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45 Posts

Bowel Program Questions

By Chrissy

I've been having a lot of issues, regarding my bowel program and a few other things. Today I went to Kessler, to meet with my physiatrist, in hopes of getting some answers. She gave me a few things to think about, and answered a few question. I'm a C4/C5 complete quad, with no functional mobility. I'm hoping to connect with some other people, with similar injuries, to see if they've experienced similar problems. My main questions revolve BP. I've been experiencing autonomic dysreflexia a lot lately (I have daily episodes-more so on BP days), and have been miserable. Two of the biggest culprits to my daily bouts of AD (sweating, chills, cold sweats, headaches, etc.) are my bowels and the fact that I have hemorrhoids. My physiatrist confirmed that my diagnosis (from before my accident) of having irritable bowel syndrome, CAN still be creating pain, and discomfort I don't feel, however my body interprets as AD. She said even though I have a neurogenic bowel and bladder, the IBS might be creating a lot of my AD. In terms of the chest pain I get, that we haven't been able to determine a cause for, she suspects it's GI related (however did say there is also a chance it's nerve pain). She recommended I follow up with a gastroenterologist to discuss getting an endoscopy, and also recommended I try taking bentyl for the IBS. She suggested I have the hemorrhoids surgically removed, as they can definitely cause AD. She also wants me to get a urodynamics test done, and spoke to my urologist. The other thing she discussed with me is my bowel program. I absolutely HATE having to do it. It is both physically, and emotionally taxing on me. However, my only other "option" is getting a colostomy, and I absolutely refuse to do that. Anyway, the bowel program is very uncomfortable for me, and creates A LOT of AD symptoms for me. I described to my physiatrist how we've been doing my BP (using the dibucaine ointment, with magic bullet suppository and digital stimulation). I explained it can take up to two hours to complete, and that the nurses have to digitally check me multiple times. Every time the nurses do the digital stimulation, it creates AD. I do my BP, every other morning, on a commode. My blood pressure is initially very low (as low as 70/50) and usually rises to normal ranges (100/60). By the time I'm finished with BP, I'm achy, have the cold sweats and very fatigued. I take my shower, and just want to rest for the remainder of the day. It almost feels like having the flu. I hate it. My physiatrist said that my nurses should only be doing two digital stimulations (once initially & once to check if I'm finished). She said, if I require more than that, that I should consider upping my BP related medications (senakot & Colace). I know several people that have BPs and know for a fact that they also have their nurses do the digital stimulation multiple times. I'm hesitant to start messing with my medication doses, because I don't want accidents. She did say that the magic bullet suppository, although effective, is known to create AD. She suggested I try using a product called "Enmeez" and gave me a few samples. She said she had a lot of patients with AD issues that preferred using the Enmeez to magic bullets. I know the nursing agency I use is familiar with Enmeez, because my case supervisor gave me some samples a while back. I'm VERY apprehensive about trying it, only because it is like an enema. I'm not sure how the nurses will be able to administer it, while I'm sitting on the commode, without making a huge mess on the floor. We normally put a pad down on the floor, in front of the toilet, for when the nurses check me. If I start to go, before they push me back over the toilet, it is very bothersome to me. I'm really traumatized by the process. I find having to have help going to the bathroom, humiliating and degrading. I'm so sick of BP in general. I hate needing to do the digital stimulation so often, however I'm not sure how else, we can be positive I've finished going (or if have gone adequately) without needing to do it.. I'm curious to see if the Enmeez with work better, that the way we are currently doing my BP. I'm willing to try. I'm wondering if anyone else with a similar injury, that has to have a BP, would be willing to share their thoughts, based on their experience? I've only talked to a couple of friends regarding their BP, and they said they also need to get "checked" (digitally) multiple times during their BP. I'm wondering if my doctor was wrong, in that respect. I'm also curious to know if anyone has tried using the Enmeez product, instead of using a suppository, and if so how they used it (set up- on a commode, or in bed) and if they found it caused less AD? Any feedback would be greatly appreciated! Thanks :)

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45 Posts

Chrissy says:

Two additional questions: 1-I'm wondering if anyone else who has had a history of hemorrhoids, has had them surgically removed? If so, did you find a decrease in AD episodes, and did the hemorrhoids return? 2-Does anyone with a high level injury also have IBS? If so, have you tried bentyl? I've tried probiotics and the drug "pamine" (prescribed before my accident) and neither helped, or offered relief.

