The Stumble Inn The place for social chat for our M.S. community. The Stumble Inn


advertisement
Reply
 
Thread Tools Display Modes
Old 09-21-2016, 03:41 PM #81
NurseNancy's Avatar
NurseNancy NurseNancy is offline
Grand Magnate
 
Join Date: May 2007
Location: Florida
Posts: 4,240
15 yr Member
NurseNancy NurseNancy is offline
Grand Magnate
NurseNancy's Avatar
 
Join Date: May 2007
Location: Florida
Posts: 4,240
15 yr Member
Default

i am also soooo relieved to hear from you and that you're doing better.

i was on copaxone for 10 yrs and finally stopped. thankfully no ill effects.

i totally understand your new routine but please check in maybe once a wk?
__________________
Judy
trying to be New Skinny Butt
______________________
You are a child of the universe, no less than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.
--------------------------------------
"DESIDERATA" by Max Ehrmann
NurseNancy is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ger715 (09-22-2016), PamelaJune (09-24-2016)

advertisement
Old 09-21-2016, 06:50 PM #82
doydie's Avatar
doydie doydie is offline
Elder
 
Join Date: Aug 2006
Location: southern Indiana
Posts: 5,533
15 yr Member
doydie doydie is offline
Elder
doydie's Avatar
 
Join Date: Aug 2006
Location: southern Indiana
Posts: 5,533
15 yr Member
Default

gerri, Charlie is doing as well as anyone can with a new ileostomy. Although he knows he had to have it and life is much better with it, he hates it. He is so much healthier, looks a lot better, goes out Karaoke 2-3 times a week, does some yard work, roles have changed and he was my caregiver for awhile. But he still says that he sometimes regrets having it done. Main reason? He hates that his butt is sewn shut, just doesn't fell natural. Of course it doesn't and I can't even pretend to know what it feels like. The stubborn man will still not go out and buy some pants that can fit his waist line much less fit with his ostomy bag inside his pants. So at home the bag is just hanging out of his shirt and when he goes out he takes a piece of tape and makes the actual bag shorter so that his shirt covers it. But if he raises his arms like to put on his jacket it shows. MEN
__________________

.
doydie is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ger715 (09-22-2016), NurseNancy (09-22-2016), PamelaJune (09-22-2016)
Old 09-22-2016, 08:32 PM #83
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
Default

doydie,
Hopefully, in time (not too long), he will adjust and get the necessary clothing; possibly order by mail; of course it will be trial and error. Some things may have to be returned. I do so much of my shopping from home; I am always looking for free shipping and when possible; free returns..

Since I have some issues that may eventually have a need for that type of surgery, I have done research over the past few years. I read some responses mentioning that area not being sewn shut but left as is which, at times, led to some leakage. Not nice either way.

While, of course, he would rather not have had to have the surgery; it is Charlie's good fortune to have married such a caring nurse.


Gerry
ger715 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
doydie (09-22-2016), NurseNancy (09-24-2016), PamelaJune (09-24-2016)
Old 09-22-2016, 08:39 PM #84
doydie's Avatar
doydie doydie is offline
Elder
 
Join Date: Aug 2006
Location: southern Indiana
Posts: 5,533
15 yr Member
doydie doydie is offline
Elder
doydie's Avatar
 
Join Date: Aug 2006
Location: southern Indiana
Posts: 5,533
15 yr Member
Default

gerri, I have a choir member that works for a gastroenterologist and both she and his GI doc say that is the reason they have to sew it shut. He just says it feels so foreign and that many times he regrets having the surgery. But just to look at the guy you can see he is so much healthier.

Sometimes with his anger issue I don't feel so lucky to be married to him. He is right and the only one who is right about any situation.
__________________

.
doydie is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ger715 (09-22-2016), NurseNancy (09-24-2016), PamelaJune (09-24-2016)
Old 09-28-2016, 10:43 AM #85
tkrik's Avatar
tkrik tkrik is offline
Wise Elder
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
tkrik tkrik is offline
Wise Elder
tkrik's Avatar
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
Default

For Charlie, it may be that the bag is uncomfortable against his skin. I don't know what kind he is using but the "cloth" backing are more comfortable than the plastic ones. Additionally, they do make clothing/underwear that has a pocket in them for the ostomy bag. (Check out Ostomy Secrets for ideas.) It may be something you want to check in to. Also, I don't know why some doctors close the area and some leave it open. Leakage of mucus is normal when it is left open as what's left of the colon/rectum still produces mucus. I have read that recovering from closure of the rectum is a painful process.
tkrik is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ger715 (09-28-2016), PamelaJune (09-28-2016)
Old 09-28-2016, 06:50 PM #86
doydie's Avatar
doydie doydie is offline
Elder
 
