Enigma's rave and rant

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 5/20/2011 1:26 PM (GMT -6)   
Well,
 
First, it's approx. 5 weeks past surgery....will be six come this Thursday.....I"m going to the Dr. Monday and, barring anything I don't know about, I'm sure he will say I can go back to work in a couple of weeks (hopefully I can start back part time for 1 or 2 weeks).
 
Anyway, that's the good part.  My rant is as follows: My feelings about support for ostomies is a little cloudy now after 4 weeks "on my own."  Being discharged 4 weeks ago, I feel that we are told "not enough" as patients abouHowt stoma care.  Also, being where I live, the nearest WOCN is 45 minutes away...and, I am not sure that one group of them (the ones I had in the hospital) are available for appointments.  I'm going to make an appointment with an outpatient clinic in Melbourne (I've already talked with the WOCN there).  The reason is as follows: 
 
We all know as ostomates that we can't let skin problems get carried away.  HOwever, I feel like we are all put on OJT for WOCN work for stomas....and, I don't like being in that position.  There are so many pouches, wafers, etc. as to boggle ones mind.  Imagine using one systme for 5-10-15 years, and then meeting a WOCN who says "try this" and things become so much easier!  Is that how we want to receive medical care?  Also, w/regards to the internet..it's a great resource, yes..however, I always am suspicious of people (who's job it is to help...this applies to my field of engineering as well) that say "well, go look it up on the internet...."  That's not the kind of service I give in engineering, and I do not expect it in any other field either...to me, it's a lame copout.....
 
To sum things up, I belive patient care after surgery, and prior to discharge, should include a complete stoma care session(s) with WOCN's that are aware of all products, and that provide the patient with ALL examples of things that can go wrong, and what can be used to prevent or cure them.....and, at least a list or real life examples of the most popular support products (eg, Eakin seals, stealth belt, etc.) that the patient can immediatley return home and look into.
 
I had planned on having my surgery at MAYO clinic in Jacksonville, however, due to the symptoms of UC finally getting the best of me (would not have happened if I'd had the surgery even just a year ago), I had the surgery in Orlando...as far as surgeons, I am happy with the one who performed my surgery in Orlando..would have been happy at MAYO as well...the difference I think is in the after surgery care and specific WOCN support that would have been given at MAYO..just my humble opinion.....
 
My home health care nurse have been great, but they are not WOCN's..they all work with people who have ostomies...but, I wonder when someone tells you "..we'll need to look in our bag of tricks.." if a problem comes up.....I'm not looking for tricks, just solutions....
 
Just my 2 cents.....hope all are well, or as well as can be.
enigma

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/20/2011 2:42 PM (GMT -6)   
Enigma - I understand and agree. You are somewhat left to fend for yourself to a certain degree.

At Mayo in Jacksonville I can't compliment the WOCN enough. From the very first meeting because we were so prepared prior to that appt. every thing explained to us computed overall as we were not hearing it for the first time. Every single day in the hospital after the surgery the nurse would come in and give us training, advice and I was able to take some good notes, observe and in his 8 day hospital stay there were 3 changes done to help us get the technique.

Upon discharge we stayed at the Inn for 4 more days. On Christmas day a nurse from Gentiva came out to assess/file the paperwork and the next day did a full change with us. She was an older woman and so very good at it and her advice. We came home and had 9 more visits from Gentiva. The nurses we had basically observed to be sure we knew what we were doing and pitched in if we were getting confused. They were knowledgeable but not certified WOCN either.

When we went back to Mayo 7 weeks after surgery we saw the surgeon and the WOCN. I have also called Mayo twice for questions. They are readily available and call back if you have to leave a message. It is almost a 3 hr drive away but should we need to go to see the WOCN they are available and the surgeon and his nurse told us they are there for us for anything we may need help with and just call them. However, It is an inconvenience for sure and between the booklets given to us by Mayo and the advice for our OJT on this forum and another forum it has helped us make it work.

I haven't checked if there is someone more conveniently located near us as we seem to have things under control. But you are right they seem to be in short supply and we are kind of left on our own to "figure it out" which is too bad especially if there are issues. I often wonder what some people do who can't get it under control.

The Hollister set up we got at the hospital was fine for 3 months until my husband's skin decided it didn't like the adhesive. We struggled for another month trying to make that appliance work with powder and different techniques as we were too nervous to go and change to something else. We took the advice of several people on these forums and found something that we "think" is now the right one. Time will tell.

It is too bad that it is kind of a trial and error process for so many for something so important.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/20/2011 6:00 PM (GMT -6)   
Here's a link to the WOC Nurses in the Melbourne FL area:

www.wocncenter.com/public/member_directory2.cfm

It is frustrating in the beginning...but remember, this is all new, and in my opinion, can be overwhelming. And, to be honest, I've learned SO MUCH from all the wonderful people that have passed through this board that I think it can make up for not having WOC Nurse(s) everywhere.

Hopefully, you can get an appointment closer to home, and find a wonderful resource at the same time. Good Luck!

