Forty years with multiple sclerosis (MS) have taught me a lot, but there are two things I’m still trying to learn: Not to panic when a new symptom shows up or an old one gets worse, and not to despair when I can no longer do important things the way I used to.
I know life gets much easier for me when I remember that there will always be ups and downs. I will have good days and bad days, good and bad weeks, months, even years. A bad stretch doesn’t mean I’m getting worse; a good day doesn’t mean MS is going away. I have to keep calm and use all my skills and supports to find solutions to MS challenges.
I had to relearn these truths last November. I was struggling with a urinary tract (bladder) infection (UTI), which was making me very weak. Antibiotics weren’t working; the germs had become resistant to the drugs.
I have had many UTIs in the last 4 years, so I was used to this. But then, my bowels stopped working. Eight days went by without a bowel movement. I had never been constipated a day in my life, and I had no idea how bad it could feel. I felt a constant need to poop, but I couldn’t actually pass anything. To make matters worse, the UTI made me too weak to get on and off the toilet.
I didn’t know what was going on. I hadn’t heard of an MS complication called neurogenic bowel, but I shouldn’t have been surprised. MS damages nerves, and every part of our bodies, including the bowels, needs nerves to work right.
Since I had two separate issues, I decided it would be worth going to the ER, even though it wasn’t really an emergency. I thought they would give me IV antibiotics and a big enema and fix me up.
It didn’t go that way. A nice physician assistant (PA) gave me a large enema, but nothing came back out. Now I was full of 8 days of fecal matter plus the enema fluid. They had to keep me overnight, which turned into 3 nights.
They gave me some strong laxatives, and finally stool started coming out, but because of MS nerve damage, I couldn’t control it at all. I tried getting on a bedpan and onto a commode chair, but stuff only came when I was lying in bed. I don’t know how many times the nurses had to clean me up, but I do remember how supportive and caring they were. On the fourth day, they sent me home in diapers, still mostly unable to control my bowels.
I despaired. I couldn’t imagine living like this, alternating miserable constipation with incontinence. I had forgotten some basic rules: Keep calm, have faith, and look for answers. Fortunately, things got better. Doctors actually have ideas for managing a neurogenic bowel; it’s not that rare. They put me on an over-the-counter fiber laxative and a stool softener. With those plus a glycerine suppository in the mornings, I have BMs most days, and no incontinence. No diapers.
So, except for needing about a half an hour each day to wait for the suppository to work, bowel function is no longer disabling.
But wait a minute. What about the UTIs? As it turned out, the IV antibiotics I got in hospital didn’t work. I got a little better, but not much. This is the big fear about self-catheterizing and frequent UTIs: That all the antibiotics will stop working. And now, for me, they have. Without years of MS experience telling me not to give up, I might have been crushed.
A bad UTI that doesn’t respond to antibiotics can go to your kidneys, and from there to your blood, where it can kill you. This is called urosepsis and, before antibiotics, was a major cause of death in MS patients.
So I was scared, but we came up with a plan. Where I had been reusing catheters, changing them once a day, I started using a new catheter every time. I had known that was safer but hated wasting the catheters. Some patients can reuse theirs many times without problems, but not me.
I no longer had antibiotics to heal me, but I started drinking unsweetened cranberry juice several times a day. That hasn't really stopped the infections but has kept them under control. I no longer get too weak to do things. (NOTE: If you’re going to try this, use only unsweetened cranberry juice. Just boil up some fresh or frozen cranberries and drink the water. Sugary commercial juice doesn’t work at all.)
For both bowel and bladder, I learned that I have to stay hydrated, so I’m drinking a lot more water. The down time is over for now, and life is good again. I have to pay $35/month for catheters (with good insurance) and $20/month for OTC meds, but fortunately I can afford them.
I remember previous times of close to panic, like when I could no longer stand well enough to get clothes out of the closet. I was depressed about having to wear the same pants every day, until I realized I could ask my son to screw in a bunch of clothes hooks at scooter height on my bedroom wall. Now I have more wardrobe choices.
So what I’m saying is: When you feel like things are getting worse, don’t freak out. If you get a new symptom or feel you may be relapsing, don’t panic. Certainly, contact your doctor and see what they think, but also, ask yourself what might be happening in your life and what you can do to manage it.
If existing symptoms, like, say fatigue or muscle spasms, are getting worse, is there anything you might be doing to cause this? Is it maybe too warm, or a new medication you are on? Ask your doctor; ask a support group (in person, or online like the WebMD MS community). Be patient, it might get better, or you might learn ways to cope with the changes. A physical therapist or occupational therapist (PT or OT) might be able to help.
Life with MS can be one challenge after another, but you can handle it if you stay calm and keep looking for solutions.
To connect with other people living with multiple sclerosis, join our MS Facebook Support Group.
Photo Credit: Witthaya Prasongsin / Moment via Getty Images
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