Christmas Too Commercial? That's Not Such a Bad Thing

This post is not related to colitis at all. But it is something I’ve had on my mind for a while.

The thought of Christmas being too commercial has been around for a long time. In the movie, “Miracle on 34^th Street,” which came out in 1947 long before I was born, Alfred, a young janitor who works at Macy’s Department Store, says, “There's a lot of bad 'isms' floating around this world, but one of the worst is commercialism. Make a buck, make a buck . . . don't care what Christmas stands for, just make a buck, make a buck.”

Well, I am here to say that I’m grateful for commercialism. At least some of it.

Think about it.

What are your favorite things about Christmas? Mine are the Christmas lights everywhere, inside and outside, lighting up our dark world with brightness of white and color. The beautiful, shiny decorations, especially red and green, we put inside our homes, businesses, and stores, and throughout our yards and porches, and around our communities. The fragrant Christmas trees with all their decorations and lights. Children’s Christmas books that cover a wide variety of subjects and are fun to read and enjoy the illustrations. The music playing in our homes and cars, and that used to play in stores encouraging us to linger longer (and perhaps buy more.) Oh, and the movies and television specials! From movies made back in the 1940s to movies made in the last few years. And last but not least, the nativities of all sizes, shapes, and kinds that remind us of the reason we started celebrating Christmas in the first place.

Here's where the “thinking about it” comes into place.

Would we have any of those things if it wasn’t for somebody trying to “make a buck?” Would retailers bother to make Christmas lights, wreaths, garlands, stockings, angels, Santa Clauses, sleighs, reindeer, elves, snowmen, plaques, candles, bells, ornaments, gingerbread houses, placemats, table runners, plate settings, centerpieces, or any other decoration?

Would they even sell Christmas trees? I love live trees, but sadly I’m allergic, so I’m grateful to those businesses who create and sell artificial trees so I too, can have a tree in my home at Christmas time.

Would publishers, writers, and illustrators care about making children’s Christmas books to help bring the holiday spirit more into our homes if they couldn’t make a profit?

What about Christmas music, both the secular and the spiritual? There may be a few entertainers who would still record Christmas music because they love it so much, but I’m pretty sure we would have far less wonderful music to listen to at Christmas time if it wasn’t for professional singers and their producers trying to “make a buck.”  (Below is a link to a YouTube video of an old song that I just discovered that just swells my heart!)

Think of the Christmas movies and television specials that you love, that without them it just wouldn’t feel like Christmas time. I admit, I never thought for a second that my children . . . and grandchildren! . . . would still be watching “A Charlie Brown Christmas,” “How the Grinch Stole Christmas,” or “Rudolph the Red-nosed Reindeer!”

And then there’s the nativity scenes. If there weren’t companies out there trying to make money, there would not be beautiful, thoughtful nativity scenes out there for us to buy, place reverently in our homes, and ponder upon time and again about the baby whose birth we celebrate. Those of us who are crafty and creative could make our own, but not all of us are so gifted and have to rely on the talents of others. And it is definitely worth it to me to pay someone for their talents so I can have something as lovely as a nativity scene (or in my case, many nativity scenes) in my home.

A lot of things inspire an enormous amount of nostalgia from my childhood, especially at Christmas time. I suspect that is the case for a lot of people. The specialness, the fun, the anticipation, and most of all the magic . . . all of the above things bring that back for me. And all of the above things help me pass that on to my children and grandchildren. All of the above things help to dispel, even if it is only for a short time, some of the negative, swirling sadness and fear in the world we live in.

Most of the things that we rely on to help us gather the Christmas spirit into our homes, to keep it there, and to spread it to others, would not be available. For those who believe in Christ, we shouldn’t need those things to remind us of Him, but this world is so full of distractions and contentions that sometimes it is good to have reminders to draw us back into that place of “peace on Earth, goodwill to men.”

And that is why I am grateful for Christmas commercialism. At least some of it!

Santa Claus (I Still Believe in You) by Alabama

Extra: We Need a Little Christmas by The New Christy Minstrels

Other Posts

© Colitis Senioritis 2023

Update December 2022: And The Next Medicine Coming Up To Bat Is . . .

