Alternate Cause of Pressure Sores

[lynnifer]

I'm recently battling some wounds on each side of my arse .. progressively they went from scratches/blisters to all-out bleeding wounds. Most of the reason is from leaking from the bladder right around the foley, especially when laying prone. My wound care doc and my urologist are both aware.

Plan of attack is trying Fampyra (4-ap) and if that doesn't work, botox. Can always try a bladder sling. If that doesn't work ... well the urologist said something about tubes connected to my ureters bypassing my bladder altogether (I wasn't really listening as I tuned out after the mention of more surgery).

I see a nurse every other week and we got on to the subject of pressure sores. I've not had even one year free from any kind of skin eruption since the paralysis first appeared at age 12. It makes it difficult to lead any kind of happy life. He asked me why I thought this was and uttered something about trials way back when and a myriad of proteins found in some paralytics but not others. Also had a psychologist that I really looked up to who also felt it was something 'not discovered yet' in the blood.

The nurse spoke up and said he read an article in Time Magazine about cytokines and how they thrive in the blood of people from the Middle East. If I didn't like him so much and respect his knowledge as a nurse, I would have thrown him out for being a racist, but he didn't denigrate or anything .. he kept insisting it was a fact that the new illnesses coming out (MRSA, etc) were due to living conditions in other countries.

I tried to look up the article he was talking about but I couldn't find it. There can't be any truth to that? It's our abuse of antibiotics right?

A major part of my problem is diet/nutrition. It's tough to live alone .. it's tough to do it all while working .. it's tough when you're aging and disabled. It's tough not to use that as an excuse. My biggest downfall is that I try harder when I have someone else to take care of .. not so much when it's just me.

I'm not buying any more kitchen appliances but am looking into these:
http://blueprintcleanse.com/

I'd like to get more veggies/fruits in my diet without having to make a million trips to the grocery. Also, it looks like I'm getting some help weekly .. a couple hours I hope to start. First time I've ever admitted to needing/wanting help in my 27yrs of paraplegic paralysis. That will certainly alleviate some stress, I hope, which is another common theme in my life. I don't know why ... always was a worrier.

[lynnifer]

Ex-nay on the cleanse site - far too expensive. I'll have to find a health food store around that juices and get friendly, because I'm not buying a processor and making a thousand trips and lugging all kinds of groceries!

[crypticgimp]

i definitely think diet is a HUGE part of it. another is genes. but if your diet is poor, you aren't getting the nutrition your body needs to heal, and i am not just talking about protein. have you thought of joining a csa? it's often cheaper and some will either deliver if you explain your situation. they give you a box of veggies every week.

also glad you're getting some help!! it's tough to accept it, especially when you're used to being hyper independent.

[Finbar]

Lynnifer,
No suggestions-just admiration for your spirit. To the extent that there is any fun on CC you are largely responsible.
If I believed in prayer I would pray for you.
Get ALL the help you can. You have a right to it.
Finbar

[Donno]

Jenn, I try to eat healthy, but don't always make it. I have been drinking a 8 0z. bottle of Boost Plus for the past year, and it seems to help. I have also been putting POL cream on spots prone to breakdown for 6 or 8 months, and it seems to help as well.

[Patton57]

I was speaking to my urologist (SCI specialist) about going on a diet a year or so ago and he shared his opinion that he thought the optimal weight for most SCI'd folks was about 5-15lbs over your ideal SCI'd weight (those amounts were based on my assumed ideal weight of 175lbs). He thought that the extra padding would be helpful, not burdensome and yet not contribute to causing pressure sores.

After I thought about it more it seemed like he might be onto something.

[Sue Pendleton]

We're they talking about depression and TM? Hopkins TM Center came up with that but I never did figure out if they meant if you were predisposed to depression then TM hit or if TM hit you are more easily hit by depression (duh!).
As for the skin, you need a skin barrier cream or lotion to protect your skin until you get the leaking stopped. I'm sure an RN knows some good ones.

[lynnifer]

Just regular diaper cream worked for a while - then once the wounds became larger, no dice. I alternate what side I sleep on, but invariably the other side will worsen. I usually end up on my back anyway. Already sleeping on an alternating air mattress. As well, I was concerned the back of my chair was bothering them as well (cloth sling).

For some reason, vetericyn does nothing but make my skin look irritated and red. Miracle Mist Plus seems to soothe it (though I think it's just saline in a spray bottle, lol!)

