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 around my BP. I've posted this on the Care Cure Forums & CDRF forums. I figured between those two sources, and my blog readers, I might be able to get some feedback, from others in my situation. It's not that I don't trust my doctor's advice, it's just that making suggestions, & actually living it, are two different things. What sounds practical on paper, isn't aways the case, in reality.
Anyway, here's what I posted:
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?
1- 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.
2-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?
3-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?
4-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.
Any feedback would be greatly appreciated! Thanks :)
Showing posts with label IBS. Show all posts
Showing posts with label IBS. Show all posts
Tuesday, June 21, 2011
Sunday, June 19, 2011
My Life Revolves Around Shit
Many of you that read my blogs, know that I struggle A LOT with bathroom related issues. Thanks to my accident, I've been living as a high level (C4/C5 complete) quadriplegic, for the last six years. I have no functional mobility whatsoever, and rely on help for EVERY aspect of my daily life. To complicate matters, I have a diagnosis of having irritable bowel syndrome (IBS), since before my injury. I'm honestly not sure if my IBS is still (considering my injury has left me with a "neurogenic" bowel and bladder) contributing to my daily woes, and discomfort, but am anxious to get some answers.
My regular doctor, and doctors I've seen at the hospital, only ever postulate and hypothesize, based on my theories, and descriptions, but never seem to have clear cut answers, or definitive reasons for why I'm so uncomfortable, and sick, so often. I realize that the fact that I can no longer directly feel what's causing my symptoms, makes it difficult for my doctors to draw conclusions, or pinpoint things, but honestly I feel like the vast majority of the time, they can't give me answers because they don't understand the nature of spinal cord injuries, and its effects on the body in general. I feel like, most times my doctors are treating me, like they would the average able-bodied person, and that is why I'm not getting any answers, or finding any relief. I'm not average, and my body no longer works according to the "normal" rules of science.
My spinal cord injury has severed the connection between brain and body. The messages I do receive are messed up, mangled and chaotic. When my body experiences pain or discomfort below my injury, it responds by signaling me with autonomic dysreflexic (AD) symptoms. AD symptoms vary (headache, sweating, chills, cold sweats, tingling, phantom pain, chest pressure, muscle spasms & fevers), but on the whole, I've come to recognize them, and have a handful of common known triggers. AD episodes can be life threatening, because quite often, my body reacts to pain I can't feel, by elevating my blood pressure. The elevation in blood pressure, is what creates the secondary symptoms, like sweating, headache and chills. When I begin to feel symptomatic, I know to ask for help, to try and alleviate the cause of the pain (such as my catheter being pinched, or my clothing being wrinkled). Gone unchecked, and unresolved AD can lead to stroke and/or death.
Unfortunately, one of the biggest causes of AD for me, is my bowels. I am stuck in a vicious cycle, of never ending discomfort, and pain. My spinal cord injury, and my paralysis have made me a literal prisoner to my body, and its needs. I must eat to survive. Likewise my body must expel waste. Normally, it's not something the average person puts much thought into, or has cause for distress. For me, I feel as though I have become a slave, and prisoner to the simplest of bodily functions. There is no escaping it. It has become so troublesome and uncomfortable for me, that something that is normally simple, private, and in the back of the mind, has instead become the center for which, my life revolves around and is dictated by. It is awful.
My paralysis leaves me with so few choices, none of which are pleasant. I must eat to live; that is a given. I must go to the bathroom; that too is a given. However, nothing in my life is that simple, because I cannot do anything on my own. I need help for everything, including eating and yes, even shitting. For the past six years, I've endured having a bowel program (BP), in order to get rid of the waste I must expel, in order to keep living. It's an awful ordeal, that involves a nurse manually removing stool from body, every other morning. Since I no longer feel the sensation of needing to "go," or the ability to bring myself to the bathroom, or even the ability to "push" it out, those ordinarily natural processes must be FORCED into action.
In order for me to go to the bathroom (shit), my nurse needs to insert a suppository, and digitally stimulate my rectum into going. I'm forced into sitting, strapped to a commode for one to two hours, while my nurse manually stimulates, checks, and rechecks my colon, every ten to twenty minutes, depending on how quickly I go (depends on amount, and consistency). Although I can't feel the digital stimulation directly, it creates AD symptoms. The process is both physically, and emotionally taxing. Every time my nurse checks me, it sends a chill up my spine, creates goosebumps, sweating, and discomfort (sometimes accompanied by chest pressure and nausea). On top of which, my overall condition and constant stimulation, has created chronic hemorrhoids. Again, even though I don't feel the pain of the hemorrhoids directly, I'm positive they contribute to my daily bouts of AD.
The frequency of having a bowel program, depends on the individual. When I was initially injured, I had to have it every night (policy at the nursing home I lived at). They made me do it in bed, after my showers, laying on my side. It was disgusting, painful (for my shoulders) and I hated it. Since moving to my own place, I switched to having it done every other morning, on the commode (over my toilet). Although it has been a big improvement, being able to do it over the toilet (in the privacy of my own bathroom- as opposed to in a bed, in the same room as my roommate) and before getting showered, it is still uncomfortable, and far from ideal. Needing to have ANYONE help me in the bathroom, or with personal hygiene has been horrific, and has never gotten any easier to deal with.