I had my after-colonoscopy follow-up appointment. I was anxious to talk with my doctor because for the last three weeks I have been going downhill pretty steady. (I talk about it in my November health update.)

Dr. Weber said the biopsies done during the colonoscopy still show colitis. (Duh.) He does want me to go back on prednisone (yea!) but re-emphasized that I cannot stay on it forever. He wants me to finish my current budesonide prescription before going on the prednisone, but I still have around three weeks worth of that medicine! So I've decided I'll continue for one more week, but if I continue to go downhill, I'll start the prednisone then. 

When I do go back on the prednisone, he wants me to start back on four pills, or 40 mg. That's the dosage I was originally put on back at the end of last January when I was in really bad shape. I don't think I need to go on that heavy of a dose. So I think I'll start at two pills a day and see how I feel. The last time I went back on prednisone, I was bleeding pretty bad, going to the bathroom a lot with diarrhea, and my stomach hurt all the time. I took two pills a day, and after only two days, I was able to go on a mile-long walk with my husband and dog. I know you're supposed to follow your doctor's instructions, but I've also learned that you have to listen to your body and that little voice in your head. Besides, if I go on four pills I would have to self-isolate again, as in no going to the store, no church, no being around people, including family members, and especially not children. And, well, we do have Christmas coming right up.

He also wants to start me on a medicine that is brand new. It is called Rinvoq (upadacitinib) and was FDA approved for ulcerative colitis only in March 2022. It is a pill and you only take one a day. But it is so new that some insurance companies are not paying for it yet. (It is mega-expensive, like so many of these UC medicines are, but especially because it is a new medicine.) My doctor said he needs to contact our insurance company and wrestle with them about it. One thing the insurance company may consider is I've tried multiple other medicines and they haven't worked. A definite downside to Rinvoq is it can take up to three months to work!

The doctor never came out and said it, but I got the impression he is getting a little concerned because none of the long-term maintenance medicines I've taken so far have worked. My next appointment is in March, and if this Rinvoq doesn't work, I'm pretty sure he'll put me on one of the injection medicines like Humira or Stelara.  

Once again we are in waiting mode. At least I got the okay to go back on Prednisone for awhile.

Next Update: The "Step" Dragon Rears Its Ugly Head

Previous Update: November 2022, Colonoscopy is Finished, Ended, Complete, DONE!

Gratitude: Let's Hear It For Indoor Plumbing!

I realize, in the United States, it is somewhat of a cliche to express gratitude during November because of Thanksgiving, the ultimate gratitude holiday. 

Or maybe, instead, it is the perfect time.

Since this whole colitis experience has happened, I have thought a lot about how blessed I am for the GOOD things about colitis. I know, that does not make sense. Let me explain.

If this were a hundred years ago, I would be dead. 

Back then, the medical community was just barely starting to understand the combined symptoms of what we now know are colitis and Crohn's. And it would be years . . . decades . . . before medicines were available for these debilitating disorders.

Last December, I was close to the brink, and medicines brought me back. (Thank you, prednisone!) Medicines have calmed my condition enough so that I can do most of the normal things I used to do. We're still trying to find a maintenance medication that can do the same thing, and I hold out hope for that. 

I'm thankful for ALL medicines and supplements, as at various times this past year, in addition to the colitis meds, I required medications for awful nausea, extreme heartburn, iron and vitamin deficiencies . . . oh, and menopause symptoms.

I'm grateful for medical insurance, for how much they pay, be it great or small, of the medication, appointment, and medical procedure costs.

I'm thankful for the men and women who chose to go into the field of gastroenterology, to help those like me who suffer from these often smelly, embarrassing, painful ailments. 

I've always been grateful for indoor plumbing. (Aren't we all?) It is humbling to think that almost the entire existence of the human race has required us to expel our bodily wastes outside, whether out in the open or in a small enclosure. Oh, sure, excavations have shown that some ancient cultures had indoor toilets, but it was reserved for the rich and still involved an open hole in a rock, or rows of open holes, even if it was indoors.