Join Date: Aug 2006
Location: southern Indiana
Posts: 5,533
15 yr Member
doydie doydie is offline
Elder
doydie's Avatar
 
Join Date: Aug 2006
Location: southern Indiana
Posts: 5,533
15 yr Member
Default

Pretty much all of the bags he has used have some kind of 'cloth backing' on them. Some of them he says makes him sweat. We are slowly narrowing down what works and what doesn't. With what is going on with my pain right now, I am going to remind him again how important it is for him to change it. He has a new bag on now and this particular bag's seal lasts 7 days. I have seen the website of the underwear and he won't wear any of them.
__________________

.
doydie is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ger715 (09-28-2016), NurseNancy (09-29-2016), tkrik (10-05-2016)
Old 10-05-2016, 11:55 AM #87
tkrik's Avatar
tkrik tkrik is offline
Wise Elder
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
tkrik tkrik is offline
Wise Elder
tkrik's Avatar
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
Default

Seven days is awesome!!!! It takes a while to narrow down what bag works and what ones don't work.

How have you been feeling otherwise? How had your HR and BP been? I am still saying extra prayers for you!
tkrik is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
PamelaJune (10-05-2016)
Old 10-05-2016, 09:07 PM #88
doydie's Avatar
doydie doydie is offline
Elder
 
Join Date: Aug 2006
Location: southern Indiana
Posts: 5,533
15 yr Member
doydie doydie is offline
Elder
doydie's Avatar
 
Join Date: Aug 2006
Location: southern Indiana
Posts: 5,533
15 yr Member
Default

yeah, we really like that Coloplast bag. It is a 2 piece bag system and it's transparent so that if he ever gets the nerve to change it, he can see his stoma. Only problem is that once we found what we wanted, we needed to get it ordered. So the medical supply place told us what we need to do, called the Drs office which of course you leave a voice mail and wait for them to call back. So we are in limbo wondering when we can get the order. We have that same bag in a 1 piece but with the 2 piece I can put the barrier horizontal and it misses his belly button. I will have to do some creative cutting to get the other one to make a good seal around his belly button. We also have the old fashioned generic bag from the hospital if we have to use it. We do really like this other bag though.

I am also dealing with ordering my new CPAP. Insurance finally OK'd it. Now I just wait for the respiratory therapist from another supply company to call and make an appointment. I just add another layer of tape when I find a leak.

Then I am dealing with a subcontracter that my eye doctor uses to take care of billing. You do not get the laser treatment, this was back in February, until you make the co-payment. So I paid this back then. Several months later I get a notice of an unpaid bill. Call and they say they have been getting dozens of calls giving the same story. She sends on email to try to clear up my case. So last week I get a statement from a collection agency for the bill

You ask how I am doing as far as my B/P and heart rate. Heart rate is fine, stay in the mid 50s which is fine with me. B/P still to high because of the amount of pain. Well that is what I am thinking. /and if the neurosurgeon does decide to do surgery, I have to deal with the cardiologist to see if I can go off of the medicine you take for 365 days after a stent. I don't know if I can use the kind of blood thinner that ou inject in our bell or not.

WOW, I can sure vent in here. It just runs out of my fingers onto the keyboard.
__________________

.
doydie is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ger715 (10-20-2016), NurseNancy (10-23-2016), PamelaJune (10-06-2016), tkrik (10-07-2016)
Old 10-20-2016, 11:34 PM #89
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
Default

doydie;
That's what we're here for. Thank you for sharing.

Gerry
ger715 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
doydie (10-22-2016), NurseNancy (10-23-2016), PamelaJune (10-21-2016)
Reply

Tags
cardiologist, chest, nurse, pain, stress

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
OMG OMG SO my Neuro suggested I see a cardiologist (mg related) rockenmama Myasthenia Gravis 5 04-09-2015 10:29 PM
Cardiologist prednisone? anon6618 Myasthenia Gravis 3 10-18-2013 01:22 PM
From Respected Cardiologist to PD Patient...'Life in the Balance' Chronicles His PD Stitcher Parkinson's Disease 1 06-28-2008 05:13 PM
Seeing a Cardiologist soon. dreambeliever128 Reflex Sympathetic Dystrophy (RSD and CRPS) 8 04-27-2007 01:51 PM


All times are GMT -5. The time now is 04:23 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.