Mesalamine Enemas for IBD: My Experience
While I work hard to provide you with accurate and up-to-date information at the time of publishing, as time passes some information may no longer be relevant or accurate. The field of medicine is a constantly evolving science and art. Thankfully! In 1951 a woman was given a lobotomy to treat her ulcerative colitis. That wasn't even that long ago!
Have any of you used Mesalamine enemas to treat your IBD? I have not yet shared here some of my experiences with them. Oohhhhhhh you guys…
It was a blast! Get it?
Setting The Scene: The Back Story
Just typing ‘the back story’ made me giggle because apparently I’m 12 years old. The potential for jokes are endless with this topic.
The experiences I am going to share today are from when I was in college. I was on a high dose of prednisone for a very long time and in addition to that I was on 5ASAs orally and rectally. Oh, and I had no health insurance so that was cool sucked. That is a whole long story in itself but the relevance it has in today’s story is that because of not having health insurance I was unable to be on other medications that would have most likely worked better for me. Actually! Another important thing to point out is that back then I had absolutely no clue what my options were.
I was young.
I was in college on my own.
I had no family support (was kicked out in my late teens; you can read a little about that in this story). I had been fully responsible for my health for many years and didn’t communicate with them about it aside from when I was in and out of the hospital as a kid and when I was diagnosed.
I was in a relationship with someone who was very unkind to me, to put it nicely, and my health was the subject of many fights.
I did not know anyone else who had Crohn’s Disease or Ulcerative Colitis on the internet or otherwise.
Social media for advocacy wasn’t really a thing and information about IBD on the internet was very minimal. For that reason I didn’t even have access to support online or ways of finding information that could have helped me figure something out. I was very isolated with my illness.
My ability to be an assertive and engaged patient was seriously lacking.
A Student with No Health Insurance and No Support is a Recipe for Disaster
Maybe I did have options but I certainly didn’t know what they were back then. I probably could have gotten into a clinical trial or found some sort of financial assistance but I was completely on my own with this. I felt hopeless and helpless. Keep in mind I was diagnosed before biologics were approved for the treatment of Crohn’s disease or ulcerative colitis. So even when I was a kid and did have health insurance my treatment options were limited and not very effective. My life had been a constant cycle of being on steroids for long periods of
time and then being on nothing at all. Most of my youth I had active disease running wile and not undercontrol. I’m positive that the damage that it caused led to the hospitalizations, complications, and emergency surgeries that I would go through years later.
Anywho! I was living on campus in a single dorm room at University with a bathroom I shared with the girl who had the room next to me. I had a full schedule of 15 credit hours, was the VP of a Student Organization, and was working as a part time nanny for an Endrocrinologist at U of Michigan Health System who needed someone to watch her kids before and after school and on weekends sometimes. My health at this point was declining rapidly and with no health insurance I just kept wishing the flare-up I was in away as I had been doing for the past few years.
The Downward Spiral
My health began to decline rapidly with increasing number of bowel movements daily, loss of blood, severe pain, fevers, urgency, and every college students favorite thing; shitting their pants.
Things were bad.
The blood loss actually led me to needing blood transfusions and my colon was so diseased that once a colonoscopy was started on me (when I was hospitalized a couple months later) they had to stop it right away because it was too risky for perforation. It is sad the lengths I went to in order to avoid the hospital because I was so worried about affording it.
You see, without health insurance I was unable to afford to treat my IBD especially
because I was young and on my own. When you can’t afford to treat your severe chronic illness then your health declines. If your health declines you can’t work. If you can’t work you lose your job. If you lose your job you lose your health insurance. See how we went in a circle? It’s a stupid cycle.
Enemas in College
Mesalamine enemas were one of the medications that I was on that year. Did you know that at the time 1 weeks worth of those things cost close to $500?! Just ONE WEEK worth of enemas. Over 100 dollars A WEEK to inject medication up my butt. They didn’t help much so I was truly flushing money down the toilet. My mom actually paid for them because I could not.