Unfortunately, I don't think I could get away with having it any less than I already do. I know a couple of people (with similar injuries) that do their BP every three days. I wish I could do that. The thing is, I suffer from AD symptoms every day; having several episodes each day (sometimes the symptoms last for hours- like sweating, chest pressure and chills). I've already ruled out a million more serious possible causes, through testing (EKG, ultrasounds, CAT scans, blood work & X-rays). Ninety five percent of the time, I have someone check me for visible problems, and we come up empty. That leaves me thinking that most, if not all of my AD is caused by something to do with my lower hemisphere. I know for sure that my hemorrhoids and gas are two big culprits; neither of which I can do much about.
I wonder if my IBS still has an impact on my body. No one has been able to give me a definitive answer. I'm going to see my physiatrist on Tuesday, in hopes of getting some clear cut answers. I know when I was on my feet, I went to the bathroom every day (sometimes several times). If my colon is still spastic, it could certainly explain why I'm dysreflexic so often. That said, even if she tells me, "Yes Christina, your IBS could be creating AD and offer an explanation as to why it's been so difficult for you to regulate your BP" it doesn't really offer me any relief. I don't know exactly what I expect for my physiatrist to tell me, except if my theory is right, or wrong. Either way, I'm pretty much stuck with the situation I have. I guess I just want to hear her say (essentially) whether I'm screwed, or not, and if she has any suggestions that I haven't yet tried (doubtful).
I've tried taking probiotics to help with my IBS, and prescription medication; neither did anything. I've tried pinpointing food triggers, but am never successful. The only definite trigger for my IBS flaring up, when I was still on my feet, was anxiety. I can't say that I've noticed a definitive correlation, since my injury. Given my condition, and everything I have to deal with on a daily basis, I'm pretty much ALWAYS under a high amount of stress and anxiety. Not to mention, my AD has seemingly gotten worse, and more frequent, as time has gone on. I would've thought if stress and anxiety alone were the causes, I would've had more issues when I was newly injured.
That leaves me thinking that my body has gotten to the point where it wants to "go" every day, and that's why my AD has gotten to be so unbearable. If that's the case, it would also account for why I have occasional "accidents", despite successful having BP (or why it's often hard to regulate at all-despite taking consistent bowel related medication and eating healthy). As it is, I've already had DOZENS of nurses have to help me with BP, over the past six years. Every time I lose a nurse and have to train a new one, it is stressful, and traumatic. I absolutely abhor BP, and dread it. Every other night, I'm full of anxiety and despair, knowing I have to do it the following morning. I've gotten to the point where, even if my body is demanding to go every day, I just can't handle it emotionally. This past year, I've gone through several nurses (I use an agency called Bayada- Medicare covers the sessions) due to circumstances outside of my control. In fact, tomorrow and Thursday I'll be meeting new nurses, because two of my regular nurses won't be here in July (personal reasons & vacation). That's two more people that have to see me naked, touch me and witness me going to the bathroom. I'm dreading it, and wish I could say "No! Go away and leave me alone."
Paralysis doesn't let me say "no." It doesn't leave me with many choices. I need to go to the bathroom, in order to live. I need help, in order to go to the bathroom. Knowing I'm going to be training with TWO new nurses, has just added salt to my wounds. Some people have asked me, "Why don't you just hire a private duty nurse, and not use a nursing agency?" One, my nurses technically are "private duty." The agency assigns them to my case, and Medicare covers the set three hour block of time, every other day. Two, in order for Medicare to pay for the service, it has to be done by a qualified nurse. I can't just pluck someone off the street and train them, like with my aides. A bowel program (at least in NJ) is considered to be a treatment, which involves "skilled nursing care." Having a nursing agency on my case, makes the most sense, because if a nurse quits, calls out sick, goes on vacation, moves, or has a family emergency (which have all happened to me already), there are backup nurses that are already trained. I have to have BP, regardless of my nurse's situation, therefore I can't afford not to have a backup in place. It's a necessary evil.
I have two options on the table. One, I can stick with accepting a BP: which involves nurses, which I hate which is long, which relies on a schedule, which is physically and emotionally taxing, and which is highly intrusive and invasive. Two, I can get a colostomy. I've mentioned in previous blogs why I don't want to even consider a colostomy. To me, it's not even an option worth mentioning. As much as I despise the idea of getting a colostomy, and have sworn to myself I'd never get one, the AD and BP are really wearing me down. I honestly don't know how long I can keep living this way.
