MS and Paralytic Ileus

[funmonkeytoes]

*I have posted the question below in the Neurology Community with no response [I've actually posted three questions with no response].  I am beginning to get very worried and will call my doctor if I can not solve this issue with an enema.  I have no idea if an enema will work, though, as I can feel no stool in my rectum nor above in my colon (by feeling inside the rectum, along the back of my vaginal wall, and my abdomen).  I added a few things about my history with constipation I thought might be helpful in answering this question.*

Is Paralytic Ileus associated with Multiple Sclerosis?  I seem to be unable to pass stool -- even though I take Miralax daily due to the many constipating medications I take -- including fairly high doses of opiates for a Central Pain Syndrome.  All I could find when searching for some clues regarding the severe constipation I have (I haven't had a bowel movement in three weeks now) was the condition named above.  Going this long without a bowel movement has never occurred before.  

I am not experiencing any abdominal pain or hardness, bloating, gas, nausea or vomiting -- nor any urge to defecate.  I have been passing urine and drinking sufficient fluids.  I am recovering from a recent MS exacerbation brought on by an upper respiratory infection.  I did five days of Solu-Medrol - one gram a day.  I was hospitalized during that time and blood work showed a low blood potassium level - this was before the steroids.  I don't know if that is significant information - but thought I'd mention it just in case.  I took oral potassium at the hospital.  

I did have what seemed like a mild stomach ailment a few days before the cold and subsequent time in the hospital where I had diarrhea ( no vomiting) for a day or two.  My appetite has been pretty nonexistent, but I have been eating --mostly cereal with some fiber - but recently switched to high fiber cereal a week ago.  I thought perhaps I wasn't moving my bowels because of my lacking diet - just not eating enough; but it seems that the muscles are not behaving normally...pushing waste into my colon or rectum where I can feel it.  Should I be worried?  Is this an emergency or one waiting to happen?

I normally have a hard time passing stool as the muscles seem to not coordinate properly and almost always have to use a gloved finger or two to "push" the stool downward where I can feel it through the back of my vaginal wall.  This is inconvenient and takes time -- but seems to be the only way to get relief even when stool is in the rectum.  This has been diagnosed as a neurological issue associated to my MS.

[Dreamitanyway]

Hi!  I also have MS.  I am a certified nutritionist.  I manage my MS with food and supplements.  Drugs I see as mostly more toxins I do not need to add to my life.  Please read Terry Wahl's book, Minding My Mitochondria and well as books on Paleo diet.  Basically, stay away from processed food (Carnation!), bad fats, refined sugar, grains, dairy and legumes.  Eat tons of fresh (preferably organic) vegetables, fruits and meats.  Always get plenty of healthy fat for your brain and nervous system (extra virgin coconut oil, extra virgin olive oil, organic avocado oil, and even fats from grass fed, free range meats.  I make green smoothies every single day in my Vitamix and put in it greens, cucumber, blueberries, 1/2 carrot, 1/2 banana and organic unsweetened vanilla milk.  I eat loads of veggies in my omelets and other completely homemade salad.  I alway am sure to have broccoli, cauliflower or asparagus each day.  Veggies (and small amounts of fruit as fruit can be too sugary) and fat are your best friends.  You will see, you do not need grains for fiber or nutrients as we are always lead to believe.  Grains aggregate the immune system and often drive auto immune disease.  As I said, read up on Paleo.  I was diagnosed 3 1/2 years ago with MS, and I am healing my body with food.  It is work but the rewards are priceless!  Carolyn

[Karen1dh]

Amazing!  Your situation is nearly identical to my current situation,  5 years after your post.  I have just had a minor MS flare due to a slight sinus infection,  treated by a round of prednisone,  and weeks and weeks of constipation.  Only real sign of it, other than no poo, is a distended belly.
None of the standard options have provided relief.   Enema produced very little, same with suppository.  I have been taking stool softners all along,  so really is odd to not be going.   Have been concerned about a blockage, but lack of pain if the blockage is caused by MS, wouldn't necessarily have pain.  May just not feel it. Your doctor seemed to overlook that.

[funmonkeytoes]

The doctor I talked to spoke mainly of getting on a diet that was more "normal" in general and then seeing what the gastroenterologist recommends when I see her.  He thought trying to eat even five or six small meals a day, and adding more fresh fruits, vegetables and especially WATER would be helpful.  When I look at the medications I am on and how little I eat -- I am aghast.  It is no wonder I suffer from both lack of appetite and severe constipation.  I do supplement my food intake with the mid-calorie Carnation Instant Breakfast (which I am lucky to get for free through Nestle because my husband works for them).  This way I get the nutrients I need....but not enough fiber to be sure.  That's why I was eating mostly cereal to add extra fiber to my diet -- cereals like Grapenuts, Total, and Raisin Bran.  

