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Offline superhetoric

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Fearing incontinence!
« on: July 12, 2014, 05:01:17 PM »
Hi!  :action-smiley-065: I am so glad I found this forum.

I am a 21 year old female with muscular dystrophy and am in a wheelchair. Some background: I moved out of my childhood home in late 2012 and since have lived in a different state alone with my boyfriend in an apartment. The move was exciting but has caused so much stress in my life I don't know how to fix it all. Because I moved out of state and have Medicaid (in the US), I cannot see my "regular" doctor an hour away without paying out of pocket. Living in a VERY small town, there are only 3 or 4 PCPs in the area and NONE of them will take me on as a patient because of my "medical history" (having muscular dystrophy). It is 2014 and still no PCP.

In May 2013 I began having extreme back pain and numbness all within my saddle region (butt, under-thigh, privates). The pain and surge of new, terrifying symptoms took my already "worry wart" self to a whole different level of panic. It has been somewhat constant since last year. In July 2013, I found out via contrasted CT lumbar puncture that I have some very large, "benign" cysts cradling my spine. If I remember correctly they start around T6 and end around T11. I had a spinal fusion in 2004 to correct severe scoliosis. The doctors I have seen cannot say whether the cysts are new or rather scar tissue build up from my surgery. I did not see a "good" specialist until March 2014 and I had to travel 9 hours for a clinic appointment and have not been back. Basically I'm trying to say that the extreme periods of waiting/not knowing/not living close enough to good doctors has really been the worst/sole catalyst to my anxieties. I am positive that I have OCD, in more manifestations than this, too.

I freak out over ANY symptom or abnormality in my health, especially when it could be linked to nerve damage via my spine. The doctors said not to worry unless I experienced any sudden change and I have been particularly paranoid about developing incontinence. I also suffer from chronic constipation and have all my life due to my muscular issues. In the last two weeks it has been especially hard.

Until yesterday. This is all pretty gross and hard to talk about, but I need to. Very late Thursday/early Friday (July 11) I had a Wild Blue blueberry lager (it's horrible). I woke up without incident and went to the bathroom like normal. There was no cramping or diarrhea but I noticed I had to wipe a LOT for a long time to eliminate any residue from my bum. It did not look like residue but rather like I kept "going" in between wipes. After about 10 minutes of wiping I jumped in the shower and washed up. I assumed that the bad beer made my bowel movement overly-soft and didn't think anything of it. All day afterwards passing gas seemed scary because I never got "relief", just a fullness feeling in my pants and had to check often to make sure I hadn't soiled myself. Going to the bathroom before bed was fine and I didn't have to have a BM but there were skid marks on my panties and there was a--ugh--turd sticking to me. I wiped and went to bed, feeling extremely nervous and hoping nothing would happen during the night. When I woke up today (Saturday) there was poop on my leg and in my panties. Not diarrhea but not hard, lacking-in-fiber poop.

So, I pooped myself a little during the night and didn't notice it all night until this morning. I am SOOO scared that this is true incontinence though I want to believe it was the beer still causing my gut issues but that seems unlikely. I am practically frozen right now with fear and I don't know what to do or if this is even a serious issue and not just seldom happenstance. Like I said, I cannot get to my spinal surgeon without appointment, plus he is 9 hours away. The ERs around here have never effectively treated me and would most likely tell me to go home.

So what I'm asking is: should I be worried? I know it is quite common to have "the runs" with beer but two days later with normal BM? I feel disgusting and totally not in control of the situation.

I would also like to mention that last night I had a bad pain in the middle of my back and it scared me very badly. It has subsided, however.
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Offline totallyphobic

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Re: Fearing incontinence!
« Reply #1 on: July 12, 2014, 08:43:00 PM »
Hi welcome to the forum.

I'm not sure I can really help but I had a friend who had muscular dystrophy and kind of understand how debilitating it can be. I don't think your problem is incontinence but more to do with anxiety and stress. You seem to have many major upheavals in your life from moving to leaving your doctors who know you behind as well as friends and family. I would recommend you call your doctor and make an appointment and if you can do it travel back to your former home for a few days to see him. Not only could he maybe put your mind at ease but recommend a doctor in you area if he knows one. Good luck to you.
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