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Marcie
(@shulmjs)
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October 29, 2017 6:34 pm  

Ya, the chantx scared the hell out of me!!!!! All I did was sleep- and scream-- Heart beating so hard? gosh!! after 1 - 1/2 weeks of that? I stopped that and the cigs.. I still remember that experience..  Don't like mind controlling meds. and that is one of them!! What we go through to better our selves huh? I got a plan.. still need support you people.. So- I can run over to Felicictiy when she needs me........... 

Now to see how Brabara is doing huh? 

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


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Marcie
(@shulmjs)
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October 29, 2017 7:59 pm  

Snow? or sooner.. Just having such nice weather this year in New England-- Weird!!! Gonna get clobbered hard.. Eh?  what ever.. Snow Angles........... 

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


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carolynreinhart
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October 31, 2017 7:55 pm  

Hi Tony

I did look at the site in the UK which Eric suggested. I couldn`t see where the stoma was on or in it. Does the belt not block the stoma - I get so many blockages I would be nervous. Can you let me know please. 

Carolyn

Carolyn Reinhart


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carolynreinhart
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October 31, 2017 9:03 pm  

Hi Marcie

I got a hernia right after my ileostomy surgery - I was in hosp for 5 weeks because I had thrombosis and a big hemorrhage etc - I had to pull on my bedside very hard to get up and out of bed even though I raised the bed to maximum situp up position. I think that is when I got my hernia. Also they didn`t tell me ab0ut hernias or about wearing even the thin belt that hooks onto the pouch so the bag was just hanging there when I got up. Sad!

Carolyn Reinhart


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Dona
 Dona
(@dona)
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October 31, 2017 9:21 pm  

Hi Carolyn,

Did you get my reply to your message?

I don't know how to find it again. Just checking.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Marcie
(@shulmjs)
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October 31, 2017 9:37 pm  

Yes, Carolyn, it is sad!!!!!  They (all hospital staff) just open u up and grab the money and your off!  As it turns out, we are delicate people... I do get out of bed with  a sit-up style still.  Guess back to the 9th month of pregnacy rolling onto the floor and get up..  gezzzzzzzzzzz!!!

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


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Marcie
(@shulmjs)
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October 31, 2017 9:40 pm  

Carolyn, You look so royal in your picture..  

I did send u a private message just now-did u get it? I replyed to your request.

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


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Marcie
(@shulmjs)
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October 31, 2017 9:44 pm  

I am working at it Robert.  I am on track for this weekend of down to 4 per/day.. I have lots of kitchen cabinets to paint-so I should get to that and keep me busy

AND then, Get the stupid ziz-saw puzzles out... Busy hands!!!!!! 

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


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carolynreinhart
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October 31, 2017 9:47 pm  

Royal - really - I did live in the UK for 30 years until 2005 so maybe something rubbed off - ha ha. 

Carolyn Reinhart


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Marcie
(@shulmjs)
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October 31, 2017 10:01 pm  

so straight and proper like. 

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


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Marcie
(@shulmjs)
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October 31, 2017 10:15 pm  

Tony, I hate the material NU HOPE has- thin and sharp and very uncomfortable.. Hope this type of belt material is better than the ones for the pouch hold. Wont wear it.. Really, I don't even wear belts.. Unless I have a rash of some kind and then I will slap one on for tight stable fit at night. Good luck!! M.

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


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Tony H
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Posts: 162
November 1, 2017 7:46 am  

Hey Marcie I dis not buy the nu-hope belt as

the delivery time to Ireland would be about 5 week ,

John suggested that I look at the comfizz website and I purchased a belt from them and apart frim

a

  1. few small niggles its working really well ,glad now I did not get the nu-hope belt if its as prone to causing rashes as you think

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Marcie
(@shulmjs)
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November 1, 2017 9:04 am  

Not only rashs- but it is -the material is awful- I have their belt fro pouching-just threw it away-- It is light weight tho- and very elastic.. 

