Colostomy Leaking Since Surgery - 8 Days

[Lee]

I am not an ostomate myself, but have been very involved in both my husband's ostomy surgeries and care... my understanding is, if the seal is not leaking, it can stay on, it does NOT need to be changed. Can someone with an ostomy comment on whether that is accurate?

Because if it is, your mom should be able to tell the hospital nurse DON'T REMOVE IT once the ostomy nurse gets it fixed!

Agree, if the ON gets it on again, Nurses are not to touch it. This is unbelieveable. Shocking

Yes, During the winter months, I can keep a wafer on for a week without problem. During the summer months (Arizona), I change my wafer every 4-5 days.

Lee

[MissMolly]

Agree with the other comments . . . an ostomy wafer need not be changed with the frequency that the wafer is being removed by the nurses involved with your mother's care.

With a drainable pouch, the intent is that the feces/output will be drained from the pouch while keeping the wafer intact and on the skin.

Most people with a stoma will keep a wafer on for about 3 days between successive changes. Individuals will vary with their wear time, but most will keep a wafer on for 3-4 days before changing.

With each wafer change, the top layer of the skin is removed. Too frequent changing of a wafer can lead to skin breakdown by traumatizing the both the dermal and epidermal.

Unless a wafer is leaking, it is meant to remain on the skin for about 3 days when using a drainable pouch.

When removing a wafer, technique is important. Do not pull the wafer away from the skin. Rather, push the wafer away from the skin. Using the tips of the index and middle fingers, push into the skin adjacent to the rim of the ostomy wafer with the fingertips. Continue to work your way toward the middle of the ostomy wafer, pushing into the skin with the fingertips, pushing the skin away from the wafer.

There are two grades of ostomy wafers. A basic wafer, meant for mushy to semi-solid output is called a "somahesive" wafer. An extra-durable wafer, meant for thick-liquid to thin-liquid output is called a "durahesive" wafer. A durahesive wafer is intended to be used with an ileosotomy or colostomy with fairly corrosive output. The wafer has superior durability to erosion from causative digestive enzymes. Your mother will do best with the stronger durahesive wafer option.

Allowing the skin to be open to the air after removing/changing a wafer is helpful. I routinely allow my skin to be open to the skin for 30-60 minutes on the days that I change my wafer. To contain any stoma output, I merely keep a few paper towels on hand or use a disposable "chux" pad or puppy pad and keep it nearby and handy.

By all means, be using the either the Marathon Liquid Skin Protectant or Cavilon Liquid Skin Protectant. Those of us with permanent ileostomies (and fecal output that is high in digestive enzymes) consider Cavilon a staple item and use it with each wafer change. It provides a thin, protective coating to the skin to safe-guard against skin damage and aides in healing of skin that is irritated, open, or weepy.

I am wondering if the nursing staff positioned the pouches horizontally because your mother is short/petite in height or short in length in her toro length.

If so, be aware that you are not limited to pouches that are 12" in length. Pouches come in a variety of sizes and lengths. I am 5' 2" tall and about 85 pounds. A pouch 12" in length practically falls to my knees. I use a Coloplast Mio pouch that is 6" in length, just perfect for my size and frame. The CyMed pouch that I use is 5" in length. The learning: You mother is not limited to a 12" pouch that may be excessive in size relative to her body/frame. Pouches come in lengths from 12" to 10" to 8" to 6" to 5" and even to 4". Pediatric wafers and pouches can also be used by adults. I often prefer the pediatric sized wafers/pouches. Given your mother's recessed stoma and tissue folds, a pediatric wafer and pouch might be an option to explore and try.

I think once you get a few established visits with your newly sourced ostomy nurses that the pieces of the puzzle will fall into place.

Look for this ostomy nurse to help your mother identify an ostomy system (ex. wafer + pouches) and accessory products (ex. ostomy belt, Cavilon Skin Protectant, Eakin Cohesive Seal, Torbot Skin Adhesive) and skin care routine (ex. identify appropriate brands of soap, outline daily paristomal skin care routine) will be established.

There is a smooth horizon in your/your mother's future,
- karen -

[Sams wife]

They would have already kicked my husband out. He would have cussed them up & down.

Will she be able to tell them don't touch it? I hope she can after this. Put a note on computer if you have to leave. Tell them if they mess it up they can pay for ON to come back. Idk. Hopefully your mom can just tell them "hell no!" Make the head nurse put a note up front too. "Do not touch!!"

[Lee]

Hope your Mom was able to see that Ostomy nurse (for the 2nd time) and is once again leak free. I hope there are some orders from that Ostomy Nurse to the other nursing staff, HANDS OFF .

Hopefully in 48 hrs and less, your mom will be back home. What she has had to endure at that hospital is one for the books. Shocking.

