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Robert
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January 15, 2018 11:24 am  

Good Morning Linda

Sounds like we had similar problems with the infection and being noticed by a leak at first . Lucky for me though I did not have to have the Vac-U-Pac also lucky for me I had good looking nurses too but they weren't male . :-) . I haven't really talked to many people about my experience either that's another reason I like this site because you can find someone who can actually relate to what your saying . Its good to talk about things . Our Louie is 10lbs and 13 years old he is black n white . Like Romeo he has his toys we have to be careful with what we give him cause he always chews the ears off n then we find it later out in the yard after he passes it . I'm sure that isn't good for him so now his favorite is a pink pig . Lol . Amazing how much room one little dog can take up on the bed ! Lol . I always feel funny saying the make also depending on who I'm telling . They are our furry little buddy's for sure . Thank You for the nice comment about my wife I will be sure n tell her .

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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Robert
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January 15, 2018 11:49 am  

Marcie yes I do know good thing it warmed up !

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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Zvitusk
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January 15, 2018 2:07 pm  

Our experience with wound leakage and infections needs to be shared. Even though my hospital and doctors are top notch  (JHH ) manure does happen. 

My brand new stoma was 3 - 4 inches away from my 14 inch incision. The wound seeped to under the wafer. At first, the wound was packed with gauze. After a week or two,  they decided to go with the vacuum system. Excellent idea! Unfortunately,  Murphy's law went into effect.  The home health care nurse was a NINCOMPOOP. He screwed up and down and sideways. I got dehydrated and readmitted to the hospital.  His legacy to me was that he stuffed into my incision little bits of foam that broke off and were left behind when the system was changed. Unbeknownst to me, or the wound care specialists or the doctor or anyone else. My wound kept seeping a steady flow, that I thought was normal. This is already 3 months going by and it was too slow. 

Then, I noticed white pus from my belly. And I squeezed the area around until a large amount of pus was out. This is not good. I brought it to the attention of the wound care people.  They lavaged it out. This should work, they said.  Next week,  i showed them that it was worse. Another lavage and an inspection by the residents. 

Didn't work!  Finally,  my dear friend the wound care nurse, took a deep look.

He suspected that there was foreign matter in there and even got a bit with tweezers . He sent me to the surgeon to open up the wound and to clean it up. 

Surgeon did a half assed job and didn't look too hard.  He surmised and supposed and reassured that it was okay now. He was in too much of a hurry to be thurough. 

Two weeks later, I was back to square one.  Fortunately,  the surgeon did cut open up the wound.  So my dear wound care nurse dug into me and pulled out 5 pieces of foam . Yuck!

I love him!

They released me in end of December . I bought the wound care team a yummy chocolate cake with frosting as a goodby gift. 

Point is that manure happened.

The surgeon surmised that he didn't leave anything in, the WOCN nurse was  only interested in getting me out of the hospital,  home care guy wasn't trained correctly,  residents were taking pictures of the wound,  the lowly wound care technician couldn't cut me open to find the garbage,  and until the wound was made accessible i leaked pus and lost too many wafers to moisture leaking up from the wound.

Lesson learned : trust your instincts as to if you think something is wrong,  it probably is. A solution need to be found. 


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john68
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January 15, 2018 2:29 pm  

Hi Zvitusk, A Bad member of the medical staff can leave a patient of any description in distress!! this seems to be all to common among people like us. I feel it the cause to many not coming to terms with their ostomy. Its a hard field to plough without bad help!! I have the highest respect for medical staff but do agree that if any one has doubts about care speak up. my own journey would not even have started had it not been for the kindness and help of my family doctor. I have posted about this before, she had to fight to get me to the right hospital to save my life. my treatment after my op was outstanding but when ill it was awful.

ileostomy 31st August 1994 for Crohns


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Marcie
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January 15, 2018 3:57 pm  

John, Happy your still with us !! You and z and Robert have been through way to much from the start.. And Robert such a short amount if time? Your doing great!!Camping, eating bacon, corn etc.. :-)   :+{}  I worry about this u know.. 