Can you imagine having the abrupt urge to poop and having to run outside to the smelly, cramped, bug-infested outhouse located in the back of your house? Or apartment? During the freezing winter? In the middle of the night??? Especially when you're having that urge eighteen times a day? And then dealing with messing yourself while running outside to the outhouse? I can't even imagine.

I'm thankful for adult diapers. SO thankful! I'm thankful for the peace of mind they offer, and the ease of cleaning up accidents. (And thanks to my wonderful aunt for suggesting them!)

I'm grateful for toilet paper! SOFT toilet paper. An article from the Cottenelle website says, "early humans used whatever was on hand. Leaves, sticks, moss, sand and water were common choices, depending on early humans’ environment. Once we developed agriculture, we had options like hay and corn husks. People who lived on islands or on the coast used shells and a scraping technique. And people indigenous to cold areas used snow."

Yikes!

What the Greeks and Romans used wasn't much better. I strongly recommend reading the Cottenelle article about the origins of toilet paper. It was quite enlightening . . . in a kind of gross-so-glad-I-didn't-live-back-then sort of way. (Link is below, along with another great article.)

I'm thankful to my husband for taking over my family responsibilities when I was so incapacitated for months that all I could do was sit on the couch or curl up in bed, unable to move.

I'm thankful for masks. I hate wearing one, but because of the immune-suppressing medication I'm on, I wouldn't be able to leave the house without it. And ironically, because of COVID, most people don't think I'm strange for wearing one in public.

I'm grateful for television and electronic devices that helped distract me (and continue to do so) when I was incapacitated or stuck in the bathroom for long periods of time.

I'm thankful for the electronic world in general. So many people have documented their experiences with colitis online, created online communities, and continually update research and other information, helping tremendously with my understanding of my condition. Doing this blog has helped a lot to process my "new" normal. (Although I still haven't found that permanent new normal yet.) Even though I was late to jump on the text wagon, texting and email have made it much easier to update family and friends on my condition. And when I was in such bad shape that even talking was difficult, I could still communicate by text, which was helpful when my kids would text, "How are you doing today, Mom?"

I'm thankful for the wonderful, caring people in my corner of the world who have shown and extended their patient understanding. For those who did fun little things to lift my spirits (like put paper eggs all over my front door with words like "You rock!" at Easter time.) I've read about some people who have to deal with family or friends who treat them like they're making up the whole thing or like they're making a bigger deal out of their disease than it is and treat them accordingly. I'm so sorry for that.

Lastly, I am grateful to all those involved in the ongoing research of Inflamed Bowel Diseases and in all diseases and afflictions in general.

These are all the good things about colitis. As bad as colitis is, my situation could be so much worse. When I start feeling despondent or overwhelmed, I remember all the good things that make colitis easier for me.

Especially indoor plumbing!

Cottenelle article: What Did We Use Before Toilet Paper? 

All the Ways We've Wiped: The History of Toilet Paper and What Came Before, from History.com

Other Posts 

 

© Colitis Senioritis 2023

 

 

Update November 2022: Colonoscopy is Finished, Ended, Complete, DONE!

Yippee, my colonoscopy is over! I'm good for at least a year! Streamers, marching band, and fireworks should now commence!

Okay, back to the subject at hand . . . the bad news is my colonoscopy still showed inflammation. The good news is it did not show any bleeding and when I looked at this year's colonoscopy pictures verses the ones from last December, this year's looked WAY better. No more chopped liver!

But, there is still that pesky, rotten inflammation to deal with. 

Dr. Weber said he removed polyps, but he didn't say how many. I was still coming out of the anesthesia, so my mind was not fully engaged to ask how many. That question must now wait until my follow up appointment in two weeks. He did say that most of the inflammation was where the polyps were. It will be interesting to see what the polyp biopsies show.

He upped the budesonide from two pills a day to three, which is probably a good thing because I started going downhill . . . slowly, as always . . . last week. I'm a little worse now, with my bathroom frequency going up and some days dealing with a very achy to slightly painful stomach. I drove to the grocery store this morning and each bump in the road was a wince of pain for me. 

I wore a diaper for a couple of days after the colonoscopy and it is a good thing because I did have an accident. I'm hoping that was from my body still recovering from the colonoscopy prep.

