Category: The Crohn’s Saga

Welcome to The Crohn’s Saga. I was diagnosed with Crohn’s Disease when I was 11 years old, which means I’ve had it for about for 25 years now. I’ve had several flares, been on several meds, had a few hospital stays, and have even had surgery. Last year, I noticed the symptoms of a flare. After about 6 months, I decided to start documenting my life with Crohn’s. I’m not a cartoonist (you’ll notice I can barely draw), but I scoured the web and I couldn’t find much about this that was easy to read or really relatable. So, I present to you my life with a flare. Aside from a few embellishments, everything you are about to read is true.

For more information, see my page “About Crohn’s Disease“.

Old Timer – The Crohn’s Saga Part 21

I was diagnosed with Crohn’s when I was 11, so I’ve been at this for a long time. I think a lot of people in my situation will relate to this. You sit in the waiting room and an older person comes in and talks to you like you’re a kid. Then, their mind is blown when they discover you have a ton more experience at this than they do. They usually don’t like that. It seems to happen every time I have a colonoscopy, small bowel MRI, or even blood work. It’s not my fault that what’s new for you is old hat for me.

Now, for the curious:

What is a Small Bowel MRI?

As I mention in my page About Crohn’s Disease, a small bowel MRI is a pretty standard test used to diagnose Crohn’s Disease and to measure the severity of a flare. Basically, you drink a contrast liquid (barium I think), get into an MRI machine, and then technicians take images of your digestion for an hour or so.

How do I prep for a Small Bowel MRI?

In terms of tests for Crohn’s, this one really isn’t too bad. You fast for 6-12 hours ahead of time, so try to schedule in the morning if you can. Once you arrive, you’ll be asked to disrobe, then drink 3 containers of the contrast. It tastes kind of like seawater. Unpleasant but manageable.

What happens in the test?

After you drink the prep, you’ll be guided to an MRI machine. This is basically a giant magnetized tube. They may insert an IV, then you’ll lie down and be moved into the tube. You have to try to be as still as possible. It is very loud and confined, so those with claustrophobia are sometimes drugged. You’ll lie there while the table moves back and forth, and you’ll occasionally need to hold you breath so they can get a good image. That’s pretty much it. Pro tip – try to find a hospital that will pipe in music. Mine provides headphones and Pandora. It helps keep me calm and prevents me from getting too bored.

Prednisone Part 3 – The Crohn’s Saga Part 22

So much to share about prednisone. It’s common knowledge that prednisone gives you energy and increases your appetite. It is not as well known that it also can stimulate hair growth. So why isn’t it marketed and used as a treatment for that? Easy. It’s poison that destroys your body with longterm use. Prednisone also bloats the face and, even though Crohn’s patients typically lose weight, if they are on a high dose of steroids but can’t exercise, they get fat. It’s just a lousy situation overall.

At this point, I’d like to reiterate that I am not a doctor, but here’s some information about prednisone that I’ve learned from experience:

Why is prednisone used to treat Crohn’s Disease?

As mentioned in my previous comics about prednisone, prednisone is an anti-inflammatory steroid. During a flare, it is commonly used to help stop inflammation and boost other drugs so they can get a foothold.

How long will I need to be on prednisone?

It depends on how quickly you start to recover. In my experience, at least 4-6 weeks is typical. You usually never want to go beyond 3 months. The longest I’ve had to be on it was 8 months and that was hell. Be aware that you cannot just stop prednisone. Instead, you’ll need to taper down, usually by 5mg per week. So, 40mg to 35mg and so on.

What are the side effects of prednisone?

Short term: Uncomfortable amounts of energy, restlessness, decreased attention span, insomnia, aggression, increased appetite, weight gain, bloated face, nausea, bloating, acne, dry skin, hair growth, easy bruising, and an increased amount of time required to heal from bruises and wounds.

Long term: Thinned/brittle bones.

Any tips for dealing with these side effects?