Out of desperation, I decided to look even deeper (than I already have in the past) into what it would be like to get the colostomy. So many people have irritated me, by making it seem like getting one is such an "easy" decision, and better option. Sure, it's easy for OTHERS to flippantly suggest I undergo ANOTHER surgery. It's easy, when YOU aren't the one getting sliced open. It's easy when you aren't the one that will have to live every day, for THE REST of your life, with a bag of shit strapped to your side. It's easy, for the able-bodied people, who have told me about their personal experiences with having HAD (key word- their colostomies were eventually reversed- once I do it, the likelihood of going back to having a BP, is slim to none) a colostomy. It's easy for all the quads who talk about having one, that CAN TAKE CARE OF IT INDEPENDENTLY.
The more I've read about colostomies, the more I've discovered as to why, it would NOT be a better option for me. First, I would need to undergo surgery, which would require several days in the hospital, afterwards for recovery. The absolute LAST place I want to be at this point, is in the hospital. There is no guarantee that a colostomy would alleviate my AD. I'd be creating ANOTHER artificial opening in my body (in addition to my suprapubic catheter), that would need to be maintained, and could become infected. The bottom line is, I'd STILL need help with going to the bathroom. I'd need a nurse to clean the stoma, change the bags, and/or irrigate it. No matter what I do, someone else has to handle, and clean up after MY shit. It's not like the colostomy would care for itself.
As much as I hate BP, at least it's over and done with, in a set amount of time. Yes, I do occasionally have episodes of incontinence. However, from what I've read, there is nothing to guarantee that I wouldn't have accidents with a colostomy. One, the bags can bust or leak (as I've had happen with the catheter). I'd need help cleaning that up. Two, even though they'd be re-routing my colon, mucous builds up in the rectum, and needs to be digitally removed (at least once a month- most people fail to mention, or know about this). Three, did I mention, I'd have a bag of shit strapped to me, all day, every day?! Four, some people do "cap off" their stomas and prefer not to wear bags, instead they essentially flush the stool out (similar to an enema, but through the stoma). However this only works once your body has acclimated to having the colostomy (which depends on the individual and can be effected by diet). The other catch, is that this capping off can create AD (since gas and stool build up) and also tends to lead to more frequent accidents. Even the irrigation process itself, could potentially create AD. Not to mention, like I pointed out earlier, someone else would need to be doing all of the care for me.
So basically, I'd be taking a huge gamble, with the high probability of having to deal with most of the problems that I already have with BP. Only, I'd have the added nuisance of having another artificial hole, need to get (and rely on) more medical supplies, and have another bag of bodily waste strapped to me. I'd still need to have help in that area, and have strangers in my business. There's just no avoiding that. Instead of being embarrassed about wearing Depends, I'll be embarrassed by the bag. Oh, and did I mention the added "treat" I discovered about having a colostomy?! You pass gas out of your side, in addition to your ass. Lovely! Double the embarrassment, lack of control and shame. Thanks, but no thanks. It looks like I'm stuck with BP.
My regular doctor, and doctors I've seen at the hospital, only ever postulate and hypothesize, based on my theories, and descriptions, but never seem to have clear cut answers, or definitive reasons for why I'm so uncomfortable, and sick, so often. I realize that the fact that I can no longer directly feel what's causing my symptoms, makes it difficult for my doctors to draw conclusions, or pinpoint things, but honestly I feel like the vast majority of the time, they can't give me answers because they don't understand the nature of spinal cord injuries, and its effects on the body in general. I feel like, most times my doctors are treating me, like they would the average able-bodied person, and that is why I'm not getting any answers, or finding any relief. I'm not average, and my body no longer works according to the "normal" rules of science.
My spinal cord injury has severed the connection between brain and body. The messages I do receive are messed up, mangled and chaotic. When my body experiences pain or discomfort below my injury, it responds by signaling me with autonomic dysreflexic (AD) symptoms. AD symptoms vary (headache, sweating, chills, cold sweats, tingling, phantom pain, chest pressure, muscle spasms & fevers), but on the whole, I've come to recognize them, and have a handful of common known triggers. AD episodes can be life threatening, because quite often, my body reacts to pain I can't feel, by elevating my blood pressure. The elevation in blood pressure, is what creates the secondary symptoms, like sweating, headache and chills. When I begin to feel symptomatic, I know to ask for help, to try and alleviate the cause of the pain (such as my catheter being pinched, or my clothing being wrinkled). Gone unchecked, and unresolved AD can lead to stroke and/or death.
Unfortunately, one of the biggest causes of AD for me, is my bowels. I am stuck in a vicious cycle, of never ending discomfort, and pain. My spinal cord injury, and my paralysis have made me a literal prisoner to my body, and its needs. I must eat to survive. Likewise my body must expel waste. Normally, it's not something the average person puts much thought into, or has cause for distress. For me, I feel as though I have become a slave, and prisoner to the simplest of bodily functions. There is no escaping it. It has become so troublesome and uncomfortable for me, that something that is normally simple, private, and in the back of the mind, has instead become the center for which, my life revolves around and is dictated by. It is awful.