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Frederick says:

Chrissy,

I could go on and on about the bowel program and how it's been over the years, but I don't have a mlot of time right now. For now I can tell you that my experiences with the B.P. have been very similar to yours. I am a C5/6 of 13 years and I too have A.D. with the program, along with hemmorhoids. I think those are almost inevitable with immobility and digital stimulation. Your Doctor is totally wrong if he/she thinks that 1 or 2 dig. stims. will do the job - I wish ! Sometimes it takes me as many as 8 or 10 and the program is 1-1/2 hours long. I gave up using anything, no suppositories or laxatives and just let it happen. I do not have accidents, but when it's time to go I can feel pretty miserable until I get it done. For now, I'm only going about every 6 days because, like you, I hate it so much for all the reasons you mentioned. I'm not sure that going so infrequently is particularly good for me either, but I sure am glad for the days I don't have to deal with the B.P. and can just get up and go to work.

Like I said, I could go on more about this, and if you'd like to discuss it further, feel free to respond to this post. As for A.D., I refer to it as "pins and needles" and with the fear of it always in the back of my mind, I feel as if I live my life on "pins and needles". I have learned, with some degree of accuracy, to recognize the pattern of A.D. as a clue to what might be wrong with me at any particular time, how about you ?

Fred

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3 Posts

Joanne says:

oh my God, you poor thing. Please promise you'll try my way. I am a C 6-7 quad. for 34 yrs now. My routine is simple. I drink 6-8 oz. of prune juice before I go to bed when I'm going to do my BP in the morning. (Like you I do it every other day) I take 2 capsules of Cascara Segrada, which is easily available in any health food store, or maybe even a drug store. it is an herbal supplement that causes the bowels to move, and yet it is not addicting for the bowels like senecot is. I go to sleep and in the morning, I attach my leg bag to my leg first, I lay in bed and prepare myself by turning on my left side, putting a chux under my hip only up to however I can slide it under myself. I take my inserter that I have and put the suppository into it, which is a dulcolax suppository. (the best and most accurate I've used) I don't know what the magic bullet is. I insert the Dulcolax suppository into my butthole, and I comfortably lay there for one hour. Then, there will be the result on the chux to be cleaned up. It might be very liquidy, or not as liquidy everytime you do it, the consistency may be different. That doesn't bother me. I never concern myself with the consistency, just the outcome. Actually, I believe that when I drink 8 oz. of prune juice, I'm confident it will be like diarreaha, but believe me, it comes out easier, and smoother and more fully, and less stress on your body. NO STRESS ON YOUR BODY! Clean up behind you, yes, after all these years I learned how to do it myself including clean up. Then I transfer into my wheelchair and if I get the chills, I hop onto the toilet. If I wait around for a half hour or so, and I don't get the chills, I transfer onto the shower chair, and take a shower. I get out and get dressed and that's my whole routine. So, here are the ingredients:
8 oz. of prune juice
2 capsules of Cascara Segrada
Dulcolax Suppositoy
Chux-as many as needed. I usually only require one for the "result"
Your nurses don't have to stimulate your insides at all. Let the prune juice and theCascara Segrada do all the work, and it will.
If you want to talk with me further on this and any other subject, my email address is jpaul3@socal.rr.com I'd love to know how this works for you.
Do this exactly as I have stated and not mix it with what you're doing. And then see what the results are.

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Claude says:

Hi Chrissy,

I am also a c5c6 since Oct of 2002. I thank anyone who needs help doing their BP will tell you it's one of the worst parts of being paralyzed. When I was released from rehab I had no one but my wife to take care of me. So after being the man of the house for 15 years I now had to have my wife doing well you know. Talk about humiliating!!! Before the accident I was this big macho man that could do anything I put my mind to, but I would not go to the doctor and have an exam done. I’ll be damn if anyone was going to stick their finger in my @#$. Well guess what, as you know it’s a daily occurrence now, there goes that tough guy image. Back in 06 I was fortunate enough to pick up a managed care policy that allowed me to hire a home health care tech. I’ve had the same lady ever since then and thank God every day and night for her. When my wife was doing my digital stem I would do my BP every other day, just trying to lighten the load for her. My tech talked me into letting her do it every day, I feel so much better I’ll tell ya! My friends always told me I was full of s@#t, lol.

