Chronic constipation led me to use enemas for years. although very affordable, the problem with this approach was the large amount of time it could take, and a growing problem of having BMs happening at inappropriate times.
I tried PIE in a hospital setting. it worked of the pulses aggravated hemorrhoids. Peristeen was better than enemas because the balloon catheter keeps the water in long enough to hydrate the stool, leaping to a complete evacuation. also, it did not aggravate my hemorrhoids (they have a better chance of healing this way), plus the fact that there is no equipment involved, nothing to break down, everything is small enough to be very transportable (I like going on RV trips with family and there is no way that would work with bringing major equipment)... all meant it was an easy decision for me. However, since I switched to this several years ago I have not been looking for any other product, so it's perhaps something is come out more recently that is just as effective but perhaps less expensive ed On Wed, Nov 11, 2020 at 5:00 PM Tod Santee <mr.san...@gmail.com> wrote: > Hi Ed, > In researching this and similar systems, my wife & I have seen > several types that are generally the same as the name brand Peristeen > system, including a "homemade" do-it-yourself kit using urinary catheters, > a bedside bag (for gravity-fed) or 30 ml syringe (for a gentle forced) used > to introduce the warm tap water or a mild soap & water solution. I can > understand why the brand name kit with its special bag & dial for inflating > the balloon and introducing water would cost more but the general concept > doesn't seem to be much more complicated than a simple enema except for the > fact most of us with SCIs wouldn't necessarily feel the fullness in time to > prevent a bowel rupture. But I can see that potentially happening just as > easily even with Peristeen if one isn't careful. > Has anybody tried plain old enemas or something similar to Peristeen > or P.I.E. but without the actual brand-name & high-cost systems? > > Best wishes, > --Tod > > > On Tuesday, November 10, 2020, Ed Tessier <e...@artecopartners.com> wrote: > >> I also have the same problems you did. My switch to peristeen ( I >> participated in one of their early trials for SCI candidates) has been a >> complete game changer. >> >> much quicker system-- approximately one hour >> much less pain and discomfort >> much less incontinence-- I went from an accident every few weeks to >> maybe once every three or four months >> almost never any problems with constipation >> >> the price of the system is a little steep... but with all of these >> advantages, and being able to travel, and getting so much time back, I >> couldn't imagine doing it any other way. if it ever goes off the market I'm >> in trouble. >> >> Ed >> >> >> >> On Tue, Nov 10, 2020 at 4:53 PM Tod Santee <mr.san...@gmail.com> wrote: >> >>> Hi Carla, >>> I'm not sure what kind of doc(s) you're seeing, but in my 37 yrs >>> I've found many doctors will quickly dismiss quad's complaints as just >>> something to get used to unless they are pretty well versed in spinal cord >>> injuries and the unusual complications we face. Almost any such doc would >>> know that sweating of any significant amount by a quad is very, very rarely >>> "nothing worth looking into." The differences in times, types and amounts >>> of sweating you describe with no outwardly obvious reasons would make me >>> want to seek info from a neurologist with experience with quads. My first >>> suggestion would be to try to keep a daily journal to include when the >>> sweating starts and what you were doing and even something as simple as >>> what position you were in just before it started (i.e. were you sitting >>> still, reaching, transferring, doing a bowel routine or exercise, etc.) and >>> is any of it accompanied by pain in the shoulder, neck, or even a side of >>> your ribs or abdomen. >>> My first guess would be a syrinx... it's likely been mentioned >>> here before but if you haven't heard of it, it's a stretch or longitudinal >>> (lenghtwise) opening between fibers of the spinal cord that fills with >>> cerebrospinal fluid. It can cause all manner of weird symptoms from pain >>> to sweating to occasional or continuing weakness. To the best of my >>> knowledge, the only definitive way to diagnose a syrinx with certainty is >>> with an MRI. >>> One thing I might suggest is to look into Craig Rehab Hospital's >>> website (they're in Denver) and see when their next online Q&A with a >>> nurse is. Craig specializes in SCI and their free online Q&A sessions can >>> be super helpful. When I was 13 yrs post-injury, I had what is called a >>> tethered cord... a situation where the spinal cord attaches to the dura (or >>> duramatter, the very tough surrounding tissue enclosing the brain and >>> spinal cord) and causes a strain or pull on that section as you move >>> around. My symptoms were similar but maybe not as severe as what you >>> described. Plus i had a lot of pain in one shoulder. (But again, it's >>> different for all of us.) There wasn't much of a public internet to speak >>> of at the time I had it but they pretty much diagnosed me over the phone, >>> asking for an MRI just to verify their suspicions. The tether caused a >>> syrinx enough that even I could see it on the films without medical >>> knowledge. >>> I went for a surgery that detached the cord from the dura and they >>> added tissue to make the area around the cord a bit larger. It was INSTANT >>> relief of pain & sweating when I woke from surgery!! >>> I hope that helps some. I could be 100% wrong, too, but it >>> wouldn't be a bad idea to look into it if you haven't already. I've heard >>> these similar symptoms from several quads. >>> >>> Best wishes & good luck, >>> --Tod >>> >>> >>> On Sunday, November 8, 2020, Carla Aarssen <caars...@hotmail.com> wrote: >>> >>>> I am a C5 quad 18yrs now and for the last 10 or so have on and off >>>> issues with profuse sweating that lasts from minutes to weeks. Sometimes it >>>> is entire upper body sometimes it is only one side (not always same side) >>>> Sometimes I am cold well sweating sometimes I am hot. No doctor seems to >>>> think it is "worth" looking into but I know it is uncomfortable, >>>> embarrassing and greatly affects my daily living. My bowels move daily but >>>> not always much? My roho cushion is checked regularly. I have no skin >>>> issues. I drink plenty of juice and water...Any thoughts, ideas and/or >>>> suggestions? Thanks in advance. Enjoy your day đ >>>> >>>> Get Outlook for Android <https://aka.ms/ghei36> >>>> >>>> ------------------------------ >>>> *From:* Tod Santee <mr.san...@gmail.com> >>>> *Sent:* Saturday, November 7, 2020 3:23:41 PM >>>> *To:* Robert Vogel <rhvsh...@me.com>; quad-list <quad-list@eskimo.com> >>>> *Subject:* [QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care >>>> >>>> Hi Robert, >>>> Thanks for the very detailed info about this Peristeen / Coloplast >>>> system! I had never heard of it until you and another person here >>>> mentioned it. >>>> I'm glad to hear how well it works for you and especially happy to >>>> hear it from a fellow diver! Given its easy-sounding portability I'll be >>>> looking at this one a bit closer now, too. (Hopefully having more than one >>>> option doesn't complicate things! LOL!!) >>>> >>>> Best wishes, >>>> --Tod >>>> >>>> >>>> On Friday, November 6, 2020, Robert Vogel <rhvsh...@me.com> wrote: >>>> >>>> Hi Todd, >>>> >>>> From my âsurvey of oneâ first look into âtrans anal irrigationâ as in >>>> the Peristeen system by Coloplast. It is >>>> similar (and different) than the PIE system. It is small (fits into a >>>> shaving kit size bag), light and portable. >>>> It consists of a clear plastic (soft) container that can hold up to >>>> 1500cc of tap water, tubing, a small hand-squeeze >>>> pump, a controller, and the keyâa disposal rectal foley catheter. You >>>> fill up the Peristeen bag with luke warm tap >>>> waterâhowever much works for youâeverybody is different, the average >>>> amount is around 500-600cc of water. >>>> Next insert the rectal foley into your rectumânext there is a simple >>>> plastic âdialâ controller, you turn the dial to >>>> inflate, squeeze the rubber-ball like pump once or twiceâthis