Again (((HUGS))) to you and your mom

Lee

[Snowy885]

So, I just called to speak to my mom and her new morning nurse answered and said they are just changing her ostomy bag. So ... don't know what happened this time but once again, the ON came last night and now it's off. I am assuming my mom would NOT have let them touch it unless it was actually really leaking this time, but I'm so upset. I thought she would at least get some more time out of this one, but no. Her poor skin is never going to heal.

[MissMolly]

Snowy:
Your mother's situation is surreal. And the situation and care at the hospital seems to be worsening with time . . at best, status quo.

I think your better option is to go home and to have home health services.

You can always opt to have no ostomy appliance on. Use disposable "chux" pads or flat baby diapers. Remove with each soiling. This would not be a long-term option but a short-term option for a few days.

Each time an ostomy wafer is removed, especially if the wafer if pulled off of the skin (as opposed to pushed away from the skin with the finger tips, as I described in an earlier post), the epidermis is traumatized and the new granulation tissue is displaced. Healing is delayed and the skin integrity is re-injured.

Even with your new ostomy nurse in place, I would call and obtain samples of the Coloplast Mio and CyMed MicroSkin. One-piece options. Ask for one of the shorter length pouches, 5-6 inches.

One of the limitations of ostomy nurses, is that they are not aware of all of the different ostomy product options. There are so many product options available - literally hundreds of permutations - that ostomy nurses, too, can be limited in their knowledge. As with this forum, the best source for knowledge of ostomy supplies and techniques is often the individuals, themselves, with permanent ostomies. Come on over to the UOAA forum and pose your questions and concerns and seek opinions for other individuals with ileostomies.

Another thought to bring you and your mother hope . . .

Liquid feces/output is most difficult to contain and pouch with an individual is supine/lying down. The hours of sleep, for instance, is when period of the day when a leak has the highest probability of occurrence. Why? The liquid feces/output tends to migrate around the stoma and stomal cut-out in the wafer when one is supine/lying down. This is due to the positioning of the body in space.

In upright and standing, gravity has the benefit of encouraging liquid feces/output to migrate down into the pouch. The propensity for leaks is markedly less when someone is in active recovery mode following ostomy surgery and up with more frequency.

Bottom Line: Your mother, fingers and toes crossed, will experience less leaks when she is up and walking with more regularity.

At home, too, your mother can begin to take self-control for her skin and ostomy care. I sense that the constant interference of the nursing staff - disrupting the wafer when it may not need to be removed and changed - may be contributing to your mother's woes.

In all of my history of being an individual with an ostomy and participating on the UOAA forum - a support and educational forum where new ostomates bring the mis-greviences and mis-steps of their particular hospital stay and care to the forefront in their initial postings - I have never heard a story comparing to your mother's.

From the surgeon, to the hospital's patient advocate and administration, to the nursing staff - your mother's care has been inept and lacking of the most basic of knowledge of ostomy care and of the wide range of ostomy products available.

Nu-Hope makes a wafer-less ostomy pouching system. You can explore the Nu-Hope waferless system as a temporary, gap measure.

Explore the use of DuoDerm and/or TegaDerm as an adaptic dressing placed directly on the excoriated and weepy skin. Adaptic dressings allow for air-exchange while containing weepy discharge. Ostomy wafers can then be effectively applied to the DuoDerma or TegaDerm without further damage to the underlying and irritated skin. I have had to use this technique myself and it is quite effective.

Continue to use the Marathon®, unless the ostomy nurse is advising the use of silver nitrate cream and/or a sea-weed based agaline dressing. Sea-weed agaline wound care dressings are a great tool if the wound bed is deep or narrow. With each dressing change, the wound is effectively debrieded of dead fighter immune cells and waste debris. Granulation tissue is enhanced.

Leaving the affected skin open to the air for a period of time(s) each day will be helpful. No ostomy wafer in place. Use disposable "chux" pads or flat baby diapers or puppy pads to wipe away any output/feces in the moment.

If the skin and wound are persistently delayed in healing, you can also search out available out-patient hyperbaric oxygen treatment facilities. Hyperbaric oxygen allows for an oxygen rich environment under pressure. Oxygen is effectively "pushed" into soft tissue, facilitating granulations tissue in cases of ulcerations and skin wounds due to diabetes/vascular insufficiency.

I am dumbfounded as to why you have received so little proactive response from the hospital's administration and/or patient advocacy. It makes little sense as to why the hospital's administration has not come to your aide.

If you mother's primary insurance is Medicare, the hospital is reimbursed a fixed fee based on the ICD code assigned to her admitting diagnosis (colon obstruction necessitating a laproscopic resection with temporary ostomy). No matter the co-existing diagnosis that may accompany the primary ICD code assigned, the hospital receives a one-time, fixed fee.

Any situation where a patient is discharged and re-admitted within 30 days, the hospital is assigned a fine by Medicare. The fine for a subsequent re-admission can be substantial.

