need advice for getting bowels back on track

[ScottS]

ok, I've posted MANY times about my abdominal pain. Here's a broken down timeline of how i've gotten to where i am today. understand that it's easy to say "why did you do that?" when looking back at my situation, but hindsight is 20/20. at those moments in time i was looking for what might work and seemed reasonable to do. i personally can't believe how many stupid things i've done and for how long i did them. regardless, i'm feeling horrible and need some suggestions...


Up to 12/04 NO problems, minimal spasms/tone/etc. I’d been doing every day bowel care using dig-stim & manual evacuation.
1/05 Seemed like some irritation started, but minor. Things went fine for the most part. (coincided w/ neurontin change to a generic--Ivax)
4/05 Impaction, 3 day VA inpatient stay to do PIE machine & get cleared out. Discharged w/ Rx for senna 2x/day, bisacodyl enema every day. I questioned everyday enema, they said it’s ok.
5/05-9/05 abd pain, irritation, etc, consistently day-to-day. KUBs, renal scan, kidney US, CT, ALL THE TESTS possible, no diagnosed problem
7/05 neurontin generic changed again--Purepac, I noticed more irritation.
9/05 Colonoscopy, no diagnosed problem. I reduced senna to 1x/day, noticed improvement after a few weeks, then discontinued using it.
12/05 Started doing enemas less often, things stayed the same.
2/06 Gallbladder removed, no benefit.
3/06 found 3 week stash of Ivax neurontin, things felt a little better. VA won’t switch for me, insurance gave me the runaround. Had to go back to Purepac’s version.
4/06 started doing longer periods of dig-stim hoping it would help. Seemed to get more constipated so started taking milk of mag & mag citrate fairly often to clear things out (avg 1.5x per week). Consistently got worse. Lots of accidents, too.
8/06 Finally able to get namebrand neurontin. Things felt a little better.
12/06 KUB showed I was mostly empty. It dawned on me that that was why I was having trouble getting decent sized results from bowel care (duh!). All the laxatives & dig-stim were doing was overstimulating my bowel. Meaning my pain was due to that, not due to constipation. I very quickly got back to my pre-4/05 regimen: every day bowel care using manual evacuation and minimal dig-stim. Things got much better but still had lots of bad days. Lots of accidents, too.
3/07 Switched to every other day bowel care, pain got a little better. Less accidents.
8/07 Stopped doing bowel care (seemed like less and less was making me better). Felt a little better, but every 3-4 days a HUGE stool comes out after transfer to shower chair. No exaggeration—it would be about the size of a can of tennisballs, moments later one the size of a can of racquetballs would come out. Things would feel a little better, but not much. Hemorrhoids got bad, of course.
10/07 Started doing every other day bowel care w/ gentle dig-stim. Haven’t had a bowel movement in 7 days. Ordered magic bullets but may use an enema tomorrow. Strange that doing dig-stim gets no result while doing nothing gets HUGE results.

my big concern is my overuse of laxatives (magnesium products and enemas)...have i ruined my bowel or can i retrain it eventually? the excessive dig-stim really seemed to screw things up, would that have a similar long-term negative effect as over-use of laxatives? every test has been done, there is no diagnosable problem, including megacolon. no permanent damage. recent KUBs confirm this.

where do i go from here? i'm planning on trying magic bullets when they arrive in a few days...

[SCI-Nurse]

HI Scott,

It's hard to say exactly. Good thing there is nothing serious diagnosed by xray, etc. I would try to start over. Start with magic bullet either every other day or 3x weekly. If unsuccessful alone, add dig stim on the same days as magic bullet. Make sure you have adequate water, fluids and fiber. Expect some adjustment period with some occasional accidents. Try adding a daily stool softener such as colace if needed. Goal should be a bowel movement every 2 days.

Keep us posted.