Normally I would be thinking of jumping back on the prednisone, but because I am now on the budesonide, that is a big no no, as it would be double steroids. I get it, but . . . drat!

Dr. Weber did mention the possibility of injections again . . . or in other words, shots. Having to give a shot to myself, every other week. I'm really hoping we can find some oral maintenance medication that will work for me, but so far, no luck.

So now we wait until my next follow up to find out the polyp biopsy reports and probably play musical medicines again. I'm not sure when the music will stop . . .

Update November 30:
I'm up to four or five bathroom visits a day, with great urgency. I'm wearing diapers all the time because I am having accidents. My stomach aches most of the day and my mushy stool movements are quite painful. I'm taking anti-diarrhea pills and will see if they help. My follow-up visit is still two long weeks away. I so hope my doctor lets me go back on prednisone, at least for a month, to get me back to a good place. Why does this keep happening this time of year?

Next Update: December 2022, And The Next Medicine Coming Up To Bat Is . . .

Previous Update: October, 2022, The Search for Intelligent Medicine in the Universe Continues!

 © Colitis Senioritis 2022

Looking Forward To My Next Headache

I've read on the internet, in multiple, reputable places, that if you have colitis or Crohn's disease you should not take NSAIDs (ibuprofen, naproxen, aspirin) because they can cause or exacerbate a flare. No reasons are given because they don't know why. Acetaminophen (Tylenol) is okay.

It doesn't make sense, because NSAIDs are anti-inflammatory. They work by REDUCING INFLAMMATION. Colitis and Crohn's ARE inflammation of the digestive tract, with colitis being the very definition of "inflammation of the colon." Yet we're told not to take this common, over-the-counter, very effective anti-inflammation medicine?

Acetaminophen is not an anti-inflammatory, it is a pain blocker. It works by blocking pain signals from the inflamed or injured area to the brain, but the area still remains in a state of pain.

This has caused problems because, for me, Acetaminophen only works to reduce fevers, but nothing else. The average recommended dose barely moves the pain needle with headaches or sore muscles. And while I didn't have a lot of headaches before my colitis symptoms appeared, I've had some doozies since (usually medication related). I've also had problems waking up with a stiff neck more often than I did before.

I Can Take It!

I wanted to get this figured out once and for all so at my last follow-up gastroenterologist visit, I asked my doctor about taking ibuprofen. He said that he'd never had a patient who had reported a problem with it, and as long as it wasn't taken everyday, I would probably be fine. 

Hallelujah! 

Is it weird that I'm now kind of looking forward to my next headache? Just so I can have an ibuprofen?

After my initial research, I found a recent WebMD article, "NSAIDs and Crohn's Disease," written in June, 2022, that addresses this issue and admits that, "The common wisdom is that these painkillers can make your condition worse. But the link between Crohn’s and NSAIDs isn’t clear-cut." While the article does not mention colitis, much of what it says applies.

Like so many other IBDs issues, this is yet another gray area that may work one way for some, but another for others. So, AS ALWAYS, consult with your own gastroenterologist on any questions you may have, especially about medications.

As for me, I'm going to keep that bottle of ibuprofen handy. For occasional use, of course.

Other Posts

 © Colitis Senioritis 2022

Update October 2022: The Search for Intelligent Medicine in the Universe Continues!

It's been two weeks since my gastroenterologist follow-up visit. At that point, I had been back on the prednisone at 10 mg a day for three weeks. Dr. Weber and I discussed my downhill slide after I stopped the prednisone at the end of June and how quickly I improved after jumping back on the prednisone at 20 mg a day in the middle of August.

Dr. Weber really wants me off the prednisone. And I get it. Prednisone has all of those nasty side-effects, both short and long-term. However, the only side-effect I've had are small bouts of insomnia here and there, and NO side-effects at the lower dose of 10 mg.  So at this point, it's hard for me to be happy about abandoning prednisone. But . . . (sigh) . . . I do get it.

So, Dr. Weber has put me on budesonide, another steroid, at 6 mg a day, to get me off of prednisone. The interesting thing is when I picked up this medicine from the pharmacy, my pharmacist was concerned at the number of refills the doctor had given. The pharmacist said this is not a long-term medication. After talking with Dr. Weber at my appointment, I was the under the impression that it was. So now I'm not sure.

