Peristeen New User with Concerns

[John Davis]

Today is my 40th day to use Peristeen irrigation and I am very pleased to report that I have gone all 40 days without a bowel accident. From this point onward, even if I experience the occasional accident, I would consider my use of the Peristeen device to have been highly successful.

If any former Peristeen user reads this forum, please tell us how long you used Peristeen, how it worked for you, and why you quit using it.

Best wishes to all.

--John

[NW-Will]

No good information.
The emeez has me down to 10 stims and the whole procedure seems smoother.
I'd like to get the stims down... but on some occasions it definitely takes the stims to get everything out.

I do the stims until I have 2 in succession that are completely clear.

The pre stretching of the balloon before using is working well for me now.. haven't had a balloon burst on me since I started streching them.

keep coming with the tips.... very helpful

NW-Will,

Pardon me for noting it, but that seems to be an excessive number of digistims.

I am amazed that you were able to get so many uses out of a rectal catheter. Impressive.

Since I posted the previous, my medical supply house has contacted me and deleted the very scary co-pay I was expecting. That is a relief.

I now will not need to reuse catheters for so many times, however, as I have found that irrigating twice each day keeps me reliably continent, I will reuse catheters a second time.

--John

[John Davis]

NW-Will, that is great news about your progress with the digistims. Every little thing helps. I understand what you mean about the difficulty sometimes of getting everything out. Does your agility permit you to use a gloved finger or are you using a digistim device?

May I ask how long your complete bowel program takes?

Thanks for the tip about pre-stretching the catheters.

Today is my 45th day without a bowel accident. I find that to be amazing. Even when I used traditional enemas to manage my bowel incontinence, I occasionally would experience an accident from the enemas themselves - in the form of delayed drainage of enema solution. Such a drainage accident (usually fairly small) could occur as late as three hours later. Fortunately they did not happen frequently.

--John

[NW-Will]

I use gloved fingerS... First finger and index finger, once in spread them and swirl kind of thing.

My complete bowel program is about 90 minutes right now.
Insert Emeez... wait 20 minutes.
insert peristeen .. pump and fill .. wait 20 minutes.
Digistim (5 times) for about 10 minutes
Insert peristeen ... pump and fill .. wait 20 minutes
Digistim (5 times) for about 10 minutes
Clean up 10 minutes.

I suffer from crazy butt pain.. which I put down to hemorrhoids, and irritating hemorrhoids

NW-Will, that is great news about your progress with the digistims. Every little thing helps. I understand what you mean about the difficulty sometimes of getting everything out. Does your agility permit you to use a gloved finger or are you using a digistim device?

May I ask how long your complete bowel program takes?

Thanks for the tip about pre-stretching the catheters.

Today is my 45th day without a bowel accident. I find that to be amazing. Even when I used traditional enemas to manage my bowel incontinence, I occasionally would experience an accident from the enemas themselves - in the form of delayed drainage of enema solution. Such a drainage accident (usually fairly small) could occur as late as three hours later. Fortunately they did not happen frequently.

--John

[SCI-Nurse]

Do you use Enemeez Plus-it has Benzocaine 20 mgs in it. And lidocaine on peri steen tip and with lidocaine withdig stim? The “ caines” are anesthetic and might reduce the pain. CWO

[NW-Will]

I'm using samples of Enemeez... both plus and regular.... they both seem to work good, not sure I can really tell the difference.
Trying to get medicaid Washington to pay for them!

When I've finished I do one last digistim with lidocaine jelly, to try and calm things down, seems to calm things down for about an hour or two, then it wears off and yeah really hurts.

Do you use Enemeez Plus-it has Benzocaine 20 mgs in it. And lidocaine on peri steen tip and with lidocaine withdig stim? The “ caines” are anesthetic and might reduce the pain. CWO

[John Davis]

Today is my 50th day of using Peristeen. I have gone all 50 days without experiencing a single bowel accident! Well done Peristeen.

Unfortunately, after a good period without any balloon pops, I have had several pops. These were with 4 pumps of air, pumping water slowly (once every four seconds), and at a low volume of water. One occurred at about 100 ml and another at about 300 ml. I am perplexed as I thought I was doing everything I could to avoid this problem. If you read my previous postings, you can see what I have done. Of course, there always is the possibility of a few sub-standard catheters.

--John

[NW-Will]

Enemeez... plus is covered by Washington Medicaid ..woo hoo. you can tell I have SCI I get excited when the stuff that makes me shit gets paid for !

Since I've been stretching the balloons out by pumping them 8 times before using them I've had no balloon pops....

[John Davis]

NW-Will, that is good news about Enemeez being covered by Medicaid. I would not have expected that, as it is available OTC.

Your excitement about "stuff" is shared by most who have to deal fecal incontinence, not just those who are SCI.

My co-author (on a draft book about managing incontinence) and I have noted that we share things about incontinence that we do not even discuss with our wives as it would be difficult (and unfair) to expect them to really understand.