All of you have made major steps in healing of such  - open wounds, and infections.. 

Your advise of using YOUR/MY head towards the medical profession needs us to be a show and see and demand to them.. As of my "Z" says, you can fire them.. now, I have learned much about speaking up with the Doctors, and I thank you all for this advise.. Now,where is my chocolate cake?? Z ???? 

After a year of recovery which any operation, IT is a new and different life and a slow back to most of our normal' s..  Linda,-Look at her!! Plans on  water skiing!! My hat off the her!! She can enjoy my lost sport, and I will respect her joy.. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Marcie
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January 15, 2018 4:40 pm  

Linda, Did u have your full colon removed ?  Just wondering.. After all your surgeries, you seem to be doing so well.. And making plans to water ski--you seem so "up" and healthy now.. I will be the rope girl when u water ski--:-)  Best, Marcie............ 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Zvitusk
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January 15, 2018 5:53 pm  

Linda sees a future ahead of her. She is not wallowing in self pity, but realizes that the only way is up.

It is a common denominator in all healthy attitudes. You move FORWARD , even though it is one day at a time. 

I plan to dance at my granddaughter's wedding. I plan to take my wife on a 50th wedding anniversary trip. (I am not planning on running for president,  but would consider it if it comes up) .

Some mornings,  I just aim to get to the bathroom.  One step forward. Once I get there, I move on to the NEXT STEP.  

LIFE isn't complicated if you think about it. 

  • Just keep in mind that MANURE HAPPENS.
    So you clean it up and go FORWARD .

P.S. I  have 22 grands to dance at their weddings. My dad succeeded in dancing at all of his grands except one. My stepmother is still dancing. She is working on the great grands. You gotta move forward! 


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LK
 LK
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January 16, 2018 11:07 pm  

Is this where we exchange puppy pictures?  Yes, Romeo is all over the bed.  sometimes he even snuggles up into my armpit and partially on my chest.  I have to make sure he moves right away as I get too warm and frusterated, but somehow it is cute to be needed thay way.  I guess I miss my man.  The fur ball is awesome and being a cat person all my life....having a dog is a completely different experience.  The companionship is amazing.  Sometime I feel guilty leaving him t home...especially if I am in the hopital.  Lst time I was in, being a small town hospital...I was allowed to have Romeo in with me.  It made the whole stay different and a lot more tolerable.  I tended to his meals and his deposits as the outside door was just 15 feet down the hall and other patience did not mind him being there.  He had more visits from the nurses then I did. Treats galore.  Other patience never said a thing and I assured them he would be quiet and he was.  He also being non allergetic ws golden in there.  Can you imagine that?  A dog on my bed in the hospital.  It was great nd he sure removed a lot of my stress.  

Linda

Linda


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LK
 LK
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January 17, 2018 12:46 am  

Hi there Z and Marcie, Robert and Larry....I tend to feel that making a plan for the next day is important...even if it is just what to eat.  It is a start.  Like trying a new food every week and seeing how our system relates to it.  Marcie...no I do not have worms...that was gross.

