Less than optimum ulcer treatment

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pdxvettony
Posts: 5
Joined: 2015-06-28 14:07:29

Less than optimum ulcer treatment

Post by pdxvettony »

I am an ileostomy patient at the Portland Oregon VA Hospital. We only have one full-time WOC nurse, one in training, and have no ostomy support group. (Robert McDonald, VA secretary, has stated that there are 28,000 staff vacancies throughout the VA healthcare system. No surprise here!)

I recently suffered less than optimum care, for a sudden onset peristomal ulcer, in the emergency department. Reason: No WOC-trained clinician was available. (Sudden onset ulcer because I abruptly felt wetness all over my shorts and abdomen. There had been no sign of problems during my previous pouch change the day before.)

Last month, I presented at the VA ED with a Stage III peristomal ulcer (secondary to a peristomal hernia), 1 cm inferior to my stoma. But no one knew what to do! Not even palliative care was offered. Absolutely clueless staff!

The doctor said to "put a gauze over it and let it air out." (But the wound was directly under the stoma bag flange!) Also, the wound was not charted, was not photographed, nor was it cultured, etc. Thus, no baseline was established, nor provisions made for possible antibiotic therapy. I was not even offered a hydrocolloid dressing – which were available in the adjoining WOC nurse's office! I went home with a leaky stoma bag and exudate-soaked gauze taped to my abdomen.

I hold a BS in Biology, concentration in Health Science. Also, I was an Air Force medic for 9 years. Therefore, I knew incompetence was afoot! It was 12 days before I could consult with a VA clinician. So, I could not obtain professional advice nor any relevant ostomy supplies during this time.

Meanwhile, I conducted my own, in-depth, stoma-related literature research. I watched various relevant YouTube videos, downloaded ostomy care pdf's, and procured relevant ostomy and ulcer curative material at my own expense. I read the instructions, learned what to do and applied the materials to my wound site. While I learned what to do, I had to make my own stoma bags to minimize leakage and skin trauma. All this time, I hoped the ulcer would not get infected nor progress to a fistula or a systemic infection. (Stool had contaminated the ulcer.) I was home-bound for 2 weeks with much diminished quality-of-life.

The total cost of purchasing my own supplies is $1000 and counting. I spent on next-day FedEx delivery, and these supplies are costly! I also bought pre-need supplies, because I know, from actually treating patients, that ulcers take a long time to heal and can recur. It took 30 days, and a strongly worded, highly detailed letter to my US representative, before I received what I needed from the VA. I now keep a daily log of my home ulcer care, and also log every VA appointment I keep.

Because the biggest problem an ostomate faces (and can address by himself / herself) is a sudden ulcer, you should at least have on-hand the following: 1) A very soft and pliable stoma pouch such as Coloplast Mio 1-piece pouch #10471; 2) Coloplast Comfeel Plus Hydrocolloid Dressing #3110 or 3213; 3) 3M Tegaderm Foam, 4x24 roll, #90605; 4) Medline Suresite Window transparent dressing #MSC2304; 5) Smith and Nephew Iodosorb Gel #66021240, 10 grams.

Then, watch YouTube videos on how to use these materials. Basically, #5 is applied directly on to the ulcer wound, in order to manage the bioload. Then, the ulcer is covered by a combination of either #1 and #2 – or – #3 and #4, depending on: 1) proximity of the ulcer to the stoma, and 2) the amount of exudate flow from the ulcer. The soft stoma pouch then covers the entire dressing. Lightly paste the stoma pouch to your peristomal skin, because you will likely have to change the pouch and ulcer dressing every 24 to 48 hours. The frequency of dressing change depends on the amount of exudate flow from the ulcer, as the liquid undermines the adhesive power of the stoma pouch.

You can also ask for free samples of ostomy supplies from companies such as Hollister, Coloplast, Convatec, Marlen, Torbot, Dansac and Cymed. Then, wait 2 weeks or so, and order again, if they will let you. Also, visit the following website and download pdf files on ostomy care: http://www.ostomyland.com. Then, choose: Articles, Editorials, #3 Building an Ostomy Reference Library.

No veteran should be sent home with a 4x4 gauze taped under their stoma bag flange, stool leaking out, because no VA clinician knows what to do. Remember your military training: do your homework, prepare for emergencies, incompetence and lag time...Cheers!
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Jimbob
Posts: 3583
Joined: 2007-06-18 17:40:16

Re: Less than optimum ulcer treatment

Post by Jimbob »

What a horror story.

Check this link maybe the Portland, Oregon Support Group is near you.

http://www.ostomy.org/popup/201.html
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Mike ET
Posts: 634
Joined: 2008-10-23 06:23:43

Re: Less than optimum ulcer treatment

Post by Mike ET »

Hello, pdxvettony.

Can you share with us a little more ostomy related health history? Specifically, the underlying diagnosis for the ileostomy. How long have you had the ileostomy, and is it permanent?

Your overall bodily physique and weight status. Are you underweight or obese or in between?

You noted a stage III peristomal ulcer secondary to a parastomal hernia. Is this your diagnosis? Can you share why or how the hernia arose and what strategies have been recommended for eventual solution to the hernia? If the ulcer is secondary to the hernial bulge, are you aware that the stretched out skin overlaying the hernia will continue to be at risk for recurrent thinning and breakdown?

Have you taken any of your own photos of the stoma site?

Mike ET
ostomy can present an identity crisis of image and function, and require tradeoffs.
pdxvettony
Posts: 5
Joined: 2015-06-28 14:07:29

Re: Less than optimum ulcer treatment

Post by pdxvettony »

jimbob, Called & left a message. No reply.

Mike ET, I've had my ileostomy for 31 years, due to ulcerative colitis.I diagnosed the ulcer and the clinicians later concurred. 5 ft. 10 in. 209 lbs. Otherwise healthy, but 25 lbs. overweight. My physical activity has declined. The peristomal ulcer is secondary to peristomal hernia. Yes, I do know the ulcer may / will recur. Because of this, I have invested in an extensive pre-need supply of ostomy and ulcer curative supplies. Photos, yes, but taken only beginning 7 days after presentation.
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Mike ET
Posts: 634
Joined: 2008-10-23 06:23:43

Re: Less than optimum ulcer treatment

Post by Mike ET »

pdxvettony,

Thanks for the helpful additional information.

Given your long stoma history, underlying diagnosis, parastomal hernia and site issues, have you entertained any surgical repair such as stoma revision and relocation options?

I offer this question since the hernia is not likely to "disappear" on its own, as I am sure you are well aware, and the recurring skin threats and more serious tissue breakdown, or hernial strangulation, may well lead to worsening conditions and lifestyle impingement.

Mike ET
ostomy can present an identity crisis of image and function, and require tradeoffs.
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