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 :)
I also use magic bullets and the reason I like them is because they are water-based instead of oil-based, so I think they work a lot faster.
ReplyDeleteI don't agree with your doctor saying that you should only need stimulation twice. I know that that would not work for me because I need it many more times than that for a successful program.
I don't have IBS, and I've never had AD, either, so I don't have any suggestions about how to resolve a lot of the pain that you experience. I'm truly sorry, because I can only imagine how awful it would be to be plagued with so much pain, especially since doing a BP every day or every other day is a necessity for people like us.
I hope someone out there can provide some answers for you!
@Heather- Thanks. Yeah, three other people have said their nurses definitely need to do multiple stimulations. I'll be sure to point that out to my doctor, the next time I speak with her. It's helpful to know I'm not alone, in that respect.
ReplyDeleteYou never get AD? Wow! I'm surprised since you have such a high level injury. Then again, I think I recall reading that you said you had full sensation. I'm guessing that's why. Be grateful you don't have AD cause it's the pits! Thanks again for the feedback :)
I'm 49, originally assessed as a C5-6 quad, who is now, 37 yrs into this from a shooting accident in 1975.
ReplyDeleteWhen I was first injured we tried the suppository methods to manage the BP. I had horrific bouts of AD as well. I still may, but typically nowhere near as severely. I can go into AD for anything from a bowel or bladder irritation to something as simple as needing to change a foot position. It is been suggested I may have IBS, but back in my early years of this that wasn't a condition I ever heard anyone dealing with. I guess it was called something else. I always have dealt with struggling to maintain consistency in the stool and was prescribed Lomotil back then. It works and I have taken it ever since.
We found the use of suppositories or any enema type product just begged for trouble. It can get me going, but then, the trouble is stopping it.The suppositories also made the AD be prolonged. What ever the "Magic" is keeps the bowel stimulated longer than the evacuation takes. The resolution was to stop the assistive agents. I currently use just a digital stimulation every other day and have for more than 3 decades. It certainly takes more than a start and double check when done stimulations. For me, there is not a continuous stimulation per se, but it is better described as several series of stimulative rounds to the bowel wall. A typical BP lasts anywhere from 5 to 20 minutes. Variables can be consistency, amount of stimulation (both too much and too little matter), and of course, how much you have eaten matters in how much there is to evacuate. I also find the AD lessened somewhat by using just the digital stimulation. AD may still occur, but typically not as long lasting. Some things that cause the AD to vary in intensity include how firm the stimulation is to the bowel. Also, the depth the digit is inserted makes a difference and the amount of stool being evacuated. Avoid TOO much fiber. ;)
I dealt with hemorrhoids and occasionally still do. If they cause AD from any pressure or irritation the application of something like Preparation H will desensitize and reduce inflammation which in turn curbs the AD.
Your body will let you find a balance or what's enough stimulation for you. The difficult part is often maintaining the same person(s) to do the BP. They learn your needs to and that makes it easier on both you and them. Every person will perform the BP differently. Having to train new people for your needs gets tiring.
If the AD gets too bad for me, we just stop the stimulation and let the symptoms lessen bsfore moving on.
I have found it easier to manage the BP later in the day if not evening. If you have a taxing time, you are likely headed to bed anyway. This lets you relax even more easily than starting your day by needing to recover from a BP!
p.s. Most doctors don't know diddly squat!!! Most couldn't find their butts in the dark with a flashlight, a map and a personal guide! When it comes to spinal injury, the majority are guessing! Trust what you know about your body! Contact your place of rehab to find out who in your area has the knowledge to help you. A D.O. or family practice doctor is over their heads! Most urologists are too! Unless, they have specific training or focus in SCI, they are limited in helping you!! Rely on your intuition and always ask questions and do you own research. Follow publications focusing on SCI living, like PN Magazine. Originally known as Paraplegia News.
p.p.s. I have been told for years a colostomy would make things easier. Recently, during a hospital stay, that was addressed by a surgeon who went on to say it would be better off NOT being done. It is always better to let things that work continue to work. That is an unnecessary procedure and surgery invites its own dangers and complications.