My problem is stools that are not always well-formed. Gravity works just fine--I do not need stool softeners or laxatives! I have always eaten a high-fiber diet and drink warm fluids with meals, and plenty of water during the day. Moderating the amount of certain foods manages my stool consistency most of the time, and I do add more (different kind) of fiber in form of powdered dextrin to help. I go every day, emptying in morning and still going more later in day. When I get off in the gut ("bug" or reaction to food), I cannot leave house because bowel mishap is a certainty, my biggest headache with SCI.
I have mostly managed my bowel issues from the start through diet and timing of meals. I've tried every kind of laxative, some were too strong (with disastrous results) and some did nothing at all. So for about the last five months I try really hard to ensure I eat a high fibre diet, including a mid-day smoothie that has 2 tbsps of flax seed and I drink water. At night I take a Senecot and a stool softener and I try not to eat after supper. Certain food trigger loose stools, i.e. popcorn, salads with lots of greens and about every 3rd or 4th day I'm guaranteed to have what I call a bad bowel day for no apparent reason, it's almost like my body is storing it up.
Its interesting to read the replies within this thread...ive just read your reply wavewolf and also katydid's reply. It seems that the key issue here is that bowel behavour is controlling life to a degree. This is the main problem unfortunately and one way to take control back is by evacuating the bowels manually even if you are fortunate to not need meds.
If you guys were on peristeen for example..these bad bowel days would be potentially be removed from the equation and then control is restored again.
I know we are very fortunate here in the UK as peristeen is offered as an option and it is free to us..i wish it were the same with other countries..Finances should not prevent having assistance to do a bodily function. Its simply unfair...
I have mostly managed my bowel issues from the start through diet and timing of meals. I've tried every kind of laxative, some were too strong (with disastrous results) and some did nothing at all. So for about the last five months I try really hard to ensure I eat a high fibre diet, including a mid-day smoothie that has 2 tbsps of flax seed and I drink water. At night I take a Senecot and a stool softener and I try not to eat after supper. Certain food trigger loose stools, i.e. popcorn, salads with lots of greens and about every 3rd or 4th day I'm guaranteed to have what I call a bad bowel day for no apparent reason, it's almost like my body is storing it up.
Hey katydid, I have a smoothie every night and I put in a bit of flax seeds as well! My bowels are the same though, there are the occasional "bad bowel" days then for the most part it's ok on other days.
Its interesting to read the replies within this thread...ive just read your reply wavewolf and also katydid's reply. It seems that the key issue here is that bowel behavour is controlling life to a degree. This is the main problem unfortunately and one way to take control back is by evacuating the bowels manually even if you are fortunate to not need meds.
If you guys were on peristeen for example..these bad bowel days would be potentially be removed from the equation and then control is restored again.
I know we are very fortunate here in the UK as peristeen is offered as an option and it is free to us..i wish it were the same with other countries..Finances should not prevent having assistance to do a bodily function. Its simply unfair...
It's unfortunate but the reality is that money (or a lack thereof) is what prevents people from managing normal bodily functions.
Its interesting to read the replies within this thread...ive just read your reply wavewolf and also katydid's reply. It seems that the key issue here is that bowel behavour is controlling life to a degree. This is the main problem unfortunately and one way to take control back is by evacuating the bowels manually even if you are fortunate to not need meds.
If you guys were on peristeen for example..these bad bowel days would be potentially be removed from the equation and then control is restored again.
I know we are very fortunate here in the UK as peristeen is offered as an option and it is free to us..i wish it were the same with other countries..Finances should not prevent having assistance to do a bodily function. Its simply unfair...
When I asked my "intestinal motility specialist" about Peristeen, she had no idea what it was! She is the top person for bowel issues in my region...so who do I go to?!!!! I am going to order information to be sent to her, and make another appt.