I've been on the budesonide for almost two weeks. I'm feeling really good, but I've learned the hard way that these colitis/Crohn's medications often take weeks to kick in (or out.) So I can't tell at this point if the budesonide is working or not. My stool is still quite loose, about a 4.8 on the Bristol scale. And the urgency is still kind of there. From that first moment of "Okay, I've got to go," to I-better-be-sitting-on-a-toilet is about 30-40 seconds. Plenty of time if you're at home or even in most stores, but not good for traveling long distances in a car.

And thus you see why I titled this post as I did. 

I will be having my next colonoscopy in a few weeks, so I'll post my next health update after that. We are all very curious what it will look like. 

Next Update: November 2022, Colonoscopy is Finished, Ended, Complete, DONE!

Previous Update: September 2022, Prednisone Prevails! (and some insomnia)

 

 © Colitis Senioritis 2022

A Change in Perspective: What is a Healing Person?

I read an interesting article titled, "I'm Sick With Alice in Wonderland Syndrome." The article is about Etta who was bedridden for two years with a condition that left her feeling like she was "floating" outside of her body, "unable to even shower." The article states, "According to Healthline, people with the syndrome may feel larger or smaller than they actually are and also find that the room they’re in . . . seems to shift and feel further or closer than it really is, much like the classic Lewis Carroll character, Alice."

The rest of the article talks about Etta's long diagnosis journey and her efforts to process and manage her condition. But at the end of the article, she says, "I had to relearn how I thought about my disease and how I approached it to be able to heal. It took a tremendous amount of work . . . I had to think of myself as a healing person, not a sick person.”

I understand that we who have Crohn's or ulcerative colitis cannot be cured. Nevertheless, that statement really struck me. 

What is a healing person? What does "healing" mean for someone with a chronic condition that currently has no cure? If you can't be cured does that mean "healing" doesn't apply to you? 

When I think of the word "healing," I feel warmth, light, hope, and purpose. When I think of the word "sick," I feel coldness, darkness, despair, and loss. I realized that as long as I thought of myself as a sick person (which is what I was doing), I was leaving myself susceptible to those negative feelings. But after reading that article, I purposely started to think of myself as a "healing" person, living in the warmth, light, hope, and purpose of my life, not in the despair and darkness of my disease.

It has made all the difference.

Attitude! Perspective! I am a HEALING person! Even if my body can't be healed right now!

On my "Life Takes Guts - Unfortunately" page, I wrote, " . . . wishing and hoping and “happy” thoughts will not keep UC at bay." That is absolutely true. However, our negative thoughts will sabotage and impair our abilities to get through the bad flares, and perhaps more significantly, thwart our efforts to delight in the good times.  

The article ends with Etta saying, "My biggest hope for the future of course is to find a cure. Now that I have hit rock bottom with my health and recovered to where I am now, I have so much hope.”

HEALING and HOPE. Words to live by!

Other Posts

 © Colitis Senioritis 2022

Update September 2022: Prednisone Prevails! (and some insomnia)

I'm still feeling pretty good. I've now been back on the prednisone for almost three weeks. I've been on 10 mg a day, one pill, for five days. My stool has still not returned to its fully solid form and is at a 4.6 on the Bristol Stool Chart. But everything else is great. I've been able to do a few more mile walks with my spouse and dog. I'm feeling well enough to start getting some much needed things done, like clean up the pantry (so we can actually walk into it) and clean out a closet.

And I've ate salad . . . big salad, with spinach, butter lettuce, a few cherry tomatoes, garbanzo beans, cheddar cheese, and croutons . . . twice in the last two weeks and have not had any adverse affects.

I am having some light bouts of insomnia, which I've never had before. I've always had the rare occasion where I lay in bed awake for several hours, but usually even then I could get at least four or five hours sleep. This is different. I sleep for a few hours, wake up and my mind starts going crazy (or my leg muscles start aching for some reason) and that is that. Or, I did have one night where I lay in bed wide-awake for a few hours, arose thinking it would be for thirty minutes or an hour and ended being up the entire night. It is weird to hear the roosters go off when you haven't slept at all. (I am writing this at four o'clock in the morning.) So far, the insomnia only lasts a day or two and then I'm okay for awhile.

