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john68
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October 8, 2017 3:56 am  

Morning All,

Last night before heading to bed I spotted the new member Bluechip who was reaching out for help with their daughter. it is terrible shame and a disgrace that a young patient or any patient for that manner is discharged without proper knowledge. When I had my surgery the hospital was so over stretched that the only place they could find to give me a bed was in the Fracture Unit. I never seen the Stoma nurse until I was home. the staff who changed my bag knew probably just a little more than me. Now I am not having a dig at Medical staff I have always said they did a brilliant job, its the dam pen pushers in some office making the rules and cutting budgets. I really hope Bluchip keeps in touch and comes back with more details and questions. Sorry folks to start the day with a rant but that makes me cross!!

ileostomy 31st August 1994 for Crohns


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VeganOstomy
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October 8, 2017 11:59 am  

This is a global problem, and believe me when I say that stoma nurses are fighting to get more access to patients.

I think it's a complete disgrace for any hospital to have no information available to give to patients. It's not that difficult to whip up a small brochure or give out the ones already available through various ostomy bag manufacturers. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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FelicityG
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October 8, 2017 12:15 pm  

I was shown how to by an Ostomy nurse, had a home health nurse available. I arranged to do my first solo change when she was in the area but declined having her there. If I needed help I was to call her. I only accepted home health because I was told I had to because they'd be bringing supplies. I'd had a horrid experience with one before.

I am lucky, I've been in a health care affiliated job for years. I almost went into nursing, took half the classes to do so. I can understand medical speak and how to cleanly change dressings and why certain things need doing. My dad, brother and even a few cousins are nurses so I've got several I can call for help. As a Nursing Assistant I took care of emptying a Colostomy so I had an idea of how to deal with mine. When I returned to work I had offers of assistance as needed from the RNs, our in house wound care nurse, even our dietician for food stuff. Hell, even our speech therapist let me know she was available for advice.

After care is not always well done. Sometimes the ball drops when we get out of the hospital setting.

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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john68
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October 8, 2017 1:47 pm  

Their is an on going trend here that some times the Ostomy patient is lucky. Lucky to find Vegan Ostomy, lucky to have a friend who knows some one who can help. Another point here in the UK we are lucky (their we are again) not to have to pay for our supplies. but from what I have seen on the site you guys in Canada and the State have to work out an insurance/medical plan. again a mine field to go through when you not at your best to do it. Even a poster on a hospital notice board giving web sites and details of support groups. Its bad enough a lot of ostomates are lucky to be alive without being lucky enough to be helped

ileostomy 31st August 1994 for Crohns


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FelicityG
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October 8, 2017 1:55 pm  

Ah, my starter stuff consisting of 10 flanges, 10 ventless clear front bags, 10 eakins rings, 1 tube of paste and 1 container of stoma powder would have ran me 470$ or basically almost 2 weeks pay for me. Insurance covered it all thankfully. 65$ out of pocket for 20 ventless one pieces. I seriously wonder how US ostomates without insurance manage. 

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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john68
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October 8, 2017 1:59 pm  

Plus would I be right in saying you could be out of pocket until the insurance kicks in

ileostomy 31st August 1994 for Crohns


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john68
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October 8, 2017 2:04 pm  

Ps so some people may not get or have insurance

ileostomy 31st August 1994 for Crohns


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FelicityG
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October 8, 2017 3:56 pm  

Thankfully if I order it from my supplier and my Dr prescribes it nothing comes out of my pocket unless there is a copay for some reason. I really feel for those here in the states that don't have insurance or don't have as good of a plan as I've got.

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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Dona
 Dona
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October 8, 2017 4:11 pm  

I am on Medicare, so thankfully , my ostomy needs are covered. However, I can really feel for people who do not have or can not afford insurance. And lets not forget that this is one heavy preexisting condition. Both the fact of the ostomy and what ever disease or injury led us to have this life saving surgery.

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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VeganOstomy
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October 8, 2017 4:19 pm  
Posted by: john68

Plus would I be right in saying you could be out of pocket until the insurance kicks in

Yup. I underestimated how much ostomy supplies cost, so I thought I could ride it out on the government grants (which, realistically only covered a month or two out of the year back then), so I had to scramble to find private insurance that covered pre-existing conditions! 

But I will say that my hospital stay, the surgery, and the home care didn't cost me a thing. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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October 8, 2017 5:15 pm  

Their is a huge issue that is being ignored

ileostomy 31st August 1994 for Crohns


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Tony H
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October 9, 2017 10:17 am  

I had great in hospital stoma nurses , there were 3 of them so one of them was always available , however when I was discharged the best advice and support came from the coloplast support nurse , she was excellent , I know she was promoting her brand but she called on me the day after I left hospital and set me up with supplies and great advise , 

my local hospital stoma nurse is a disaster , she is old fashioned and patients seem like a burden to her and she is always complaining ,

I think I might have a hernia around the stoma and she would not even give an opinion or advise on it , she is in the job for a long time and I thought that she could at least give an opinion esp seeing as she is so experienced , her stock answer is you have to ask the doctor , well I have an appointment with the doctor on Friday and hopefully its not a hernia ,

The best support I have found are sites like Eric's  and the frontbut youtuber and others like  http://www.crohnsforum.com/  


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john68
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October 9, 2017 10:50 am  

Hi Tony,

I really thought at the start you where going going to prove us all wrong and then it went down hill. Sounds like yer coping well and hope all is ok with that suspect hernia. always better if in doubt find out.

ileostomy 31st August 1994 for Crohns


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Robert
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October 11, 2017 7:19 pm  

Yup sounds like hospitals giving us info on having an ostomy is the same everywhere  . When in hospital they gave me a laptop with a video to watch and showed me how to drain it and helped me thru a full change once . Sent home with minimal supplies . Had help with my supplies from home nurses day after I got home . Was supposed to have ostomy nurses but I had a feeling they weren't  . But was a very nice nurse . Then after that yes started watching Erics videos and use front butt and ended up here with Eric and all of you . This is where I have learned the most . 

Subtotal colectomy , Ileostomy , Ulcerative Colitis


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