It behooves all hospitals to have engaged and comprehensive discharge planning and nurse care navigators that follow-up with patients in the days immediately following discharge. To track and monitor patients and their well-being and intervene early if individuals are struggling after discharge.

The hospital is not receiving any income from your mother's second admission. Each day is a financial loss for the hospital on its balance sheets. I would think that there is pressure on the surgeon, from the hospital administration, to identify and correct the failures in your mother's care plan . . . but this is not happening, as gleamed from your writings and ongoing frustrations in witnessing your mother's care. I shake my head, side to side. It makes little sense. I have worked, professionally, as a external consultant and trouble-shooter for hospitals and ancillary health care settings. There is a culture of accepting mediocrity at this hospital which would not pass even the lowest of JCAHO regulations.

I would not continue for another day under the care of the initial surgeon . . nor of the hospital. You and your mother have experienced continued and repeated episodes of inept and inadequate and inappropriate care.

If you are legally inclined, you can file a formal complaint with your state's hospital regulatory agency (JCAHO), with your Medicare intermediary, and with your state's physician licensing commission.

If you decide to return to a nursing care facility, I would have an ombudsman follow and monitor your mother's care from day one. Personally, I would forgo any nursing care facility and discharge directly to home with support of family and visiting home health services. Home is where true healing begins.

Obtain an ostomy supply catalog from one of the major ostomy supply companies - Byram Healthcare, EdgePark Health Care, Sterling HealthCare, McKesson Health Care. It is eye-opening and informative to have a paperbound ostomy catalogue to look at and browse. You will come to learn of the wide array of accessory items available - items that effectively troubleshoot annoying ostomy issues. Build a small supply of accessory items to have available at the ready if an unexpected ostomy problems appears. Ex. fungal skin infection, minor skin irritation, loosening of a wafer's outer rim, skin cleaners and skimp protectants.

I have fragile health, a life's trajectory that I never foresaw as my own life's path. In my many years of medical "care," I have received more inept care than excellent care. The climate of medicine is becoming less personalized and less tailored to each person's unique needs. My words of advice to you come from my own efforts at having to be more involved in my care and more strongly advocating for my needs. I do not accept at face value any MDs opinion. There is much that medical science does not know.

My advice to your mother is to learn to listen to her body and trust what her body is telling her. If we are quiet and listen attentively, our body will express to us what it needs.

I invite your mother to come to the United Ostomy Association of America discussion forum. Members will share with her technique for parastoma skin care and offer end-user advice on wafers, pouches, and ostomy products. I do not think that there is any ostomy situation that the members are not able to effectively trouble-shoot. Heck, the members of the UOAA live with ostomies in residence on their abdomen 24-7. Some of the members have had a stoma and ostomy for over 35 years.

http://www.uoaa.org

Your mother will find liberation as she begins to take care of her own skin and ostomy pouching. There is life with an ostomy.

Keep plugging away, as best as you can. I would like at your mother's discharge from the hospital as a "Finish Line" of a long and exhausting marathon run. A sense of relief that the ordeal is over.

Sending a gentle prayer and blessing,
- Karen -

If you and your mom observe her stoma, likely there are periods in the day where the stoma is non active and quiet, where it is not putting out output. These are ideal times to have the wafer off and the skin open to the air.

[Snowy885]

Hi, everyone. So upset. Apparently, my mom's bag started leaking last night after the ON did it. I really think it's because at this point, the skin is too raw that nothing will work. So the nurses did it again. Then this morning at 7, the stool was too hard trying to pass through the hole but couldn't. Then apparently liquid burst through and the bag exploded all over her, down her leg, etc. Sorry for the graphics.

So our surgeon is off for the weekend so I told the case worker when she came up that I'm done and I want her released today or transfered. I explained everything and she said we have the option of firing our surgeon and she can be transferred if there is a higher level of care at another hospital that this hospital cannot provide. I explained this hospital cannot provide the care, and she even seemed to agree. She also said we need another physician at another hospital to be willing to take her on as a patient before they will do the transfer. She said she would get working on it.

Then another doctor comes in and tells us she cannot be transferred unless we know a doctor, a friend, that would be willing to take her on. Well, we don't know any doctors. We did speak up and tell everyone that we are not on the same page with our surgeon, he's saying things look great and they don't, and I'm over it. She said even if we go home and try to find a new surgeon, nobody is going to take her on as a patient. I think they're trying to scare her into not going to someone else, but what if they are right?

And Karen, I'm shocked about the Medicare readmission policy. I would think that if they are not being paid for this past week that they would want her out of here then, but now they're saying she may not even be released Monday if the leaking is all over her still.