For brittle bones, my doctors have always recommended calcium supplements. For insomnia, I’ve usually taken either melatonin or ambien. Regarding uncomfortable amounts of energy, restlessness, and weight gain, if I’m healthy enough, exercise will take the edge off. I once had a flare where I’d do 200 pushups and situps, and 100 pullups a day. However, if you are too sick to exercise, you’re going to gain weight. There’s also nothing that can be done about the bloated face (sometimes called moon face), acne, short attention span, or the rest. In my experience, it is best to let the people around me (family, friends, bosses, and sometimes co-workers) know what’s going on to try to get some leeway for my unpredictability.

Damned M&Ms – The Crohn’s Saga Part 23

“Damned M&Ms” brings up two common topics with Crohn’s Disease – self care and what should I eat during a flare. Let’s dig in:

Self Care:

With the pain, stress, and frustration of Crohn’s, self care becomes critical. When I have a flare, I try to eat right. However, I’m human. During a flare, I can’t exercise, drink, or enjoy most of my other outlets for stress, so I need to treat myself every once in a while. I need comforts to remind myself of why I’m going through all of this. Should I have eaten those M&Ms? No. Did I regret it? No. Did my fiancé understand? Absolutely not. During a flare, it can be difficult to balance of taking care of yourself and enjoying your life. It gets taxing.

What should I eat during a flare?

Experience is the best teacher here. Doctors will tell you to avoid nuts, seeds, and popcorn since they can get caught and cause complications. Spicy foods can cause irritation and pain. Raw fruits and vegetables can be difficult to digest. I also personally have the most trouble with oily and greasy foods. In terms of what works, my go to’s are peanut butter and chicken. Seriously. Creamy peanut butter and grilled chicken. I’ve heard that peanut oil is good for digestion. I’m not sure if that’s true, but I do know that peanut butter always processes smoothly and is a decent source of protein. Chicken is a non-stringy protein that is also easy to digest. And no, I have not been paid by either the peanut butter or chicken industries for my endorsement.

I’m Fine – The Crohn’s Saga Part 24

How to talk about Crohn’s and being sick? This one is tough. It always was for me at least. Growing up German/Irish/Catholic in the Midwest, I was raised to keep a stiff upper lip and endure. I vividly remember being 18 and having my grandmother tell me that she was was proud of me for suffering in silence. I was extremely sick at the time. Like, could barely walk and in constant pain sick. We went to her place for a cookout and she told me she knew I was hurting and that it was great that I was keeping quiet and putting on a proud face. Her comment meant so much to me at the time. Now I just feel sad about it. I know she suffered a lot and I wish she’d talked about it and reached out for comfort.

Luckily, my fiancé is a tough young woman who speaks her mind and doesn’t take any crap. That she challenges me is one of the things I love best about her. At the time this happened, I’d been out of work on disability for about 2 months and I was starting to get really sick. Having had Crohn’s for so long, I was fully aware of how badly things could go for me. It was frustrating enough never having any energy, so I didn’t want to also her burden her with the details of the pain and my fears of where things could go. What I thought was mercy was actually just hurtful. She interpreted my silence and dismissals as pushing her away. I’m sure she wasn’t the only one.

So, I now take a different approach when I talk about my health. Not everyone needs to know everything, but I let the people closest to me know what’s going on, how I’m thinking about it, and how I feel about it. That last part is the scariest, but also the most rewarding. I try to honor my relationships by trusting them. This shift has helped turn something that could have been a problem into a strength. It also makes my life easier and relieves a lot of the pressure. Crohn’s is a frustrating, painful, and embarrassing ordeal. It’s best to not endure it all alone.

Prep Time – The Crohn’s Saga Part 25

“Prep Time” depicts the defeat and despair I feel every time I’m told I need to have a colonoscopy. A colonoscopy itself is actually a very easy procedure, but the prep is hell. There are a few options out there in terms of what to drink for prep, but they all taste awful and have to be consumed in a small window of time to be effective. I’ve done this so many times by now that even the thought of the smell makes me want to throw up. As I get sicker and sicker, keeping down anything is a feat. Keeping this down is a matter of willpower.