  The 2200 calories was what was in the banana bags at the hospital for nutrition.  A high calorie  nutrient mix.  I had lost teeth  because of being malnourished...and the hair....! Does anyone else find that it takes little to fill you up?  A banana bag is a IV type bag full of important nutrients to try and reverse the affects of Malnurtrition.  Given thru a pic line.  This is one reason why I eat several times a day.  Trying to eat when your gut is in pain is  what  I always deal with,  it is rediculous.  Marcie...about firing Nurses and staff.  In Canada and everyone needs to know this....we have a right to say who tends to us beside our hospital bed.  Staff shortage or not.  If you have been keeping up on things here,  you will know that the night before the infection in my belly burst,  I had had a burst of pain that had not settled down.   Then, the night before, so two nights before the emergency surgery, I had developed a fever.  I was hot and very uncomfortable and  pain had increased.  I told the nurse in charge of our room.  She told the younger nurse that I always ran warm therefore it was not neccesary to take my temperature.  I called her a fool and told her she was NOT to come back to my bedside ever again because she was useless in her job.  I then rang for the nead nurse and told her what went on.  She agreed that the nurse was in the wrong.  The head nurse took my temp. and I was 103. degrees.  She went and had words with the negligent nurse and sent her home.  Three days later she appologized for her her judgement and asked if she could continue being my nurse because she wanted to learn more about my disease and also how to care properly for a patient with this problem.  I have to admit....I had trouble trusting her,   I let her be my nurse again,  and she was much better at listening to me.  I was in for the 13 1/2 months that stay.  I could not affors to make enemies.  I new what made a good nurse because I was one.  Retired however,  but when I nursed I was very good at it and my patients were very important to me and there needs came first.   

Another bit of a horror story is that when I was just out of surgery and my pain level was still not ballanced,  I asked for a shot and the nurse on duty told me it was not time yet.  I asked if she could please come back when it was time and she assured me she would.  Always watch the time of your painkilers, ask the doctors how often you get them, and let the nurse know that you know when you get them also.  In this story, the nurse loaded a needle, carried it in  her pocket  then she forgot and went home!!!  When it was an hour past the time, I rang for the nurse. Not knowing she had gone home....I  was told that I had already had my shot!  The  other nurse had already sighned out the drugs.  I was very annoyed by this and explained that I had not really had the shot and that there was a huge mistake and that     "they"  had a problem on there hands.  I made it to be " there",  problem not mine.  I insisted  that the head nurse come to the room.  She did.  I told her what happened and insisted that she call the nurse who had been on duty.  When she did,  she was right back by my bedside with a fully loaded needle and stayed up on my shots all night.   As it turned out, the nurse who went home with my needle...she had simply forgotton it was on her and told the truth. She had taken my needle home.  She had not given me the shot at all.  The head nurse said there would be a meeting regarding this.  I am sure they did meet,  as they tended to my pain like it was theres for that duration. 

I feel another point needs to be said here...try and also keep up on what your blood pressure is.  There is no reason for it to be a secret.  Mine always runs low.  When  a nurse denied me medication because of this...I told her I always ran low and that it was normal.  She looked back in records then and there. She agreed to give me my pain killer shot.  After a year of being in hospital, I never became addicted to drugs because I only used them for pain and not for joy.  I believe there is a difference, an it is important to know  your pain well and how much you can handle before you are at your wits end.  But I also say...do not let the pain get on top of you...it can take longer to get caught up to no or to lessen the pain.  I have other health issues that cause pain so okay,  when I went to the doctor and told him that I had been on it for so long and that I wanted to see what my pain was at without it or with a smaller dose.  He thought I was nuts.  You just do not get patients saying take it away, or lessen the dose of this fentanyl I believe he was puzzled by it.  So, he lowered it gradually and I am on half  the original dose and it is going well.  Healing has taken place or the nerves have just fried!   

No one really tells us what our rights are but you have the right to deny anyone you do not care to have working with you or on you while in the hospital.  Be sure your reasons are good enough and do not block learning if you have the chance.  I find the more open I am to teach about the bag sytem the more the nurses understand.  I once taught three relatively new nurses and they asked questions I did not know the answers to in the beginning.  The thing is,  they may spend only five min. on this topic in school.  It is the nurses that takes extra time to learn,  that goes places in the medical field.  I know that my stoma nurse could have done a better job now that I know what I know  what to ask about.  I was not taught any of the things  I know now, and when they changed my bag they just did it but forgot to include me in the equation.  Not knowing what to ask was part of the problem.  I am not computer literate...but I am getting better at finding where to go.  Simply put...they did not teach.  