My paralysis leaves me with so few choices, none of which are pleasant. I must eat to live; that is a given. I must go to the bathroom; that too is a given. However, nothing in my life is that simple, because I cannot do anything on my own. I need help for everything, including eating and yes, even shitting. For the past six years, I've endured having a bowel program (BP), in order to get rid of the waste I must expel, in order to keep living. It's an awful ordeal, that involves a nurse manually removing stool from body, every other morning. Since I no longer feel the sensation of needing to "go," or the ability to bring myself to the bathroom, or even the ability to "push" it out, those ordinarily natural processes must be FORCED into action.
In order for me to go to the bathroom (shit), my nurse needs to insert a suppository, and digitally stimulate my rectum into going. I'm forced into sitting, strapped to a commode for one to two hours, while my nurse manually stimulates, checks, and rechecks my colon, every ten to twenty minutes, depending on how quickly I go (depends on amount, and consistency). Although I can't feel the digital stimulation directly, it creates AD symptoms. The process is both physically, and emotionally taxing. Every time my nurse checks me, it sends a chill up my spine, creates goosebumps, sweating, and discomfort (sometimes accompanied by chest pressure and nausea). On top of which, my overall condition and constant stimulation, has created chronic hemorrhoids. Again, even though I don't feel the pain of the hemorrhoids directly, I'm positive they contribute to my daily bouts of AD.
The frequency of having a bowel program, depends on the individual. When I was initially injured, I had to have it every night (policy at the nursing home I lived at). They made me do it in bed, after my showers, laying on my side. It was disgusting, painful (for my shoulders) and I hated it. Since moving to my own place, I switched to having it done every other morning, on the commode (over my toilet). Although it has been a big improvement, being able to do it over the toilet (in the privacy of my own bathroom- as opposed to in a bed, in the same room as my roommate) and before getting showered, it is still uncomfortable, and far from ideal. Needing to have ANYONE help me in the bathroom, or with personal hygiene has been horrific, and has never gotten any easier to deal with.
Unfortunately, I don't think I could get away with having it any less than I already do. I know a couple of people (with similar injuries) that do their BP every three days. I wish I could do that. The thing is, I suffer from AD symptoms every day; having several episodes each day (sometimes the symptoms last for hours- like sweating, chest pressure and chills). I've already ruled out a million more serious possible causes, through testing (EKG, ultrasounds, CAT scans, blood work & X-rays). Ninety five percent of the time, I have someone check me for visible problems, and we come up empty. That leaves me thinking that most, if not all of my AD is caused by something to do with my lower hemisphere. I know for sure that my hemorrhoids and gas are two big culprits; neither of which I can do much about.
I wonder if my IBS still has an impact on my body. No one has been able to give me a definitive answer. I'm going to see my physiatrist on Tuesday, in hopes of getting some clear cut answers. I know when I was on my feet, I went to the bathroom every day (sometimes several times). If my colon is still spastic, it could certainly explain why I'm dysreflexic so often. That said, even if she tells me, "Yes Christina, your IBS could be creating AD and offer an explanation as to why it's been so difficult for you to regulate your BP" it doesn't really offer me any relief. I don't know exactly what I expect for my physiatrist to tell me, except if my theory is right, or wrong. Either way, I'm pretty much stuck with the situation I have. I guess I just want to hear her say (essentially) whether I'm screwed, or not, and if she has any suggestions that I haven't yet tried (doubtful).
I've tried taking probiotics to help with my IBS, and prescription medication; neither did anything. I've tried pinpointing food triggers, but am never successful. The only definite trigger for my IBS flaring up, when I was still on my feet, was anxiety. I can't say that I've noticed a definitive correlation, since my injury. Given my condition, and everything I have to deal with on a daily basis, I'm pretty much ALWAYS under a high amount of stress and anxiety. Not to mention, my AD has seemingly gotten worse, and more frequent, as time has gone on. I would've thought if stress and anxiety alone were the causes, I would've had more issues when I was newly injured.
That leaves me thinking that my body has gotten to the point where it wants to "go" every day, and that's why my AD has gotten to be so unbearable. If that's the case, it would also account for why I have occasional "accidents", despite successful having BP (or why it's often hard to regulate at all-despite taking consistent bowel related medication and eating healthy). As it is, I've already had DOZENS of nurses have to help me with BP, over the past six years. Every time I lose a nurse and have to train a new one, it is stressful, and traumatic. I absolutely abhor BP, and dread it. Every other night, I'm full of anxiety and despair, knowing I have to do it the following morning. I've gotten to the point where, even if my body is demanding to go every day, I just can't handle it emotionally. This past year, I've gone through several nurses (I use an agency called Bayada- Medicare covers the sessions) due to circumstances outside of my control. In fact, tomorrow and Thursday I'll be meeting new nurses, because two of my regular nurses won't be here in July (personal reasons & vacation). That's two more people that have to see me naked, touch me and witness me going to the bathroom. I'm dreading it, and wish I could say "No! Go away and leave me alone."
