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  • Pelvic floor dysfunction and bowel movements after SCI

    After a year of rectal pain and incomplete bowel movements I think I finally have this figured out. I am considering a colostomy. But something still isn't clear. I'd like to hear from some people with incomplete cervical/thoracic injuries with UMN bowels like myself.

    What is the shape of your stool like much of the time -- is it thinner in comparison to your old able bodied self? A glop of soft poo? Normal?

    Do you need to strain even if your stool is soft?

    Do you use digi-stim and or suppositories?

    Do you experience pain?


    Rather than just run out and get a colostomy because I have an SCI and painful BM's, I'm trying to get a better understanding of how I compare to other folks in general when it comes to pelvic floor spasticity and tone after SCI. Sure it is very common, but what specifically? No one can tell me, and little if no studies have been done. When doctor/nurse/therapist does a digital rectal exam and ask me to bear down my Internal sphincter and levator ani muscles are not relaxing. This is what I would really like to know. How many folks have this pelvic floor discoordination? For example, my stool is thinner because I am forcing past tight muscles (not just the external sphincter).


    While I can push stool out, this has created an additional problem by causing irritation over time to the pelvic floor muscles like the puborectalis and pubococcygeus muscles. What started as a golf ball/rectal fullness sensation in my rectum, worsened to, a vicious cycle of pain and spasm that nothing can seem to break. I need to stop pooping either temporarily or forever and get pelvic floor PT to get better. I was told by doctors that this is nerve pain for almost a year, all the while my condition slowly spiraled out of control from more MUSCLE irritation.

    I am still somewhat mystified. My problem happens to people without SCI. I could assume that I have a typical UMN bowel and that my problem is that my pelvic floor is hyper excitable or irritable more so than others. Thats probably it. But, I dont get why my problem is not more common? We have a more irritable and weakened nervous system, and most people use bycicodol suppositories which should in my opinion really aggravate the nerves and muscles in the pelvic floor and cause spasm.


    Jason
    Last edited by seawalker; 05-03-2011, 04:11 PM.
    C3/4 Incomplete. Ependymoma tumor, syrinx from C to T.

  • #2
    First of all, remember that everyone is different. That being said, your bowel problems are also a part of your incomplete injury. You don't say what type of incomplete injury you have. That would be helpful in trying to answer some of your questions.That may be why you are not seeing much posted.

    You are absolutely correct in your analysis of what a suppository does. That is the method of how it works. Many people do not have sensation or have dulled sensation so they don't feel the irritation.

    cKF
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


    • #3
      cKF,

      Thanks for responding. Everyone is tired of bowel talk I'm sure. I know I am. I have a lesion at C3/4 and a small syrinx from C3 to about T3 (in my signature). ASIA D.

      I guess what i'm trying to get at is what is more or less typical in terms of spasticity for UMN bowel. I know many people have a tight external sphincter, but specifically levator/internal sphincter tone. If this is pretty common, then I just don't understand how people with some sensation are not plagued with pelvic pain, especially after bombarding these already tight muscles with noxious stimuli, hence making these muscles clamp even tighter like myself. While I have no tone or spasticity in any other part of my body, I guess I'm just hyper-excitable in this area, like you said everyone is different in some aspect. But, my problem could also stem or be aggravated by other problems like chronic tensing of these muscles due to stress, in which case there might be a little bit of hope to reverse some of this tension.
      C3/4 Incomplete. Ependymoma tumor, syrinx from C to T.

      Comment


      • #4
        One point to keep in mind is that many people on this site have had a traumatic injury. While non-traumatic injuries do have many similarities, at times there are differences. This just might be one of them.

        Tensing those muscles my be adding to your problem. I would encourage you to do some deep breathing while doing your bowl program. See if it helps!
        CKF
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment


        • #5
          I feel your pain!

          Seawalker,
          I am a T-12 incomplete paraplegic, and I experience a similar problem, and it has gotten considerably worse since my injury in November 2008. Currently, I experience a high level of pain in my pelvic floor, every other day. It’s rather odd, but like clockwork, one day I have pain in the “7 out of 10” range from “sun-up to sun-down”, the very next day I will have 0 pain.


          My pain started like yours, it began with a feeling of sitting on a spiked-golf ball and it has since spread to coccygeal, perineal, groin, low-back and testicle pain. For me, it doesn’t seem to be as connected to bowel movements like you are experiencing, although my stool is much thinner than it used to be. Often it is more rectangular, looking more like a piece of bacon than poo!


          Similar to you, I have also been told it was nerve pain, as I also suffer from neuropathic/neurogenic pain in my legs. After a Spinal Stimulator trial, I determined my leg pain and my pelvic floor pain are much different. Fortunately, I switched urologists (the first one told me the pain was in my head and that there was nothing in my pelvis area that could hurt like that). The current urologist thinks I am suffering from pelvic floor pain syndrome. He recently sent me to physical therapist that specializes in pelvic floor pain. For the first time in 2 ½ years, I have experienced a tiny bit of relief… although not a ton… some. I have only seen her for a couple of weeks, but I think we are on to something.