I need greens in any way I can get them. Anti-oxidants. And I really need to practice what I preach and invest in an electrical stimulation machine for healing.

I just thought my nurse's theory was radical.

Sue: TM is responsible for the depression that ensues, according to what I read. The more sparring people have, the more they seem to be depressed as well. Not sure if that's solely a TM thing or just a paralysis thing.

Thanks Finbar ... it's sad that people here know me better than my family ever will.

POL cream ... POL ... what does that stand for?

[gjnl]

You have probably responded to these question in the past, and I have missed it, but...

are you taking an anticholinergic medication? If so have you changed meds to see if another one works better than the one you are taking?

have you played with the amount the foley balloon is inflated?

Agree with "donno" regarding trying a nutrition supplement. When I was not eating well (I was undergoing chemotherapy and eating wasn't a pleasure, so I didn't do a good job of it) these supplements kept me going in a quick and easy fashion. If you don't like the milkshake consistency to many of these drinks, Ensure now makes one they call Ensure Clear and it is a supplement the consistency of juice. It comes in two flavors, peach and blueberry pomegranate.

All the best,
GJ

All the best,
GJ

[lynnifer]

He thought that the extra padding would be helpful, not burdensome and yet not contribute to causing pressure sores.

Trust me, there is far too much padding! lol

I don't take the urological drugs as I'm completely flaccid (unless there's some reflex I'm unfamiliar with .. my uro seems to think my bladder is the size of a walnut and spasms even though I insist it doesn't - been on the foley since 2009). All I have to do is bear down and I'll leak (cough, sneeze, transfer, bend over). When I laid on the exam table prone, the uro said to bear down and I could produce urine .. but I can't hold it. I tried Detrol and Vesicare but neither seemed to do anything for me. Vesicare caused pain where my kidneys are located so I couldn't try it for long.

I must admit, I had to stop taking vitamins/minerals before my surgery in November and I haven't really gotten back into a regular 'take them every day' regime. Good to know about clear Ensure - and sound like great flavours.

I did play with the balloon and regularly fill it to 11 or 12cc's ... something I picked up here between a conversation with HipCrip and the SCI-Nurse. I also increased the foley size from 14fr to 16fr which helped a little, but didn't solve the problem. I have to watch my bowel output as that will make me leak as well. I'm not eager to go to 18fr as I understand, and my uro explained, that doing this just causes the urethra to 'get used' to it and will still lead to the leaking problem.

Thanks for the ideas guys .. it's great to get advice from others in your actual situation.

[Sue Pendleton]

In that case...start by taking L-Lysine every day. It's an OTC supplement that is an amino acid that helps with healing mainly mucous membrane cells but thyat entire area... I get a lot of greens out of an oriental style salad we kind of toss together. Make a lot and keep it in the crisper until you want it then add dressing. We slice up Napa cabbage, bok choy and the old fashioned crinkly spinach together. You can add fresh or canned mandarin ornages, bean sprouts (drain well if canned and wash well if fresh) and water chestnuts or almonds right before serving. For a dressing you can buy something bottled or throw together white wine vinegar, canola oil, a small bit of low salt soy sauce, grated fresh ginger (google it and one small piece of root will last a long time if stored right and beats the stuff from the spice aisle) and finely chopped garlic. Store any leftover dressing in the fridge and you can also marinate some fish with some.
Or drink wheat grass juice and gag a lot. :-(~~~~
You are taking about 1,000 IU of D a day, right?

[lynnifer]

Maybe I should just bite the bullet and finally pay for nutritional counselling. Having a thyroid issue throws everything out of whack and the improper healing makes me worry to death about diabetes (3/6 in my family have/had it) .. I get tested every year and so far - nil.

[Sue Pendleton]

OK, maybe try the old oxybutynin chloride for a couple weeks. Not the expensive XL but the dry mouth killer of all time. It's cheap and it sounds like you might have some reflex in there. 5 mg TID was the normal rx I think. I forget why but my old uro tried me on Vesicare and I was back to Ditropan XL within a couple weeks. It didn't work or not well.

[lynnifer]

You are taking about 1,000 IU of D a day, right?

I was .. for a while. lol I should. I just checked my multi-vitamin .. only 200iu of Vitamin D. Another issue is that I can't take any vitamin or mineral supplements 6hrs before or 2hrs after the thyroid.

I never used to care but once I stopped taking my vitamins and eltroxin at the same time, my thyroid obviously started behaving better. If I'm approved for Fampyra, I'll have to get a watch with an alarm or program my Blackberry (soon to be iPhone in the Fall!) because I'm terrible at remembering to take pills. I miss a day weekly at least AND I use a docet!

