What you do when you’re taking the latest and greatest drug via infusion for Crohn’s disease, but you have lingering symptoms of urgency and frequency? My doctor and I have been working since April to curb the remaining symptoms I experience daily, despite the Entyvio infusion. Specifically, on average of three times per day, I have about two minutes to find a bathroom or face the messy and embarrassing consequences.
When two types of suppositories failed to help at all, my doctor recommended Elavil. Elavil, also known as amitriptyline, is most commonly used to treat depression. At the beginning of August, a bottle of 25 milligram pills in my hand, I was not thrilled about taking antidepressants again, as I had only recently successfully lobbied my other doctor to discontinue them! But, my G.I. doctor assured me the Elavil is used off-label to treat irritable bowel symptoms. I don’t consider my bowels to be irritable. They are more, um, apoplectic. Perhaps I have more than one bowel condition with which to contend. It wouldn’t surprise me; it’s all gloom, despair and agony in my innards.
I filled the prescription in South Carolina at the end of July, waiting to begin taking the pills until a one-month stay in Wisconsin in August. I had read that Elavil can cause drowsiness and sleepiness, also known as somnolence, so I didn’t want to start taking the pills in the middle of a long drive across the country or when I had to get up early in the morning. But looking at the potential side effects, I would take a little sleepiness over “suicide attempt,” “completed suicide,” and “coma,” which, when combined, slices a big piece of the less-than-ideal-results pie.
I became a real party pooper almost immediately. Within two hours of taking amitriptyline, I was asleep. This is especially true if I also had an adult beverage that evening. Waking became harder and harder, and at about the two- or three-week mark I was taking naps every day.
How were my bowels, you ask? I did experience a couple of days of constipation, but immediately after that it was back to the old routine.
The doctor has now lowered my dose to 10 mg per day. I am still experiencing a fair amount of sleepiness, although I no longer need a nap in the middle of the day. Waking up is still hard, and I seem to get up later and later each day. I have experienced no reduction in bowel symptoms, but I don’t want to kill myself either. Yay me!
Oiy.
This Post Has 11 Comments
I hope you get better soon, you’re a determined person in a great journey that needs to continue. Drive safe.
I also have IBS, I found if I only cook with olive oil it helps a lot. However I can no longer in restraunts because of what they choose to cook with, and adult beverages are out of the question. Good luck. By the way I refused drugs and my Dr. says I have as good if not better results then people on drugs.
And this to shall pass. Yes, pun intended!
Stay positive Tammy!
OMG!!!! I have to meet you for a drink – mom of 2 seven year olds from Brooklyn – live in Ft Myers – heading to Texas for thanksgiving – we did 26 states in 10 weeks last summer! Totally want to but you 1 drink nothing more. You totally rock!!!
Wow, thank you, Amanda! I’ll be in Austin for Thanksgiving.
Hang in there!!! Prayers for you here!!!
Interesting … all the problems they treat with “off label” uses for meds. My dad was an amputee (lower right leg) and he suffered comatose-like results from the “standard” med used to treat phantom pain after the amputation. After several unsuccessful attempts with numerous meds, they put him on Elavil. Surprisingly, it was the only med that gave some relief for the intense phantom pains he suffered. But, he, too, fell victim to the many naps-per-day syndrome.
Hang tough! (As if you would do anything less!)
Bruce Pirtle
Yowza. Sounds miserable. My 35 y.o. niece has had Crohns since she was an infant. You will overcome this and find a way thru – it’s tough but lots of prayers out here for you.
Reading this was a mixture of laughing & crying. I must be getting old if I’m relating to all of it ;). I love how my days are now filled with discussing my aches, pains, bunions & bowel movements…..and then I realize that I have always discussed those regardless of my age. Thanks for discussing so many things that I can relate to and enjoy.
Sorry you are having so many problems.
I took that stuff for years. A much higher dose because my body got used to it. Beware though… A side affect is craving sweets! I am not a sweets person at all, but I craved sweets when I took it. Needless to say, I gained weight. So when I finally got off it, I lost 30 pounds. Now I crave beer, might not be a side effect from anything. Lol
I hope it works for you. I took it for fibromyalgia and it helped me sleep.