          While under her care, she mentioned a book written by two Standford specialists. It’s called: “A Headache in My Pelvis: A New Understanding and Treatment for Chronic Pelvic Pain Syndromes.” It’s on its 6th edition, which I thought was a good sign. I just ordered it from Amazon, so I haven’t had a chance to read it yet. Amazon shows that 36 out of 46 people who have reviewed the book give it 5 stars, and the success stories sound promising. Here is the Amazon link: http://tinyurl.com/3kxpwgp.


          The authors, Dr. Wise and Dr. Anderson, also maintain a website: http://pelvicpainhelp.com/ .

          That’s what I have so far… I will keep you updated…

          Comment


          • #6
            Dud!!!

            It is so good to finally meet someone that shares the same problem, And pretty startling that we share almost the exact same symptoms as well as timeline toward and difficulty in obtaining a "pelvic floor pain" diagnosis. I am also very happy to hear that you recognize the pain to be somewhat different than what you and I experience in our legs. There is no doubt to me at this point that this is simply some kind of central neuropathic pain. Unfortunately we seem to fall in some grey area of SCI and pelvic pain. I would love to share some more of our treatment, and symptoms if your willing. My pain has since spread to other muscles as well- low back, perineum, piraformis and coccyx. Not too much penial pain yet but I do have pain at the tip on occasion.

            Regarding the every other day - clockwork pain schedule... I have had three injuries recently - a simple knee surgery, a hernia, and an anal fissure. After each of these healed to some extent initially, they also then went into an every other day pain cycle of their own. A cortizone shot and therapy to the knee instantly broke the cycle. My anal fissure completely healed but the pain and spasm remained every other day. So all of this tells me that my nervous system gets stuck in some way with the pain signal, and is not just my rectum pain anymore. Each had there own "bad days" not all on the same day.

            Your "Bacon Strip" stool... lol, I had the same thing for a while. According to my therapist a lot of people with Pelvic floor dysfunction have this. This can probably be corrected with therapy hopefully. I am definitely pooping the wrong way since my sci. Since we have strength in our abdominal muscles we can still force stool through a small opening. One thing I am unsure about is my external sphincter being tight. Upon exam it is not tight, but one defecation begins it might start to tighten some. this could cause the same problem of thin stool, and be a response to pain. Something that separates a person with this problem and an SCI patient.

            I am going to see a pain doc next week to get a block to the Ganglion Impar. This is used to alleviate rectum pain and coccydynia. Another block can be tried to the pudendal nerve which can be irritated by the pelvic floor and cause the same pain. Hopefully this will break the cycle somewhat. Then I will decide on a temporary colostomy or pump if that doesnt work.

            I read Dr Wise's book. Pretty good, he is a little bit hell bent on the relaxation thing, I havnt found stress to be the root cause of this but it certainly doesn't help. Another good book is Healing Pelvic Pain. But its good that your seeing a therapist.

            There i a member of this forum named Kathie who went through this with success, so hopefully we can too. What is your degree of function? Do you walk, sit a lot, full strength?

            Jason
            C3/4 Incomplete. Ependymoma tumor, syrinx from C to T.

            Comment


            • #7
              Hey Jason,

              I totally agree, when I read your posts… my first thought was, “I’m not crazy after all!” My wife is always super supportive; she understands my pain and supports doing whatever it takes to find the solution. Doctors on the other hand… I have had about every response you could think of. I had one pain specialist in Seattle come through the door and say, “This pain you are experiencing, get used to it, you are going to have it for the rest of your life.” Needless to say, we moved on… I have had another at Swedish in Seattle, after about 5 minutes into the visit offer up, “You are an angry person… Do you know Russell Crowe?? You look like him… he is an angry person too!” I had said like 3 words! As my wife will attest, I am not an angry person, quite the opposite actually. Luckily, 90 percent of the doctors I have seen have been great. So, back to what I started to say… It’s nice to find somebody with very similar pain issues!

              You mentioned you were going to see a pain doc about a block to the impar ganglion; how did that go? A week ago, this past Tuesday, I had a radio frequency injection into this region. My pain Doc said it could take a week to 10 days to take effect, and I am just starting to notice a slight reduction in pain… so I will keep you up to date on the progress of this injection. If you move forward with it, I would love to hear your results..

              You mentioned a block to the pudenda nerve… After working with my pelvic floor PT specialist, we are thinking that would be a good idea for me too. I have been working with this PT for about three weeks… and she has made the biggest difference on my pelvic floor pain. If you aren’t seeing a pelvic floor PT… get in touch with a good one. She spends upwards of an hour and a half, massaging stretching my hips, legs and so forth, and on a number of occasions, she has eliminated the pain for up to 4 to 6 hours…

              So… if its cool with you… Let’s see if we can knock our pain down a little… Sure would make life more enjoyable huh!?