We talked a little about another possible reason for my constipation that may be due to the flare-up I am recovering from: Intestinal Pseudo-Obstruction. He said I "probably" would have been having pain if that were the case, but it will still have to be ruled out with some "fairly simple tests".  He said Pseudo-Obstruction is a more serious MS complication that can be acute or chronic.  So I have been doing as much research on that condition as well as Atonic Bowel.  They are basically caused by the same thing - a lack of normal intestinal muscle tone due to nerve damage originating in the brain.  

Using medications that help move food faster through the GI-tract is an option...metoclopramide is the one drug I can remember that he mentioned.  Do you have any experience with this medication?  So far I have done only the few enemas and am still taking Miralax for this prolonged bout of constipation and am hoping it does not repeat itself before my appointment with the GI specialist in May.  

Gosh, I suppose I could go on and on [and pretty much have] about all of the possible additional culprits here.  It doesn't change the fact that I have a very aggressive, progressive course of MS; and I am pretty lucky to have gone eight years without any major bowel or bladder dysfunction.  

I am very appreciative of your response(s) to my questions and concerns.

I hope you are doing well at this time.

Thanks again,

Debra

[PrincessKatie]

I honestly don't know anything about Atonic Colon, but I am so glad that you have a diagnosis! I put your post on a watch.

What have they told you to do/eat in the mean time out of curiosity? Enema's aren't so bad. You can get used to them after a while. Any laxatives should probably be used under the GI's watch. Even people without MS have trouble with their GI tract getting sloth-like from too many laxatives.

Best wishes!
Katie

[funmonkeytoes]

I wasn't sure who to "send" this update to since I haven't received a reply as of yet, but I wanted to update my post for whomever might read it.  

I have been diagnosed with Atonic Colon, and it is caused by the nerve damage associated with my Multiple Sclerosis.  I need to see a Gastroenterologist for follow-up care and figure out how we can prevent this situation from repeating itself - because it more than likely will be a chronic problem.

I had to do several enemas to relieve the constipation......which was thankfully not an obstruction.  It is true, though, that the stool was too soft from the use of Miralax for my intestines to effectively "move" the waste through my body.  Yet if the stool was too hard, it mat have caused an obstruction -- which I would have noticed due to severe pain.  I am grateful it did not end up being worse.

Thank you for any further replies in advance.  I would appreciate any advice, insight, or general information you may have on Atonic Colon.  I am actively searching the internet also for all I can find out about this condition.

Funmonkeytoes (Debra)

[funmonkeytoes]

I appreciate your very frank answer.  I can tell at this point there must be something seriously wrong.....or, indeed, I would not have posted this.  It is the absence of symptoms that is very weird -- with bile building up in my system - you'd think I'd be vomiting - yet I am not.  

I do have MS, a complicated medical history, and the fact that I am NOT in pain is worrisome in and of itself.  I intend to call the doctor and go to urgent care or the ER tomorrow as he or she orders.  I am not waiting until Monday.  Tonight I thought I might try taking an over-the-counter laxative and am even too scared at this point to do that.....with the possibility it could do more harm than good.  But you can tell from my post I am quite experienced with the hospital and the ER -- just never have had an experience like this.  

You'd be surprised at how little I could find out about an issue even similar to this -- so I can assure you, I am not "taking it lightly" nor do I intend to "ignore it".  I did find a couple of cases of paralytic ileus in MS patients in my search for info.  I am aware, too, that toxins are more than likely building up in my system -- but with everything I have tried -- I kept thinking, "Okay, today I'll finally be able to go"....then realized a few days ago exactly how LONG it has actually been. Because I've been having NO pain and usually only have a bowel movement every week to ten days I really didn't realize it had been so long.  Yes, I'm scared.

Once again, thank you for responding.

[PrincessKatie]

"Should I be worried?  Is this an emergency or one waiting to happen?"

If you have not passed anything in 3 weeks, you need to get help immediately. Your body is not functioning properly and toxic waste is building up inside of you. Unfortunately, I don't know much about MS, but I do know that it is not something to be taken lightly or ignored.

"I am not experiencing any abdominal pain or hardness, bloating, gas, nausea or vomiting -- nor any urge to defecate."

This also concerns me. Most everyone with constipation feels at least one of those things and the fact that you don't might be due to the MS, but still is a problem.

Basically, bile is backing up inside of you like a clogged pipe since you are still eating. Imagine a clogged sewer pipe...what happens when you keep using it? Eventually excrement and toxic waste starts backing up into the streets or the yard or the toilet!

Please go to the doctor ASAP and let them know how long this has been going on. If you experience ANY of those symptoms above or anything out of the ordinary, go to the ER if you cannot see the doctor that day. It is better to be safe than sorry and because of your unique and complicated situation, you cannot be too safe.