and I believe my blog would be a good platform to tell everyone.

Life was going good, healthwise, for a change.  I had even managed to gain a few pounds.  The week before the 18th of May, I had developed a low-grade fever in which I contributed to my Crohn’s Disease.  I thought NO BIGGIE, I’ll get over it soon.  This was the only hiccup I had and didn’t think much of it.  Saturday, the 18th at 5:00am, I hooked myself up to a bag of saline because I felt a little dehydrated.  It runs for 4 hours so at 9:00am I could unhook myself and have the rest of the day IV free.  Throughout the day, I had a pain in between my shoulder blades on my back and the fever was rising higher throughout the day.  I told both my husband and my daughter what was going on and in the back of my mind I thought this pain felt like a PE blood clot that I’ve had in the past.

Around 3am Sunday morning, I turned on the bedroom light and told Mark that we needed to go to the ER.  There is a hospital about 5 miles down the road and I chose that one instead of going all the way to St. Louis that morning.  I told the ER what my symptoms were and we had a seat.  Before you know it, I was being processed and placed in an ER bed.  I was given an EKG,  X-ray, CT scan and blood tests.  While I was waiting for the tests to come back, I started having a lot of pain in my upper left side of my chest. I honestly thought I was having a heart attack!

When the results came back, the doctor told my husband right where I said that I hurt (between shoulder blades and left side of chest) is where pneumonia was found.  I had pneumonia in both my lungs. They also told me the left side of my chest showed a spot where my lung looked like “mush.” Now, I don’t know about you, but if someone told me a spot on my lung looked like mush, I’m going to slightly panic, and I did!  They also sent off a sample of my blood/spit to another lab.  So, off I go to the ICU for 3 days.

While I was in the ICU the doctors literally pumped me full of every kind of antibiotic known to man!  Even the antibiotics that were on my “allergic” list were pumped in me.  This is the time where I thanked God that I had a PICC line.  I got all my antibiotics through this line and didn’t have to worry about any IV’s.  The doctors came in my room Tuesday morning and told me the sample they sent off came back Legionnaires Disease.  This disease isn’t contracted person to person but it is contracted through infected water droplets that I somehow/somewhere inhaled that had this bacteria in it.  Anyplace where there is water sitting or had sit for a long time such as drainage pipes, garden hoses, bird baths, shower heads, sprayers, air conditioning in large places, veggie mists at the grocery store, etc…I have no idea where I had gotten it from because a lot of these places I go or do without even thinking about it.  With my immune system being comprised due to Crohn’s Disease and the medication I take, I can literally look at something and become sick.

With good pain meds and a plethora of antibiotics, I was out of the ICU Tuesday afternoon.  The doctors discontinued the fluids because I looked like the Stay Puff Marshmellow man and I had to deal with the all over puffiness.  One good thing, I got to eat a normal diet while I was in the hospital this time because it had nothing to do with my Crohn’s (somewhat) for a change!  The doctors kept me full of antibiotics throughout Wednesday and Wednesday night, one doctor told me that I could possibly leave tomorrow (Thursday)!  I needed to hear something positive for a change.  I was getting cabin fever and a little depression crept on me during this time.  During the whole stay at the hospital, I had been walking the halls so that my pneumonia wouldn’t get worse and my legs get not too weak.

Thursday came around and one doctor came in early and told me I could leave that day.  I still had 2 more doctors to go because they all have to agree.  Late morining rolls around and both doctors that were left told me they were going to release me around noon.  The nurses came in to go over my new medication list. It had changed drastically! Thank Heavens my daughter was off work that day so that she could pick me up.  By noon I was packed and ready to go!