I will continue to work on the dreaded balloon pops. Hey, at least we get to play with balloons!

Are you saying that you first put the catheter under water and then give the inflator 8 pumps before using it? If so, when I tried stretching the balloon I did not inflate it nearly enough. This certainly is information we cannot expect to get from a Peristeen rep.

--John

[NW-Will]

I just take the balloon out of the packet, attach it, then pump it up 8 pumps, deflate it, pump it up 8 times, deflate, then put it back in the packet and pump the water through to lubricate it and continue.. etc.

I've noticed that some balloons inflate perfectly from the get go where as others are lopsided, but once they're inflated to 8 pumps they straighten out and inflate uniformly after that.

[John Davis]

Thanks, that helps me better understand what you are doing. Of course, there still will be differences in our methods - i.e., how much water we use, how many pumps of air we use once the catheter is inserted, etc.. These may affect the frequency of popped balloons. It appears that I will be doing considerable trial and error for a while longer.

Another factor may be how our bodies individually respond to the inflated balloon. I have found that the fully inflated catheter balloon stimulates strong peristalsis and often a very strong defecation contraction. I view these factors as being positive (unless I am told otherwise by my physician) as they move stool down the colon toward the rectum and prepare for the elimination of stool from the rectum. However, a very strong defecation contraction after I have pumped in 700 ml or more of water puts a lot of pressure on the balloon. This happened to me this morning. The very strong contraction tried unsuccessfully to eject the balloon and, instead, popped the balloon before I had time to . As I already had pumped in 1 Liter of water, the desired result was achieved.

On that subject, would you mind sharing how many pumps of air you usually use and how much water do you usually use?

I would love to hear any more tips you might have. Your advice has been invaluable.

[John Davis]

While experimenting to find how to reduce the number of popped rectal catheter balloons I have experienced, I may have stumbled on something of interest.

Somewhat to my surprise, I have learned that all squeezes of the pump to inflate the catheter balloon cuff are not the same. By this, I mean that four squeezes do not always produce the same result in terms of the volume of air pushed through to the balloon - there can be a marked difference in the final size of the inflated balloon depending on the number of seconds delay between squeezes.

Inside the rubber squeeze bulb there must be another liner for the air. If I squeeze the bulb four times fairly quickly, i.e., once every second or two seconds, the resulting balloon will be markedly less inflated than when I wait a full four or five seconds between squeezes. I think it takes more than a few seconds for the interior liner to completely refill with air and be ready for the next squeeze.

Early on, I sometimes was using five pumps of air to keep the inflated balloon in the rectum. Later, as I slowed down the rate with which I was pumping in the air, I found that I was achieving the same result with only four pumps of air. When I pumped a fifth time, I could feel that the balloon was uncomfortably large and often the balloon popped during a contraction.

I would appreciate anyone’s comments about this.

—John

[NW-Will]

Yes.. the quick pumps in succession do result in less of pump than the slow pumps with a few seconds seperating.
I usually go with 5 pumps.

I've changed my water routine since this conversation.

I was using 500ml twice, I'm now using 1000ml twice.

I'm now down to 8 digistims! so quite a good improvement. The combination of using the Enemeez has made a marked improvement.

[John Davis]

NW-Will, thanks for the feedback about the air pumps. It is good to know that I am not the only one who has noticed this. Perhaps Coloplast should mention something about it in their instructional materials.

Making it down to 8 digistims from what you were doing is, indeed, an improvement. I am glad the Enemeez has worked for you.

I am following your advice about pre-inflating the catheter balloons.

My standard BP is Enemeez followed by two 1000 ml irrigations with the Peristeen.

I do a DRE before using the Enemeez. I only do a digistim if I find something in the rectum and that has been very uncommon.

The combination of the Enemeez with two 1000ml irrigations has been so effective that I do not do any digistims after the irrigations. I checked on multiple occasions and found no fecal material. I should note that I usually experience very strong defecation contractions when I have used between 800 and 1000ml, and that probably has helped to clear out the rectum.

I think today was my 54th day with no bowel accidents. While acknowledging that the Peristeen Rectal Irrigation System is not for everyone, it can be highly effective for some of us. If I were not also bladder incontinent, I would be tempted to go out without a diaper (but I am not that brave).

[John Davis]

This morning, during my Peristeen irrigation I used 4 full pumps of air. I had just finished pumping in 1,000ml of water when I experienced a very strong contraction. Very much to my surprise the entire inflated balloon was ejected. It did not pop and was fully inflated. I was surprised at how large it was. I guess that shows just how big that part of my anatomy can be! I knew I was large down there, but not that large.

During strong contractions, I am trying to "puppy pant" like a woman in labor in order not to increase the intra-abdominal pressure on the balloon.

I have been trying to irrigate with only 4 pumps of air in order to reduce balloon pops. I will try adding only one-half additional pump and see whether I can avoid pops.