Anyway, All of this is done in bed. Here’s my routine: Tech gets here at 6 every morning and rips the sheets off of me (wish I had a women to rip the sheets off of me before my injury, I didn’t say that!). I sleep on my left side every night so she doesn’t have to roll me over to do my IC & BP. She is able to slide my leg over enough to cath me. After that’s done (5min) she pushes my leg back over which allows her to rape (I mean do my BP) me. For the longest time my wife and I followed the Shepard Centers suggested 20 minute time limit. After a year or so we figured out my body and tailored my BP accordingly. What I mean by tailored is, some days I might not have much stool and we are able to stop after 8 to 10 minutes. I always give it 8 to 10 minutes just to be on the safe side. Most mornings she gets out a medium amount the first trip in and that’s it, after 8 to 10 minutes we are done. Other times there is nothing. Sometimes it takes 5 minutes or so of her stem’ing before any stool comes out. And then there are days when the flood gates open and it takes 15 to 20 minutes until I’m empty. We always go 5 minutes after the last time any comes out. The best part about doing this in bed is I get to somewhat sleep through my BP!! After all of the fun stuff is done she lift’s me out of bed and slings me into the tub.

Have you ever tried not using the suppository and just doing the DS? I would be scared of having an accident after I was up and running (I mean rolling of course).

I hope that gives you another avenue to think about. Feel free to write me anytime about anything. We crippled folks got’a stick together!!!!

God Bless You!!!
Nolegs
Over & out

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Chrissy says:

Forgive me for this being all one paragraph, for some reason my iPad never includes the paragraph breaks.... Thank you everyone for the feedback. I know this is an unpleasant topic to discuss. I really appreciate your willingness to share the details of your BP with me :) .......I actually take 5 senakot every night, plus 2 Colace (one in the morning & one in the evening. I eat pretty healthy too, lots of fruit, veggies & fiber. I have prunes nearly every morning with a small breakfast and a salad (or big portion of veggies) with a small dinner. To be honest, I'm so sick of eating prunes! I hate drinking, so the juice is not an option for me. I looked up fiber content in fruits, and see that pears have 6 g & figs have 8g (prunes have 6.5g). I think l'll try alternating between all three....... I'm so fed up, and tired of this lifestyle. I can't bring myself to do BP every day. Every other day is bad enough. I used to have to do it laying down, when I was initially injured, and living in a nursing home. It was very painful on my shoulders, and took much longer. I find sitting on the commode works better for me. Plus, my commode is designed to slide into my tub. I take a nice hot shower after BP, and then pretty much collapse in bed, for the rest of the day. On BP days I feel totally worn out, with chills, fatigue and an overall ache that lasts most of the day. It never used to be that bad, but my tolerance has seemed to get worse & worse. On the whole, my BP has been working well, with few accidents. I completely avoid antibiotics. It's just like I said, emotionally & physically draining........ I'm going to give the Enmeez a try (eventually- I've heard good things about them, from several people that use them on the CareCure forums. The only problem is, they all say it took a while for their bodies to acclimate and for the Enmeez to begin working consistently). If/When I do try them, the worst that can happen,is that they won't work & I'll just stick with the magic bullets. I tried ducolux suppositories, they were useless. I know one is water based, and one is oil based. I'm not sure which is which, but the MB work much better, and faster for me. The ducolux weren't very effective for me. I'm glad to hear MANY people say they need several digital stims. I figured my doctor was a little off, in saying only two times should be enough..... It just so happens that I'm going through scheduling difficulties with my nurses. I'm going to be losing two of my regular nurses for the better portion of the summer The agency is training two replacements, however I'm hesitant to experiment with a new procedure, on top of having to acclimate to two new people. I'm definitely willing to try the Enmeez, but think I will hold off on it, until I'm comfortable with my staffing situation. Someone on the CareCure forums suggested I look into getting the Enmeez Plus. I've got samples of the "plus" and the "minis". I think the only difference is the plus as a numbing agent with it.However, my nurses do use to diucain ointment (to numb the area) each time they do the stimulation..... I hate taking anything with a taste, or that I have to drink. I've tried Miralax, mag citrate, milk of mangnisia, liquid coloace & lactalose. They're all disgusting, and none of them haved work in a consistent, or predictable enough amount of time, to be useful. However, like I said, I do watch my diet & take bp pills (5 sena & 2 Colace) every day. The "option" of getting colostomy is an absolute negative. I've looked into the procedure pretty thoroughly, and as much as I hate BP I'm not willing to opt for another surgery & another bag of bodily fluids strapped to me..... ....In the meantime, I'm going tomorrow to get the procedure done to get my hemorrhoids removed. I'm hoping that will cut down on the AD a bit. I'm also going to go see a GI doctor, get an endoscopy done & talk to him about trying the bentyl, for my IBS. Once I've checked those things off the list, I'll see how I'm feeling & try the Enmeez.