              Dud

              Comment


              • #8
                Glad to hear that you are getting your pain under control - or at least a little bit. Going to a "continence" professional like you did is a good idea. Unfortunately, there are not a ton of them around. In would also suggest that a good gastroenterologist should be seen to make sure that the pain is indeed from your injury.
                Just a couple of other thoughts.
                CKF
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                Comment


                • #9
                  Hey Seawalker -- Spent the night in ER last evening. Had a CT scan that showed a bladder hernia, which could very well be causing the type of pain I have been experiencing. I had asked my urologist about this before, and he had told me that was not my issue. Thank goodness for an ER doctor that was on his toes last night.

                  I am going to go back to my current urologist (supposedly the best in my town), but pretty sure I am going to seek the expertise of another doctor; there is a Urologist in Seattle, WA that specializes in bladder issues for spinal cord injuries.

                  I have been fighting this pain for over 2 years, along with back to back to back UTI's. Now that I know I have a bladder hernia... Maybe my pain problem will be solved??!!! I have asked about a hernia before, and he said “highly unlikely!” Wrong…

                  I will keep you up-to-date on how this plays out… fingers crossed -- Dud

                  Comment


                  • #10
                    Seawalker, I think we've found another tumor thing! ~lol~ I'm a C2-T4 incomplete with syringobulbia [brain stem syrinx].

                    The rectal pain you describe is eerily similar - your spiked golf ball is my popsicle covered with glass shards. It's become a 24/7 phenomenon and becomes far more pronounced when gas or stool puts pressure on the colo-rectal sphincter. I use both Enemeez and dig stim for bowel care, and both are exceedingly painful even when Lidocaine gel is used as lubricant. The irritation and spasms caused by the Enemeez are at their worst just before the bowel movement begins and take my typical level 7 pain up to a 9. The dig stim leaves me feeling extremely bruised.

                    But the worst part are the spasms. At times, the pelvic floor muscles are so spastic that I'm unable to pass gas, triggering a vicious cycle: pressure from trapped gas increases muscle spasms, which prevents the release of gas and stool, triggering more pressure, ad nauseum.

                    As bizarre as this sounds, the spasticity problems are tied to the consistency of the stool which, despite a regular bowel program, varies from constipation that produces everything from pebbles to ping pong balls to virtually liquid stool. The only time I don't have to strain or have incomplete bowel movements is when the stool has a 'goldilocks' consistency [not too hard, not too soft, they're just right]. When this occurs, I consistently evacuate between 70-90 percent of the stool using Enemeez alone and the remainder with dig stim. Any other time, I need to strain and use dig stim to evacuate. While this is to be expected with hard, dry stool, I've never been able to understand why it's such hard work and so painful to push out stool that's the consistency of soft serve ice cream. The spasms affect the stool the same way they do for you and Dud, but in my house, they're referred to as 'flounder poos'. I also have such severe spasms that I need the aid of dig stim to evacuate stool that's bordering on diarrhea.

                    While there's small comfort in knowing that these spasms keep Me from having the involuntary bowel movements that plague so many others, there are many days when I'd happily trade the increased risk of having an accident for the ability to release a room-rattling fart!
                    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                    ~Julius Caesar

                    Comment


                    • #11
                      Originally posted by seawalker View Post
                      Dud!!!

                      It is so good to finally meet someone that shares the same problem, And pretty startling that we share almost the exact same symptoms as well as timeline toward and difficulty in obtaining a "pelvic floor pain" diagnosis. I am also very happy to hear that you recognize the pain to be somewhat different than what you and I experience in our legs. There is no doubt to me at this point that this is simply some kind of central neuropathic pain. Unfortunately we seem to fall in some grey area of SCI and pelvic pain. I would love to share some more of our treatment, and symptoms if your willing. My pain has since spread to other muscles as well- low back, perineum, piraformis and coccyx. Not too much penial pain yet but I do have pain at the tip on occasion.

                      Regarding the every other day - clockwork pain schedule... I have had three injuries recently - a simple knee surgery, a hernia, and an anal fissure. After each of these healed to some extent initially, they also then went into an every other day pain cycle of their own. A cortizone shot and therapy to the knee instantly broke the cycle. My anal fissure completely healed but the pain and spasm remained every other day. So all of this tells me that my nervous system gets stuck in some way with the pain signal, and is not just my rectum pain anymore. Each had there own "bad days" not all on the same day.