Medicare covers certain kinds of incontinence care, but not others. I cannot use catheters, because of the immune-suppressing meds I take which significantly heighten the risk of infection, including UTI, making it hard to contain (i.e., life-threatening). I am also allergic to many antibiotics, increasing my personal risk. I think infection will kill me before my disease gets the chance to directly. So I must pay for alternatives to catheters that are safer for me, although not without some risk to skin. Medicare limits the number of catheters, so I know some people who are re-using them to avoid expense...
I cannot find out whether Medicare covers bowel incontinence in general. Stool softeners and laxatives are covered if prescribed--maybe only in hospital--but diapers/pads are not covered, and anything OTC is not covered. I have not found a single doctor who knows about Peristeen, but they are going to learn! Bowel incontinence increases risk for UTI, by contamination. So emptying bowel regularly and predictably would most likely extend my life. Lαrα, I do evacuate manually, but I think this could be damaging my sphincter. No one taught me how to do this, I figured it out by trial and error. Without sensation there, just finding the spot is tricky. A post by an SCI in another group actually was the "a-haaaaa" moment for me, his description was so specific and helpful--definitely less injury since then.
My incontinence expense varies, $200-300/month. This is 20-30% of my disability allowance. That is why I am struggling to work three PT jobs, which is not helping me cope with this disease that is much more than my paralysis. I cannot find information of the cost of Peristeen here, but it will certainly be more. Lαrα, I thank you for appreciating the pain and frustration of not having access to something which might so improve my quality of life.
As of January 15, I had a sudden, slight but significant, improvement in sensory function that seems to be helping me manage incontinence a little better, at least some of the time. Like katydid, I use diet and timing of meals to manage my bowels. It's not perfect, but does work to a point. I have had to change my diet because the ability of my GI system to handle the very healthy diet I have eaten most of my life is changing. I must cook most vegetables now to digest, and stool tends to be too unformed (not diarrhea unless I am really in a flare, or have "bug", or ate food that body rejects). Corn is out--not sure if it's the fiber, or other aspects (GMO?) that have changed this. For most of my life (pre-GMO), I ate corn raw off the cob in the field, no problems digesting, although it is something I ate in moderation sometimes specifically for a non-messy "clean-out". My progressive disease may be taking out GI function little by little, separate from paralysis, doctors are not sure really what is happening. Bottom line (pun intended!), I have to use the bathroom every hour, 5-15 minutes of time. So, it does control my life, and creates a mass of anxiety. I try to remember that no one really ever died of embarrassment...but you don't get invited back if you lose control in front of your friends, and the constant bathroom interruption is irritating to them so you get invited less often.
Another question, Lαrα, about Peristeen: does it allow hemorrhoids to heal? Since paralysis, I developed hemorrhoids and they are pretty awful looking now. I cannot feel them at all, at least not directly, but I think there is referred pain or something totally debilitating that I am not calling pain. And they bleed profusely at times, scarily so, which I have to think presents risk of infection, open wound + stool. If Peristeen would reduce irritation, perhaps sphincter would not continue to fail from repeated damage.
Guess you can tell this is a major challenge for me...thanks for reading, and any suggestions will be tried!
wavewolf.....the problem of not having appropriate assistance in evacuating your bowels is no doubt causing the hemorrhoids. Peristeen would eliminate any need for 'pushing' which i suspect is a probable cause of the hemorrhoids.
Are you using a daily application to try and heal them? To be honest peristeen would help greatly...bearing down at all and gravity is not a good combination.
Also use baby wipes after evacuation and then apply sudocream as it will heal and is an antiseptic. Its used for babies so very safe.
You bladder would most certainly be less irritated because there would be less pressure on it.
It does frustrate me to know many of you guys cannot get funding for peristeen...it should be a 'right'.A bowel adviser not knowing about peristeen? hmmm not good
wavewolf.....the problem of not having appropriate assistance in evacuating your bowels is no doubt causing the hemorrhoids. Peristeen would eliminate any need for 'pushing' which i suspect is a probable cause of the hemorrhoids.