Paralysis doesn't let me say "no." It doesn't leave me with many choices. I need to go to the bathroom, in order to live. I need help, in order to go to the bathroom. Knowing I'm going to be training with TWO new nurses, has just added salt to my wounds. Some people have asked me, "Why don't you just hire a private duty nurse, and not use a nursing agency?" One, my nurses technically are "private duty." The agency assigns them to my case, and Medicare covers the set three hour block of time, every other day. Two, in order for Medicare to pay for the service, it has to be done by a qualified nurse. I can't just pluck someone off the street and train them, like with my aides. A bowel program (at least in NJ) is considered to be a treatment, which involves "skilled nursing care." Having a nursing agency on my case, makes the most sense, because if a nurse quits, calls out sick, goes on vacation, moves, or has a family emergency (which have all happened to me already), there are backup nurses that are already trained. I have to have BP, regardless of my nurse's situation, therefore I can't afford not to have a backup in place. It's a necessary evil.
I have two options on the table. One, I can stick with accepting a BP: which involves nurses, which I hate which is long, which relies on a schedule, which is physically and emotionally taxing, and which is highly intrusive and invasive. Two, I can get a colostomy. I've mentioned in previous blogs why I don't want to even consider a colostomy. To me, it's not even an option worth mentioning. As much as I despise the idea of getting a colostomy, and have sworn to myself I'd never get one, the AD and BP are really wearing me down. I honestly don't know how long I can keep living this way.
Out of desperation, I decided to look even deeper (than I already have in the past) into what it would be like to get the colostomy. So many people have irritated me, by making it seem like getting one is such an "easy" decision, and better option. Sure, it's easy for OTHERS to flippantly suggest I undergo ANOTHER surgery. It's easy, when YOU aren't the one getting sliced open. It's easy when you aren't the one that will have to live every day, for THE REST of your life, with a bag of shit strapped to your side. It's easy, for the able-bodied people, who have told me about their personal experiences with having HAD (key word- their colostomies were eventually reversed- once I do it, the likelihood of going back to having a BP, is slim to none) a colostomy. It's easy for all the quads who talk about having one, that CAN TAKE CARE OF IT INDEPENDENTLY.
The more I've read about colostomies, the more I've discovered as to why, it would NOT be a better option for me. First, I would need to undergo surgery, which would require several days in the hospital, afterwards for recovery. The absolute LAST place I want to be at this point, is in the hospital. There is no guarantee that a colostomy would alleviate my AD. I'd be creating ANOTHER artificial opening in my body (in addition to my suprapubic catheter), that would need to be maintained, and could become infected. The bottom line is, I'd STILL need help with going to the bathroom. I'd need a nurse to clean the stoma, change the bags, and/or irrigate it. No matter what I do, someone else has to handle, and clean up after MY shit. It's not like the colostomy would care for itself.
As much as I hate BP, at least it's over and done with, in a set amount of time. Yes, I do occasionally have episodes of incontinence. However, from what I've read, there is nothing to guarantee that I wouldn't have accidents with a colostomy. One, the bags can bust or leak (as I've had happen with the catheter). I'd need help cleaning that up. Two, even though they'd be re-routing my colon, mucous builds up in the rectum, and needs to be digitally removed (at least once a month- most people fail to mention, or know about this). Three, did I mention, I'd have a bag of shit strapped to me, all day, every day?! Four, some people do "cap off" their stomas and prefer not to wear bags, instead they essentially flush the stool out (similar to an enema, but through the stoma). However this only works once your body has acclimated to having the colostomy (which depends on the individual and can be effected by diet). The other catch, is that this capping off can create AD (since gas and stool build up) and also tends to lead to more frequent accidents. Even the irrigation process itself, could potentially create AD. Not to mention, like I pointed out earlier, someone else would need to be doing all of the care for me.
So basically, I'd be taking a huge gamble, with the high probability of having to deal with most of the problems that I already have with BP. Only, I'd have the added nuisance of having another artificial hole, need to get (and rely on) more medical supplies, and have another bag of bodily waste strapped to me. I'd still need to have help in that area, and have strangers in my business. There's just no avoiding that. Instead of being embarrassed about wearing Depends, I'll be embarrassed by the bag. Oh, and did I mention the added "treat" I discovered about having a colostomy?! You pass gas out of your side, in addition to your ass. Lovely! Double the embarrassment, lack of control and shame. Thanks, but no thanks. It looks like I'm stuck with BP.
Thursday, March 31, 2011
IBS & SCI
I had a long conversation with my friend Mariam the other night. She's a fellow AMFPA artist and quadriplegic (I hate that description), like me. This month marked fifteen years, since her accident. She lives on her own, in Chicago. She's an amazing artist, and has a wonderfully positive attitude about life, and dealing with living with paralysis. Although she's admitted to me that she's had her fair share of dark days, and moments of feeling like she wanted to give up on life, she lived through that rough period of her life to tell the tale, and has been trying to help me see the possibility of finding happiness, despite our injuries. We share a lot in common, and I really appreciate her insight, and her taking time to try and cheer me up.
