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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

 

 

 

I’m Bacckkk!

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

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

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

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

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

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

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

Chow for now!

 

New Year’s update

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

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

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

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

Chow for now!

Kelly