inflates >>>> the foley balloon which holds the catheter >>>> into your rectum and prevents any water from coming out. Next you turn >>>> the dial to âwaterâ and start squeezing >>>> the ball to fill up your large intestine with water, which generally >>>> goes about 1/2 way into your large intestine, thatâs >>>> about 2 1/2 feet. Then turn the dial to âdeflateâ remove the rectal >>>> foley and wait. The tap water does two things, it >>>> softens and lubricates stool in your colon, and it acts as a mild >>>> stimulate which causes the colon to contract. >>>> >>>> In my experience the entire process takes about 40 minutes and empties >>>> me out like nothing Iâve tried in 35-years. >>>> CT scans with contrast show that Peristeen empties out 2 1/2 feet of >>>> colonâthe average bowel program and/or >>>> the average non-disabled person having a bowel movement only empties >>>> about 6-8 inches of colon. It empties >>>> me out so much that I only have to go every other day and I havenât had >>>> an accident in the 8-years since Iâve >>>> been using it. >>>> >>>> I find it is great for use at home, even better when travel, especially >>>> on dive trips when I want to be extra cleaned >>>> out. >>>> >>>> Caveat, you need a prescription from your doctor and need to be trained >>>> by a Peristeen trainer, which can be >>>> arranged through Coloplast but takes time. And insurance coverage is >>>> spotty at best. >>>> >>>> Here is the link: >>>> https://products.coloplast.us/coloplast/continence-care/peristeen/peristeen-tai/peristeen-balloon-catheter/peristeen-anal-irrigation-system/ >>>> >>>> I hope this helps. >>>> Bob Vogel >>>> >>>> On Nov 6, 2020, at 3:31 PM, Tod Santee <mr.san...@gmail.com> wrote: >>>> >>>> Hi Everybody! >>>> Some of you might remember me. I'm a moldy, oldie at the Q-List >>>> since the mid-90s maybe, but since I haven't checked in for a long time I >>>> guess I'm a bit of a newbie to many here, too. I'm a male C5-6 Quad, 37 >>>> yrs post injury from a fall from a tree. >>>> So first off... "Hi!" to all my old friends & acquaintances here. >>>> And, looking forward to meeting those who are "new" since I stopped posting >>>> and following closely. >>>> My MAIN reason for writing, tho, is this: For many years... >>>> almost since the beginning of this "new normal" life... my bowel routine >>>> would take 3-4 hrs from suppository (or whatever other kind of bowel >>>> stimulant) to finish with a whole lot of digital stimulation along the >>>> way. It's always been (pardon the pun) a pain in the ass! I'm sure I'm >>>> alone on that last bit!! LOL! >>>> Problem is, lately I've been waiting just as long but now sweating >>>> like crazy throughout the majority of that time. A colonoscopy shows no >>>> irregularities other than some minor exterior hemorrhoids that I've had for >>>> at least 30yrs... i.e. no change there. >>>> So I'm looking for a change in process and I've been encouraged to >>>> look into the P.I.E. system (P.I.E. = something like "Pulsed Irrigated >>>> Evacuation.") that uses a catheter to fill the bowel with water and let it >>>> empty into a container (lather, rinse, repeat until done). I looked it up >>>> online & it has a pretty decent animated video of how it works. BUT, it's >>>> big & I'd guess expensive if insurance doesn't cover it. >>>> I figured I'd turn to the experts here to see if anybody has tried >>>> this, how well it worked --our not-- and how you'd deal with things if/when >>>> traveling. My wife and I enjoy world travel to not-so-accessible locations >>>> for scuba diving trips... at least up until a year ago. >>>> Any ideas or opinions on this P.I.E. system from anybody familiar >>>> with it would be SUPER appreciated!!! >>>> >>>> Thanks All, >>>> --Tod >>>> >>>> >>>> >> >> -- >> >> Edward Tessier >> Vice President >> 191 W 4th Street >> <https://www.google.com/maps/search/191+W+4th+Street+Pomona,+CA+91766?entry=gmail&source=g> >> Pomona, CA 91766 >> <https://www.google.com/maps/search/191+W+4th+Street+Pomona,+CA+91766?entry=gmail&source=g> >> M (909) 994-5900 >> >> -- Edward Tessier Vice President 191 W 4th Street Pomona, CA 91766 M (909) 994-5900