Ddrops brand name Vitamin D tastes okay but is expensive. The generic 'life brand' sold in the major drug stores here in Canada (Shoppers) tastes like licking a soy bean plant AFTER it's been sprayed chemically and pissed on by the family pet. I would know - I was raised on a farm. Blech!

I have a powdered version of Pro-Argi in the back of my cupboards.

I guess I just need to force myself to attack on all fronts nutrionally again. Shit. So easy for some, difficult for others! I blame my mother - who has a kid at age 41! (joking ... kinda)

[gjnl]

I did play with the balloon and regularly fill it to 11 or 12cc's ... something I picked up here between a conversation with HipCrip and the SCI-Nurse. I also increased the foley size from 14fr to 16fr which helped a little, but didn't solve the problem. I have to watch my bowel output as that will make me leak as well. I'm not eager to go to 18fr as I understand, and my uro explained, that doing this just causes the urethra to 'get used' to it and will still lead to the leaking problem.

Have you tried reducing the amount of inflation in the foley balloon? I have read here (may be the same/similar thread to which you refer) where some people only use 6-8cc to inflate the balloon, i.e., the smaller balloon doesn't irritate the bladder wall as much. Of course the delicate balance is inflating enough to keep the foley in the bladder.

In addition to changing the size of the foley, have you tried different materials from which the catheters are made? Maybe another material would be less irritating to the urethra.

Of course, there is the possibility of considering going to a suprapubic catheter. You would be eliminating irritation to the urethra, which may be causing some of the difficulty.

All the best,
GJ

[SCIfor55yrs.]

I was speaking to my urologist (SCI specialist) about going on a diet a year or so ago and he shared his opinion that he thought the optimal weight for most SCI'd folks was about 5-15lbs over your ideal SCI'd weight (those amounts were based on my assumed ideal weight of 175lbs). He thought that the extra padding would be helpful, not burdensome and yet not contribute to causing pressure sores.

After I thought about it more it seemed like he might be onto something.

The problem is that the weight gain is not likely to be in the butt. For us it will be in the gut or muscle mass that we build in our upper body. And when our legs start to atrophy, the theory makes no sense. I have had a skinny butt most of my post injury life with no sores. It is a complex problem involving genetics, luck, care, secondary conditions, etc.

[lynnifer]

My uro didn't think a supra would work with me after all this time because of the weight I've put on plus my skin issues. Another online friend with TM said it didn't work for her either and became all infected, etc and she's looking at the 'tubes connected to ureters' surgery as well. My best friend who is quad is also having problems with SP. We are both 20+yrs post and having similar bladder issues except her skin breakout is on her stomach.

I can't have a small inflation on the balloon - it will inevitably get yanked out during a transfer. Over-inflating it actually ceased that from happening.

I definitely have 'the shadow' upon video urodynamics from the foley balloon. I tried silicone and ended up with a blister inbetween my legs so I never went back to it ... my skin is so sensitive and that material is just so hard!

What I need is new elasticity in my bladder neck/sphincter dammit!

[Patton57]

The problem is that the weight gain is not likely to be in the butt. For us it will be in the gut or muscle mass that we build in our upper body. And when our legs start to atrophy, the theory makes no sense. I have had a skinny butt most of my post injury life with no sores. It is a complex problem involving genetics, luck, care, secondary conditions, etc.

I agree that you can't add it where you want/need it. Although, when I lost ~25 lbs last Summer my pants were certainly more loose in the butt and gut but again you can't control the distribution.

[Sue Pendleton]

LMAO! Vitamin D is normally a small oil capsule meant to be swallowed whole. I'd talk to your pharmacist about the timing of all these things. Other than drugs for diabetes, thyroid, antibiotics and cancer stuff there's a bit of leeway in there for most of the supplements but calcium. I don't know of L-Lysine mixing with anything badly except your throat. They tend not to be coated a big round tablets. Swallow alone with enough water to get it down.

[lynnifer]

True. Boney butt but it seems an arse settled in the front. lol Another friend struggles with weight and will get a red spot on her tailbone if she dips below a certain poundage.

Like I said, thanks for the suggestions. Sometimes seeing it outright helps ... I see I need to start from the diet up, AGAIN. And quit complaining that I have poor genes.

[lynnifer]

Swallow alone with enough water to get it down.