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No Nick Name says:

I thought Joanne had some good advice, particularly in her remarks about prune juice. Try it at bedtime and assess tolerance. Try it in the morning and assess tolerance. Try more than 8 oz. and see how that it tolerated.
I did try Cascara Segrada for a brief time but found it to aggressive. It also caused more inflammation than senna. I've also tried Enmeez and found it less effective than dulcolax suppositories. By the way, "Magic Bullets" are similar to dulcolax -- same active ingredient. Magic Bullets is the trademark brand for a formulation that is marketed as dissolving and acting faster than dulcolax. Again, assess tolerance and results to this med.
Be cautious of a procedure on hemorrhoids. Having them surgically treated now may lead to less control and incontinence later. Get two separate opinions from specialists who have experience with cases similar to yours and who have successful outcomes.

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Derrick says:

Dear Chrissy,
I've been there. Had to have hemmrhoid sugery and still have a few because of BP issues.
After trying pretty much everything that you are tried over the past 12 years, I finally tried Mirlax. Also, I cut out lots of fiber. It was making stool too hard.
I go every other morning. My nurse aide puts a magic bullet while in bed. I waite 5-10 minutes. Transfer to chair and push over the toilet. I'll use an Enemeez, if the "bullet" falls out getting to toilet or if stool seems hard. She puts enemeez in while sitting over commode. Just aim to side with bullet and enema so it touches the wall.(my buddy does this way too but use both magic bullet Enemeez everytime)
Before this, when I just used regular ducolux(sp?) supp., I had to sit for hours and have to be digi stimmed 2-10 times. God, I hated BP days. I still do some.
NOW, I go between 15min-30min. I've only stimmed maybe twice in 6 months. Had some hard stool. Ate too much...
Mirlax does not cause accidents. You have to play with what your amount is. I take 1 capfull, the night after BP. I take 4 senokote the night before.
Fiber is good in limited amounts. I use to eat fiber bars with 40% and just too much. This helped save my life. I hope it can save you too.. I read while on toilet to relieve stressing out. Stress does not help. And NO DOCTORS helped me figure this out. Quads on the Quad mailing list did. Thank God, for Jim Lubin creating it.
I am a complete C5/6 quad with no functions too.

If you call Enemmez company, they sent me free samples and reports/studys about BP.
Everybody is different so, if you try something and it does not work for you-tweak it or keep trying something else.

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Damitched says:

Chrissy, 1) I had hemmorhoids removed by a GI doc that rubberbanded them and they fell off naturally. 2) KY jelly, dig stim, Fleet bisacodyl enema, wait one hour or less, dig stim again to clear the anus, wipe. 3) AD is common but not normally severe. Three bowel mov. a week is common and recommended. 4) Fiber One cereal has up to 10g of fiber per bowl. Fiber caps and tabs only have 500mg per tablet/cap so you need 20 of them to compare.
Good luck, it works for me, a C5/6 quad since 2002.

ps. a combo shower/commode chair is the way to go.

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Chrissy says:

No Nick Name said:

Yes, the only difference between the MB & ducolux is that one is water based, the other is oil based. My physiatrist is the one that recommend I get my hemorrhoids removed, & referred me to a specialist. I'm going tomorrow. I'm wondering how/why you think that getting them removed might create accidents? I know there is a high likelihood that I'll get them (hemorrhoids) again in the future, but am willing to try & remove them, at least once, to see if it cuts back on my AD. The other major complicating factor for me, is the fact that I have IBS. I'm waiting to get an appointment to see a GI. My physiatrist suggested I try bentyl and to discuss it with the GI. I saw my regular doctor today, & he says the bentyl can cause constipation. I'll have to wait & see what the GI thinks.

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No Nick Name says:

Regarding surgery for hemorrhoids, discuss pros and cons with your physicians. is there rectal prolapse? What is the impact of the surgery on the internal sphincter and the external sphincter in the context of a compromised nervous system?
P.S. I forgot to mention Miralax. It is effective.

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jeff says:

my suggestion.
change to every day
stool softners every night
2 magic bullets and 10 -20 minutes in bed.
stimulation with insertion
as your bp rises ad, the bowel moving sit next to a fan.
if u get a bad headache someone has to pull out the bowel or make
sure your bp stays under 200. once the bowels gone
take a shower and check for bowel when u start and finish.

