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Marcie
(@shulmjs)
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January 14, 2018 5:48 pm  

John, Tablets?  U mean Anit-depresdants?  The Dr. will decide on that.. But I worry about the fact some Doctors just give people such strong ones they cannot work within their minds.. I believe we should work with them NOT them work FOR us.. Besides, It took me over a year before I went for help--A smart person goes for help--not the river..  I truly feel if one is stuck as I was, a little life was a million mile for  me.. But, I had to work WITH them.. That is what they are for-- I didn't have a broken arm....  I was confused, alone, scared, and not me.. Some can put weight on also-- So the Dr. has to know their patients.. Many factors go into this.. I am picky on medications, (from readings on this blog.. Get to know knowledge)  WOW !!!!! 

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


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Barbara
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January 15, 2018 2:05 am  

Hi everybody it's been a long time since I posted. I'm back in the hospital again I have type 1 diabetes some tacos everything else. And when one has type 1 diabetes one is prone to diabetic ketoacidosis it's not a fun thing to have. Make sure glucose levels run something in the neighborhood of four to five hundred and tries to try to make you die. And that's what I had going on this time around. Had a long talk with my son tonight we got to do something about this because it's getting to be ridiculous this is the 4th time I've been in the hospital now since November. Not that I'm bragging or anything like that because this is nothing to brag about but since the end of December last year I've lost 98 lb mostly due to the surgery and all of that kind of stuff that went on with me. Had 3 surgeries between the end of December and the beginning of February. And then after that I spent the next seven months in rehab had a lovely little place called ManorCare rehab where they treated me really really well. Good people down at that place I have to give him a Kudo right now cuz they treated me really really well. So anyway back in the hospital again I got to talk to Marcy on the phone today and thought I would just relay this to you at this point. I see you've been talking about different meds and things like that I haven't had to take any I've been really quite lucky in that that way. So you know I haven't found anybody also this giving me a hard time about having an ostomy. I am 68 years old and I live in a place called The Vintage apartments. And it's not because we're all old but you know most of us. Are getting on a bit. It's been nice to be able to talk to some of the people who are at the Vintage and I can I can vent to them just like I can vent here on on this website. Once again I have to give Eric Kudos because this has been one of the best things that I've ever found and in my whole life and has given me the ability to just carry on and I thought I've had some really rough times. Thanks again Eric.

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


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Tony H
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January 15, 2018 11:08 am  

Hey Barbara nice to see you here again , happy new year and I hope this one is a healthier one for you .


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VeganOstomy
(@veganostomy)
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January 15, 2018 11:27 am  

Hey Barbara! You certainly are a fighter! As Tony said, I hope that 2018 is a better year for you.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Robert
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January 15, 2018 11:36 am  

Hey Barbara good to see you back here again . Sorry to hear you have been having problems . But I think you are tuff n you will get through it again . BTW I will hold onto the coupons I have for the Grand Slams till you fell up to it . :-) . Get better n get outta there .

Subtotal colectomy , Ileostomy , Ulcerative Colitis


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john68
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January 15, 2018 2:31 pm  

Hi Barbara, ye don,t do things by half, keep well.

ileostomy 31st August 1994 for Crohns


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Marcie
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January 15, 2018 4:35 pm  

Gezzzzzzzzzz !! I was 119 pounds yesterday- now I lost 3 pounds over night.. It is the fluids..  Just can't hold them.. Infusion Tuesday- closed today (Monday) I am sure that Wednesday will be closed - getting 8 inches f snow-possibly? Who knows with the New England weather?? So again on Friday-- The holidays kill me.. I loved Martin Luther King, Wonderful man!! But why does the cancer center have to close? 

God, I want out of this infusion, fluids thing so bad!!! 3 years of this-no life..  I want to water ski with Linda!! :-)

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


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FelicityG
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January 15, 2018 7:19 pm  

Typically I am a nicely packed 130 to 140 pound at 5"4. When I flare I drop weight quickly. I was down to 108 lbs five months ago, plumped to 120 before my surgery after Thanksgiving. Went down to 110lbs in hospital. Currently 122 lbs seven weeks post surgery.

