Colon blow and other Cauda Equina Syndrome “fun” things

Colon blow and other Cauda Equina Syndrome “fun” things

I didn’t write my blog yesterday. I only got a few hours sleep due to pain and worrying that I would sleep through my alarm. I went to my psych appointment and she put me on a new antidepressant that is out. I came home and had a severe flare. My pain was through the roof. I was supposed to go to the ball game but it wasn’t happening. After my mother made dinner, I took about an hour and half nap when my phone’s med alarm went off. I took my night meds and got so sick. I haven’t moved my bowels all week so been feeling ill and I think the new med just made me nauseous. I thought I was going to hurl. I took my Zofran and laid still. I also took some Mylanta because I had gas really bad. When I didn’t feel like puking anymore, I took some fiber to help my bowels move along but a few hours later, nothing happened.

I decided to try some Miralax to help move things. I was hurting so bad and I swear my stool was moving into my small intestine rather than move along to my colon. I was still passing gas but nothing else. I went to Walgreens and bought some and a Gatorade to take it with. Having suffered from Cauda Equina Syndrome (CES), getting constipated is a HUGE thing. There is a varied range of people’s degree of injury to their bowel nerves. Some don’t feel themselves go so become incontinent and being constipate helps to prevent accidents. Some have a designated shit day where they take laxatives and spend the day on the can to relieve themselves. Taking medication for pain can be constipating. I have no feeling for soft or loose stool so can pass them with gas if I am not mindful of it. Never trust a fart is a common saying among those with CES.

I usually have hard stool and can go with senna. Lately, because of my flares and needing more pain meds, it hasn’t been working. Usually fiber helps me move along and I try not to have plans the following day so I can go to the bathroom in the privacy of my own bathroom. I hate using a public restroom when out because I don’t have the mobility to reach my behind like I used to due to my back surgeries. When the fiber and senna do not work, I take Miralax hence why I went to Walgreens today. I have been having a ton of flatulence which I cannot trust. I was able to have a few movements after taking the Miralax but now I am having what is known as colon blow where all you do is go to the bathroom. Since I can’t trust a fart, every time I get the sensation of urges (I can’t tell if it is a stool or gas urge), I run to the bathroom. For the past hour, I just have been shitting little turds, which is annoying me as the stool is messy. My bottom is so irritated and I have to use the incontinence spray that you don’t have to rinse to soothe it.

The most undignified thing is, because I can’t trust a fart and I have a lot of gas, I am now wearing a diaper to prevent my underwear from being soiled. I already had one accident today that required a shower. With the comfort of the diaper, I can let loose and if some stool comes out, I don’t have to freak out and be constantly changing my underwear. I have taken some stomach stuff for gas so I hope it helps. I don’t want to take Imodium because I don’t have loose stool even though I know it would help the gas part.

Another lovely “perk” is nerve pain after moving hard stools. This rectal pain can drive people who have never been suicidal to become suicidal. Nothing is worse than a pain in the ass that no pain meds can touch. Sometimes the pain can last a few minutes or hours or days. It sucks. No doctor knows why, even the colon experts.

The worst part of this day from hell, is I have been going up and down the stairs all day as the bathroom is downstairs from my bedroom. I hope it doesn’t cause another flare. Yesterday’s flare is still giving me nightmares. My ankle has CRPS (complex regional pain syndrome). It doesn’t like movement. I am sure I will flare later tonight, despite taking a nap. Rest doesn’t always help my pain like some pain conditions. I hate the unpredictability that CRPS brings. I wish there was a way to control it but there isn’t. I long for the days when my pain was driven by activities during the day. Now, it doesn’t matter. I can be at home all day and I will hurt. I can go out a few hours to have a cup of coffee and write for a bit only to hurt later in the night. It is awful. I hate it. It has taken away all the things I love. I feel beaten. And then I will have days like today where I am crapping my pants. It’s too much. I just always hope that tomorrow will be a little less painful because that is all I can do.

A letter to bozo

Dear Bozo,

It’s after midnight. I am really tired but I am in a lot of pain. I am feeling depressed because a fellow blogger wants to end her life. I have become good friends with her and it makes me sad that there is nothing I can do for her except be there. I hope she doesn’t hurt herself tonight.

Sox are back in last place. I feel like I am, too. I feel like I am at the bottom of the barrel and I can’t get out. The shit just keeps piling on and I can’t get out from under.  Foot is absolutely killing me despite taking pain meds. I just took some ativan because I got a cramp in my other foot. That is all I need, both feet to be against me. I am such a shit.

I’m supposed to go out tonight with some friends. I always have a good time even though it wears me out. My friends don’t know this.  I have never told them. They are the only friends that I have kept in touch with since my disability and loss of work. I would hate to lose them or be left out of having dinner with them once in a while. It really is the only time I socialize.

I just don’t know what has brought on these feelings of worthlessness and insecurity.  Someone liked my commonalities of suicide and placed it on Reddit. Whatever that is. I have heard about it but don’t know more than that.  I just know I feel like the biggest asshole on the planet right now. If I was suicidal, I’d probably plan something. It gives me comfort knowing I am going to try and end my life. I don’t know why that is.  Maybe because it gives me an option and a way out of this darkness. I am so tired of fighting it. Why do I have to continue to live when I don’t want to?  It’s your fault I’m still here. And I hate you for it right now. I hate this guilt trip you have me bonded into. I don’t want to hurt you, yet you say that I will if I kill myself. I just want the pain to stop. If the pain stopped, both physically and mentally I wouldn’t be thinking of ending my life. I am just a scumbag that doesn’t deserve your care.

I didn’t bring the depression on. Unless the pain meds did, which they could have. Course, I am very tired right now and fear that if I don’t go to sleep soon, Hyde might come out. So I’ll stop here for now.