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Chrissy says:

I know this probably sounds melodramatic to some people, but I honestly rather die, than have to go back to doing BP every day. I have daily episodes of AD (chills, cold sweats, chest pain, pins & needles, goosebumps, etc.) on top of low grade fevers almost every night. On BP days I feel flu like, achy and fatigued. My blood pressure runs very low, sometimes when I first get up for BP it's as low as 70/50. By the end of BP it's normally ellivated to a typical range of 90/60 to 100/60. The only time I've ever experienced extreme high blood pressure (and throbbing migraine) was a couple of times my catheter was blocked, or kinked. So using things like nitro paste (which I know works for some ppl) wouldn't be appropriate for my case. I know someone mentioned anti-spam medication,or muscle relaxers. I don't take any. My legs are pretty spastic, but they aren't painful. I choose not to take meds like baclofen because I know it's easy to build up a tolerance to those sort of meds. I try to take the least amount of medication possible.

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Geoff says:

Chrissy,
you said, "The "option" of getting colostomy is an absolute negative. I've looked into the procedure pretty thoroughly, and as much as I hate BP I'm not willing to opt for another surgery & another bag of bodily fluids strapped to me..."
I don't know if you read my other message to you about a month back regarding a colostomy? I had very similar problems that you are experiencing and went for a colostomy as a last resort. My research led me to speak with a number of people, all of whom had only positive things to say about having a colostomy. Now that I have one, I realise that I should have had it done sooner as it has made my life so much better/easier. If all else fails, please consider a colostomy again as I think it could solve many of your problems.
As for "another bag of bodily fluids strapped to you" – most of the time mine is empty. It usually fills at the same time each day and then I have somebody change it (takes 5 min).
I could refer you to a woman there in the USA who I corresponded with a lot when I was deciding whether to have the procedure done. She was very helpful and positive. Let me know if you would like me to pass on her contact details.
I hope it all gets better for you somehow.

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jeff says:

remember the ad is what keeps us aware of our body and especially if we have a problem.
we're lucky to have this. if u pay attention to it u will know what your bp is without
takeing it. keep your ad card with u at all times.
do u have trouble sleeping? if so try either zanax 5 minutes before bed, or try smokeing
a very small amount of pot. forget being bummed out. thats an easy fix. great meds for that.
don't think about dieing. thing about in a couple of years u may get your bowel
function back. bowel,bladder, and sex seemed to be tied together in one fix
jeffrey

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Chrissy says:

@Geoff- not sure if you ever read my blog, but I've explained my reasoning regarding the colostomy in a couple posts. It's definitely not for me. (http://lifeparalyzed.blogspot.com/2011/06/my-life-revolves-around-####.html) ...….@Jeff- yes I have horrible insomnia. For some reason I've got a pretty high tolerance to drugs too :( I'm currently taking 45mg of Remeron & 3mg of Xanax at night for sleep. I've taken that & 4 Tylenol PMs within a few hours of one another (around 11pm) and yet find myself still wide awake around 2-3am. I'm lucky if I get four solid hours of sleep, plus another three hours of sporadic sleep. My dr. has already suggested upping my Xanax to 4mg, but that's the limit. I've tried Ambien, Lunesta & meletonin. None of them worked. Tylenol PM, Benedryl, & nyquil type medicines don't effect me either. I asked my doctor about Valium, he said I should try upping the Xanax frst.

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No Nick Name says:

Humm. I've scanned recent posts. Don't answer this online, but discuss with your physician: When was your most recent urinalysis (UA)? The symptoms I scanned on your posts may also present as a UTI. Request a culture as well in the event your arsenal of meds already includes a preventative dose for common UTIs.

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Chrissy says:

