Category Archives: Colostomy

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!

 

God’s Not Finished With Me Yet!!!

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Hello everyone!  Hope everything is going well your way!  Mine has been very interesting to say the least.  Not something that I would like to relive…ever!

It began in March when I began to feel not – so- great.  I was in the middle of a flare from my Crohn’s Disease.  I was kinda getting nervous because I knew in another month our family was scheduled to go on vacation in Las Vegas and I didn’t want to be in the middle of a flare.  I went ahead and took the maximum amount of steroids that I could take and that took care of my energy, however, I still felt a pain in my right side.  I can live with that, right?? 

During this time, my mother – in – law had been in the hospital for multiple issues.  On one particular day I was feeling better with my flare and decided to visit her in the rehabilitation unit she was in.  While I was there, she received some bad news of a set back and she needed to be transported to big Barnes to get some testing done.  All of the sudden, I felt an all to familiar pain in my back but I kept it to myself because I was trying to be strong for my mother- in-law.  When I got home, I laid down for a while and the pain subsided a little but was still there.  In the morning, I called my doctor and described my pain to her over the phone.  She told me since I have a history of these, my best bet would be to go straight to the ER.  I did and I was right – I had developed another blood clot in my right lung again!  This would make the 3rd PE blood clot in a year!  God definitely has something bigger and better in store for me! I was in the hospital for 3 days.  Need I remind you that my mother – in – law was still in the hospital also, therefore, my husband had his wife and mother in two different hospitals at the same time!  He could get no rest, bless his heart!  I was put on Coumadin again.  Now, Vegas was really getting too close for comfort to have any hiccups!

Vegas was fun, however the first day I was there, either I twisted my right knee or my arthritis was really acting up.  I mean I was in a lot of pain with this knee and could barely walk the rest of the time there!  To subside the pain, I took a lot of Advil that I had brought with me and that still really didn’t work.  I tried not to let that stop me from having a great time but it was always there with me.  The day after we got back from Vegas, I noticed a lot of blood in my bag and was kind of frightened with what I saw.  My home health nurse came that day to check my PT/INR and other blood tests as well as to change my dressing.  She just about freaked when my PT/INR turned out to be 7.3!  The normal range for me is 2 -3.  My blood was extremely thin and she told me to not get cut or fall or else I could bleed to death!  When she changed my dressing, she noticed that my stitches had somehow popped again and my catheter was just hanging there!  I just got this thing replaced back in February and now it has popped again!  That turned out to be the least of my worries..

That night I continued to lose a lot of blood through my ostomy bag.  I felt light-headed and dizzy and my heart raced when I stood up.  I continued to feel this way throughout the night and into the morning.  That next morning, my home health nurse called and told me that my hemoglobin (blood) count was an 8.1 and that I should go to the ER (normal range is 12-15).  She told me that the doctors usually order a blood transfusion at 8.0.  My GI doctor also got these results and she told me to go to an ER pronto!  I went to the nearest one to my house.  I really shouldn’t have driven in the state I was in but I was okay sitting down and driving, it was when I had to walk from the parking lot into the hospital where I had problems.  They got me settled in an ER bed and gave me a unit of blood because now my blood count had dropped to a 6.8!  About 45 mins later, I lost a lot of blood through my bag by emptying it 3 times in a row!  The second time, I nearly passed out, thank Heavens I had a friend sitting with me that could notify someone!  During this time, my ostomy bag decided it had enough and it blew!  I literally was sitting in a pool of blood!  It looked like I was a victim in a crime scene!  I broke down while I was trying to clean myself up because I was’t feeling well and this was a lot to deal with at this time.  An all-time low for me..I just wanted to go home and jump in the bath.  The ER doctors decided that they couldn’t do much more for me so I was to be transported by ambulance to SLU Hospital in St. Louis.  I waited forever until a bed was ready at the hospital then had to waited a long time for an ambulance to take me..

When I got to the hospital, it was 12:30am.  They drew some more blood and this time my blood count was at an all-time low of 5.3!  I was losing blood pretty rapidly.  Early the next morning, I received 2 units of blood.  They diagnosed me with an active GI bleed.  That day they scheduled me for an endoscopy and colonoscopy so they could try and find out where the bleeding was coming from.  They couldn’t find anywhere that I was losing all this blood.  Ultimately they decided to chalk it up to the combination of the Coumadin I was on along with the massive amounts of Advil I took for my aching knee in Vegas.  That day I learned not to mix Coumadin and Advil!  They kept me there to monitor my blood count and to make sure it wasn’t going to go down anymore.  My blood count kept around 7.0-7.5.  When I was released last night, my count was 7.4.  I still have a way to get to the normal count of 12-15 but I am trying to eat foods that are rich in iron so that I can get my strength back.  Right now I am pretty weak, just taking a little bit at a time, but I’ll make it!  Before they released me, they sutured up my catheter so I wouldn’t have to go to another hospital to get it done.  Again, my mother – in – law is still in the hospital/rehab and my husband again had his wife and mother at different hospitals at the same time!  These past 2 months has been boogers for our family to say the least!!