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


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carolynreinhart
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November 1, 2017 7:19 pm  

Hi Marcie

You talked about a strangulated colon and then how they had to remove it. My bowel has already been taken out due to Ulcerative Colitis which I had for years. Now I have a hernia around my stoma and a defect between the stoma and abdominal wall ie a small gap so the small bowel will poke through and then I have a blockage, for no particular reason. However it is very serious - I have to go to ER immediately, be put on IV along with pain and nausea meds, have a CT scan and see what is happening. So far it ultimately resolves itself if I have nothing by mouth. If it didn`t or doesn`t then I would have to have it repaired - they put in mesh to close the gap and Dr SugarBaker designed this type of surgery. Not many doctors know how to do it. 

Carolyn

Carolyn Reinhart


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Dona
 Dona
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November 1, 2017 7:32 pm  

Hi Carolyn,

 I see you are still dealing with the hernia. You know ( I am sure you do) that sometimes its not a blockage, it just feels like one when your illum goes out and gets trapped out there by the hernia which can kind of close up around the escaped intestine and keep it from going back. It has the same effect as a blockage in that it  keeps anything from passing through. And often, I think, feels just the same. Thats whats kind of hard about a diagnosis. But since you are getting CAT scans, the doctors should figure out whats happening and what to do.

Mine resolved itself in the hospital too, I think because of the pain medications ( which relaxed my abdomen) and time, and that I finally got to lay down flat ( after 5.5 hours in the ER waiting room). When they took the CAT scan was when they discovered the reason for the pain, thats when they advised me to get it repaired. Confusing since you can have either or I guess both things ... a blockage from food, and a hernia. 

OUCH!

Best wishes to you. I have thought about you.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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carolynreinhart
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November 1, 2017 8:13 pm  

Hi Donna

Thanks for persisting. Now you know how to click the message announcement. I appreciate what you are saying. My problem is that my surgeon up here won`t do the surgery. She said I am too much of a risk since I had such difficult post-op last time. I am 76 and may or may not do well with surgery - full stop. As I said before I think, I got 3 thrombosis in the vein to my liver - was put on warfarin and then hemorrhaged because a duodenal ulcer bled -one that no one knew I had - even me. I almost wasn`t able to get resuscitated ie almost died. There was a large group of doctors working on me and they said that they pulled out all stops. I was conscious through all of this. I was in hosp then for 5 weeks so they could monitor my blood levels and then hemorrhaged when I got home - nasally and had to go in so often by ambulance. Fun. 

So no one wants me to have more surgery - but then have a strangulated small intestine up here is not viable either - I don`t know about the chap in Barrie - I will find out more when I see him. IN the meantime I have to trust that I don`t have another incident. I agree that they aren`t true blockages but rather when the ileum pokes out of the defect. My surgeon said there is no rhyme or reason for that happening.  It`s like living on tender hooks. 

How are you doing with your flanges. Do they fit well and work well. Do you wear a ring as well. (I can`t type the question marks right now for some reason). I keep having problems and so am working directly with the manufacturer, Coloplast, who are advising again and sending samples etc. I was using a strong convex flange and then under my ring area got so red recently she is trying me out on flat flanges. It seems like a full time job sometimes.

Thanks for listening again.

Take care,

Carolyn

Carolyn Reinhart


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Marcie
(@shulmjs)
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November 1, 2017 8:21 pm  

Carolyn, Al this hernia issues seem to be rather difficult--I see you and others wanting so much knowledge and yet there is so little to offer.. I wish you and the others (and me if I get to this point-Noooo!!) the very best!! Team work everyone!!! My vest to you Carolyn, as I know that your having a time with this and future plans..  Keep us posted of any learnings.. 

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


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carolynreinhart
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November 1, 2017 8:24 pm  

thanks Marcie - will do. 

Carolyn Reinhart


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Marcie
(@shulmjs)
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November 1, 2017 8:37 pm  

YEs, Carolyn, it is a full time job getting barriers/wafers/seals to fit.. did u see my plan on rolling the seal? Gives me a more convetx.. No  more rashes--but if I feel an itching-I change-it is time.. Also, I put a little of anti-cream on the seal where the sore is-not suppost to do that-but I did anyway-and it helped so much..  Remember we are not text book and Dr.'s treat us that way-we are all different now, and they can throw away that stupid text book!!

On one of my many ambulance trips, they forgot to block down my streacher-well, what a ride that was!!! I was all over the back of that thing!!  Now, I ask if I am anchored down.. 

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


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carolynreinhart
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November 3, 2017 12:39 pm  

Thanks Marcie - You have so much experience 

Carolyn Reinhart


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