When we end up in the hospital a lot, it is hard to be patient and to trust when there has been a wrong.  But it is important at this point to say that there were so few problems with nurses that the majority of my long stay and subsequent stays were good and staff handled them well. Our local hospital really has only one stuffy nurse and I always ask that she not have anything to do with my care.  They always remove her as requested.  I am greatful for that.  She is one of many just putting in time to reitrement.  They are all tired and work rediculous hours, but that does not mean we have to be tolerant towards there errors.

Zvitusk...having gone thru what I believe was the worst already,  it was another shock to get out and find out five months later that my husband was dieing of pancreatic cancer.  After he died, I had to dig deep and rally  myself into survivor mode again.  I do look forward to life and appreciate that it is seen.  Thank you  for saying so.  You are all so  kind.

Linda

 

 

Linda


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Marcie
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January 17, 2018 10:06 am  

Linda, As I as you yourself said that typing is not our best etc..  You typed wormest for the water.. So it was a joke.. :-) -- Sorry that u lost your husband--must have been horrible for you trying to get back on yur feet and going through all that.. Gad yur doing o.k.

Barbara, Don't know what your taking about with my dehydration and your hospital.. again please??  :-)

I was in the E.R. etc---- yesterday got home today-.. I just colplasted..  Not going to infusion today-snow and ice storm.. BEsides I think I had my full at the hospital.. 

Linda, I also have taught nurses with my stoma and changes also- The ones that are interested.. I tell them the "WHY" and the "WHAT IF'S" Your right, they don't get much learnings.. M.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Zvitusk
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January 17, 2018 7:20 pm  

In the dictionary,  next to the word "resilient", they should have your picture as the example. 

I am pleased to make your acquaintance. I hope that we can maintain this relationship,  as I find you to be a positive attitude person. 

Keep moving forward. 

 


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Marcie
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January 17, 2018 7:51 pm  

Who r u talking to  ?? 

Lind, I understand the malnutrition bit--I didn't get that way on purpose, but it sure can sneak up on ya.. Took me a year now, and I just ate everything..... When one  s malnuritioned, we get sick to  our stomach, and then throw up, and then weak, then cant eat.. I did not get the banana bag..as you say.. but was in order of those for home use.. I said "no" Way to expensive, and the pay out of pocket? well, that speaks for it self.. I did manage to get back on my feet myself.. I just never got on my feet from the surgery 3 years ago--Just went down and down and down.. totaly a lost feeling with no control--A good fight, but I did it.. Now for my oncour.. -sp- :-)  

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Zvitusk
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January 17, 2018 9:08 pm  

Hurrah for you , Marcie.  You are beginning to move forward.  On your feet , one step at a time. 

What is your next step? 


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Marcie
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January 17, 2018 10:31 pm  

I am sick-- vomiting...............  :-(            can't pee- for days.. I drank over 60 ounces of fluids today.  At the E.R. yesterday etc.. my Kidneys are mal-functioning.. again. Nellie is upset. 

But after this is over?  I will pick up and finish what I started.......... Again.......... Just got to keep walking Nellie tonight........... sooooooooo  tired............ wish she would move onto better things.. :-) 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Robert
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January 18, 2018 11:00 am  

Marcie sorry to hear you are sick and vomiting  . When you were at the ER did they at least put in a catheter to get rid of fluids ? And did they just tell you kidneys aren't working go home ? Why did they not keep you for observation ?

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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Marcie
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January 18, 2018 11:37 am  

Kept me overnight-no, did not drain my bladder. (this is the small hospital up on the mountain) More interested in my high levels of kidneys..They called my primary Dr. and I was homeward bound.. Told me to drink LOTS of fluids.. Told me if any issues etc. go to the big hospital - ha!! I am sure they would have kept me but not getting a room until Sunday--Been there did that to many times. My Dr. called me, after she looked at my weekly blood works, and will see what the blood work is next week.. Then she will get in contact with my Kidney Dr. Feeling better than yesterday-(but I just got up) had a long night walking Nellie--but after I fell asleep, she became busy-such a brat!!  Just a little set back-been through worse.. Got bigger fish to fry -- :-)

