On the Road Again..

Chronic Multiple Sclerosis is a long term, paralyzing disability. Dealing with incontinence is a huge part of our lives.

My husband can barely walk 20 ft. with a walker. I need to hold onto his gait belt so he doesn’t fall. Since he also needs help with toileting, we find ourselves in daily (sometimes hourly) discussions about incontinence. These discussions can range from jokes to total frustration - even arguments depending upon how frazzled we feel.

After a bout of very loose bowel incontinence, we had to seriously consider what we might do about traveling on an airplane. It was hard enough a few years back, but now that there are such stringent and bothersome security measures it has become much harder.

A person as to spend an extra 2 hours in an airport these days. That’s crazy for mobility challenged people who also are incontinent. It’s hard on the alter-abled and it’s very challenging for the caregiver. Especially when there is a bowel incontinence incident.

Related to travel, I was treated like a criminal the last time I flew simply because I had one way tickets for a 3 legged trip. I was so upset that by the time I returned that I swore I’d never step foot on a plane again unless there were absolutely no other way.

The ridiculous security and waiting isn’t the entire challenge, though.

We also have to pack the walker, wheelchair, toilet raiser, diapers, wipes, bed protectors, extra clothing, plastic bags (for the dirty diapers) and his bed railing.

And guess who gets to lug all that stuff around? The caregiver! So be prepared.

Before enduring endless bag and body searches, x-rays, taking off our shoes (even sandals, how dumb is THAT?), “wanding” and God-knows-what, we will still have to come up with an “incontinence plan” for inside the airport and on the plane where a portable, urinal container may be inappropriate.

Since we wouldn’t be able to change his diapers during flight, they may be smelling pretty ripe and very full after the first couple of hours. That’s not pleasant for nearby passengers nor for Clay’s skin.

So, I went online and looked around for all the male incontinence options. Here’s what I found:

1. Kegel exercises: Clay says he can’t squeeze his perennial muscles at all. I insist that he tries anyway.

2. Diapers/pads/briefs: We like Walgreen’s Super absorbent underwear. We’ve tried different OTC brands and these seem to be the most absorbent for both #1 and #2.

3. Foley or Indwelling Catheters: These are plastic tubes inserted through the urethra and into the bladder. They are held in place by a balloon that is inflated once the catheter is in place. Foley’s are inexpensive & have extended wear time, but there is a high incidence of infection. Some people have even gotten cancer from them.

4. Suprapubic Catheters: Surgically inserted permanent catheter. Very high incidence of bladder and kidney infection.

5. Condom Catheters: Can cause major skin breakdown on the shaft of the penis. Leakage can be a problem, adhesive sticks to pubic hair and also a good chance of getting an infection.

6. Intermittent Catheterization: This is really for emptying the bladder all the way and not for someone who has constant leakage problems.

7. Clamps and Squeezers: These do exactly what they say. They can crush the penis causing swelling, obstruction and possible damage to the urethra. EEK!

8. External Continence Device: This non-latex device adheres to the very tip of the penis. There are no real dangers, but you do have to keep an eye on it to make sure it is sticking properly. It should adhere for 4-48 hours depending on the person’s skin, plus level of urinary and physical activity, I suppose.

The ECD might be a “keeper”.

9. There are drugs, too. In general, we’ve tried to avoid pharmaceutical drugs, as they can be expensive, plus there often side effects, and some MSers have ended up being chemical waste dumps due to all the different drugs they take. One drug for this symptom, one for that, another to alleviate the side effects of the first drug, and on and on it can go…

Clay’s Neuro gave him samples for Detrol a month ago. The first few are always free. We decided today to try it out for a couple of weeks to see if it could be useful for an upcoming trip.

We were fluctuating between the External Continence Device and Detrol. One of the side effects of Detrol is constipation, and we don’t need any more constipation to be sure. However, we thought Detrol might be helpful during travel time. Clay could decide when to “initiate a movement”, then he could just take 1/2 - 1 tsp of Epsom Salts, and voila! It all comes out with (hopefully) no unforeseen accidents!

But the jury is out. Detrol has other side-effects that Clay may not like. Plus, after only a few hours on the drug his legs seem to be much weaker. If he continues to be weak, he will stop the drug.

So, for the caregiver I say: Deciding upon these options is not up to you - even if you are the wife. Drugs and devices are very personal things. You may be putting them on/in or giving them to your loved one, but they are the ones who have to endure the invasion of privacy and the introduction of potentially harmful substances into their bodies.

Just as I may have to endure similar intrusion issues due to security scans, if I choose to accompany Clay on an airplane!

Finally, can’t the airlines figure out a way to give folks in wheelchair’s special consideration?  It would be nice if  they could have separate lines for check-in and security as well as  on-board and terminal based bathrooms designed for those needing assistance.

That’s all I’m sayin’…