Oh, and the nurse found a bed sore on her today or last night. It hasn't actually split yet, but it's there. This just keeps getting worse and worse

[aja1121]

I did an Internet search about hospital transfers and didn't find anything definitive. I did see several anecdotes where people in your mom's situation left a bad hospital situation against medical advice and went directly (by their own car) to the ER of a better facility.

[Pita]

(((Snowy))) I'm so sorry, haven't been here for a few days and am shocked to see that this misery for you and your Mom is still going on
Many hugs and more prayers to you and your Mother. oxo

[MissMolly]

Snowy:
Your and your mother's situation is truly a nightmare.

That your mother was discharged and re-admitted within 30 days means that the hospital will be levied a heavy fine by Medicare. Medicare has imposed strict penalties to hospitals for failing to adequately address discharge planning and discharge care that results in a readmission - such as in your mother's unfortunate situation.

Had your mother received the basic services of an ostomy nurse, and a proper fitting ostomy appliance identified and provided along with education on skin and ostomy care, the unfortunate sequel that your mother is experiencing many not have materialized. I find fault in the hospital in failing to provide a WOCN (wound and ostomy care nurse) to your mother in a timely manner post operative.

It is true that not all hospitals have on-staff WOCNs. Smaller, community-based hospitals do not generally have the surgical volume to warrant an in-house or employee staff WOCN(s). Smaller hospitals generally contract for WOCNs on an as needed basis or are part of a hospital network that shuffles WOCNs from site to site when needed, as needed.

That your mother presented with a recessed stoma post operatively should have been a red flag that services of an WOCN would be required. While a recessed stoma is not an impossible stoma to pouch, a recessed stoma is a difficult stoma to pouch.
A deeply recessed stoma + your mother's particular abdominal topography and tissue folds due to added weight was a clear indication that the specialized services of a WOCN would be medically necessary. Clearly, the hospital failed to act within a reasonable period of time to resource a WOCN to evaluate and initiate an ongoing relationship with your mother.

The surgeon is also equally culpable. His ineptitude is clear and egregious. While it may be that he was surgically limited in being able to free available bowel to produce a stoma of sufficient length, his lack of leadership to initiate a written order for a WOCN consultation is an overt failure in his obligation as both the attending and ordering physician responsible for your mother's care.

I would not be surprised if the either or both of the hospital's senior administration and medical staff committee were to initiate sanctions against the surgeon.

What to do ?

I would vault up the chain of command and demand that the Chief Operations Officer (COO) meet with you and your mother, today. Pronto. Post Haste. No further delay. Being a weekend is no excuse. The COO wears a pager and is available 24-7. I know. I was a former COO of a medium-sized large-city hospital/rehabilitation unit.

The Chief Operations Officer is responsible for day-to-day operations and management of the hospital entity at large. Do not agree to speak to anyone other than the COO. Anyone working under the COO or acting on the COO's directive is not acceptable.

You may want to contact an attorney and have an attorney present with you at any/all meetings with the hospital representatives. The hospitals lack of responsiveness to date is not encouraging. The hospital continues to present to you lower-level nurses and employees who do not have sufficient decision-making authority to make things happen.

There is no reason that ostomy supplies are not available for your mother. Next-day air shipping has been at the hospital's disposal for over a week. And the hospital, obviously, has daily deliveries of needs and supplies with a vast network of contracting health supply companies at its disposal.

Goodness, even I could have called the 1-800 numbers of he major ostomy manufacturers or gone on-line to the associated home web pages and had a variety of supplies made available to you within 24-36 hours.

Continuing to change/remove the ostomy wafers, as has been directed by the nursing staff, has made your mother's irritated skin even worse. Each change has disrupted the sprouting new granulation tissue and epidermal layer. A better strategy would have been to not even use ostomy wafers and pouches . . . opting instead to use thick post-operative abdominal dressings or flat pediatric diapers or disposable chux pads to catch and contain fecal output and then replacing immediately with a fresh replacement, with focus on keeping the skin as clean and dry as feasible.

All hospitals have skin protecting sprays and wipes. These are used for individuals who are incontinent. Why weren't these basic products resourced in the early days of your mother's stay and used until more specialized skin protectant could be sourced?

By more specialized skin protectants, I am referring to the 3-M Cavilon Liquid Skin Protectant and the Marathon Liquid Skin Protectant that I have referenced previously. Protecting skin from pressure sores and ulceration is not rocket science. The hospital has the basic tools and mind-set at its availing. Why basic skin care was neglected from your mother is an unanswered questions.

You can fire the attending surgeon. I would do so.

The hospital could then assign one of their staff hospitalists as your mother's attending physician.

Or, you can discharge from the hospital and either: 1. Go home and have your primary care MD coordinate for home health services and any needed DME; 2. Go to another hospital's ER and gain a new physician and/or surgeon through the new hospital's ER triage.

The new hospital, however, is placed in a difficult predicament. The new hospital is assuming a chain of care that has been lacking and incomplete. It is like a caterer assuming a dinner party half-way through.

