Category Archives: Disability

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

 

 

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

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

 

 

 

 

 

My Follow-Up Appointment

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Hello everyone!

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

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

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

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

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

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

Chow for now,

Kelly

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!

Ringing In The New year

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Hello everyone, I hope the holidays went well for you!  Mine was great but my health wasn’t too great..I would like to blame it on all the great food I ate during that time but something else had reared it’s ugly head.

In my last post I had told you the blockage pains had come back and I am now taking the Entecort (steroids).  About one month later, I still wasn’t feeling great but couldn’t figure out just what it was.  I was feeling very fatigued on top of all this.  One day while my Home Health nurse was at the house, I was telling her my symptoms and how I was feeling.  When she took my vitals, she found that my heart rate was 50 bpm.  It is normally 75-80 bpm and she acted alarmed that it was this low.  She told me that this was probably the reason why I was feeling fatigued.  She then called my primary doctor and told her what was going on.

The primary doctor ordered some blood work and told me she would like for me to wear a heart monitor for two days to record what is going on with my heart.  The blood work showed that I was moderately anemic and that I definitely had something going on with my heart.  My heart rate during the two days ranged from 41-144 bpm. I’m still not sure what they are going to do with me about that – I haven’t heard from them regarding a game plan yet. For the anemia, they told me to put more red meat in my diet.  That’s kind of ironic due to the fact that I gave up eating red meat this past summer because it is the hardest meat to digest with my Crohn’s.  I didn’t think about losing iron because of it.  I’m still not eating red meat but I found at the pharmacy this “shot” of iron called Pur Absorb.  It is literally a shot of water infused with iron.  It taste like drinking water from a rusty pipe but if it helps and keeps me out of the hospital, I’m willing to do it!

Just this past week, the job I had before I was laid off in 2012 called me out of the blue.  They offered me another position, full-time and told me they would consider my medical condition.  For 3 days I was really considering going back because it would have been for a lot more money and we could get some bills paid off and go on some great vacations!  I considered the pros and cons and in the end, I had to decline the offer.  I had to consider my health of course, the surgery hanging over my head, my heart thing and the fact that if I did go back to work, I would lose my disability.  The way my health is now, I could be fine for a day, a month or even a year and then one day before you know it, I’m in the hospital for some reason, having surgery or just not able to get up off the couch.  I would then be out of a job and have lost my disability.  It was so nerve wracking for those 3 days though..my brain was telling me one thing as my body was telling me another.  I really would love to get back to work one day but this just isn’t the time.  I still have some kinks to work out!

On the other hand, I am a very spiritual person and firmly believe that everything happens for a reason..this is another reason why I struggled with this decision.  I pray to God all the time to open my eyes and ears and let me see/hear what he wants me to do for my future.  Then all the sudden, out of the blue, this job offer lands at my feet.  Was this some kind of sign or something or was I thinking too much on this?  Also, the same day I declined the offer, I got a phone call from Mercy Hospital in St. Louis inviting me to one of their job fairs for lab personnel!  I did tell God that he would probably have to hit me on top of my head for me to get it as I don’t get subtle hints very well – they kind of fly right over me!

I do feel a little better now but still fatigued.  My heart rate is back in the 70-80s bpm.  I did however just get some more blood work done and I am waiting on those results.  It did feel good that my old job is still thinking of me.  Maybe one day I will able to go back to work and live like a normal person.  I have to take this disease one day at a time and work toward the goal of getting better!

 

Chow for now!

Kelly

Working Full Time With Crohn’s Disease – and Disability

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Good day everyone!  I hope you are doing well.  So far so good on this end.  In this post, I will tell you my experience trying to work a full time job with Crohn’s Disease.  Not an easy task!  I worked, worked, worked until I could work no more!

Once I graduated from college with an Associates degree in Medical Laboratory Technology, I got my first job 3 hours away from home in St. Louis, MO.  There, I worked as lab technician in a hospital.  Loved that job.  I then went to a pharmaceutical job working in quality assurance. It was here, at age 25 that I was diagnosed with Crohn’s Disease.  At that time, I had never heard of Crohn’s Disease and I thought okay, I will just have to take medicine the rest of my life to control this.  I thought you could control it like high blood pressure – just take a pill!  Boy, was I ever wrong! I eventually ended up at an aerospace company working as a chemistry technician.  While I was working there, I had my gallbladder removed, a fistula surgery and my first and second bowel resections.  I also had to apply for their Family Leave program.  This program would allow me to go to my doctor visits and have bad Crohn’s days without it counting against me (supposedly).  All was good until I reached the age of 40.  Then all hell broke loose!  My body was falling apart and soon I was greatly relying on the Family Leave.  Eventually, after 10 years of working at this company, I was laid off.  That’s when the stress really took over and I was looking at another fistula surgery, multiple abscesses and another resection in which I ended up with a permanent colostomy (another story).