I'm assuming the insomnia is a side-effect of the prednisone. When I was on the higher dose, I would occasionally have trouble falling asleep, but that was all. Perhaps I've been taking prednisone long enough that it is starting to build up in my body. I haven't researched yet whether that is possible. I have been diligent about making sure I properly taper off of the prednisone the three times I've tried to go off of it. And I did go seven weeks without it before I had to jump on it again. I would have thought that would have given my body plenty of time to get it out of my system.

Anyway, my next follow-up doctor's appointment is in two weeks. So much to talk about at that appointment! 

Next Update: October, 2022, The Search For Intelligent Medicine in the Universe Continues!

Previous Update: August, 2022, Uh oh . . . This Isn't Good

 

 © Colitis Senioritis 2022 

Are You Getting Over It? (Who do you tell?)

A man in our neighborhood who knew I was having health problems asked recently, "How are you doing?" I gave a vague answer, but then he said, "Are you getting over it?" At first, I bristled inside. What a question to ask someone with a chronic disease! But then it hit me . . . he didn't know. He couldn't know because he hadn't been told. Neither my husband nor I had told him the nitty-gritties about my condition, nor had we given him any overall information. I had been living the hermit life; he now saw me out and about, so of course he assumed I was "getting over it."

I smiled gently and explained that this was a chronic condition I would be dealing with for life. He was visibly surprised and the look on his face told me that he genuinely felt bad.

My "share" belief is that the more people who know what's going on, the better. It drastically cuts back on embarrassment and/or anxiety. If I'm talking to someone who knows about my condition and I suddenly jump up and tear out of the room, it is immensely comforting to know that I won't have to explain things later, that I won't have to say, "It's not you!"

If I'm choosing not to eat something on my plate, the cook knows why and understands that I'm not trying to disparage their cooking.

If I do not attend a planned family gathering, they all know the reason and that I'm not trying to avoid anyone.

If I pass an unusually loud, growly, and smelly bout of gas (that rivals anything passed at a campfire of guys who just ate a huge dinner of beans), instead of dealing with aghast stares of disbelief, horror, and offensiveness, I get sympathetic looks of understanding. (Except from my granddaughter. I worry I might have traumatized her for life.)

However, that doesn't mean that I tell everyone, or that I even want everyone to know. In the case of this neighbor, he doesn't need to know the specifics of my disease because I'm not around him enough. But it was nice that he knew I was quite sick for awhile and asked about it.

So the question arises . . . who do I tell? How much do I tell? After someone knows, how often do I keep them updated? I certainly do not want to become one of those people that when others see me coming, they cringe and think, "Oh, no, we're going to hear about more poop!"

That is one reason for this blog. I was originally sending out a mass email to concerned family, but soon realized that, while some wanted to know every detail, others did not. For those who are truly interested in keeping updated, I give them this blog's address.

Who we tell may change over time. Once we reach remission, the number of people who need to be updated may drop. Or someone we haven't told who is now in our circle more often may need to know.

If we live with family, we should counsel with them on whom to invite into our "those who know" circle. 

Years ago I read an article written by a woman whose divorced mother had multiple sclerosis. The mother did not want anyone to know. However, neighbors noticed that the mother seldom came out of her house, and when she did, she stumbled and walked unevenly. Sometimes her words were slurred. The neighbors came to the conclusion that she was an alcoholic. The mother preferred they thought she was drunk all the time than have them know the truth. It was tremendously hard on the daughter, who was a teenager at the time. People gave her cut out magazine articles about how to cope with an alcoholic parent. (This was long before the internet.) She was referred to Al-Anon. Concerned neighbors invited her to stay with them, if ever needed. The daughter lived in fear that Child Protective Services would take her away from her "drunk" mother at any moment. So in addition to the stress of caring for her mother, not being able to tell people the truth caused the daughter's situation to become even more stressful and hard to cope with day to day.

No, I'm not going to tell everyone I have ulcerative colitis. (But I wrote this blog, ha!) But nor will I allow my pride to make managing this condition any harder for me or my loved ones. My neighbor does not need to be in my "those who know" circle. But there are plenty of others who are, who have offered their support, and who I am very grateful to have in my life!