But before I do, my CES anniversary  is coming up in two weeks. I am feeling anxious about it for some reason.  I keep having the memory of when I was told and having to pull over because I was driving to see you at the time. How I managed to drive without injuring myself I have no clue. My back was pretty bad. I still think if i didn’t get it the 2nd time, I wouldn’t be disabled like I am today. I have huge anger that I don’t know what to do with. The stages of grief I guess. But I refuse to accept this. This should not have happened. Someone should have noticed me walking improperly after all those PT sessions I had. Maybe I should have been in an AFO then. I don’t know.  It’s all hindsight now. And it makes me very angry.

I know I’ll never be normal again, that I think I can live with. But being in pain is not part of the deal. Especially when they are making it harder to get pain meds. If I dont ever get my meds, it will be my death sentence.

Rant of Doctors about CES

A rant on doctors (CES)

You are diagnosed with Cauda Equina Syndrome. A misunderstood syndrome that is a medical emergency. Yet the doctors never provide adequate after care. They think that once the surgery is done, you should be healed. They don’t tell you it could be up to 2 years or more before recovery is seen. Meanwhile, you become an infant. You have no bowel or bladder sensation. Are given catheters and told to do your own bowel program. I have tried this and has taken me 13 years to figure out what to make me go and what doesn’t. I was fortunate that I didn’t have to use catheters but I know others that do. What really pisses me off is that there is no help dealing with this syndrome mentally. It shatters you to the core. The pain that is dealt with is intolerable. The burning, the zaps, the throbbing, the stabbing. It never ends. You might get relief for a few hours but most of the time you have to learn to tolerate the pain. You want to give up and when you tell someone this, you are thought of as crazy. People don’t understand the mental anguish chronic pain has on you. I am feel so bad for those that didn’t have the help that I did while I was in the hospital. I was on suicide watch a few times but I got through it. I still have strong suicidal feelings because I just cannot tolerate pain any longer. But I am still here, despite these feelings.

Doctors don’t know everything. You may have to see several different specialists to deal with CES. I would strongly recommend finding a psychologist or therapist in your area to help deal with the debilitating pain, disability, and loss of self. Whatever you were before CES, it is now gone. You will never go back to that life. I will never be able to walk a 20 mile walk a thon because I can barely walk around the block without severe pain. As tough as it is, you must get used to this new life. There are no doctors that specialize in CES. Some have never even heard about it and if you look it up in a textbook, I am sure it is just a small paragraph. That is what makes this syndrome so damn frustrating. You have to see a neurologist if you want the best care. A GP or internist is not going to be helpful. Finding someone to listen is also key, though it may be hard to find. Don’t give up looking. They are out there! The weird thing is, as I was in the ER unable to walk, surrounded by neurologist residents and neurosurgical residents, not one of them told me that I had CES. It was my psychiatrist that told! I paged her at 4 in the morning to talk to her and get her opinion on what to do next. I needed to hear her voice because I knew she knew what I had. I have been lucky that both of my CES surgeries happened in the early stages and within the timeframe. Otherwise, I doubt that I would be writing how I recovered. It took a long time to get use of my legs again. I went from walker to cane to AFO to nothing. It didn’t happen overnight. It took months of rehab and perseverance. If I can get through the pain, you can too.

Shit Day

Shit day

I haven’t decided if I am going to take a shower or not. Think I will wait to see if my stomach settles down. I feel awful. I looked for my Lincoln DVD and was unable to find it but I did find some suicidology books. I will add them to the pile that I have for them because I don’t have space in my bookcase yet. I am glad I found them because it gives me something to read other than the Civil War book. I was reading “Definition of Suicide” but that book is really taxing. I have to be really alert to pay attention to it because the vocabulary is quite unique.

Today was going okay until my bowels decided to explode on me. I just barely made it to the bathroom. A combination of coffee and laxatives has caused all hell to break loose. I am debating taking some Imodium to try and calm things down. I hate when this happens because I can’t do a damn thing. I have to be near a toilet or I risk shitting myself. I was supposed to go to my father’s but it’s freezing and icy out. My middle sister is going there now to do his laundry. I asked her if she could do his meds for me. Guy will go berserk if the box isn’t filled up. He is such a pain in the ass.

Ankle is still bothering me but I haven’t taken any meds for it. I am afraid of getting back up again if I do. I hate getting backed up and then have the explosive bowels. I usually don’t get them but damn, when I do, it’s bad. I guess I shouldn’t have had the coffee but I was feeling sleepy and needed to be awake. Today is my niece’s birthday. She is turning 19. The party is at 4 and I hoping my stomach settles by then. I was so hoping to get a shower in but damn bowels have left me feeling weak. I should probably take a nap but I really don’t want to. I have been having strange mini dreams today, mostly involving suicide of someone in the dream. I really don’t want to go back there.

I am still trying to get reviewers for my book. If anyone on my blog wants a FREE, signed copy of my book, let me know. I will send you my book in exchange for a review. Warning the book is powerful and may make you cry. I had two people tell me this. I wrote it from the heart.

There is supposed to be another damn storm coming in from tomorrow night into Monday morning. I hope I still have therapy Monday. The appointment is at noon. I hope the snow has stopped by then. If it is really bad out, I will cancel. I am not going to risk a fall.

I have been in a strange mood the past 24 hours. I feel really down but not really. I just want to die, to cease to exist. My cousin’s mother passed away this week. She and her son has been on my mind. I got him a sympathy card and plan on mailing it on Monday. She was a good woman.

I have been thinking of writing again on my co-authored book. Trouble is that I don’t know what I did with the list of phrases to work on. Maybe I will do that tomorrow. Or I could write some more about suicide. I like that topic best. It is my muse. It is something I write well in.