Post by jaylock on Jan 29, 2017 10:48:11 GMT -8
Let me start by saying that I know many people on this forum use Peristeen successfully and with no problems. In fact, I was first introduced the system on the Apparleyzed forum where so many members described how effective the system is and how life changing it could be. It sounds like a great product – if it works for you.
I’m pretty sure right now, though, that Peristeen caused me a severe reaction that I didn’t recognize initially, so I just wanted to warn anyone in case they’re having any similar symptoms.
So, here’s the long (long – sorry) story.
I found out about Peristeen from the forum doing a search on bowel problems, since I’d had constipation for a while, despite a good diet, fluids, exercise etc. I began getting terrible cramps and bloating, hard stool, alien looking distention snaking through a swollen stomach, and hours on the pot. My doctor of 4 years (Doctor #1) –(I told you it was a long story)- recommends oral laxatives, in addition to Enemeez. (Thanks, Doc. Could have paid myself $250 for the same advice). But then I tell Doc 1 about Peristeen, and he writes a prescription. I can’t find a supplier, so his medical assistant finds an online store in Canada who’ll sell me the system with the prescription, but not covered by insurance. I’m so desperate at this point that I shell out the money and get Peristeen through the mail. In the meantime, Doc 1 is writing up a justification to see if insurance will cover the (very expensive!) supplies, which finally get approved.
I receive the system, watch the videos, read all the instructions, look at every forum post I can find with advice etc., and give it a shot.
For anyone unfamiliar with it, Peristeen is basically an enema bag with a pump that will allow a seated person to retain water in their colon long enough for a successful evacuation of the bowel . And, it did work. The first time was quite successful. Not so much the next time, where more manual evacuation was needed, as with subsequent tries, but it did relieve constipation.
I used the system for a couple of weeks and was starting to feel really sore. Wasn’t sure if it was UTI, yeast, or sore bum, but just a nagging ache with some occasional burning (and let's face it, I just don't know what I feel sometimes, I just know it hurts). Didn’t make any connection with the Peristeen. I’d felt this way before, sort of, with a UTI or yeast, so I use my usual home remedies and wait for it to go away. Next thing I know, about a month after first using the system, my blood pressure jumps to 200/110 right before I begin my bowel routine. So, instead of starting my routine, my husband dives me to urgent care. Again, at this point I know I have AD (the first time ever in 20 years that AD has caused high blood pressure – I usually just sweat and get a bit shaky) but I’m thinking it’s probably a UTI or yeast. The RN / paramedic who sees me in urgent is great. He immediately recognizes the symptoms of AD, and tells me he’s calling 911 to get me to the emergency room. Anyway, I end up with a 4 day stay in the hospital (2 days on a cardiac ward because I was on IV nitroglycerin for my BP and because no one would recognize that this was not a bloody heart issue).
I was finally treated with antibiotics because they found white cells in my urine, and also an anti-fungal, and was also ‘observed’ whilst I evacuated my own bowels using the Peristeen, my own shower chair and a hospital bucket because the bathroom in my hospital room was not accessible (lovely!).
Since that first hospital visit my BP has been spiking almost daily. I've felt so bad I could barely leave the house. Doc 1 kept trying different BP meds instead of trying to figure out what’s causing the AD, so I fired him and went with Doc 2. She’s great. She figured out that my constipation is caused by mismanagement of my hypothyroid (hashimotos) so she’s gradually upping my meds. In the meantime, I’ve had two more 911 rides to the ER with AD, seen a Neurologist, Gastroenterologist, Psysiatrist, Urologist, and had CT scans, blood work, x rays, gall bladder tests, etc. etc. etc.
The first ER visit was at the end of August last year. I had to take the semester off work. My AD was bad every day. Stomach pains and cramps continued, despite successful bowel routines, but after each routine I’d be more and more wiped out. I spent more hours in bed. Was eating less and less. I lost a lot of weight judging by how my clothes fit, and quite a bit of muscle. My last ER visit they noticed a stage 1 sore at my tailbone, and ordered a visiting nurse to keep an eye of it. She ordered a PT to help me with some strength training. I didn’t realize that the problems I’ve had transferring in and out of bed are due to me getting weaker. It’s very scary.
I went down hill very fast, and 5 months later I feel like I've aged 10 years.
My last visit to the ER I was in agonizing pain. It felt as though a red hot weight was pressing down on my pelvic floor. Intermittent cathing was excruciating. I had more tests done but they found nothing, and I realized that waiting it out would finally get rid of the pain. The same pain came the following day after my bowel routine at home, and my BP was up again.
I’m writing this now because, after a lot of thought I realized that, apart from the cramps, the symptoms of pain and burning had all come about gradually after I started using Peristeen. I was afraid to stop using it because I didn’t know how else to resolve the constipation – and what if it was that that was causing the AD? Finally, though, I plucked up the courage and just stopped using it.
The good news. Not a single incident of AD since I stopped using Peristeen on January 9. I wanted to wait at least a couple of weeks before I posted anything here, just to make sure. But there’s no doubt in my mind now that I have some sort of sensitivity or allergic reaction to either the plastic or the lubricant in the Peristeen system.
I called and asked Coloplast of any other incidents like this had been reported, and they said no. I also have a latex allergy, and when I asked if Peristeen contained latex I was told “The Peristeen Anal Irrigation system does not contain natural rubber latex.” When I asked if it contained any latex, the same quote was repeated. If……. Peristeen does contain any form of latex, I can only imagine what it must have been doing to my innards. Judging by the welts I get anywhere on my skin when I touch latex gloves or tape, it must have been raw in there. All the tissue in that whole region was inflamed. Ouch!
I’m now trying to get my strength back and also get back into a regular bowel routine without the peristeen. Now that my doctor is aware of my thyroid numbers, my constipation issues are starting to resolve and I’m trying to get back an appetite. I have to go back to work March 1, which gives me about four weeks to get back my sitting stamina and energy and find a bowel program that works. This has been a long, long haul. Looking back I was silly not to recognize what was going on much earlier, but hindsight is always 20/20.
I hope this info might be of help to someone.