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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LK
 LK
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January 18, 2018 11:59 pm  

Wow...that was awful.  I think I would have been a little mad at there negligence.  I know well that it is not a perfect system and I wonder why some of them are still in it when you know the care they do not give.  It is after all there job to do it right.  It seems tho until something becomes obvious they just do not get it.  I tend to think it is a lot like needing knee replacement surgery.  They seem to want you to suffer tremendously before they actually do something.  I had so very many years of pain and bowel upset that I thought I was going to go crazy.  But when the older GI doc. really listened to me he said it had a similar ring to it and wanted to run some tests.  when he admitted me and said I needed surgery I cried.  But it was relief more then anything.  

I am glad things are better for you and the wound healed.  Heres hoping it all stays that way.

Linda

Linda


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LK
 LK
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January 18, 2018 11:59 pm  

Wow...that was awful.  I think I would have been a little mad at there negligence.  I know well that it is not a perfect system and I wonder why some of them are still in it when you know the care they do not give.  It is after all there job to do it right.  It seems tho until something becomes obvious they just do not get it.  I tend to think it is a lot like needing knee replacement surgery.  They seem to want you to suffer tremendously before they actually do something.  I had so very many years of pain and bowel upset that I thought I was going to go crazy.  But when the older GI doc. really listened to me he said it had a similar ring to it and wanted to run some tests.  when he admitted me and said I needed surgery I cried.  But it was relief more then anything.  

I am glad things are better for you and the wound healed.  Heres hoping it all stays that way.

Linda

Linda


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LK
 LK
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January 19, 2018 12:22 am  

 Marcie you asked about my guts...they took out my whole large bowel in 1996 then a J- pouch,  and then thru 2007 and 2008 pieces here and there.  Seven  or  eight operations all emergency.  No choce.  In 2009  they gave me the Iloestomy. Love it, appreciate it like crazy.  I still get pain when I eat, but it is somewhat tolerable.  Things could be much worse.  Glad you have taught nurses also.  It is better that we take the time so they have hands on and information.  Did you say 47 years married...way to go.  I think it is somewhat normal for a spouse  needs to survive also.  I think if it means sleeping in a seperate room and they get there sleep...at least one of you is getting some.  I bought some of those pads we sleep on in the hospital to save the bed and sheets as soon as I could.  It goes the mile.  Four is plenty.  But two is great.

No, I do not ice skate.   But I do love to ski and look forward to my challenge in the summer.  I will let you know how it goes and what it was like.  I never did pyramids, I like the ground and the top of the water.  Not above it. Unless jumping.

Hope you feel better real soon.  Time for a change  in health I would say.

Linda

Linda


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LK
 LK
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January 19, 2018 12:34 am  

Zvitusk...I no longer have to re -look to spell your name. What  nationality is that if it is your full name?  

Like you, I believe in going forward.  Glad someone thinks I am a survivor as some days I am not so sure.  Especially when I make so many trips to the can go thru all the steps.  I think I take longer then is normal but after what Eric said about keeping track and seeing just how much time is spent with emptying and changing and so forth, it must be normal to some extent.  I think infections are scarey but never let them get the best of me.  Prayer does help and I am a big believer in God and praying and bible reading.  Many people have asked me what got me thru that 13 1/2 month stay.  I just tell  them God, reading my bible and praying. They actually sent a phychiatrist to my bedside in Vsncouver. He wanted to know if I was taking anything to provide me with my calmness.  I just laughed and said Yes...God!  He spent less then 10 min by my bed and I never saw him for three weeks.  then when he did come back he told me that people who believe in God and pray have a better survival rate. I admit that I had to chuckle at that as I already new I would survive.  I was also determined to  finsh raising my kids and seeing my hubby and my dogs thru the rest of there lives.  Ofcourse my man died, but then, so did the dogs.  The kids are still here.  Anyways, life has many surprises yet.

Sorry about your tumor.  Is there a good prognisis here?

Keep living.

Linda

Linda


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