A new surgeon will likely have your mother sign a waiver, of sorts, that will shield him/her from any assignment of blame or responsibility for the stoma and skin situation of your mother that he/she as a surgeon is being handed. The surgeon will likely want to take photographs of your mother's stoma and surrounding paristomal skin - as a sort of pictorial accounting of the situation when placed in his/her care. Do not be afraid if some sort of photographic narrative to chronicle the current condition of the stoma and skin is requested by a new MD or surgeon.

That your mother is showing early signs of a pressure sore is reason to suspect that she is spending too much time in bed. For her own well-being, your mother needs to begin to mobilize herself. Getting up and sitting in a chair. Getting up and walking short distances, frequently though out the day. Is there any reason (other than the leaking stoma) that you mother cannot get up and move and walk a bit more? Is she too weak due to prolonged inactivity to get up on her own or with your daughterly assistance?

Well . . . I have written a book. The injustice of this situation is simply appalling to me. It is important to begin to take measured steps and measured actions to get your mother's health care on a better track.

Best wishes,
- karen -

[Snowy885]

Hi, all.

Karen, no, she is able to walk a little bit with a walker. The only reason she has not been lately is because every time she stands up, leakage begins. She knows the leakage leads to the wafer change and excruciating pain. There is a physical therapist that has been coming up, but due to the leakage, my mother has sent the PT away the last few days. Even when I mentioned it to the on-call doctor today that she has a bed sore, it's like it goes in one ear and out the other. She assumed the nurses put cream on it. When I told them they didn't do anything to it, she said she would have them do it. No nurse ever came to do it. I finally asked one of the aides that has been very sweet the whole time, and she found a barrier cream that she put on it. But the neglect has really gotten to me. They said the skin is not actually split yet, but that there is a visible pressure sore there. So if anyone has any recommendations to treat it, I could use the help.

So the ON came back yesterday, changed the bag again. My mom said it started leaking last night. We think it's because the skin is just too raw at this point. The ER doctor told us last Saturday that NOTHING was going to work until the skin healed some. I know the ON had the bag on to where it was not leaking the day before, but then there were I think 6 or 7 bag changes in between her two visits, and I think the skin is just too bad. So then the nurse changed that bag last night or sometime in the middle of the night, and then at 7 a.m. or so, the bag exploded all over her. So when I got to the hospital, a case worker came up. I told her I wanted a transfer to another hospital. She seemed to be on my side, told me that is possible. She said what we need in order to do that is another hospital that has a higher level of care that this one cannot provide (which I personally feel has already been proven), and an accepting physician, meaning someone that has already agreed to treat her. She also said we have the option of firing our surgeon in lieu of someone else at this hospital. My feeling is doing that won't get us anywhere because they still don't have the supplies, it will still be the same nurses who cannot do the bag, etc. So the case worker said she would get looking into it. She came back in a while later and said there must be a miscommunication going on (obviously). She said she's hearing from the doctors that my mother is improving, and from us that she's deteriorating. I am not going to waste anyone's time on this board explaining the deterioration, as I know you all know it already. At that point, she basically told us she can't help us.

So then the on-call surgeon came in. We told her we wanted a transfer and what the case worker said about us being allowed a transfer and that we can fire our surgeon. This on-call surgeon told us, outright told us, that she already knew what the case worker told us (I guess they must have spoken) and she yelled at the case worker for telling us that, and that the case worker does not know everything. I mean, she yelled at this case worker for trying to help us and being honest with us about our options. It's unreal. So I called a hospital in the area that has an ostomy/wound center, and spoke with a social worker about the situation. She transferred me to the administrator of nursing (or something like that). The administrator was -- first of all -- appalled by the situation. But she told me that she needs this surgeon to release my mom to their care, and also that she did not think our insurance would cover a transfer. She basically told me if we could get the hospital to sign off on the release, she could try to help me. When I told the on-call surgeon about it, she told us absolutely no surgeon will take us on unless we have a friend for a surgeon. That's exactly what she said. So my mom is too scared now to leave. I feel like they are basically threatening her by telling her that she won't find someone else to take her on unless she's got friends in high places. I'm so upset at the way they talk to her, trying to scare her into staying with them. Then her surgeon must have found out because he actually called her hospital room and asked to speak with me (instead of my mom). He then proceeded to tell me how he will get us through this and that if the leaking does not stop this week, he is going to do the reversal surgery this week. She just had the colostomy surgery two weeks ago yesterday, and now he's talking about doing the reversal this week. A few days ago he moved it up to the middle of August, and the ON thought THAT was too soon. We, obviously, are not going to go through with it with him. She just wants to be released home at this point. He just told her last night she would be released Monday. Now today when I talked to him, he's saying absolutely not. We actually had a visiting nurse service set up for Tuesday, and now the surgeon is saying absolutely not, she's not going home Monday.

