Sudden Neurogenic Bowel?

[Miss Vic]

Thank you for allowing me to post here. I have been beside myself for 3 weeks and need help.

After a lifetime of constipation, my colon has shut down. After 4 weeks of trying literally everything to get things moving and calls to the GI doctors that go unreturned for days, I reached out to my GP. As I mentioned, I tried everything. Miralax, dulcolax. fiber, water, Linzesse, Amatiza, suppositories, enemas. Nothing like this has ever happened. GP set me up for an ultrasound, but when I get there tech says it's really of no use.

My next stop is urgent care, where I get a couple of x-rays. Doctor says he's never seen that much stool in the colon before and to get to the ER. At the ER, more x-rays, labs, then a ct. I have no bowel sounds but obstruction can't be ruled out. Labs discover very low levels of magnesium and potassium and I spend 3 hours having both dripped via IV. I am sent home with instructions to mix 14 caps of Miralax in water and drink in 15 minute intervals. Come back if no BM.

No BM next day and back in ER. More x-rays, more labs. While waiting in my ER room, the curtain is closed but the glass door is open and I can hear everything going on. My nurse is outside my door (I recognized her shoes) and another person (nurse?) comes over and asks how "her" bowel obstruction is doing. She says that I am still here, but no bowel obstruction. Doctor thinks it's ALS. As you can imagine, my world stopped. My heart stopped. It's my 57th birthday that day. They must realize that the door is open, and it's quickly closed. After more tests, I am released with a giant jug of Golitely and a referral to a new GI. I didn't mention what I had overheard.

The new GI I was referred to saw me a couple of days later. My BF was not allowed in the ER and I haven't told him what I heard. The doctor has seen everything and tells me he thinks it's a neurotransmitter disorder.

I am sorry for the lengthy story and thank you for bearing with me. I have had 3 weeks of total hell waiting for the battery of tests to begin. My BF(who I told a day after the GI appointment) is trying but can't give me more than "there, there it will be all right".

Has anyone out there ever had ALS present like this? I have other weird things going on like some neck pain and tiredness but have chalked all of that up to being a stressed out middle aged woman.

Any insight would be much appreciated.

Vicki

 

[lgelb]

So you have an appointment with a neurologist? Are you saying that's in three weeks?

And has your constipation been relieved?

Not knowing what all your tests have been (I would certainly get copies of everything), presuming an EMG wasn't among them, nor a neurology exam, a doc might have a suspicion around a neurological disorder but ALS does not cause electrolyte abnormalities [have these been rechecked?] and the loss of "pushing" muscles comes later in the disease. When all this began, were your diet and hydration typical for you? Any differences in activity level?

I would continue throughout the diagnostic process (which I think should include an internist, given the unexplained Mg/K deficiencies, even if they've resolved), but to answer your question from one perspective, yours is not a story that I have ever seen associated with ALS onset.

Best,
Laurie

 

[KimT]

Are you sure they said ALS and not IBS?

I have no idea how they would jump to ALS.

I also find it difficult to understand why you were released the second time if they arrived at the conclusion that your colon was not working. No matter what the reason, I would think that they would clear your colon one way or another. My family has a history of severe constipation and colon cancer. My mother's colon was cleared and so was my aunt's.

I hope you find answers quickly.

 

[Miss Vic]

Thank you ladies. KimT, the second ER doc tried to get me admitted but beds are at a premium here with Covid. The hospitalist denied me a bed. My diet and whatnot have always been very good. No junk or fast food and I am 5' 5" and 127lbs. I take good care of myself and eat cleanly. Good hydration. I am active. There is a family history of MS (female first cousin).

Again, thank you for responding. You have no idea how much I appreciate it after the self imposed torture I have put myself through.