                      Your "Bacon Strip" stool... lol, I had the same thing for a while. According to my therapist a lot of people with Pelvic floor dysfunction have this. This can probably be corrected with therapy hopefully. I am definitely pooping the wrong way since my sci. Since we have strength in our abdominal muscles we can still force stool through a small opening. One thing I am unsure about is my external sphincter being tight. Upon exam it is not tight, but one defecation begins it might start to tighten some. this could cause the same problem of thin stool, and be a response to pain. Something that separates a person with this problem and an SCI patient.

                      I am going to see a pain doc next week to get a block to the Ganglion Impar. This is used to alleviate rectum pain and coccydynia. Another block can be tried to the pudendal nerve which can be irritated by the pelvic floor and cause the same pain. Hopefully this will break the cycle somewhat. Then I will decide on a temporary colostomy or pump if that doesnt work.

                      I read Dr Wise's book. Pretty good, he is a little bit hell bent on the relaxation thing, I havnt found stress to be the root cause of this but it certainly doesn't help. Another good book is Healing Pelvic Pain. But its good that your seeing a therapist.

                      There i a member of this forum named Kathie who went through this with success, so hopefully we can too. What is your degree of function? Do you walk, sit a lot, full strength?

                      Jason
                      Hi Jason,

                      I have been suffering from pelvic floor dysfunction since 2007 involving thin bacon stools that are extremely hard to push out followed by severe pelvic pain/spasms that used to be relieved after a couple of hours by passing a lot of gas that I had to literally force out and was loud but odorless. Suddenly my abdomen/rectum would feel like a balloon had deflated in there and I felt complete relief almost like nothing was ever wrong in the first place. We tried to do a colonoscopy after every other doctor I saw recommended increasing fiber in my diet and the colonoscopy was clean with no findings. I got pregnant with my first son in 2009 all throughout suffering the same condition with the same pain, moved out of the US in 2010 where we again tried pursuing this problem to no avail. No one seemed to have any answers and I grew progressively worse since and ended up with an extremely painful anal fissure in March 2012 and at the time the colorectal surgeon treating me administered a local anesthetic (lidocaine and epinephrine) to examine the fissure. At the time the pain (sphincter muscle spasms) from the fissure was so very debilitating that it took me a very long time to realize that my pelvic pain symptoms had actually disappeared. At the time my husband and I attributed it to the possible change in my diet which I had to change drastically (eliminate breads, rice, processed food etc.) to soften the stool and reduce the pain of having a bm with the fissure. Three months later I got a similar anesthetic to cauterize a skin tag that developed an abcess on it due to the fissure draining on to it. And three months following that I had the same anesthetic again to cut open a fistula that had formed because the fissure just would not heal. All this time I was having relatively easy bm's with typically a first incomplete bm with the same pelvic pain and spasms followed in quick succession by a second bm where I completely emptied out with no pain no spasms and was never gassy or bloated, it was just miraculous. And exactly three months later in November of 2012 the symptoms were back with a bang with thin stools difficult to pass and pain and spasms and the whole works. We were completely mystified as to what was going on and tried one by one to do everything we did while treating the fissure assuming correctly that something that was done to treat the fissure inadvertently addressed my pelvic pain symptoms. Long story short nothing we did worked, we even ended up trying homeopaths and naturopaths and tried being treated for a yeast infection by a naturopath and I somehow got worse and ended up with 24/7 pelvic pain with whatever the naturopath gave me to treat the yeast infection. Finally my husband got us to transfer back to the United States in February of 2014 and since then we managed to see a gastro who keenly listened to my entire medical history and correctly ordered a defecography MRI which revealed paradoxical puborectalis contraction as the cause of the symptoms. The gastro suggested botox injections to the pelvic floor and we did that in May 2014 and it ended up worsening my condition further and I needed to use enemas even to have a bm for upto three weeks after the botox procedure. The gastro then recommended that I see a pelvic floor pain doctor who recommended that I do a Pelvic MRI with Neurology that revealed that I have an ilionguinal and possibly even a pudendal nerve neuropathy. For the last three weeks I have been administered two ilionguinal nerve blocks and one pudendal nerve block and have had about 6 sessions with a pelvic floor therapist with no significant improvement in my symptoms. My doctor has now recommended that I try a ganglion impar block and in the meantime with the diagnosis of a nerve neuropathy we finally guessed that the local anesthetic that I was administed by the colorectal surgeon in other country that consisted of 2% lidocaine and epinephrine may have inadvertently relaxed my pelvic floor enough to relieve my nerve neuropathy and pelvic pain and essentially may have functioned as a strong nerve block so we may try doing that as well.

                      Sorry for the long post, this has just been such a frustrating and a literally and figuratively painful journey. Thank you so much for reading this far. My question for you is regarding the ganglion impar block that you had scheduled. How did it go, Lord willing it helped you and completely relieved you of your symptoms. Any update on your current situation pelvic pain wise would be greatly appreciated! Looking forward to hearing your response!

                      Thanks,
                      KS

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