Just like I feel it's impossible for most of my friends to see the world through the lens, and perspective on life, that paralysis has given me, it's near impossible for me to see (or imagine) my life through Mariam's eyes. I have a couple friends (including Mariam) that have been injured over a decade, and it's hard for me to wrap my head around that amount of time, living this way. When I think about the Hell these last six (almost) years have been, and my deteriorating health, my mind begins to short circuit, at the thought of having to go through this for another six, or ten years. I get chocked up, just at the thought. It's a very scary, hopeless filled future, through my eyes, at this point in my journey, right now.
Mariam said she went through a similar extremely dark period in her life, where she gave up caring. She said her poor health was a big contributing factor to her mood, and both fed off of one another, in a viscous downward spiral. I feel caught in the current of a similar cycle. It's very hard to envision any brightness in a future, that is certain to include more of the same stuff that I've been going through, and will continue to go through, unless miraculously cured. No matter how you slice it, bowel programs, catheters, lack of privacy and being dependent on others, is part of my future. Those are all inevitables, I can't escape.
Mariam agrees with me, that bowel program is a horrendous aspect of living with paralysis, that we need. However, she said that there might be ways of "streamlining" my program, so that it's not SUCH a burden. She and I discussed our routines, and I was kind of shocked by the comparisons. I have my BP every other day (in the morning). It usually lasts two hours, or more, and entails me sitting strapped to a commode, over the toilet. I have a nurse present, the entire time, who uses a suppository and manual stimulation, every ten to twenty minutes, until I'm "empty" (disgusting, gross & disturbing, I know). On top of that, I take five Senekot and two Colace pills each day. Not to mention, trying watch my diet and eat plenty of veggies and fiber. Despite all that, I still have occasional "accidents", which are terribly traumatic, and usually unexplained. I have at least one a month. Occasionally (like last week) I'll have a BP day with near to no "results" and end up then having to have BP for three days, back to back, as to not mess up my nursing schedule. In contrast, Mariam was telling me, her BP only takes 45 minutes, every THREE days.
I've gotten quite a lot of feedback from other people that have BP, and routines seem to vary widely, from individual, to individual. I've had more than one person respond to my posts (in Care Cure forums), with their own horror stories of three hour BPs, hemorrhoids and the alternative of trading it all in for a colostomy. As I've said a million times, I'm not willing to entertain the colostomy bag option. Knowing the Hell I currently go through, and how my body reacts, I also can't envision being able to get away with only having BP every three days, like Mariam. Although it sounds like a WONDERFUL alternative, to my current routine (the best idea I've heard), I honestly don't think my body could tolerate waiting that long to "go." As it is, I experience a lot of extra AD like symptoms the night before BP. I attribute the discomfort (chills, fevers, chest pressure and sweating) with gas, and with needing to go to the bathroom. I've tried taking Beano & Gas-X, on hopes of alleviating some of the discomfort, but it never does. Not to mention, the days my BP doesn't produce the "typical" amount of stool (OMG! I want to vomit, just typing this), I almost always end up having an accident, which to me, is further proof that's there's just no way my body would let me get away putting BP off, an extra day. In fact, it's been suggested to me by several people, that I ought to go back to having BP every day (like when I was living in the nursing home). I definitely had less instances of incontinence, when I was having BP daily. However, I'm at a point where I literally rather die, than go back to having BP daily.
Mariam said that she thought it's a possibility that the nurses working with me, aren't being aggressive enough, in their techniques. She and I talked at length about this, and she explained to me about having two sphincters, and the importance of the nurses putting the suppositories "up," high enough and how crucial the stimulation process is. To be honest, it was a bit too detailed of an anatomy lesson for me, and I admitted that I try to be the least involved in the whole BP process, as I can, given the fact it's my own body. Normally during BP, I try to pay attention to the news, and distract myself from the ugly realities of my life. I love it when I know I'll have a nurse with me that knows me well, because it means I can be relaxed enough, to NOT have to discuss anything about the actual BP, or give instructions. When I'm with a nurse that I'm familiar with, I basically just let them "do what they need to do" and I zone out, and try and remove my thoughts from my surroundings.
Taking Mariam's advice (knowing deep down that I need to be control and directing my care), I decided to bring up some of our discussion with my nurse, to make sure she is in fact doing everything correctly (which I was pretty sure she was). She acknowledged all of the important points, and said she'd be more than happy to try her best to speed things along. The thing is, there's often times when my nurses (including the nurse I spoke with) have told me that they've been "up there," and couldn't feel a thing. Then later that same day, I'll end up going more. So basically what MY nurses have to do, is determine when I'm "done" based on quantity, and not only just by what they feel. Sometimes they'll even have to use a second suppository to "get things moving." When it's all said and done, I never feel comfortable (meaning, not being paranoid about having an accident) unless I've gone a certain amount. It ends up being a waiting game. The nurses keep checking, and stimulating, until I "go" that certain amount. It's awful. Regardless, I'm usually always paranoid of accidents. Partly because they have happened randomly, even after a "good" BP, and secondly, because the threat is always there, and the trauma of it happening once, has been enough to keep me forever worried. It's pretty much become my worst fear, that I fear on an almost constant basis.