Are you using a daily application to try and heal them? To be honest peristeen would help greatly...bearing down at all and gravity is not a good combination.
Also use baby wipes after evacuation and then apply sudocream as it will heal and is an antiseptic. Its used for babies so very safe.
You bladder would most certainly be less irritated because there would be less pressure on it.
It does frustrate me to know many of you guys cannot get funding for peristeen...it should be a 'right'.A bowel adviser not knowing about peristeen? hmmm not good
This is most helpful advice, Lαrα! Now I am determined to get more info on Peristeen and share it with doctors in advance of appt. The amount of time and energy I spend on these issues could be put to better use! Thank you so much for guidance.
Its interesting to read the replies within this thread...ive just read your reply wavewolf and also katydid's reply. It seems that the key issue here is that bowel behavour is controlling life to a degree. This is the main problem unfortunately and one way to take control back is by evacuating the bowels manually even if you are fortunate to not need meds.
If you guys were on peristeen for example..these bad bowel days would be potentially be removed from the equation and then control is restored again.
I know we are very fortunate here in the UK as peristeen is offered as an option and it is free to us..i wish it were the same with other countries..Finances should not prevent having assistance to do a bodily function. Its simply unfair...
. Lαrα, I do evacuate manually, but I think this could be damaging my sphincter. No one taught me how to do this, I figured it out by trial and error. Without sensation there, just finding the spot is tricky. A post by an SCI in another group actually was the "a-haaaaa" moment for me, his description was so specific and helpful--definitely less injury since then.
Wave wolf can you share the digi stim information you got ? I too had to figure out on my own and think i am doing damage. does anyone thinking pressing on the perineum to evacuate the stool could be creating hemorrhoids? Is this ok to do? Lαrαwavewolf
. Lαrα, I do evacuate manually, but I think this could be damaging my sphincter. No one taught me how to do this, I figured it out by trial and error. Without sensation there, just finding the spot is tricky. A post by an SCI in another group actually was the "a-haaaaa" moment for me, his description was so specific and helpful--definitely less injury since then.
Wave wolf can you share the digi stim information you got ? I too had to figure out on my own and think i am doing damage. does anyone thinking pressing on the perineum to evacuate the stool could be creating hemorrhoids? Is this ok to do? Lαrαwavewolf
Insert a lubricated finger into the anus and make a circular motion until the sphincter relaxes. This may take a few minutes.
After you have done the stimulation, sit in a normal posture for a bowel movement. If you are able to walk, sit on the toilet or bedside commode. If you are confined to the bed, use a bedpan. Get into as close to a sitting position as possible, or use a left side lying position if you are unable to sit.
Try to get as much privacy as possible. Some people find that reading while sitting on the toilet helps them relax enough to have a bowel movement.
If digital stimulation does not produce a bowel movement within 20 minutes, repeat the procedure.
Try to contract the muscles of the abdomen and bear down while releasing the stool. Some people find it helpful to bend forward while bearing down. This increases the abdominal pressure and helps empty the bowel.
Perform digital stimulation every day until you establish a pattern of regular bowel movements.
You can also stimulate bowel movements by using a suppository (glycerin or bisacodyl) or a small enema. Some people drink warm prune juice or fruit nectar to stimulate bowel movements.
I do my bowel program Mon.,Wed., & Fri.! I take a stool softener every night and On Sun. evening,Tue.evening, & Thurs. evening I take 2 or 2 1/2 Tablespoons of milk of magnesia. So on bowel morning I use a suppository with digital stimulation. If I'm going somewhere and I have to leave on a Thurs.,, then I do another bowel Thurs. morning and then Monday I start the same routine. At TIRR in Houston is where I was taught and after 26 years, everything seems to be ok. Knock on wood that it doesn't change.
jay, that's what they taught the patients at our rehab center as well but I switched to everyday as it works better and is more normal for me. Glad to hear that your routine is working out for you!