Please pray for our family, we need all we can get at this time..I am so blessed to have such a great support system!

Chow for now!

Kelly

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

A New Beginning – From Dark to Light

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Hi everyone!  I hope everything is going well with you all.  I feel as if I need to tell you what it was like trying to adjust to a life changing surgery.  It wasn’t easy, but maybe it will help someone who may be going through the same situation.  I promise I won’t be Miss Debbie Downer for too long!

The first 6 weeks I was home from the hospital, I had a home health nurse come by once a week.  She answered a lot of questions I had come up with while trying to get used to my new life.  By the end of the 6 weeks, I felt a little anxious that I would no longer have someone to give me advice on taking care of my stoma.  Click here for more information on stomas.

During my time of healing, I slept on the recliner because I couldn’t sleep well flat on my back.  It was during this time that a little bit of anxiety and depression starting creeping up on me.  I wasn’t confident that I could take care of this colostomy by myself and that in turn was giving me a lot of anxiety.  Also, during my stay in the hospital I had lost 10 lbs due to the NPO they had me on.  Nothing to eat or drink for 8 days took it’s toll on my body!  I would look in the mirror and just stare at the skin just hanging off my body – my legs, my arms and my neck.  I had lost a lot of muscle and elasticity in my skin.

I felt as if I wasn’t the same person I was before – I was a totally different person who had this foreign object stuck on her and I was babysitting it for a while.  It would leave someday..that’s when the depression starting kicking in.  You see, my doctor told me that I would have this new body and feel like a whole new, better person after this surgery.  Truth was, I wasn’t feeling that at all, after all I still have some of the Crohn’s Disease left in me.  In my small intestine there was 12 cm of Crohn’s left because if they would have taken it out, that meant I would forever be on IV nutrients for the rest of my life..they wanted to spare me that as long as they could…(hence my upcoming surgery)  So now I felt like I had been jipped – I had this colostomy to take care of plus I had my CD still active and having to take care of that also.  I just gained another problem.

My first outing was at a winery.  It was the first time my husband and I got to do something together after the surgery.  All went well for a while but then I went to the bathroom and I had sprung a leak everywhere!  I immediately came out the bathroom and told my husband we needed to go.  Likely, we were leaving!  We also went to my daughter’s band concert one night at school.  Of course, when everything got quiet, my stoma passed gas really loud!  It scared me and I threw my program straight up in the air!  Both my husband and I were so embarrassed, but it was funny to see him embarrassed!  This thing can go off at any second without warning!  I’ve learned to live with it – that doesn’t bother me anymore.  Oopsy, I’ve made a poopsy!

Likely my anxiety and depression wasn’t severe and left when I got more comfortable with my body and the noises it makes.  I now have very little accidents and I feel more confident in taking care of my colostomy.  For my first anniversary of my surgery, I took a bath.  I had heard that you can even go swimming with a colostomy bag so I wanted to take a giant leap and start with taking a bath first.  Everything went well and no problems with the bag.  Since then I have even been swimming in the ocean with no mishaps! I

I just want to let you know that even though you may feel as if there is no end to your problem(s) (I’m still battling Crohn’s Disease) day after day they get better and better.  I was in a dark place during those days and what got me through is a lot of prayers.  When I believed I couldn’t talk to anyone because I thought they wouldn’t understand, I talked to the Lord, he was always there to listen.   I even started journalizing my feelings on a daily basis.  That helped a lot also. I believe going through what I went through 4 years ago has made me a better and stronger person today.  I wouldn’t wish it upon anyone but just remember to take one day at a time and in the long run, things will get better.  If you know anyone that is going through something similar, please share my post with them. It may help them to know someone else has gone through the same and survived!

 

Chow for Now!

The Big Day 2014 – Surgery #3

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Jasey and me the day before my surgery.

Good day everyone!  This post will be a very emotional and eventful one.  Having made the decision to go forward with the colostomy surgery, I felt very emotional as the clock was ticking swiftly toward the date; February 21st, 2014.  Jasey, my 80 lb dog, had been very comfortable becoming a lap dog also.  When I sat down anywhere, she would hop up on my lap as if she were a 5 lb dog.  Those days would soon be just a memory..

The whole surgery took 5 hours that day.  I had so many tubes hanging from me, I looked and felt like some kind of alien!  One of the tubes was a urine catheter.  Throughout the surgery, the doctor gave me IV saline, however, there wasn’t any output coming out.  The doctors seemed to be worried about this so someone had the bright idea to keep pumping the fluids in me and maybe they could flush me out.  This will soon become a huge problem down the road. They kept pumping the fluids in me for 2 days straight and the second night I was there, I woke up in the middle of the night and found it difficult to breath.  They had pumped a grand total of 19 bags of IV fluid in me, which in turn gave me pneumonia.  I had blown up like the Stay Puff Marshmallow Man!