Before my accident, when I was around twenty, or twenty one, my mother had a scare, thinking she might have Chrone's disease. She ended up having a colonoscopy done, and was diagnosed with IBS (irritable bowel syndrome- aka spastic colon). I had always had bathroom issues myself, often suffering from diarrhea and almost always getting sick, if I was anxious, or upset about something. I decided to get myself checked out, around the same time, and was also diagnosed with IBS. I was given pills, that didn't help, and I stopped taking them. I never found any direct relation to food, or drink, but definitely believe there were psychological triggers. I can remember being sick to my stomach (with the runs) for every major event in my life. Not being unable to use public restrooms, and being highly sensitive about the matter, complicated having spastic colon, and I remember many days that I was doubled over in pain, because I HAD to "go," but couldn't bring myself to use the bathroom, wherever, or around whoever I was with, at the time.
Between my conversation with Mariam, and with my nurse, I got to thinking if maybe it's not so much my hemorrhoids that cause me so much discomfort, and make my bowel program seemingly so hard to manage and control, but perhaps it's the fact that I still have IBS. It's not that I've never had this thought before, but I always ruled it out, given the fact that I know my biggest trigger of my IBS, was always my emotions. I've always assumed, since there is no longer a conscious connection between my brain, and my ability to control my bowels, that IBS too, would no longer be an issue. I figured, if my emotions still ruled my IBS, then theoretically, I'd be able to use anxiety to my advantage, and will myself into needing to go. That most certainly isn't the case. I'm anxious/paranoid about BP specifically, 99% of the time, so based on that alone, I'd be "going" all the time. On the other hand, I wonder if my anxiety and IBS create more gas, and sensations of needing to go, that my body is interpreting as pain, and thus creating all the AD symptoms. It would explain a lot. I'm curious to know if anyone else with a SCI has had experience of being previously diagnosed with IBS, and if he/she has had any similar issues of AD and unexplained problems with BP and/or episodes of incontinence. I'm also curious to ask my doctor what he thinks. Unfortunately, there's no way to know for sure. One frustrating aspect of IBS, is that it's difficult to treat. It's even harder to try and treat something you can't directly feel. I'm grasping at straws, but it's an idea I'm curious I'd like to throw out there, and get some feedback on.
- Posted using BlogPress from my iPad
Just like I feel it's impossible for most of my friends to see the world through the lens, and perspective on life, that paralysis has given me, it's near impossible for me to see (or imagine) my life through Mariam's eyes. I have a couple friends (including Mariam) that have been injured over a decade, and it's hard for me to wrap my head around that amount of time, living this way. When I think about the Hell these last six (almost) years have been, and my deteriorating health, my mind begins to short circuit, at the thought of having to go through this for another six, or ten years. I get chocked up, just at the thought. It's a very scary, hopeless filled future, through my eyes, at this point in my journey, right now.
Mariam said she went through a similar extremely dark period in her life, where she gave up caring. She said her poor health was a big contributing factor to her mood, and both fed off of one another, in a viscous downward spiral. I feel caught in the current of a similar cycle. It's very hard to envision any brightness in a future, that is certain to include more of the same stuff that I've been going through, and will continue to go through, unless miraculously cured. No matter how you slice it, bowel programs, catheters, lack of privacy and being dependent on others, is part of my future. Those are all inevitables, I can't escape.
Mariam agrees with me, that bowel program is a horrendous aspect of living with paralysis, that we need. However, she said that there might be ways of "streamlining" my program, so that it's not SUCH a burden. She and I discussed our routines, and I was kind of shocked by the comparisons. I have my BP every other day (in the morning). It usually lasts two hours, or more, and entails me sitting strapped to a commode, over the toilet. I have a nurse present, the entire time, who uses a suppository and manual stimulation, every ten to twenty minutes, until I'm "empty" (disgusting, gross & disturbing, I know). On top of that, I take five Senekot and two Colace pills each day. Not to mention, trying watch my diet and eat plenty of veggies and fiber. Despite all that, I still have occasional "accidents", which are terribly traumatic, and usually unexplained. I have at least one a month. Occasionally (like last week) I'll have a BP day with near to no "results" and end up then having to have BP for three days, back to back, as to not mess up my nursing schedule. In contrast, Mariam was telling me, her BP only takes 45 minutes, every THREE days.
