Tag Archives: Colitis

My Catheter Replacement (it would only happen to me)!

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Hello everyone, I hope you are doing well today!  I just have to write you to tell you my experience with the placement of my new Hohn catheter.  It is a doozy (of course I would have it no other way)!

So, remember the last post when I said I was a bit nervous because I was getting my old catheter replaced with a new one without putting me out?  Well, obviously I had a right to be, my sixth sense kicked in…I get to the hospital and they call my name.  I go back and put a gown on and lay on this bed.  They tell me what they are going to do, but I’m still a bit nervous.  This is one of the weird parts – they have me get up and walk to the surgery room and hop up on the table.  One of the doctors put a dressing over my head just enough to see the catheter opening. He then precedes to tell me he is going to deaden it a bit and I told him “How about a lot?”

After the area is deadened (it hurt a lot during this time), he preceded to take the old catheter out and place wires in to mark its place.  It was this time another very unsettling thing happened – the doctor stopped the procedure and looked at the nurse and asked her which petal he should use!  She paused for a moment and told him to try the right one.  Then she stopped him and said “Yeah, I believe it is the right petal.”  Okay, by this time I am freaking out because I am wide awake and can hear all this going on!  My little heart is going pitter patter very fast!  After all this was over, the other nurses congratulated the one nurse and she told them she hadn’t done this in a long time!  So, the one doctor leaves and another comes in to stitch me up.  By this time, the numbing medication was wearing off and I yell “Ouch!”  The doctor then numbs me up with more shots and he proceeds to finish up.  The nurses help me off the surgery table and walk me back to the recovery room bed (weird).  At the same time, as I got off the surgery table, I looked down and saw splatters of blood all over the floor – my blood! It’s over now, so I get dressed and leave – drove myself home.

So I get home and look at what was done.  By this time the numbness is wearing off and they didn’t give me any pain meds for this.  I forgot to ask because it was numb when I left.  I could definitely tell a male placed this catheter in because it went right under my bra strap.  I cannot have the strap over the catheter or it will eventually rub itself out.  So my next step was to call my Home Health nurse because the dressing was falling off me and I was in a lot of pain.  She looked at my catheter placement and by this time I was black and blue.  It had looked like someone beat me up!  She changed the dressing and couldn’t give me anything for the pain unfortunately.  For the next week, I was taking 3 Tylenol every 4 hours and was in a lot of pain.  The HH nurse called the hospital and told them about the pain and severe bruising.  They said the bruising was from all the shots they gave me to numb me.  Nothing they can do, just wait it out!

If I ever have to have this thing replaced again, I will definitely tell them they will have to knock me out first!  There is no way on earth I will go through all this pain and suffering just to have it replaced!  The first catheter didn’t cause half this pain nor did it ever bruise but of course they gave me pain meds for that one!  I also had to go to the mall and buy a couple of strapless bras so the strap wouldn’t rub the catheter out.  It will get some getting used to wearing strapless bras constantly but I guess that’s the price I have to pay in order to keep myself healthier!  I am taking one day at a time and it is getting better now but I still have a long way to go to get back to where I was with the old catheter.  I feel as if I took one step forward and two steps back!

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

Blockage Problems and Then Some

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Hello everyone, I hope things are going well with you.  I am sorry you haven’t heard from me in a while – I haven’t been feeling in tip top shape here lately.  My blockage problems have came back and I have some other mishaps along the way.  Here are some details on what have been going on since I last posted.

11/28/2016. After we had Thanksgiving and festivities at my family’s, we came back up to O’Fallon, IL on Saturday.  Saturday night, my husband and I went out to eat at Hooter’s because I was craving chicken wings and we hadn’t been there in a while.  I noticed when I got up the next morning that I hadn’t filled up my bag any throughout the night.  I thought it was weird but I didn’t think much about it.  That next day, we were to have Thanksgiving at the Tyberendt’s house.  I had my fair share of food that day and still did not fill my bag any.  Early the next morning around 2 am, I woke up with severe pains that came and went in waves.  That night, I didn’t get any sleep and was doubled over in a fetal position all night.  Later that morning, I took the Entecort steroids that my new doctor told me to take if the blockage pains ever returned.  I mustered up the strength to take my daughter to school then crashed on the couch the rest of the day.  I didn’t eat or drink anything all day until around 6 pm.  I decided I would try a little chicken noodle soup.  That was not a good decision, I could not keep it in for very long after eating.  That day I took a total of 2 pain pills, 2 advil and my steriods and was still not doing well.  I emailed my doctor to let her know what was going on.  I also had the hydration saline bags hooked up to me so I wouldn’t dehydrate.  The doctor told me I was doing the right things but if I kept having the pains I should see about going to the hospital.  I would rather do everything at home than sit in the hospital room for 3 -4 days doing the exact same thing I’m now doing at home.  The next morning, I didn’t have any blockage pains but I could still feel something wasn’t right.  I did find the courage to eat one scrambled egg that day and a little bit of water.

12/13/16.  So I am now not feeling well but not sure what is going on.  I just feel blah.  At one point I am thinking it may be my blood pressure.  Every night around 6 pm I just crash.  I start getting a huge headache and my face gets flushed.  Last week when I went to the doctor, my BP was 120/73 which is perfectly normal for other people but it hasn’t been that high in ages for me.

12/15/16.  Still not feeling well. I wake up with a headache and go to bed with a headache and have a headache in-between and I’m not a headache person! I have been taking beau coups amounts of Tylenol just to subside it a bit. I also found out from my home health nurse that I have a low heart rate (50).  She called my primary doctor and let her know my symptoms I have been having and that my pulse is usually around 80 but now it is 50 for some reason.  My primary told me to get some blood work done and to go to Mercy’s Heart Hospital in St. Louis and get a heart monitor put on me. I feel tired all the time, hence the heart rate I guess.. All this right before Christmas! Also, my food isn’t tasting right either. Unless I have a lot of salt on my food to taste or it is very sweet, I don’t taste it.

12/16/16.  I did get some information back on my blood work from the doctor..I am moderately  anemic.  This has gotten worse from the slightly anemic that I was.  The nurse told me to eat more red meat!  I told her that I cut red meat out of my diet this past summer due to blockage problems.  Obviously I should have compensated for taking the red meat out of my diet.  Now I need to increase my iron in my diet.  Damned if I do, damned if I don’t!  Also, my magnesium was on the low side so she wanted me to get some over- the- counter magnesium topical cream. This cream is suppose to soak through your skin.

Please say a little prayer for me as I am going through all this stuff.  I haven’t yet found out what the heart monitor reads, I guess my doctor will call and let me know the results.  I will keep ya’ll informed of any new news. I know I have to take this disease one day at a time but sometimes it is so difficult to remind myself.  I need all the encouragement I can get right now, so please send me a shout out and let me know I’m not alone with this disease..

Chow for now!