This is a kid who was threatened with the proverbial 'pill-gun' in rehab. Though I never saw it, I never doubted its existence. Gawd I hate pills!

This pro-argi stuff has the L-arginine in it .. it's a powdered mix with water in a supposed berry flavour. It tastes like the bottom of a creek ... after a drought. lol

I'll have to start writing down which pills I take at what time to keep better track. Picture me ten years from now with my very own Nurse Rachett because I can't remember such things: "It's medication time! It's medication time!"

[crypticgimp]

just curious as to why u wont consider the mitro + augment?

[lynnifer]

Cancer. My urologist agreed. I want to go forward as well, not backward. I am being stubborn and obstinate about this. If I don't demand something better, I'll never get it.

I'm just abhorred that after all these decades and knowing full well that the genitourinary system is a challenge for paralytics, that something better hasn't been developed as far as care.

Case in point: Todd who will hopefully get better and come back to us .. but this is still happening after all these decades and remains in the top five killers.

[crypticgimp]

i havent met ppl who have had cancer from the mitro but it's a risk just like with the foley and sp tubes. but most things carry a risk for cancer, even food.

[thehipcrip]

Lynnifer, depending on their size, Duoderm Ultrathin would both protect your butt boo-boos from further exposure to leaked urine and promote their healing. The Ultrathin are not clear but they're far from the opaque nightmares the regular Duoderm are, so it's possible to do some monitoring of the wounds while they're covered.

As for improving your nutritional intake, I plus one Donno's recommendation. My Mom's use of the Boost and Ensure-type products made a measurable improvement in her health near the end of her life.

[SCI-Nurse]

Hi lynnifer
I read all the posts and I think your question is about the wound, although many other issues were mentioned and the urinary leaking could be a contributing factor. So...Wounds are all about cause...pressure, moisture, shearing, nutrition, etc.
I hope a wheelchair seating program has mapped your pressures while sitting (is this on a sitting bone - ischium); moisture (sweating, urinary leaking, proper wound dressing material); shearing - rubbing of the skin with shifting while sitting or with transfers; nutrition - checking your protein (albumin) levels - making sure you are eating enough.

pbr

[Sue Pendleton]

This is a kid who was threatened with the proverbial 'pill-gun' in rehab. Though I never saw it, I never doubted its existence. Gawd I hate pills!

This pro-argi stuff has the L-arginine in it .. it's a powdered mix with water in a supposed berry flavour. It tastes like the bottom of a creek ... after a drought. lol



Get the phone or Blackberry programmed, STAT! I said L-Lysine. L-Arginine is normally used topically or right after plastic surgery to avoid bruising. I think. And yes, even our doctors are farting off the RDA of Vitamin D and suggest 1 to 2k milligrams of D a day. My new, female, PCP suggests two doses for good absorbtion and we both live in cold winter areas so she suggests the higher dose because among other things it improves mood. :beer2: If you try to avoid the big multi-vitamins add Vitamin A for skin care along with zinc until your skin is healed then drop the zinc.

Do you have a blender to make smoothies? If you do buy a cheap coffee grinder to pulverize your dry pill supplements and add them to a smoothie every day. The fat based vitamins are tiny so swallow, Dearie. Yea, ask to see a nutritionist.

[Mona~on~wheels]

This may have been said but green powder that you mix with water or juice is the easiest way to drink green. It taste bad though. So I chug it. Hope you get well soon. You're a fighter! Admire you for all your accomplishments & will power. Nothing wrong with getting help. Gives you more "Me" time to enjoy life. {hugs} :)

[GL]

Lynnifer Generally I inflate my Foley baloons to sometimes 11
Sometimes my bladder spasms ( Wigz Out ) and I just go through heck with the crappy feeling for a night or so

Sometimes I have to reposition the Catheter and it makes a world of difference in my case .

Do you think a S/P catheter might help you ? I went this route in 2009 and do not regret it .

Every thing causes Cancer so I look at life like a locomotive move forward as ;
I try not to dwell on Fear's ( Cancer )
I've even gained a good 20 lbs or so and I will not tear my mind to shreds over my weight ...

Sure Family genetics play important parts in our lives but Lynnifer you are a strong Lady a Super Trooper having dealt with so much for so long .

I used to be a Pure Veggitarian then After my last neck back surgery I decided to enjoy the best of both worlds and I feel much healthier because I will not deprive my body of nutrients .

Lynnifer I hope you feel better
Life is definitely a juggling act
Just stay strong and give it your all
Sincerely ;
GL