First thing in the morning, the doctor ordered a butt load of tests to confirm the pneumonia and to check for blood clots.  No one could find a vein for another IV that they just removed because I was so swollen.  Finally, my surgeon looked at me and told the nurse he thought he could do an EJ on me.  Do you know what an EJ is??  EJ stands for External Jugular.  I’m gonna say it again, External Jugular.  Sorry, couldn’t do it.  Let’s just leave it at that less the drama.  So, they ended up having to call in a vein specialist to find a vein for the tests they needed.

They decided and I agreed to place a PICC line in my arm for my antibiotics and other meds I needed.  PICC stands for Peripherally Inserted Central Catheter.  Click here for information on how and when a PICC line should be used.  My daughter has a friend who was diagnosed with Hodgkin’s Lymphoma when she was 10 years old.  What made me agree to the PICC line was me thinking if Katie can be strong and get this, so can I.  She was such an inspiration to me at that time and still is.

After my colostomy surgery. Not doing well.

After my colostomy surgery. Not doing well.

I was placed in ICU for 4 days for my pneumonia.  During that time, I had to learn how to change and drain my new colostomy bag.  At first I didn’t want anything to do with it.  It was as if that wasn’t a part of my body, it was a parasite hanging off me.  Later I realized that it wasn’t going anywhere, it was never going to leave my body so I better learn how to take care of this thing.  There was this one time I was sitting in a chair changing the bag and I started pooping everywhere!  I freaked out as well as my husband.  I think I probably broke down in tears after that episode!  I also started throwing up after I received my meds because at that time they had me NPO.  NPO is latin for nil per os, meaning nothing by mouth.  Nothing to eat or nothing to drink.  Just IV’s keeping you hydrated.  I just needed a little food in my tummy to make it happy!

Looking back now I am happy that I got my colostomy surgery.  There is no more sprinting to the bathroom and worrying if I will be able to make or not.  I still feel the need to know where the bathrooms are, but it’s not in an emergency situation anymore. I had to learn by trial and error how to properly change my bag and drain it.  I’m not going to lie, I was a big ball of mess when I got home and it hit me that I will have to take care of this for the rest of my life.  It was scary.  My next post will go more in depth about what I went through and how I came out of it a different but better person.  Til then, remember to keep smiling and take one day at a time.  You have to go through hell sometimes in order to get to the other side! Love you all!

 

Chow for now!

 

My Decision to Have a Colostomy

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Good day everyone!  Sorry for the delay in posts but my husband and I just returned from the Smokey Mountains for our 5th anniversary celebration.  We both really needed this getaway in a bad way!  Between me receiving some not-so-good news regarding surgery last week and my husband being overworked, we were really looking forward to this vacay!

I thought I would give you a little insight about my misfortunes that led to my last surgery, the BIG surgery.  Surgery #3 in 2014 is the resection that ended in a permanent colostomy.  I was getting fistula after fistula; as soon as one would get fixed, another would pop up somewhere else.  What is a fistula?  I also had several abscesses, which are collections of pus that accumulate in a local area and are filled with bacteria.  This bacteria causes inflammation and swelling, therefore, it is very painful to sit or even stand for any period of time. I was miserable during this time and knew I wouldn’t be able to tolerate this much pain very much longer.

At that time, I had tried every medicine that was available on the market and even tried my luck in a trial study (another story) yielding negative results.  My gastroenterologist scheduled a colonoscopy to see if my Crohn’s Disease (CD) had progressed.  What is a colonoscopy?  This colonoscopy was the most bloodiest and painful one I had ever had. When I woke up, I looked around and saw blood all over the front of my gown as well as on the bedding of the gurney I laid on.  I have to admit I was a little freaked when I saw this!  My doctor came in the recovery room and told my husband and I that my CD was located just inside the anus and rectum and up to my Sigmoid Colon.  This is why I was having so many fistulas and abscesses was because that is where my CD was located and I needed to have surgery that will result in a permanent colostomy as soon as possible to get the disease out of there.  She said it looked like hamburger meat in there!  I took about a week or two to make the decision to have the surgery or pursue other ways of healing.  In the long run, I knew I should have this done and over with so that I could move forward with my life as much as possible.

I wanted you to know what I went through and the feelings that led to having this permanent change to my body.  Surgery is a big decision to make and it isn’t to be taken lightly. There are a lot of things that could go wrong during surgery and afterwards.  In my next post, I will tell you about my colostomy surgery and how I felt afterwards.  You know, I’ve come to accept that if anything could go wrong, it will be to me!  I’m okay with this now, but it took a lot of time to accept this – I am a difficult person to treat!  All I can do is keep smiling (although some days, I admit, may be difficult to do) and take one day at a time !  The power of positivity and prayer is the key to healing!

 

Chow for now!