EDIT: ok I just clicked on the link and it comes up with the page to put in the info...just go ahead and put in your city/state and it will come up...Melbourne FL had 4 nurses :-)
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 5/20/2011 7:15 PM (GMT -6)   
Yeah, we are usually left to our own devices. When I was in the hospital I received virtually no "training". The hospital sent a home care nurse. She did my temperature and BP and was gone. She knew nothing about ostomies. Told her not to come back. They sent another nurse. My wife was helping with changes at the time. This guy says "you change it and I will watch". He had no clue.  Told them not to send anybody else. We are in northern Michigan small town.  There are no ostomy nurses. We were on our own and still are. Trial and error. The nurses at Convatec were a lot of help. More than from the home care nurses. 3 1/2 years later and I am doing well. Trial and error..........
 
 
Dan

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 5/20/2011 8:56 PM (GMT -6)   
Polish Dan:

Amazing! Most people would have struggled with that. I know I would have. Luckily, central florida is the capital in USA of ostomies and WOCN's..so, even regular nurses see ostomy patients..luckily, again, the nurses that see me have patients in their 60's/70's who have ostomies and they are at least partly versed...of course, as I said, not 100% of what it should be....

Equestrian Mom: Thanks for the link...i will probably be talking to one of them next week.

Shaz032
Veteran Member


Date Joined Feb 2003
Total Posts : 1251
   Posted 5/21/2011 5:53 AM (GMT -6)   
I'm in Australia and I know I wasn't allowed home from hospital until I could do an entire change by myself (I was 10 years old - I was out of hospital about 2 weeks to the day after surgery) - the only time my parents have ever seen my stoma was at that time - I refused to let them help me after I got out of hospital, way too independent even at that age lol.

We also had 3 visits with the ostomy nurse BEFORE surgery, starting about a month before surgery, to familiarise ourselves (my parents and me) with ostomies and I got to wear a bag for 2 weeks before surgery so I could get the 'feel' for it.

Whenever I needed to see the ostomy nurse after surgery my parents just rang up and got an appointment the next day.

All of this was free of charge.

It's hard to believe the hoops my US friends have to jump through sometimes to get proper care :(
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/21/2011 7:08 AM (GMT -6)   
Wow Shaz Australia seems to have a much better handle on this. I'm sure our number of people are higher overall but so would be our resources...or at least should be.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 5/21/2011 11:35 AM (GMT -6)   
Shaz:
 
It always amazes me when our American politicians stand in front of a camera and say "America has the best medical system in the world..."  I don't think they, or anyone they know, has ever been sick.
 
Also, as you've seen on so many posts here, isn't it amazing how far people decide to travel to get the best medical care they've decided is available?  This is the Amercian healthcare system!
 
PolishDan:
 
I didn't mean to sound so "enthusiastic" in response to your post.  Even being in central Florida doesn't help that much (as noted by Another UC wife).  It is a shame that the only way to "contact" a WOCN is to call a manufacturer of ostomy supplies where there seems to be an ample supply of WOCN's, and do what they tell you over the phone....maybe having an ostomy isn't as serious as the medical community makes it?  Is that why there is so little WOCN support after surgery?  Just a thought.....
 
I assume if things got really bad with a stoma/stoma skin that a person would be put in the hospital..but, why should it have to come to that in order to get proper care?  What a waste of time and money...and, geez, I've had enough of the hospital!
 
There is a hospital in the town where I live...and, I've already discovered they have no WOCN's...which is amazing as this town has plenty of retired folks and retired folks who come in for the winter...I guess they go somewhere else for stoma care or wound care if they have any.....
 
Thanks to everyone again on this site who have helped each other out.....

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 5/22/2011 7:57 PM (GMT -6)   
enigmawrap
We spend february and march in cocoa beach. In 2008 just 3 months post surgery I was having a terrible time with open skin (ulcers)around my stoma. We went to a WOCN at the hospital in Melbourne. She said my stoma looked fine and put on a moldable wafer. It was no help at all. When we got back home I went to the surgeon. He said my stoma was prolapsed (too far out). No way to seal properly. Some WOCN's are good some are not. But at least you have some in Florida. That was the only time I ever saw a WOCN.

Dan

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 5/22/2011 9:13 PM (GMT -6)   
Dan,

Wow! I hope I don't see that WOCN....sorry you had to go through that...

by the way, how did you discover Friars?

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 5/25/2011 11:49 AM (GMT -6)   
NASACARRON.....
 
That's exactly what I've been thinking!  There needs to be a program set up for just that...telling people everything they need to know, esp. things that can go wrong and how to fix them..what to look for..how to fix things...when to realize the advice you've been getting needs to be changed due to changing circumstances, etc.
 
I will have to run that request through my local UOAA groups...we'll have to keep pursuing it!  yeah
 
Also, I feel the same way about leaking.....also, these product manufacturer's have to go through some kind of testing process, and I wonder what they do to make sure a product works as adverstised?  And, how much effort does a test person with an ostomy have to go through to make sure products a/b/c work together to make a good seal???  Lot's of stuff to find out....
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, July 18, 2018 12:19 AM (GMT -6)
There are a total of 2,982,646 posts in 327,032 threads.
View Active Threads


Who's Online
This forum has 161847 registered members. Please welcome our newest member, ChrisCross.
324 Guest(s), 3 Registered Member(s) are currently online.  Details
ezhoe, Michael_T, Bluecrab