Category Archives: Colostomy

Emergency Surgery??

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

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

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

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

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

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

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

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

Chow for now,

Kelly

 

 

Everything Happens For a Reason..

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

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

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

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

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

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

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

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

Chow for now!

Kelly

 

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

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

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

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

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

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

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

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

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

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

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

Chow for now,

Kelly

 

 

 

Update 2024

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Hello everyone!

I hope this post finds you in good health and spirits!  The only excuse I have that I haven’t written in a while is because, yes, I am out of remission and doing okay, just not terrific.  I would like to let you in on an overview of what has been happening to me during this time.

Going back to the last update that I posted, I had felt an all too familiar sign that my fistula may be coming back.  It did.  The Entyvio had stopped working for me around August 2023.  My doctor had taken me off the medicine and replaced it with 15mg Rinvoq, still along with my 90mg Stelara I was already taken also.  During that time, my Crohn’s Disease spiriled out of control because I had to wait at least a good month for the insurance to approve it.  Imagine that.  When I finally got the approval, the Rinvoq took a few months for me to notice a slight change for the better.  When my Crohn’s wasn’t doing as well, I was in a lot of pain on my right side of my abdomen and I was extremely gassy.  With this 15mg Rinvoq, the pain was relieved, however, I had still remained really gassy.  This has gone on every since then.

In February, my GI doctor told me during an office visit that she was leaving to go to another hospital affiliation.  I was devestated.  She had been my GI doctor for years and now I would have to find another and start over, so I thought.  So, back in 2017ish, I left my GI doctor from one hospital to change to another because of personal reasons.  I had asked my primary doctor to refer me to another great one and she did.  I really liked this doctor, however, it came to note that she was out of my network with my insurance so I had to be referred to another GI doctor, the one that left me recently.  Now, many years later, this doctor that was out of my network decided to leave her practice where she was at and join forces with the doctor I most recently had.  Long story short, when my doctor told me she was leaving me recently, she suggested I take on the doctor I had many years ago that is now in her practice.  I did.

I had my first appointment with her a few months back and she remembered me!  She suggested that I take the 45mg Rinvoq so that we can get this fistula to close back up.  I loved the idea because this fistula has really been giving me a lot of problems.  When I left her office, I felt confident that this thing would heal after receiving the 45mg. Rinvoq because I knew the 15mg Rinvoq helped me some.  It took the insurance a while again to approve the 45mg medicine, so the doctor told me I could come every two weeks to her office and pick up some office samples of the 45mg Rinvoq they had.

During this time, I am noticing that the Rinvoq samples are not digesting properly because I can see it coming through my colostomy bag as I am draining it.  This concerns me because I also don’t feel any better with the 45mg Rinvoq than I did with the 15mg Rinvoq and I fact, I believe I am getting worse!  My symptoms/notices are – 1) the Rinvoq isn’t working the way it should because this is a time-released drug and by the time it gets where it should be on a normal person, it leaves my short gut before absorbing. 2)  I have been having severe pain on the right side of my  abdomen.  3) multiple UTI’s because I am seeing mucus/feces while urinating in the toilet and a lot of gas that also passes through my fistula now and 4) I am also feeling a lot of pressure underneath that I have to relieve with warm sitz baths.  With these symptoms, I called my doctor to let her know what was going on.  She suggested I keep on the Rinvoq for now because studies have shown that even though the medicine may not absorb completely, the patient still gets some benefits from taking the drug.  I’m not sure if I agree with this totally or not.  Also, she suggested doing a steroid taper of Prednisone to combat the flare that I am having.  I agreed and believed she was on her way to ordering the taper.  Believe it or not, it took me several phone calls, several emails and a week just to get her or anyone in her office to respond to me.  I wasn’t a happy camper because I was in severe pain.

I’m going to leave off here because I have a whole other story to tell ya’ll about my annual trip to The Mayo Clinic.  Oh boy!!  I have a Zoom appointment on May 9th with my doctor from Mayo so I want to give ya’ll the full report on that when I have all the information.  I do want to let ya’ll know that we have had some serious sicknesses and deaths in our family, including our dog Jasey, since I last posted and don’t by no means want anyone to think I am wanting to take presidence over what has happened.  I love ya’ll deeply, you know who you are.

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

 

 

 

 

 

Life in the Hospital

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

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

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

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

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

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

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

 

Chow for now!

The Aftermath

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

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

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

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

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

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

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

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

Chow for now!

 

Well..I’m back again but different

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

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

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

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

 

Chow for now!