AAD

AAD

[ScottS]

Originally Posted by SCI-Nurse

It's hard to say exactly. Good thing there is nothing serious diagnosed by xray, etc. I would try to start over. Start with magic bullet either every other day or 3x weekly. If unsuccessful alone, add dig stim on the same days as magic bullet. Make sure you have adequate water, fluids and fiber. Expect some adjustment period with some occasional accidents. Try adding a daily stool softener such as colace if needed. Goal should be a bowel movement every 2 days.
AAD

forgot to mention, i take 3 250mg stool softeners per day, drink 1.5-2 liters of water per day, and eat a high fiber diet. i also take
80mg baclofen
1800mg neurontin
10mg oxybutynin xl
approx 1.5-2 vicoden per day

[SCI-Nurse]

The vicodin, as I'm sure you know, can be very constipating. Sounds like you are doing the other diet/water thing right. That is good.

AAD

[chick]

Hey S -

Just some quick questions I have, before I get back to this with a more thorough reply...

- when was your accident/injury?

- how long were things (bowel prog.) working fine before trouble started? and were there no change whatsoever in diet and/or BP, or any other routine, other than neurontin change to Ivax in '05?

- seems irritation was/is triggered by Neurontin changes - Ivax (1/05) and Prepac (7/07). I think neurontin is associated with constipation (and possibly other bowel issues?). Have you checked this out, and monitored further if any other symptoms are related to use and/or changes in meds (types/doses).

- diet/fluids look good. but have there been any changes with diet (amount intake and times eaten) during this period (from before problems 12/04, and any time between 05-present). Keep a food diary? maybe keep a written diary of medication and bowel program effects - from methods to exact results, and noting any other effects experienced.

- dig stim seems to trigger problems - from pain to type of results seen, incl. no results. How is dig stim done (by pca)? eg. # of fingers used, how deep inserted, and frequency (how many min. between stims)...
also, does pca have nails?
*just some ques. to see if there could be anything triggering trauma and irritation, that might also be effecting sphincter (response).

[ScottS]

Originally Posted by chick

- when was your accident/injury?

4/26/02, @ 26yrs old. never had a bowel problem in my life pre-injury.

Originally Posted by chick

- how long were things (bowel prog.) working fine before trouble started? and were there no change whatsoever in diet and/or BP, or any other routine, other than neurontin change to Ivax in '05?

in the 3yrs prior to the start of these probs, i was maybe constipated 2-3x, had a 6 month bout of cdiff (relapsed 4x, 8/03 thru 2/04), and that's about it. i'm pretty sure my system is slow, and is the #1 source of all my spasms/tone.

Originally Posted by chick

- seems irritation was/is triggered by Neurontin changes - Ivax (1/05) and Prepac (7/07). I think neurontin is associated with constipation (and possibly other bowel issues?). Have you checked this out, and monitored further if any other symptoms are related to use and/or changes in meds (types/doses).

i did a wild goose chase w/ neurontin a year ago. it's not ~supposed~ to cause constipation based on drug info. everyone's different though, of course. approx 6 months post injury i was put on it and it reduced my tone/spasms. a few months later my dose was doubled and it significantly reduced tone (i had VERY bad tone/spasms) so i loved it. when it changed from namebrand to Ivax, i didn't notice much. only looking back later did i see that the changes coincided, but i'm not convinced that it's not coincidental. Purepac version was obviously worse & i noticed it soon afterward. switching back to namebrand 8/06 helped a lot, but i was also doing the (stupid) extra dig-stim at that time, so i think that masked any benefit. i'm considering weaning off it, but don't want to do too many things at once, of course.

Originally Posted by chick

- diet/fluids look good. but have there been any changes with diet (amount intake and times eaten) during this period (from before problems 12/04, and any time between 05-present). Keep a food diary? maybe keep a written diary of medication and bowel program effects - from methods to exact results, and noting any other effects experienced.

only very minor changes. i do eat less now b/c pain, but that's about it. did a food diary for months w/ no connection to probs. tried lactose-free diet, gluten-free diet, etc, no benefits. goose chase w/ neurontin included med diary. i'll have to start fresh w/ diary of meds/bowel program effects/methods. i've kept my meds minimized and consistent since 1/07, though, only changing bowel program methods.