I'm actually in the process of trying to set up an appointment to get a urodynamics test done. I have had them done in the past, through my urologist at Kessler. They always require a full urine work up before them exam. I have a visiting nurse service that does my BP. They also collect my urine specimens & drop them off at local labs. However, I've routinely had issues of the labs rejecting my specimens as "contaminated" even though my nurses use sterile procedures. We specify that the specimen is collected from an indwelling catheter, yet even so, I've had this same issue with several different labs. It's extremely frustrating! My physiatrist urged me to try & get the urodynamics work up done, since my regular physician took me off my Ditripan a few months back. I had been taking Detrol in the AM & Ditripan in the evening for several years now (following my urologist's advice). My regular dr. thought that since my blood pressure runs so low, that the Ditripan could be causing a "vaso-vagal" (spelling?) reaction. It was one of the many things we've tried, in efforts to figure a reason for the chest pressure & pain I get on a daily basis (we've ruled out cardiac, gallbladder, & pulmonary embolism as well). I haven't noticed any difference in a decrease, or increase in my AD, fevers & chest pain since going off the Ditripan. As far as UTIs go, I have a pretty good sense of when I have one. I feel even worse than I normally feel. The daily chest pain, cold sweats, aches & fevers have been going on for well over a year. It feels like I get sicker, and have felt worse as time has gone by. My tolerance for sitting is poor, and BP days really take a lot out of me. I have had a psychiatric evaluation done & the psychiatrist ruled out clinical depression. She agreed that my physical issues are vast, and complicated. A lot of my feelings are matters of conviction, and what I consider to be a quality life. In my opinion, living with a high level complete SCI is a low quality of life. Having IBS & a high level SCI has made my life hell. I'm so tired of the chronic illness & putting up with awful treatments, just to extend a low quality life. I feel like I'm at a point where living this way, is just extending my own suffering. I've tried a million different medication changes, watch my diet, have done numerous tests (xrays, cat scans, bloodwork, ultrasound). I'm at my wits end with living with paralysis. I'm trying a last few attempts to improve what quality of life I have, by getting the hemrhoids removed & seeing a GI. I'll even do the urodynamics if the lab will cooperate with me. However, I've been living in this body, this way for six years now. I'm a realist. Reality it, there isn't much I can do to improve my life in truly profound ways. No matter what, I'm going to need a catheter, bowel program & to deal with AD. That is my reality, if I choose to continue living with paralysis. Frankly, I'm very tired. I've already created a DNR, created an advanced directive & have spoken with my friends & family. I no longer wish to be hospitalized or take antibiotics. Yes, I'm trying to see if I can improve what time I might have left; I'm not a masochist. On the other hand, I'm at the point where if I do get sick, from infection, my body is going to fight it, or it's not. If the situation presents itself to me, to leave this life, I'm riding the train out. I'm at peace with my decision & am sticking firm to it. My loved ones & medical staff know my wishes (also one of the reasons I needed to get a psychiatric evaluation done, was to be declared mentally competent). The truth of the matter is, there aren't many answers or solutions for me. I'm stuck, take it or leave it. I don't see the sense in sugar coating it, and I'm not one to keep clinging on to "what if." I can't live in the past, and I can't live for a future that might never come (aka a cure). I can only live for today & try my best with what I have right now, in this moment. I'd welcome a cure, but I'd also welcome death. I'm just tired of being stuck in the middle, uncomfortable, with few answers.

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Chrissy says:

Mr. Muse said:

Chrissy,
People gave you a lot of personal advice, myself included, and you have totally failed to acknowledge it, and in fact, sound like you're on a real self-centered downer. I'm sorry to say but, your type of ego rips-off people's energy. ciao and good luck!

I've read everyone's advice & appreciate everyone's feedback. That said, what works for one person might not work for another. I'm not sure if you have IBS to contend with, on top of having a SCI. I highly doubt you have a menstrual cycle,or half the other issues I've had to deal with. I'm not saying everyone with a high level spinal cord injury should want to die. I can only speak for myself, my body, my experiences. I don't live in your shoes, & wouldn't begin to presume to tell you how you should, or shouldn't live your life. I HAVE sought out advice, tried many things (and continue to explore options- like the hemorrhoid removal). Stating facts doesn't necessarily mean I'm being negative. I'm just being honest. There aren't solutions to every problem. That's a fact. It has nothing to do with being a downer. In fac, it's called acceptance. I've accepted my situation for what it is,and my realistic limitations. I dont think you have the right to tell me how I should live, or vice versa. All I'm trying to do is gather information, and see if there's things I haven't yet tried. Admitting that I have few options is a fact. Its my body, and I'm the one living in it. I don't think it's self centered, to say what works for me, and what I am willing and not willing to do. I value the insight other people have given me, but every case is unique. At the end of the day I need to assess my overall situation & do what works best for me. It's not about pleasing other people. Other people don't have to live in my skin. I think I'm entitled to ask for advice. It doesn't mean I'm going to try every & all suggestions mentioned. That's not being rude. That's just practical, common sense. I don't see how my choice to do, or not to do something impacts you, as the advisor. I'm going to follow through with the things I'll think will be most beneficial (like getting the hemrhoids removed & seeing a GI). Other than that, I've already tried many of the suggested mentioned & they didn't work for me in the past, so why would I waste time on trying them again? I think I've given many reasons for why I don't want to try certain methods, what I have tried in the past & am currently experiences. I don't think I should have to justify why I want, or don't want to do certain things with my own body. I'm just trying to gauge what's typical. From everything I've read, my BP is pretty typical. I'm already, or have already tried most of these suggestions. Saying they haven't worked isn't a personal critique on the person giving the advice. I'm just stating facts, based on my situation. For instance, the fact that most people have multiple stims done, helped me to determine that it's normal, and not just my body. Not wanting to do BP in bed, or get a colostomy are personal choices. I have the right to make those choices, and it has nothing to do with ego, or judgement. If that works for other people, more power to them. It's not for me.