I get back home and was so happy to be there!  That day, everything went off without a hitch and I felt great!  I believe I was on a high from actually being home.  That night, I slept on the recliner, straight up because I was afraid that I would lay down and be in the same boat again.  That next morning, Mark was gone and Isabella had to go to work.  I was left there by myself, coming off some of the medication that was given to me previously.  I honestly felt sooo jittery, dizzy and nervous that I was afraid to get up and around too much.  Isabella came home to check on me during her lunch break and I was so mentally challenged by then, she was afraid to leave me, but I reassured her I would be okay.  I hurt so bad, words cannot describe, yet the doctor wouldn’t give me any pain meds after I came home. When I’m in pain, I don’t want to talk to anyone because I am trying to concentrate on something other than being in pain. I noticed that every bodily fluid that came out of my body was an olive green color.  It all looked the same, no matter what the fluid was.  I also couldn’t sleep because of all the jitterness that going on.  If I had the opportunity to slow my heart rate down, I would sleep maybe 20-30 minutes at a time.  That was throughout the day and night. Saturday was the same, Mark was gone, Isabella had to work, I was left alone again.  I honestly thought I may have to go back to the hospital, but I fought it hard.  Mark called to tell me he was going to bring home some porksteaks to cook out, so that gave me something to look forward to. I felt the same jittery, dizzy and nervous person that day also.

I forgot to mention that sometime during the day on Friday, I get a call from the St. Clair County Health Department because the hospital had to report my disease.  The lady literally asked me 50 questions about where I had been and what have I been doing the past two weeks.  I answered as I remembered. She told me that they have to document the places in case someone else in that area or same place came down with the same disease.

Things started changing for the better Sunday.  The nervousness had subsided a little and I was better mentally.  I sat on my patio for as long as I could until the storms came along.  By Monday, I was feeling even better.  I actually went to Home Depot and grocery shopping with Mark that day.  I’m not telling you it was an easy thing to do, but it felt like I was getting back to my normal.  During the time I was in the hospital, the flowers and plants that I had ordered had came in (imagine that!).  Both Mark and Isabella helped me get them planted (with a mask on of course) that day.  We had a great day at home.  My happy place is the patio.  I could sit there on a beautiful day all day if I could.  I love to check on all my plants/flowers and sit in my favorite rocking lawn chair with a little music in the background.

I believe each day now, I am getting better and better.  I sit on the patio in the morning and read my book, I am watering my flowers and doing a little housework around the house with some rest in between activities.  I am getting back to my norm, but I am very watchful of what I do outside, especially around water or soil. I do not know where I picked this up, but I do know I am going to be more cautious of my surroundings to make sure I do not get this horrible, painful disease again, even if I have to wear a mask. Remember to take Crohn’s Disease one day at a time, this has helped me in recovering from the Legionnaires Disease also.  I have to stop what I am doing, take in a deep breath, get refocused and move on.  It’s hard sometimes, I know. If you have any questions or comments, please feel free to ask!

On another note:  I have a cousin that has been in and out of the hospital for some time now.  We did actually connect to each other while we were both in the hospital. As he put it, “we certainly aren’t the poster children for good health from the bootheel (of Missouri)” Although I was in the hospital for a week, he has it much worse.  He is receiving a bone marrow transplant today, please keep him in your thoughts and prayers.

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, My, My, Myyy Seroma!

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

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

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

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

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

Chow for now,

Kelly

 

My “Big” Surgery at Mayo!

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

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

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

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

The surgeon told us that the surgery could go either of 2 ways:  1) she could get in there, find what she’s looking for easily, fix it and get out, or 2)  get in there, can’t find the area easily and have to cut her way through and a lot more intestine would be cut out.  That’s not good because I already have a short gut and really can’t afford to get much more cut out.  At least she told me the truth even though it wasn’t pleasant.  The next appointment was with the anesthesiologist.  She just asked a whole lot of questions about everything.  I was given my meds for a good clean out and left Mayo just to see it again early the next morning.

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

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

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

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

Chow for now,

Kelly

 

 

 

 

 

The Mayo Clinic

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

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

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

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

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

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

Chow for now!

Kelly

Home Sweet Home

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(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!

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

Fighting Depression

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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