Bearing in mind that I’m not a doctor, let’s learn about colonoscopies:

What is a colonoscopy?

A colonoscopy is a common procedure for Crohn’s and Colitis. It is also recommended for people over a certain age to monitor for cancer. Basically, a camera is inserted into the anus and pushed up through the colon as far as is possible. The camera is mounted on a long flexible tube that can also take samples for testing. Patients are either given a sedative or put to sleep during the procedure.

How do I prepare for a colonoscopy?

Prep is not fun. The bowels have to be cleared for this test to work, so you usually can’t have anything but clear liquids the day before. Then, starting around 5 or 6 the evening before, you need to drink the prep to clean yourself out. I’ve had several different versions of this in my 25 years with the disease and they all have one thing in common – they taste awful. Doctors will tell you to mix with a sports drink and that does help somewhat, but it is still terrible. You will also hate that sports drink afterward. The most common and least intense prep requires that you drink 8 oz every 15 minutes over a 2 hour period. Doesn’t sound too bad, right? Maybe it’s the Crohn’s or maybe it’s just me, but I digest very slowly. This means that by my 3rd drink, I am bloated and sloshy. Add nauseating smell and taste to that, and you’re in a tough spot. Doesn’t matter though, you have to keep going. Throw it up? Just keep going. By the end, your stool should just be yellow water. That’s the goal. I usually don’t sleep the night before a colonoscopy. It is very unpleasant.

Now, this is a common test for older adults, so to those reading this, please don’t be scared. Remember that I’ve had to do this regularly since I was 11, and usually it’s been when I’ve been very sick. So yeah, I’m biased. I have extremely negative memories of prepping. It might not be such a big deal to someone not carrying my baggage.

What happens the day of?

Colonoscopies are usually scheduled in the mornings. It makes sense given that you can’t eat or drink after the prep. You will not be able to drive after your procedure, so make sure you arrange for a ride. You’ll show up, change into a gown, get into a bed, and get hooked up to an IV and a heart monitor. After that, they’ll wheel you into the room and move you onto the procedure table. You’ll then have to roll onto one side and pull your knees to your chest. Around the time you start to realize how messed up this situation is, a nice anesthesiologist will come in, introduce himself/herself, put a drug in your IV, and ask you to count down from 1o. 10-7 are euphoria. You’ll be out by 6.

The drug they give you will probably put you to sleep (in my experience anyway), but you may be in and out of it during the procedure. The meds impair your memory, so if you do wake up, you aren’t likely to remember it. One time I woke up woke up though, and in my drugged stupor, I tried to pull the camera out and run away. They gave me more drugs and I fell back asleep. I’ve also been told I’m a terrible flirt when I’m drugged. Luckily, medical professionals tend to be a very understanding folk.

You’ll wake up back in a bed in the recovery room. You’ll be very in and out of it, and it will take a few minutes for your memory to come back. If you are close enough to your driver, ask him or her to be there, as the doctors will tell you the results of the test, but you may not remember it. Also, know that air gets in the bowels during the test, so you’ll fart a lot. Like a lot a lot. The whole recovery room is like a scene from raunchy comedy. You’ll be tired, achy, and hungry, so it is best to rest for the remainder of the day and take it easy the day after.

Any tips?

If you mix your prep with a sports drink, make sure it isn’t red. That can show up as blood during the test.
If you are concerned about nausea during the prep, ask your doctor about it. I usually take something that helps me keep everything down.
You will be uncomfortably full of liquid during prep, so it is best to walk around to help digestion.
Buy soft toilet paper for this. You’ll be glad you did.
The part about having to repeat if you throw up too much is totally true. It happened to me a few years ago and it was devastating. Try to keep it down, but if you do throw up a lot of it, call your doctor before the procedure and let him or her know.