I know that everyone read my posts about my upcoming possible amputation surgery

and the response was surely touching, both here and over at UC.  It will be one week from today, and it will be a fairly complex surgery for the repair of damage to my legs from Charcot Disease.  The operation will first try a new corrective approach, and my last hope for retention of my legs - I am in a study for surgical correction and this will be my 15th and 16th surgery.  Should the surgery fail, they will take my legs below the knees.  I am as prepared as anyone could possibly be and am lucky to have the greatest wife in the world to care for me - as she and I were recently remarried and re-exchanged our vows.  She wanted to do this as a sign of love and hope, and I am truly blessed to have her.  I doin't think I would be in a position to live, and would not choose to without her incredible ability to cheer me and spur me on.  You might also remember the stories of my mother in law whom she recently to off and told her not to come help - as she is a hindrance rather than a help.  She has been telling her to divorce me since my Ostomy and can be quite mean to me, alwasy spraying fabreeze when she comes to visit.

Hi Bob,
I hope your surgery is going to work out ok. How about calling the rehab center and the ortho ward and seeing about if they want training on dealing with a bag? Especially since you are a future patient and they can foster it as a continuing education credits? Plus I would wonder if you could make a training DVD for them? If all else fails.
Take Care,
Navy

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^{Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.}

Bob~sending love and hugs to you and your wife!!

Can you have a pouch with gravity drain be used during your high output period? They can divert the output to a larger 'container' to be emptied less often by someone else. You'd still have to have the appliance changed by someone, but you'd get some relief by not having to empty a small pouch more frequently.

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Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Bob, where on earth are you having this surgery that doesn't have nurses trained in ostomy care? It is utterly ridiculous that you would have to worry about this along with everything else!

I would like people on this website to start "outing" these hospitals and clinics that provide crappy care for IBD patients so we can all avoid them! This is how people end up with little or no intestines after several surgeries or draining wounds that never heal - they have complicated surgeries done at community hospitals where the doctors have little experience but egos too large to allow them to refer patients to teaching hospitals. This is how people end up on out-dated crohns drugs for years on end, even though the drugs have been proven to have little or no benefit.

It's time to demand better care people.

My hospital is pretty terrible with ostomy care. I did have difficult stomas to bag, but the nurses could never do it. Most of the time they would refuse to even help me because they were busy and mine took an exceptionally long time to bag. The ostomy nurse only works part time, so I usually had no assistance. If I was already leaking, I needed them to at least gather supplies for me so I could do it, but often, they wouldn't come in time and I would have to do it myself anyway

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27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Lomotil 1 Tsp. (4/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day), Gluten free diet

Good luck Bob...wishing you my best.

Tom

Good luck Bob...wishing you my best.

Tom

Good luck Bob...wishing you my best.

Believe it or not I am going into Geortetown University in Washington DC, one of the "finest" hospitals in the country with a magnet nursing program.  The problem is that now nursing is such a highly specialized field, that osteo nurses are not really trained in ostomy care.  I have heard their GI department is first rate, but there is a shockingly few number of nurses who even know the basics of ostomy care, no less the variants of products that exist out there.  The doctors are aware of the situation and have advised me to bring many more products than I would normally need - but it is an organizational problem, and an education problem.  Bowel movements are not the domain of nurses at these higher end hospitals and they have nursing assitants empty bed pans and the like-  these aids are sadly minimum wage, often immigrants with this being their first job in the country, and also have language barriers, and are also not taught anything other than bedpan cleaning, and urination. 

Elimination is not in the domain of the nursing staff, so anything that is out of the ordinary, is not understood and addressed.

I have been even trying to find nurses aids that you can hire to augment your nursing care at about 20-25 per hour, but I have been told now by several agencies that I would have to teach these assistants in the whole process. 

Not that bag elimmination or replacement is rocket science, but it is beyond some of the skill sets of staff that I have been forced to use in the past.

In Washington DC, the vast majority of nurses are coming in as immigrants from the Asian countries and Africa - Lord know I welcome them to our wonderful country...but the job is more than standard bedpan duty - and Georgetown, as well as Washington Hospital Center only has two WOC nurses full time in terms of staff, and it is their job to teach patients with new or problematic ostomies, not assist in patient daily care of elimination or appliance changes.

I do hope that I have made it clear that this is not an immigration issue - America should welcome all who want to better their lives - but this is a bit more difficult than their current job position and potential language skills. 

I appreciate all the kind suggestions and have consulted the patient advocacy area, and they confirm along with my doctor, that I have to play the major role in ostomy care while in a non GI related department, ward, or ortho center.

Otherwise the nurses at Georgetown are top notch, and I have zero complaints during 14 previous surgeries.  Washington Hospital Center is another story entirely with the surliest nurses I have ever experienced (except in their oncology department where I was given Remicade for UC, they were exceptional and compassionate).  Of course, this is a personal opinion, I am sure others have diffferent views on WHC in DC.  But I do prefer Georgetown, again personally.

So, it is up to me, my wife, and a paid assitant for when my wife is not there - and we will try to teach him or her.

Love to all here

 

bob