Originally Posted by chick

- dig stim seems to trigger problems - from pain to type of results seen, incl. no results. How is dig stim done (by pca)? eg. # of fingers used, how deep inserted, and frequency (how many min. between stims)...
also, does pca have nails?
*just some ques. to see if there could be anything triggering trauma and irritation, that might also be effecting sphincter (response).

dig-stim definitely does cause probs, which is why i've nearly completely avoided it since 1/07. pca does it, has no nails, 1 finger to open up/relax anus, then a 2nd to reach and scoop from rectum for manual evacuation. stim used to be done directly on inner sphincter up inside rectum. since 1/07, simply open anus and gently press on inner wall of rectum side to side, front to back (north-south-east-west).

anything that stimulates my bowels internally (swallowed laxatives) causes big probs: senna, prunes, milk of mag, etc. But dig-stim, enemas (rectal laxatives) don't seem to be so bad, except that doing them everyday for the extent i did seemed to have a lingering effect. when i stopped dig-stimming 1/07 it seemed like my bowels continued moving fast for quite a while. so i've been trying to calm things down. that's why a while back i considered fasting or other "out-of-the-box" type things to get a grip on my situation.

again, your help is appreciated. hopefully KLD will chime in, too. my biggest concern is my overuse of laxatives. was it too long of a time period to where i ruined my bowel or will it recover? it was about 6 months of senna, 6 months of enemas nearly everyday followed by 3 months of enemas every 3-4 days, and 6-8 months of overly dig-stimming. not all these were overlapping.

[DougM]

I have problems getting back on schedule if I take too many stool softeners. I'm better off if the stool forms normally. The magic bullets don't seem to work as well for me with stool softeners.

[chick]

Originally Posted by ScottS

forgot to mention, i take 3 250mg stool softeners per day, drink 1.5-2 liters of water per day, and eat a high fiber diet. i also take
80mg baclofen
1800mg neurontin
10mg oxybutynin xl
approx 1.5-2 vicoden per day

I missed this earlier.
You said you are going to try weening off Neurontin. Plans on decreasing/stopping any other meds, you might be ok without?

You are right, about taking things 1 step at a time, especially if making any changes.

I'm curious about use/function of your meds:

• does baclofen and neurontin serve the same issues? eg. spasms, tone? Neurontin also helps with pain, I assume? (I'm not clear on all it's purported benefits).
• Vicoden is for pain too?
• bowel specific meds:
  • stool softener - is this peri-colace?
  • what type of enema are you using? bisacodyl or other stimulant inserted directly into rectum?

Let's see what might be best to stop first.

I think laxatives would be good thing to stop, before stopping medications you use for pain, etc.

• Stopping (excessive use of) laxatives may minimize/eliminate certain pain you experience, thus possibly reducing need for some of the other meds you take (esp. pain related). If so, then those other meds may be next to be reduced/eliminated (depending body response)
• Laxatives can disrupt digestion and contribute/cause abdominal pain:
  • making it more difficult to eat as you should/need, particularly those foods that aid digestion and passage thru intestines/colon - fruits, veggies, whole grains, etc.
  • these foods help speed digestion and pass waste thru your system faster.
  • despite eating relatively well or correctly, given you situation, you did state that you eat less than before when you had no problems - so you may be not as nourished as you may think, nor getting the amount of foods (nutrients and roughage) as your body needs, particularly to aid digestion and intestinal tract.

Let us know when you try the magic bullets. Maybe start with half. Whole bullet for me causes abdominal cramps for me. I don't know your specific routine, but I suggest:

• While lying on side (so MB has time to fully dissolve and absorbed before you sit up, so it doesn't come back out) - Before inserting MB, try gentle dig stim to manually evacuate any stool present.
• Then insert half MB. * Check time and effects. You might sweat or feel slight AD, esp. if stool is firm and trying to pass thru. I don't think that is much to be concerned about, unless it is excessive.
• after you get some results (approx after 15-30 min?), get in commode to finish program.
• Wear binder
• Drink some warm liquids (warm water, tea, or coffee), and try some toast or fruit.

One more thing - you mentioned doing your BP whenever you felt like need, or whenever a pca was available/able to do it, therefore alternating from a.m. to p.m., and number of days between? Can you try to make it more consistent, so body becomes more adjusted to those times and more regulated? You may not feel a 'need' to go, especially at first, but having body regulated and maintaining a consistent routine/time, can be especially beneficial for those of us who can't fully control our bodies and are dependent on others to help. You body should respond to time/routine change and behave accordingly (we hope!).