I am using the My Fitness Pal app to calorie track, making sure I get at least the calories I need to gain in. You can search for foods, scan barcodes. I think there is even a way to enter recipes. Also stocked up on high calorie snacks and foods I enjoy. 

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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Robert
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January 16, 2018 11:56 am  

Hey Felicity glad to see you back

Subtotal colectomy , Ileostomy , Ulcerative Colitis


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Barbara
(@msbjlee)
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January 16, 2018 11:06 pm  

Well the doctor came in to the hospital here at to Sacred Heart this morning told me that my glucose numbers were back where they belong and that my fluids were all up which means that they might last that way for 15 to 2 has Marcie can a test they pump it in we pump it right back out again and we wondered why you were continually dehydrated. Anyways doctor came in and told me that I have permission to leave the hospital tomorrow and I will be going back to ManorCare again for a few weeks of rehab. ManorCare was where I did my rehab after my surgery last January they took good care of me they got me up and moving and and I they see me coming at the hospital get out of greeting the pole line up a couple of bottles of fluids on it hook me up to a needle or two and start pumping me full of fluids and that lasts like I said 15 or 20 minutes  and then found out that wants to come into the hospital and have a lovely little infection called C diff once before they always consider that you have. Not quite sure how that works but I do know that every time I come in the hospital they start pumping me full of Vancomycin again and Vancomycin  grape flavored antibiotics that you can possibly imagine think that they can do that again. I must admit that I'm having a little trouble with my spirit sometimes just way too many times being sick right now and I just really would rather not do that. Kind of feel a little bit like Marcie I just came up with a great plan regarding Vancomycin the nurse taking care of me this evening doesn't think that it's such a good idea but I think I've got a really red hot when going. Vancomycin is the most God awful tasting antibiotic that I have ever put in my mouth. Somebody called a grape and if grapes taste like that I will never in my life even other great. So anyway I was thinking they serve it to you in this little syringe you put it in your mouth squeeze hard and swallow it hoping that you don't taste it along the way. My plan is that I will take it and burp my bag and just give me a quick little squirt in my ostomy I really don't like a girl that let me get away with it but it was a good thought Hall it lasted and that just a marvelous plan and let me get away with it

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


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Zvitusk
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January 16, 2018 11:25 pm  

Hey Barbara, 

CDIFF  is nothing to laugh at.  And Vancomycin is a last resort antibiotic.  Very serious business  and not to be treated lightly. Only thing worse is to catch MERSA. Hospitals can be dangerous to your health. 

Take care.


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FelicityG
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January 17, 2018 6:48 am  

Ask if they have some ginger ale. I was pouring my vanco into a double shot glass and then pouring a bit of ginger ale in with it at home. Seems to work with almost any nasty liquid med.

You don't want the syringe method. Instant gag reflex when they did it to me! No fun with a midline incision I tell you. The pharmacy packages it into little syringes in hospital. Nurses typically prefer to administer it so they can be sure it went into the mouth and not another recepticle. They got to trust me, so I'd slowly administer it and take big swigs of ginger ale.

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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Marcie
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January 17, 2018 10:44 am  

Linda, Felicity, anyone dehydrated--  I found at the DOLAR STORE a plastic cup-looks like a canning jar..  Has a large opening straw with a weight at the bottom-This allows NO AIR when drinking!! :-) I find at night, 3 good sips helps your thirst.. it is fast and quenching..  As I and some here don't want to drink a lot during the night because of having to empty to much.. This helps to hydrate you and keeps the needs of your fluids.... Holds 20 ounces.. I am finding that I drink more and hope this helps  me.. Also hopes this helps others.. Nice little cup-- :-) ------- 

Barbara, do u have c-diff again? That grape cure doesn't sound like much fun..  Good luck during your rehab!! This will help you make a proper adjustment before going home--and you will see others again.. An easy transformation for you and you will NOT be alone.  Get out the playing cards and join in some fun while your there.. :-) 

AS always, my bets to all. Marcie.. 

Robert, going outside......... :-(  Just for a few minutes........

Ginger Ale is my treat.. That helps just about anything do done nicely--especially when it is SO COLD !! 