Other Posts

 

 © Colitis Senioritis 2022

Update Aug 2022: Uh, oh . . . This Isn't Good

 

It's been about six weeks since I went off the prednisone. I'm still taking four mesalamine pills a day. I've been doing good, not completely back to normal but good.

I'm not feeling so good now.

My stool has slowly become more mushy again instead of more solid. I've gone to the bathroom three times in the last twelve hours. Not bad, but heading in the wrong direction. I'm pretty sure I saw a tinge of red when I wiped. (Is it too much to hope that what I saw is from hemorrhoids?) My stomach is aching again, especially after bowel movements. The anti-diarrhea pills I've been taking about every five to six days are becoming less and less effective. My diet has not changed from what I've been eating for the last six months.

This is very discouraging. We'll see how the next week goes.

August 26: 

I've been going to the bathroom more often now, up to six or seven times in a twelve hour period. (But strangely, THANKFULLY, not at night, at least not yet.) My stool has been mush. When I went to the bathroom a few days ago, the bowl was filled with blood. That was it! The next morning I went back on the prednisone, starting at 20 mg a day. 

Within 24 hours my stool became better, about a 4.5 on the Bristol Stool Chart. There's been no more blood. The aching stomach went away. After 48 hours I just feel better overall. No pain, more relaxed, more energy, less brain fog . . . I went for a mile walk with my husband and dog this morning and felt fine! I could not have done that even a few days ago. I was planning on staying on the 20 mg for two weeks than tapering to 15 mg, but we'll see how my stomach is doing in a week.

From what I've read online, people consider prednisone either the devil's drug, because of the intense and terrible side-effects when taken in large doses, or a miracle drug. For me, for now, at the lower doses, it is a miracle drug!

Next Update: September 2022, Prednisone Prevails! (and some insomnia)

Previous Update: July 2022, Not a Duck?

 

 © Colitis Senioritis 2022

 

Update July 2022: Not a Duck?

I've been off of the prednisone for a little over two weeks. After ten days I was feeling really good, better than I have in a long time. But then my stool became loose again. Not diarrhea, but loose. My husband suggested I take an anti-diarrhea pill. I did, and it helped firm my stool up, although not as well as it had been. Nevertheless, it seemed to work so I'll keep taking anti-diarrhea pills when needed and see what happens over the next month. And in every other aspect, I feel pretty good! Even the muscle shakiness is almost gone. I can walk down a staircase without holding the rail. (Yes, walking down my basement stairs is one of the barometers I use for how well my body is doing. Can I walk down the stairs? Do I need to hold the railing, if so, am I just lightly touching it with one hand or clutching it with both hands for dear life? How do my legs feel as I go down? How well do I go back up? Can I go up normal or do I need my arms to pull me up using the railing?)

 In "My Experience," I wrote:

 . . . because of my awful looking colonoscopy pictures and positive reaction to the medications, Dr. Weber said he was officially diagnosing me with ulcerative colitis, despite the negative lab-test results. He said he had a few patients whose tests results were always negative. I think he was going by "if it looks like a duck, sounds like a duck . . ."

Well, Dr. Weber said something interesting at my latest follow-up visit. He said that although he had diagnosed me with ulcerative colitis, he is still not convinced that is my problem. He said that while my colon is definitely chewed up, it does not look like his other patients' colons who have UC. And there's all of my negative biopsy, stool, CT, and blood tests. I don't have the markers for Crohn's disease, either. What does this mean? It's not a duck? Haven't the slightest idea. The only thing I know is that my doctor is, and I don't get to use this word often, flummoxed!

So I’ve been diagnosed . . . sort of. I may be a duck! Or maybe a weird, mutated cross between a duck and some unknown beastly fowl. It just means, forward we go, grateful for the medicines that are working, and hopeful for finding a maintenance medicine that works better.

My body just gives doctors fits. (Sigh . . .) 

Next Update: August 2022, Uh oh . . . This Isn't Good

Previous Update: June 2022: Some Progress 

 

 © Colitis Senioritis 2022