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Damitched says:

Mr. Muse,
Don't pretend to know anything about the health field. You're a counselor, with no knowledge of the medical field of which I am qualified. Stick to what you know and stop telling others that Dr.'s are, what did you call us, "nimcompoops". If your only advice is counselling, fine, but end it there. Don't try to be any smarter than you are by offering bad advice. GREAT WORK Mr. Muse in making yourself look like a fool on this site. Good luck on your career.

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Chrissy says:

Mr. Muse said:

Chrissy -
Look, I apologize for ripping into you. I just get frustrated with people who siphon-off other people's energy without giving it back, if only in word. Maybe I expect too much: that my weaknes and flaw: high expectations.

I'm very weary too, of reading and rereading your complaints. I have an MS in counseling: you need it on a few of levels.

Types of Counseling You NEED
1) nutrition
2) vitality for life! (The JOY Of Living)
3) any bad habits, like drinking or smoking or drug use? They're real Light robbers
4) interpersonal
5) maybe vocational

I know we see things differently, and you think you've "tried everything," but believe me, you haven't. From what I've read, you are loading up on pharmaceuticals and you're actually CONTRIBUTING to your own ill-healh by following doctors' orders. They are nimcompoops and you're following every misguided breath they utter. From one quad to another::: go to "mercola dot com" (if ya know what I mean) and get acquainted with your future. Best wishes.

Not a problem. Everyone is entitled to their own opinion. As far as me trying things, and being open to suggestions, within the last six months I've consulted with my regular MD, a rectal surgeon, my physiatrist, a psychiatrist, gynocologist, palliative care consultant and do see a licensed counselor on a regular basis. I have many physiological issues that are complicating my life with paralysis (namely my menstrual cycle & IBS). I have extremely low blood pressure, have been treated for anemia and do eat a healthy, fiber rich diet of fruits, veggies and protien (like fish, turkey, chicken & beans). I'm 5'6" and 120 lbs. I HAVE been trying to pinpoint causes for my chest pain & fevers and have done countless tests to rule things out. .... You (and others on this forum) may or may not agree, but I don't feel MY life is a high quality life. I hate living as a high level, complete quadriplegic. Before my accident, I was living on my own, and was a very independent private person. I loved my career as an art teacher, and enjoyed the physical aspects of my job. Living with paralysis has forced me to accept help, and have a constant violation to my personl space. I hate having to have people clothe, bathe & feed me. Bowel program & needing a catheter are the two things I hate most. There are aspects of this life that I have to deal with, that no man can ever understand (like menstration, pregnancy & motherhood). I'm not saying this life is not worth living for others. I can only speak for myself. Everyone has the right to determine what is, or isn't a quality life for themselves. I don't judge anyone for choosing to live this way, and don't feel it's fair for anyone to judge me, or expect to accept certain things, just because paralysis offers no other choice. There is always the choice not to accept help, and that is my right. You don't have to like it. Likewise, you don't have to live my life..... In terms of giving back, or contributing to society, what makes you assume I haven't/don't? Since my accident, I petitioned the school district I had been teaching for to return to work. They denied my request, on the basis that they couldn't afford to provide me with an instructional aide. I have a B.A. In Fine Arts, with some graduate study in painting (from before my injury). I have continued to paint (by mouth) and exhibit my artwork. I'm a member of the AMFPA. I write a blog, and maintain a website dedicated to raising awareness for spinal cord injuries & paralaysis. I've sat for countless newspaper articles, and have written as a guest blogger for several other writers. I've done two television interviews, and worked with the CDRF to create instructional videos on adaptive technology. I've created digital artwork for several art foundations, in hopes of raising awareness. Please don't accuse people, or assume things unless you have all the facts.... I've been trying my best for six years. However, I'm tired. I believe quality of life is more important than quantity of life. I have the right to decide what's best for me. Personally, I don't feel that it is right, or necessary to go to ALL & any means necessary to preserve life through artificial means; especially if those means only prolong suffering.