The fact they are keeping her in here is shocking to me given what MissMolly has told me to about Medicare. Karen, if I understood you correctly, I think you said the hospital is not making anything off of any of her stay after her readmission; is that correct? Does that mean we will not get the bill for it at all, from after the readmission, or does that just mean Medicare will deny it and we will be responsible? It does make me wonder why they are trying to keep her in here so long now if they are not making any money on it. I mean, obviously I know pouring fluid SHOULD be enough of a reason, but they knew that last week and still released her. And now she WANTS to go home and deal with this on our own, as we think we could be resourceful on our own. But we were told that if you check out AMA, insurance will not cover a readmission (I think that's what someone told me), and so that has scared her too. The whole thing is just so upsetting. We have mentioned trying to get a lawyer involved, but I work for lawyers (not here, but in SC, where I live), and I know that it's not like what you see on TV where they show up at your defense, making demands. At least, that's from my POV. The best I could probably get would be a phone call or a letter from one, you know? With that said, if anyone has any recommendations for any in the NY area, I will pass it on to mom. And, if anyone has any recommendations for a CR surgeon in NY or CT (since I apparently need to have a friend that is a surgeon to get one to look at her), please pass us that information also. As always, thanks so much to all of you


Edit: Karen, I forgot to add one thing regarding the skin spray. They were spraying some type of protective skin spray each time they did the bag change, but it has not helped or protected the skin. I did buy her the Marathon Liquid Protectant and brought it into the hospital, but the nurses went through one vial each time they did the bag change -- and doing the bag change 6, 7 + times a day, my mom told me to save what we had left for when she got home. So they did use some type of spray, but it just has not helped. And when the surgeon saw the Marathon box that I bought, his response was "it's just a stronger glue than what we use," couldn't care less.

[aja1121]

DO NOT let that surgeon touch your mother again! I know it's confusing, but it sounds like the hospital staff is trying to scare you into staying. Stop listening to their threats. If it were me, I would have the surgeon sign the release and drive mom to a better hospital immediately. Bedsores are just going to make recovery even longer. Your mom needs better care before she gets even sicker. The costs can he dealt with later. I am so sorry that you're going through this.

[Snowy885]

No, we're not. We just want her to get released so that we can go search for our own doctors. I thought of something yesterday, which was that maybe we could get her primary care doctor to refer her to a new surgeon, but then my mom said she doesn't think that will work because her PCM is affiliated with the hospital she is currently at. So ... I don't think she'll refer her elsewhere. I am upset though that I feel like we were being almost threatened by that on-call doctor saying unless we have a surgeon as a friend, NOBODY will take her on. I thought that was out of line for a surgeon to say to us. But ... nothing here surprises me now.

As a side thought, does anyone know if I can use that Marathon Liquid Skin Protectant on my mom's pressure sore/bed sore? It has not actually split yet, they just see the mark there. My mom said she's felt it for a few days starting. But because it's not split, I was wondering if I could apply that to protect it from splitting. Any thoughts?

[MissMolly]

Snowy:
Please do read through my more recent posts and PM messages to you. Read through them slowly and methodically. I've got ideas the suggestions that you can act on.

Under Medicare's tightened demands for quality care, for any Medicare beneficiary who is discharged from an acute care hospital and who is readmitted to the original hospital or secondary hospital through an ER within 30 days of discharge the initial hospital of record will be levied a fairly substantial monetary fine. In addition, the second hospitalization readmission will not be reimbursed.

That said, no . . . your mother will not be billed nor assigned financial responsibility for the second hospital stay.

The hospital will have to "write-off" the charges associated with the second hospital stay. Medicare will provide no reimbursement to the hospital. The line of thinking is valid. If the hospital (here speaking largely in include the surgeons, MDs, and hospital) was negligent in securing that the patient was successfully at the time of discharge in making a solid discharge plan, then the hospital should not be reimbursed for care associated with a failed discharge. The policy is meant to prevent hospitals making money by patients revolving through the door with multiple re-admissions. Of course, this policy too has its flaws. It fails to address individuals with seriously complicated health with multiple co-morbidities who are at risk fir readmission due to declining health. But the policy is a step in the right direction toward holding physicians and hospitals accountable for quality care on the initial hospitalization, quality care that is comprehensive and complete to ensure a safe and successful discharge to a home or to a lower level of care.

A problem that is becoming apparent in the thread and with the discussion of your mother's care is that nothing is changing. The status quo of inept care continues.

Despite some of my suggestions. Despite your discussion up the chain of command.

I am dumbfounded as to why the senior management of the hospital (Chief Operating Officer) is not now involved.

Senior management does receive a daily status report. It shows each patient, length of stay, insurance status, etc. It is a one-page summary of daily statistics.