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


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Robert
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January 17, 2018 11:54 am  

Oh no Barbara do you have C-Diff again ? Hospitals definitely are not the cleanest places to be in . Rehab is where you said they took good care of you before and they will again and its good because the will get you all straightened out and ready for home . And of course ready for a Grand Slam again ! :-)

Marcie I know what your doing out there !

Subtotal colectomy , Ileostomy , Ulcerative Colitis


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Marcie
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January 17, 2018 12:23 pm  

Robert, Not doing so hot.. Need my outside time.. !!! Feeling kinda low--my kidney are  going into failure again.. E.R. and hospital yesterday and got home today-Can't pee.. :-{} So much for trying for infusions 2 times a week huh? -got to stay on 3 times a week.. :-( so much for that plan.. Nellie is being over worked RE: Dr. orders.. Hey John, make room for me at the pub?? Lost my 8 pounds over  night-- I was so happy with that weight gain too! Just can't keep the fluids.. SOMEDAY! Huh?  My plan for the future.. Today I will do some ironing.. Got to do something positive everyday even if it is small- But this will defenatly make a clearing in that corner.. That was bugging me.. And keep my mind off me.. :-) Ya!!!!!!!!! Little at a time - it adds up to a happy Marcie.. SO many things to tackle but have to keep a low profile as I burn to many calories. Got to find another good book to keep me quiet.. I am so hyper.........by nature, hard for me to control that.. Well, of to my "new cup" that I bought @ the DOLLAR STORE and sip away.......... Got over 60 ounces in me already and still no peeing.. So I shall slish slosh off and iron.. :-) Nellie is not happy ........talk about hyper???

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


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FelicityG
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January 17, 2018 2:59 pm  

C Dif unfortunately is spread by spores, these are hard to get rid of, they can last 70 to 90 days outside of a body. These can hang out in bathrooms, on door handles, on hard surfaces, on linen/ clothing. Here we go with our wonky immune systems and provide an awesome home to flourish in.

In cleaning we were told hot water for washing our clothes and linens. You can wash spores out of clothing, they can hang around in the washer and tada, more contaminated clothing Chlorine bleach from powder/ clorax wipes for hard surface.

I've been told once you get it your chances of being reinfected are higher.

Marcie: I've got a gang of little water bottles, maybe 16 oz, that I take two of and carry. One for me to drink from and one to use to rinse Oscars bag. The Oscar ones have little happy poos on them.

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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Marcie
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January 17, 2018 4:37 pm  

R spores are different than sores? I mean sores are sores.. and must be taken care of.. Difference please? 

I spray all know knobs during the fall and winter months and the slush toilet handles every chance I get. I at home anyways use MY bathroom in the master bedroom.  I have also noted all the good public bathrooms in al the area I go to.. Stay away from the gas stations!! :-( !!

If your water bottles are plastic (for drinking) change them often or clean them well with some bleach.. and of course rise well.  Ever see what lays on the bottom of them after awhile?  My son really got on me about that.. HE was right.. So, he got me a whole new pack of them.. I am really enjoying my 20 z. jobber!! Drinking more than I have before and drinking not as much at one time = better for me.. Hope this help me move forward.. Dish washer safe too. Now where did u get that poo face one?? 

Glad to see u back!! 

 

 

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


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FelicityG
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January 17, 2018 5:13 pm  

Think of spores like they are seeds or eggs. A tough shell protecting what will be C Dif. 

Yes, plenty of bottles, I switch them out. My little poo bottles came from Wal-Marts. I also have some nice metal ones Thermos made years ago, non insulated. 

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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Marcie
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January 17, 2018 7:41 pm  

Felicity, thank you for clearing that one up for me.. :-) 

I have a feeling with all the fluids that I am to take today + + +, I will be up all night.. Hopefully peeing..  ?????? Glad your feeling better.. and gaining the weight that u want..

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


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Barbara
(@msbjlee)
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January 19, 2018 3:42 pm  

Yep another go-round with c.diff but it turns out that that's just going to be the way things are for the rest of my life. The way that I've been treated so far in the last 6 months of the year every time I go into the hospital they quarantine me with c.diff whether or not it's tested positive or not.

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


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