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Chrissy says:

Mr. Muse said:

Chrissy, you would cast all of your fame and glory asunder --in public, because of some chills you get while performing your bp? That's the "loser" that gnaws like a rabid rodent upon my sensibilities. I'm a believer in the "tough Love" approach to progress, but also believe people need guidance and a helping hand. You knw all of the abbreviations of this and that, but your own soul and where it wants you to go, is alien to you, and to all of us too; because we cannot guide you to your "place in the sun," its frustrating for all.
go as natural and organic as you can --- end of lecture!
-------- Musing On

I wish my problem was just some occasional chills during BP. For the last two years my health has gotten worse & worse and my doctors can never give me any good solutions or relief. On BP days I have AD (cold sweats, chills, nausea & discomfort) during the process. However afterwards, I'm usually wiped. I'm achy all over and completely fatigued. Almost every day I have bouts of chest pain (tight squeezing & build up of pressure) and nearly every night I run low grade fevers (99-100). My doctors are baffled by both & have done lots of tests (EKG, bloodwork, CAT scans, xrays & ultrasounds). Among all the specialists I've seen, they have concluded it could nerve, or bowel related. Ive tried probiotics, Gas-X & Beano to attempt to see if it could be gas, or bloating and none of them made any difference. To make matters worse, the week I get my period I feel like I have the flu. I'm extremely fatigued, have AD and nausea. I've tried taking Motrin & Pamprin, they don't help. I also suffer from bad insomnia (even though I'm often fatigued- I have trouble sleeping). I've tried Ambien, Lunesta, meletonin, Tylenol pm to no avail. I currently take Remeron & Xanax, at bed time, but still have trouble and wake up often. I've sought psychiatric help, to rule out mental disorders. My doctors (including the psychiatrist) say I'm mentally sound, with no signs of clinical depression, or any other mental illness. I'm just stuck in a shitty situation, with extreme physical limitations & many medical complications. I'm tired of needing help & tired of being sick. I feel justified in my reasoning & feel satisfied with the amount of time, & effort I've invested in trying to make life with paralysis work. I'm still willing to try a few more things, in hopes of improving my quality of life, but I'm also a realist & know I can't keep living this way indefinitely. That's my right. I'm trying to keep moving forward, one day at a time for my loved one's sake. However, there are limits to what I'm willing to do, and to the compromises I'm willing to make to extend this life. I'm not going to try to explain myself any further than I have. If you're interested check out my blog (lifeparalyzed.blogspot.com). Thanks again, to everyone who shared their opinions & feedback.

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Mr. Muse says:

Hi Again --- so, do you use tobacco? If so... that'll keep one up nights...

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Faith that the thing can be done is essential to any great achievement. ♥

-- Thomas N. Carruther

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Chrissy says:

I don't smoke or drink. I also don't believe God did this to me. I ended up paralyzed by making a stupid mistake. I think if there is a God, he/she gave us freewill. I just screwed up, and am paying a high price. However that's a WHOLE other topic, I rather not get into here...

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Geoff says:

Hi Chrissy,
I read all of the concerns you have about colostomy procedures, et cetera, posted on your blog of June 19. Seems like you have discovered all the worst-case scenarios and made up your mind that that is the norm. I can only tell you what I know from my own experience, but I have experienced virtually none of the problems you raise. I have had one accident in four years since having the procedure and that was my own fault – won't happen again now I know what to avoid. I have never had to clear mucous from my butt. I am the same level as you so someone has to change my bags, but that is a million times better than your BP. I don't fart out of "two holes" as you suggested – that would be impossible. Granted, a fart noise from your side can be embarrassing but it's a hell of a lot better than sweating it out all day with AD. Surgery wasn't a problem, surely they put you under in the USA? You wake up and it's finished! If you get a good bag then you don't have accidents and it never falls off. Prior to my procedure, I had constant sweating and couldn't do anything. Now it never happens. Sounds like you've made up your mind though so this seems futile.

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wanda says:

Hi Chrissy? God Bless you. I was just reading your blog. My name is Wanda and I live with my boyfriend Jeffrey of 6 years. Jeffrey was involved in a diving accident when he was 15 yrs of age. I met him when I was 30 and he was 32. 6 years later here we are. Through trial and tribulations, we discovered a couple things. A friend of ours told us that she drank a tea called, "smooth move" by Traditional Medicines. That, coupled with Benefiber the night before. Jeff does not require the use of digital stimulation. He wakes up the next morning and I or a family member, put him on his shower chair and insert the Magic Bullet. Chrissy try this, as I see others have given you very good tips as well. The AD is something that might be less frequent. You should frequently check the air pressure in your chair, check your shoes/feet, angle, the temp in the room ect. Sometimes when Jeff gets AD he has improper positioning, then I re-position him and he is fine. He still has his days, when either he has a UTI or is constipated. Chrissy I know that I'm just Jeff's girlfriend, but I truely love him and because I am very active in understanding what it is that I can do to help him live a full and healthy life, it has brought me to this website, where I can meet people like you. Whom I can add to my list of prayers and share what I have learned through Jeff. God Bless I hope this is helpful.

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