Having to do enemas had always been embarrassing to me. I think one of the reasons is the stigma about using the bathroom that I learned growing up. I
think one of the reasons is the stigma about using the bathroom that I learned growing up. Instead of it being talked about like a normal bodily function that everyone has, it was talked about in shamful language. I also used to get in trouble for having accidents so that really played a part in how I handled things. I kept stuff quiet from everyone. That is one of the reasons it took a long time for me to get diagnosed because I was hiding the fact that I was having blood loss and pain.
OK let’s just look at the image to the left. It’s a screenshot of part of the instruction manual for the mesalamine enemas. It says to remain in that position for thirty minutes. THIRTY! How in the heck was I supposed to do that in college? What if the girl I shared my bathroom with needed the bathroom? I couldn’t do it in my dorm room because I was in a relationship and that would have been very awkward for me. IBD has this way about making you feel so unattractive and undesirable.
Hang on honey. Just gonna take off my pants and stick this up my butt. I’ll be here like this for 30 minutes. Don’t mind me!
But that’s not all! I was supposed to use an enema every night before going to bed and was supposed to keep it in for 8 hours.
I repeat. Me. With my incredibly out of control disease. Was supposed to inject an enema into my severely ulcerated and inflamed intestine and keep it there for EIGHT HOURS. UUUhhhhhhhhhh…. how?
My disease was out of control. I was using the bathroom on average over 20 times a day. There was a lot of blood loss. Like I said earlier above, I had multiple blood transfusions once this semester ended. I also had my colon and rectum removed in an emergency surgery. So as you can probably imagine holding that for 8 hours was impossible. It was impossible for me to go 8 hours without using the bathroom period.
It was difficult for me to determine when to use the enemas because I wanted to do it after I was done making all my nightly trips to and
from the bathroom which would allow me my best chance of keeping them in longer. Every night I would use the bathroom and just when I would start walking back to my bedroom I would have to turn around and go use the bathroom again. My nightly routine consisted of crapping my brains out, spiking a fever, and this weird response where my body would kind of uncontrollably shake, sort of like convulsing. I think the shaking like that was a response to the fever and pain because it happened after every time I used the bathroom which was excruciating. Once I felt like it was over and I could go to sleep is I would inject my enema.
The Mental Health Part of It Was the Most Difficult
I was young and in college and I was supposed to be out doing fun things – spending time with friends, going on dates, living it up, right? How could I go anywhere at night if I had to worry about enemas? I felt so horribly unattractive. I really struggled watching my friends at school who did not have to worry about things like this. In my eyes they got to do all the things I wanted to be doing because they weren’t sick.
The hardest part about the enemas wasn’t that I had to use them; it was how they made me feel. You have to remember that the patient I was back then is not close to the patient I am today. I did not talk about my disease unless it was someone extremely close to me and even then I hid the details I was embarrassed about. No one knew just how bad things were for me. The mesalamine enemas were just one more thing that made me isolate myself and the more I isolated myself the more lonely and depressed I became.
I had a close circle of friends on campus and was unable to do many things with them that I would have liked to, like sleepovers or going out because I had to be home to squirt meds up my butt. I became angry over stuff like this because everyone else seemed to be care-free and I was in a constant state of panic. I had to think every little detail through and worry about urgency, if I would have access to a bathroom, if I would be comfortable, and what I would do if I had an accident. I was trying very hard to hide all my symptoms because I was embarrassed and I thought people would think I was gross.
I didn’t know how to tell anyone what was going on and I certainly didn’t want them to know I was having accidents, losing blood in my bowel movements, and that I had to do medicated enemas every night.
There were many fights in my relationship because apparently I was keeping us from missing out on things. There was no sex anymore, we never went anywhere, and everything suffered because everything revolved around my health. I couldn’t feel more bad about myself at that point.
I would sleep naked on a towel because the enemas would leak out sometimes and also because of the night sweats from my fevers and sometimes having accidents. I felt suuuuper attractive. Let me tell you, there is NOTHING romantic about laying in bed, naked on a towel, with a
fever and medicine up your butt after you just spent the last few hours in and out of the bathroom losing blood and mucous.
It wasn’t long after this that I was having my first emergency surgery and spent months inpatient.
This post was edited on 04/11/2019 for grammar, clarity, and appearance as I transfer my site from Tumblr to WordPress.