Body is pretty resilient, so let's hope that laxative use did not do any permanent damage. Since your tests have not found any damage, you should be ok, once body adjust to these new changes and gets more regulated. It'll take some time... bleh... but let's take it slow and make changes incrementally.

I might not be able to get back here to post for week or so, but I'd like to keep tab on ya, see how things are going. So if you want/need to chat about what's going on or have any questions about what I've posted so far, get in touch anytime. PT me your email and I'll send you my contact info.

[ScottS]

Originally Posted by chick

I missed this earlier.
You said you are going to try weening off Neurontin. Plans on decreasing/stopping any other meds, you might be ok without?

I'm curious about use/function of your meds:

• does baclofen and neurontin serve the same issues? eg. spasms, tone? Neurontin also helps with pain, I assume? (I'm not clear on all it's purported benefits).
• Vicoden is for pain too?
• bowel specific meds:
  • stool softener - is this peri-colace?
  • what type of enema are you using? bisacodyl or other stimulant inserted directly into rectum?

i just meant stopping neurontin is something i've considered, not that i'm trying to do it. it doesn't do much for my pain, but helps my spasms/tone. baclofen helps the spasms/tone, too. vicoden does nothing for my pain, but seems to calm spasms slighty for a few hours (prbly b/c it slows the bowels). stool softener: yes, technically docusate is what the bottle says, but same thing (i think). enema is fleet bisacodyl. http://www.medicalsupplygroup.com/Di...ductID=1001438

Originally Posted by chick

I think laxatives would be good thing to stop, before stopping medications you use for pain, etc.

• Stopping (excessive use of) laxatives may minimize/eliminate certain pain you experience, thus possibly reducing need for some of the other meds you take (esp. pain related). If so, then those other meds may be next to be reduced/eliminated (depending body response)
• Laxatives can disrupt digestion and contribute/cause abdominal pain:
  • making it more difficult to eat as you should/need, particularly those foods that aid digestion and passage thru intestines/colon - fruits, veggies, whole grains, etc.
  • these foods help speed digestion and pass waste thru your system faster.
  • despite eating relatively well or correctly, given you situation, you did state that you eat less than before when you had no problems - so you may be not as nourished as you may think, nor getting the amount of foods (nutrients and roughage) as your body needs, particularly to aid digestion and intestinal tract.

Let us know when you try the magic bullets. Maybe start with half. Whole bullet for me causes abdominal cramps for me. I don't know your specific routine, but I suggest:

• While lying on side (so MB has time to fully dissolve and absorbed before you sit up, so it doesn't come back out) - Before inserting MB, try gentle dig stim to manually evacuate any stool present.
• Then insert half MB. * Check time and effects. You might sweat or feel slight AD, esp. if stool is firm and trying to pass thru. I don't think that is much to be concerned about, unless it is excessive.
• after you get some results (approx after 15-30 min?), get in commode to finish program.

• what about accidents during the transfer? seems risky.
  

  Originally Posted by chick

  Wear binder

  causes a backache so i stopped years ago, well before these probs started.
  

  Originally Posted by chick

  Drink some warm liquids (warm water, tea, or coffee), and try some toast or fruit.

Originally Posted by chick

One more thing - you mentioned doing your BP whenever you felt like need, or whenever a pca was available...

i was just saying the need would happen anytime, but they weren't available. i only do my BP every other morning.

Originally Posted by chick

/
Body is pretty resilient, so let's hope that laxative use did not do any permanent damage. Since your tests have not found any damage, you should be ok, once body adjust to these new changes and gets more regulated. It'll take some time... bleh... but let's take it slow and make changes incrementally.

I might not be able to get back here to post for week or so, but I'd like to keep tab on ya, see how things are going. So if you want/need to chat about what's going on or have any questions about what I've posted so far, get in touch anytime. PT me your email and I'll send you my contact info.

[chick]

Well, plans changed so it's not a week before I post ... and so I've been a postin fool today

Just thought about this Diverticulitus, as something to look into, if not already? States that it is usually Dx's by a CT scan.