I've gotten quite a lot of feedback from other people that have BP, and routines seem to vary widely, from individual, to individual. I've had more than one person respond to my posts (in Care Cure forums), with their own horror stories of three hour BPs, hemorrhoids and the alternative of trading it all in for a colostomy. As I've said a million times, I'm not willing to entertain the colostomy bag option. Knowing the Hell I currently go through, and how my body reacts, I also can't envision being able to get away with only having BP every three days, like Mariam. Although it sounds like a WONDERFUL alternative, to my current routine (the best idea I've heard), I honestly don't think my body could tolerate waiting that long to "go." As it is, I experience a lot of extra AD like symptoms the night before BP. I attribute the discomfort (chills, fevers, chest pressure and sweating) with gas, and with needing to go to the bathroom. I've tried taking Beano & Gas-X, on hopes of alleviating some of the discomfort, but it never does. Not to mention, the days my BP doesn't produce the "typical" amount of stool (OMG! I want to vomit, just typing this), I almost always end up having an accident, which to me, is further proof that's there's just no way my body would let me get away putting BP off, an extra day. In fact, it's been suggested to me by several people, that I ought to go back to having BP every day (like when I was living in the nursing home). I definitely had less instances of incontinence, when I was having BP daily. However, I'm at a point where I literally rather die, than go back to having BP daily.
Mariam said that she thought it's a possibility that the nurses working with me, aren't being aggressive enough, in their techniques. She and I talked at length about this, and she explained to me about having two sphincters, and the importance of the nurses putting the suppositories "up," high enough and how crucial the stimulation process is. To be honest, it was a bit too detailed of an anatomy lesson for me, and I admitted that I try to be the least involved in the whole BP process, as I can, given the fact it's my own body. Normally during BP, I try to pay attention to the news, and distract myself from the ugly realities of my life. I love it when I know I'll have a nurse with me that knows me well, because it means I can be relaxed enough, to NOT have to discuss anything about the actual BP, or give instructions. When I'm with a nurse that I'm familiar with, I basically just let them "do what they need to do" and I zone out, and try and remove my thoughts from my surroundings.
Taking Mariam's advice (knowing deep down that I need to be control and directing my care), I decided to bring up some of our discussion with my nurse, to make sure she is in fact doing everything correctly (which I was pretty sure she was). She acknowledged all of the important points, and said she'd be more than happy to try her best to speed things along. The thing is, there's often times when my nurses (including the nurse I spoke with) have told me that they've been "up there," and couldn't feel a thing. Then later that same day, I'll end up going more. So basically what MY nurses have to do, is determine when I'm "done" based on quantity, and not only just by what they feel. Sometimes they'll even have to use a second suppository to "get things moving." When it's all said and done, I never feel comfortable (meaning, not being paranoid about having an accident) unless I've gone a certain amount. It ends up being a waiting game. The nurses keep checking, and stimulating, until I "go" that certain amount. It's awful. Regardless, I'm usually always paranoid of accidents. Partly because they have happened randomly, even after a "good" BP, and secondly, because the threat is always there, and the trauma of it happening once, has been enough to keep me forever worried. It's pretty much become my worst fear, that I fear on an almost constant basis.
Before my accident, when I was around twenty, or twenty one, my mother had a scare, thinking she might have Chrone's disease. She ended up having a colonoscopy done, and was diagnosed with IBS (irritable bowel syndrome- aka spastic colon). I had always had bathroom issues myself, often suffering from diarrhea and almost always getting sick, if I was anxious, or upset about something. I decided to get myself checked out, around the same time, and was also diagnosed with IBS. I was given pills, that didn't help, and I stopped taking them. I never found any direct relation to food, or drink, but definitely believe there were psychological triggers. I can remember being sick to my stomach (with the runs) for every major event in my life. Not being unable to use public restrooms, and being highly sensitive about the matter, complicated having spastic colon, and I remember many days that I was doubled over in pain, because I HAD to "go," but couldn't bring myself to use the bathroom, wherever, or around whoever I was with, at the time.
Between my conversation with Mariam, and with my nurse, I got to thinking if maybe it's not so much my hemorrhoids that cause me so much discomfort, and make my bowel program seemingly so hard to manage and control, but perhaps it's the fact that I still have IBS. It's not that I've never had this thought before, but I always ruled it out, given the fact that I know my biggest trigger of my IBS, was always my emotions. I've always assumed, since there is no longer a conscious connection between my brain, and my ability to control my bowels, that IBS too, would no longer be an issue. I figured, if my emotions still ruled my IBS, then theoretically, I'd be able to use anxiety to my advantage, and will myself into needing to go. That most certainly isn't the case. I'm anxious/paranoid about BP specifically, 99% of the time, so based on that alone, I'd be "going" all the time. On the other hand, I wonder if my anxiety and IBS create more gas, and sensations of needing to go, that my body is interpreting as pain, and thus creating all the AD symptoms. It would explain a lot. I'm curious to know if anyone else with a SCI has had experience of being previously diagnosed with IBS, and if he/she has had any similar issues of AD and unexplained problems with BP and/or episodes of incontinence. I'm also curious to ask my doctor what he thinks. Unfortunately, there's no way to know for sure. One frustrating aspect of IBS, is that it's difficult to treat. It's even harder to try and treat something you can't directly feel. I'm grasping at straws, but it's an idea I'm curious I'd like to throw out there, and get some feedback on.
- Posted using BlogPress from my iPad
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