Your mother is obviously showing as an outlier, an exception to the norm. Her on-going status is appearing as a flagged entry.

I have been a hospital COO. I am familiar with the daily statistical reports.

The hospital has every incentive to pay attention to your mother's case and care, in particular. It has every incentive to right her situation and to right her situation quickly. It has every incentive to mobilize every available resource to amend her care and to right the course direction of her care. It has every incentive to have a firm and frank discussion with the attending and ordering surgeon. I have no understanding as to why this isn't happening.

The hospital is receiving no cash flow for your mother's stay. None. And it is facing a hefty financial fine for her re-admission. None of this is your fault or your mother's fault. It is honestly no one person's fault or blame. It is a fault and blame on the hospitals inner workings and work culture that allows for mediocrity and errors or omission to continue unchecked and unabated.

You can, and should, make a demand to speak to the hospital COO. Immediately. The COO is available 24-7, he/she wears a beeper or similar to be available in case of a natural emergency or other. While your mother's case is not a natural catastrophe, it is a serious cascade of mis-steps and miscalculations and grossly poor care oversight that does call for immediate attention and an agreed upon plan of correction.

Your mother's situation is like a large barge that is moving on an ill-fated course of direction down a river. It takes a lot of planning and effort to change course of direction of a large barge (think of the naval carrier the USS Enterprise in size and scope) that is underway and sailing. But with a change of course direction, the barge will run collide with and run aground. The same can be said for your mother's care. There is needed a define change of course direction in the current plan of care. The status quo can no longer be tolerated.

I continue to write ideas and suggestions . . . and I do not hear you acting on them. Do you want to stop making suggestions?
Or is it that it is so difficult to know how and where to begin to bring about any change in the hospital and its staff?

You mother, leaking wafer or no leaking wafer, needs to make her own personal effort to be up and moving.

That she is developing a pressure sore cannot be the sole responsibility of the hospital staff and their oversight or negligence.

Your mother has the physical capability to stand up, move, sit in a chair. She has the physical capability to move and shift her position.

I know that she has a leaking wafer.

I have a permanent ileostomy. I have been in the hospital a lot since my original surgery 4 years ago. I have a serious, life-threatening endocrine dysfunction that has me in the hospital like a frequent flier of a commercial airline carrier. If my ileostomy is acting like a volcano, I place a towel or chux pad over my abdomen and up and off I go for a walk. I stand in my room, if I cannot venture out due to a tangle of IV lines, and look out the window or work on a jigsaw puzzle on a bedside table. But I am standing up and taking weight off of my butt and backside.

Your mother needs to take self-responsibility and some degree of momentum to get moving. If the stoma and ostomy are leaking, use a disposable chux pad and tape or hold it over the stoma and stand up and move about the room. You mother will continue to weaken, daily, if she sits in bed. A physical therapist visiting once or twice a day for 15-20 minutes is not sufficient to the cause. You mother, like everyone who is recovering from abdominal surgery, needs to self-initiate her own mobility - getting up in a chair, getting up in her room and standing, getting up and walking - even if it is walking to and from the door of her room.

I have had my stoma exploding like a volcano where I have stood in the shower stall of my hospital room. It seemed easier to stand in the shower and let it act like Mt. Vesuvius. You have to keep a sense of humor about a stoma and ostomy in order to keep your sanity. Humor will go a long way to keeping living with a stoma and its unpredictability doable.

Keep an ostomy wafer off of her mother's skin, for the short term. Use towels or pediatric flat diapers or disposable chux pads to contain output. Remove promptly and replace. Keep the skin clean and dry, as best as you can.

Use the Marathon on the excoriated skin. Marathon is designed to heal severely excoriated skin due to exposure to feces and urine. It is expensive at $60 for five 1 oz. vials but it is less expensive than a prolonged hospital stay.

To repeat . . . Marathon is not a "super glue" as your surgeon continues to say. It is a skin protectant that heals excoriated skin.

I listed the MedLine home page site as a good resource to read about Marathon Liquid Skin Protectant. There is an excellent Q & A section on the MedLine company's web-site on the use of Marathon. Go back to one of my earlier posts and source the Medline web address that I listed. It will answer any of your questions on Marathon and would be a good resource for any of the hospital staff on its indications and use.

I have also talked about the use of DuoDerm or TegaDerm as a possible adaptic wound care "bandage" for your mother's severely excoriated skin. DuoDerm allows for air-exchange while containing weepy serous fluid. Place a sheet of DuoDerm or TegaDerm on the affected skin. If need be, a wafer can then be placed on the DuoDerm - without further disruption of the granulation tissue bed. The DuoDerm should be changed every 24 hours while the wound is producing copious serous drainage. But removing the DuoDerm will not disrupt the new granulation tissue as is happening when the nurses remove an ostomy wafer each time.