It was then that I decided that I can no longer hold down a job because every time I turned around, I was in the hospital for something else related to Crohn’s or I would have many bad days linked together where I would feel like I couldn’t move no further than the couch.  I talked to my husband and we decided to try for disability for me.  This was a really hard decision for me because ever since I graduated from college at the age of 22. I have been providing for myself and moving forward with my life.  To this day, it is still very hard to imagine not being able to do so and having to rely on others to provide for me.  Some days it gives me a little bit of anxiety when I think about the future.  I’m still wanting to move forward with my life but now I have to think of other ways to do so besides work.  Who knows, maybe one day I will get better and be able to work again?

Anyhoo, I started the process of applying for disability.  I was denied the first time, I was denied after I appealed, and finally I had to get a court date for the hearing.  During this process, our family went through some major financial hardship.  Since we were living on one income, I had to come up with some creative ways on how we could cut corners on our spending.  My aunt was telling me that she sometimes makes her own laundry detergent.  I looked it up and it makes an entire 5 gallon bucket.  That saved us bunches right there!  Also, we started staying in more to eat instead of going out, which was probably better for our health anyways.  I also started cutting coupons and becoming one of those people who wouldn’t buy anything or eat anywhere that we didn’t have a coupon for. I hate to say this, but I sometimes miss those days where everyone was working together for the same goal – survival!

family sign

Our extended family was phenomenal to us during this time.  They would help us as much as they could without us even asking for anything.  If it wasn’t for them, I believe we would never have made it through.  One of them paid my vehicle off for us, one of them told us we needed to take our kids on vacation so he paid us to schedule a family vacation in which was the furthest from our minds at that time!  Another would give us random money to pay some of our bills even though we didn’t ask for any.  It goes to prove that we can always lean on our family when the going gets tough and of course we would do the same thing back when we get on our feet again tenfold. We ourselves had just been married for 6 months when I was laid off then my health went sour and has been that way ever since. Sometimes I wonder if my husband has ever thought he married a lemon.  He needs his money back on this one because she is a broken one!

To sum it up, I did end up receiving disability after a 2 year battle, and somewhere in the midst of all the chaos, I managed to receive a Bachelor’s degree in Criminal Justice through an online college.  Someday, when I get better, I want to be able to work in a crime laboratory.  Why not?  I’ve worked in every other type of lab!  I am adding a link to the right of my side of my page to the Social Security Administration so that you can receive more information about disability.  I’m not saying it is for everyone, but there is help out there for the people who really need it.  Remember to stay positive, keep smiling and we will all get through this one day at a time!

Chow for now!

 

 

 

 

First Post Ever – What is Crohn’s Disease?

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Hi everyone, Kelly here!  I want to invite you to take a look at my “About Me” page to get a little bit of information of where I am coming from.  In case your not sure exactly what Crohn’s Disease is, in a nutshell, it is a chronic disease of the intestines that contains ulcers and open sores.  It is the most intense pain one could ever experience.  Crohn’s Disease can take hold anywhere from the inside of your mouth to the bottom of your anus, basically your entire system can be affected.

 

I was 18 in college for a degree in Medical Laboratory Technology.  In order to get blood to perform tests, we had to draw blood on our fellow classmates.  I can remember a particular test we had to perform for Rheumatoid Arthritis (RA). Mine was the only test that came out positive!  At 18!  Back then, I would get knee pain one week out of the year and I called it my “author” but didn’t realize until that day that it was truly arthritis!  Little did I know then that arthritis can be a symptom of Crohn’s Disease that would rear it’s ugly head years later.

Anyhoo, I wanted to give you a little overview on Crohn’s Disease so you will know a little bit of what I will be chatting about and am going through.  I have included a link to the Crohn’s and Colitis Foundation of America because it’s such a good reference to have for this type of chronic illness.  I have so much information and experiences, new and old, that you may be able to relate to or may want to know more of.  Together I believe we can get through this horrible disease one day at a time!

Chow for now!

Kelly