Or is it . . . ugh . . . our digestive system, an evil system from the lowest corner of the devil's lair!
When you think about it, the body really is a marvelous machine. It grows, heals, adjusts, has defenses, reproduces, has this amazing thing called a brain, and can go on for hours. Nevertheless, assuming I get to heaven, one of my first questions to God is going to be, “The digestive system! Honestly, you couldn’t think of a better design???”
So much can go wrong with this part of the body, from the mouth to the anus. Some of that is self-inflicted (smoking, drinking, drugs, etc.), but most just happens. And when something goes wrong, you cannot just stop using it to give it a rest or wrap it up and let it heal. Nor can you stop doing what makes it hurt . . . eating.
I saw a meme that said, “Ulcerative colitis can’t hold me back!” Yes, it can, and it will. It can hold us back, push us back, shove us down. That doesn’t mean it will be forever and we are defeated. But wishing and hoping and “happy” thoughts will not keep UC at bay. Sometimes we can’t just grit it out. Sometimes it is going to knock our legs out from under us and the breath from our chests. The thing is to adjust as best we can, remember that the misery is temporary, and there are good things ahead.
So, we have to live with our guts. How do we do that when they are not whole?
A nightlight in the bathroom. After running into walls, the door, and tripping over the dog, I put a small nightlight in the bathroom. It is not so bright to fully awaken me when I have to go to the toilet at night, but light enough to keep me from running into things.
Adult diapers. A relative called one afternoon and asked how I was doing. After updating her with my stomach problems, she suggested adult diapers. I didn’t say anything, but thought, “No way I’m wearing those.” Three days later, after four accidents including two that were two hours apart, my frustration (and underwear) exploded, and I added diapers to the grocery list.
There are two kinds of adult diapers. One that is pulled up like underwear and one that has tabs like baby diapers. I use the tabs kind because I’m a small person and need to pull the tabs together tightly to get even the small size to fit. If you use the pull up kind, make sure they can be removed by pulling the sides apart, not just pulling them down, because pulling soiled underwear down sometimes results in, well, a nasty mess, which negates the use.
After wearing the diaper the first day I was like, “Why didn’t I start using these weeks ago?” I’ve lost count how often wearing the diapers has kept me from having to clean up an embarrassing, smelly mess on the floor or me, not to mention cut down on the amount of laundry to wash. For me, adult diapers are lifesavers that prevent frustration overload at home and anxiety away from home. I don't have to wear them all the time, but when I do, I am so grateful for them.
Ice packs/heating pads. For about a month, when I first woke up in the morning before I could do anything else, I had to sit with ice packs on my stomach for about twenty minutes to dial down the pain before I could eat breakfast and take my medicine. Fortunately, my grandchildren had given my husband and I homemade packs, so we had new ones that were gratefully used.
Distracting material. You will spend copious
amounts of time in the bathroom. Some of that will be in pain. Having a
distraction . . . your phone, a tablet, books, puzzle magazines . . . helps
greatly. I keep puzzle magazines in the bathroom because I don’t always have
time to grab a device in my mad dash to the bathroom. I should keep an extra pair of reading glasses in the bathroom, too, as I don't always have time to grab those.
A shower seat. During my worst times, including some bad medicine side-effects, my muscles became very shaky. I could not shower without sitting at least once. I didn’t want to take a bath because once sitting in the tub, I was not sure I could get myself out and washing my hair in the shower was much easier than the bathtub.
Someone to drive you to appointments. Until you are feeling well enough to drive yourself, this will be a definite need. If you live with others, this probably won’t be a problem. But if you live alone, you need to find people who can take you to appointments and pick up things that cannot be delivered.
A colitis binder. I’m a fairly organized person, but I found my colitis information . . . test results, prescription data sheets, insurance letters, etc., . . . scattered all over the house. So I bought a binder with an uplifting message on the front and organized all my colitis papers into it. Having everything in one place is one less thing to think about and is easy to take to doctor appointments when needed. I also keep inspiring and humorous messages found on the internet or from friends in the binder for those times when I need something to make me smile.
Keep a food and bowel movement diary. I fought
this one. I did not want to “waste” the time. But eventually I gave in, and
like the adult diapers, wish I had started tracking my food intake and outgoing
bodily functions months ago. You can find forms online, use a blank piece of paper, use the form I created which I print and keep in my colitis binder, or download any of the variety of apps for tracking food and bowel movements.
Here is the link for my form: Colitis Food Tracker form from Colitis Senioritis
Track your prescriptions. If you’re like me, you will have multiple prescriptions from multiple doctors. This will be especially true for older colitis patients. I made a form for this as well, but you can use just a plain piece of paper. This is also in my colitis binder. Colitis prescription tracker form from Colitis Senioritis.
May I also suggest you list your medications and what doses they are in your smart phone. I don't use a smart phone often (it is a dumb smart phone), but I realized I could never remember my meds and doses. So I recorded them in the "Notes" app. I also keep track of medications I tried, but didn't work, and any medications I react badly with. When I was in the hospital for appendicitis, the pharmacist came into my room and asked about my medications. I was exhausted and in pain, so I grabbed my phone, pulled up the Notes, and handed it to him. You should have seen his eyes light up. He said, "Oh, this is cool! I wish more people did this."
Protein shakes (or meal replacement shakes). Figure out ahead of time which ones you like (they all taste a little different) and keep a box handy for those times when you don't feel like eating or can't eat. I put mine in the freezer for thirty to sixty minutes before drinking as I prefer them very cold.
Buy the softest toilet paper you can find! Enough said.
At Work:
My husband is retired, and I am lucky enough to not have to work so I cannot address this issue personally. However, these two websites have some great suggestions.
Digestive Disorders and Your Job by WebMD
7 Tips for Your First Job with Ulcerative Colitis by Healthline
Travel:Put together an emergency travel bag. It is worth the peace of mind. It should include baby wipes, extra underwear, extra pants, toilet paper, and bags for soiled clothing. My bag also includes extra adult diapers. Some people include hand sanitizer but be careful if you plan to leave the bag in a vehicle in the summer. During COVID, some hand sanitizers that were kept in cars exploded in the heat.
Other websites with good general information:
What
to Expect With Long-Term UC by WebMD
Oh, so You're Getting a Colonoscopy?
© Colitis Senioritis 2022
Posts