Go back and review the technique that I posted on how to remove an ostomy wafer or any dressing on the wound. Do no pull the wafer or dressing away and off of the skin. You do not want to pull a wafer or dressing away. Pulling will traumatize the epithelial layer of the skin further. You want to push the ostomy wafer or dressing away from the skin. Push with the tips of the finger tips. Push the skin in with the fingertips, pushing in the skin adjacent to the wafer and the wafer will separate gently from the skin.

Fire the surgeon. Yes, fire the surgeon. How can you even begin to think of having him re-enter your mother's abdomen with his flagrant lack of knowledge of ostomy supplies and lack of even a recessed stoma and lack of foresight in ordering a consultation with a WOCN?

If the surgeon is a part of a larger surgical group or practice (which he likely is), you can ask to speak to the office manager of the practice and demand (not ask) that the practice assign your mother a new surgeon out of the member of the practice. You can demand that you be allowed to participate in the selection of the new surgeon. That you want to review the "resume" of each physician and their speciality of practice, any filed reports of patient complaints, any corrective discipline on record.

I had the occasion of being in the hospital for a small bowel obstruction. The attending surgeon adopted a watch and wait approach with a NG tube. 72 hours passed and I was truly suffering. The surgical resident stuck her neck out on my behalf and expressed to my parents that the surgeon was negligent in continuing with an NG tube beyond 72 hours due to risk of incarcerated bowel. The hospital administrator was called. The original surgeon was summarily fired and the trauma surgeon who attended to my initial perforation surgery was assigned to the case. I was in surgery within 2 hours. Good thing, as the segment of intestine was trapped in scar tissue and was in the initial stage of necrosis. The original surgeon was cited for negligence, reprimanded by the medical staff, and was placed on probation for one year.

You can fire the surgeon and, pending the naming of a new surgeon, have the hospital assign a staff hospitalist as your mother's attending physician.

You can discharge AMA and go to another hospital ER and be admitted through another hospital ER.

You can go home and have home health nursing and physical therapy and WOCN. You can call the 1-800 of Coloplast and CyMed and ask for samples to be mailed next day air. They will be generous with samples, 10 or more wafers and pouches. The ostomy manufacturer companies are generous with samples because they want to "win over" new ostomy patients . . . it is a steady steam of income over years/lifetime for someone with a permanent ostomy for an ostomy manufacturer company.

You can call Nu-Hope and try the waferless ostomy system.

You can purchase more Marathon® or, at a minimum, start using the 3-M Cavilon Liquid Skin Prepration. it is readily available and is the same as Marathon (same ingredients) but at a lower strength. Cavilon and Marathon are skin protectants that also heal highly irritated and broken skin. Your surgeon is incorrect . . . Marathon is not a "super glue." I am troubled by the surgeon's continued ignorance.

I have deep reservations about an intestinal reversal after just 3-4 weeks. If you mother's intestinal integrity was fragile enough that the surgeon was compelled to make a temporary intestinal diversion + stoma and ostomy, I have grave reservations that there has been adequate time for full healing of the tissue deficit or frailty. If the reversal anastomosis fails, your mother risks systemic septicemia and possible death. I would not proceed with a reversal merely to quell the leaking problems of the deeply recessed stoma at this early date.

Research for a qualified and board-certified colon-rectal surgeon in your immediate area. Another poster on this thread has already graciously provided you with information to proceed on locating a board-certified colon-rectal surgeon.

The UOAA web site also offers assistance on locating board-certified colon-rectal surgeon and certified WOCNs.

Bottom Line: Even with it is a limited to series of small changes, it is imperative that some measure of active change to implemented in your mother's plan of care. Continuation of the status quo and circling and recycling the same issues cannot continue.

Speak directly to the hospital's COO. Ask him, point blank: "What are you going to do, now and in this moment, to right my mother's situation?" Demand that he outline in writing clearly defined corrective steps and actions. Do not tolerate some vague, "we'll order some ostomy supplies in the morning." Clear, specific steps and actions. Each step and action bullet-pointed and defined with specifically named people accountable and due dates identified for each action/step.

Or discharge and leave . . . to home . . . or to another hospital ER.

Your mother's situation is deteriorating with each day. It is unconscionable to me. But it does happen.

The clock is ticking. Ticking.

Do the best that you can to hold the hospital accountable for a measure of defined progress forward - whether it is this hospital, or another hospital, or in your mother's home with home health services.

I think that this is all that I can offer in my own thinking from afar.
- Karen -

[tarheelmom]

Is there a state hospital nearby? SUNY Albany Medical Center? I think some state hospitals have a mandate to accept any patient through the ER. No state resident can be turned away or shipped to another hospital unless it's for a higher level if care. Sorry you are dealing with this but I think it's imperative to get your mother to a different facility even if you drive her yourself. Are there other family members or friends helping you?