Crohn’s disease is a chronic (lifelong) autoimmune condition that inflames and irritates your digestive tract. It can’t be cured so I’m thankful I didn’t come down with it until recently. After a difficult spring, I finally got a diagnosis mid-May, but that sure didn’t solve anything.
Treatments typically help manage symptoms. Steroids ease them for some sufferers. I tried three different ones, alone and in combination. Nothing. Prednisone made things worse, adding muscle weakness to the mix. Meanwhile, I was seen by a physician with more experience. I’m so thankful for the change. It was a miserable spring and summer, and led to trying an infusion next.
My first dose of Inflectra/Remicade was finally at the end of July. It’s a biologic that blocks proteins that are the key drivers of the painful inflammation. It didn’t last the two weeks I had to wait for the next one, so I was skeptical. I just had the third one after another bumpy month (every couple of days, I needed to fall back to liquids and BRAT (banana-rice-applesauce-toast), and–if we needed to go somewhere–lots of Pepto Bismol tabs. But “episodes” aren’t as painful, so I’m starting to feel hopeful!
These biologics can also cause serious side effects. So does the pill I take to keep my body from rejecting the infusion. But I’m so thankful for this welcome relief.
The first infusion took about four hours, probably harder on my Favorite Guy than me. The infusion itself drips for about two hours, but they need to weigh me each time because that determines how much I’ll be given. That’s sent to the pharmacy, which has my prescription. I’m set up in a comfy chair that heats, get fitted with an IV on top of my forearm, and take Benadryl and Tylenol by mouth. (The first time, the Benadryl was by IV and I was groggy for two days.)
Once the little bag arrives from the pharmacy and is hooked up to the IV, regular temp and blood pressure checks begin. Every 15 minutes, the unit beeps and the rate of drops increases, along with recording my temp and BP.
We’re offered sack lunches, which helps Guy with the waiting. I can’t have gluten, so I get a bag of chips. I’m too groggy to read, but half a dozen friendly nurses rotate through the area as several units beep for attention. There were about ten patients undergoing the treatment.
Infusions are given for several ailments, including arthritis and MS. I don’t know anyone else personally with Crohn’s, but it seems like everyone knows someone dealing with it.
Thank God for modern medicine and nurses who know how to run these modern gadgets. And for a young MD whom I get to see again in about 10 days, for the first time since the infusions began. (She did call me after the first one.) She should have plenty of numbers from extra lab tests and the infusions to decide how my cells are handling it all, and how soon I’ll receive another one.
I’ve been able to eat eggs, roasted sweet potato, leftover pot roast (frozen from our last time at the Machine Shed Restaurant), and a little tuna salad three days in a row–for the first time in months. I’m exhausted so I can tell my body is under stress, but I praise God from whom all blessings flow!
I certainly appreciate your prayers, well wishes, and a sweet gift from a Leora fan from Guthrie County who is also a bee-keeper!
Update from this morning: Well, I’m back on liquids and BRAT today, but I’m still hopeful and grateful.
Grateful to you, Joy, for sharing with us. I know you must be helping others by being open and honest about your treatment and the rallying you and Guy are doing. Sending my best wishes, hugs and prayers. ❤️❤️❤️
Bless you, Vicki.
❤️❤️❤️
Stay positive, Joy. We are all pulling for you!!
Thanks, GP!
Love your positive attitude in what is obviously a tough situation. Sending my best wishes and prayers Joy. Hope you’re feeling better.
Thanks so much, Brian.
My goodness, Crohn’s seems to have so many different faces. A friend, and one of my trusted health care professionals, has been actively dealing with it since I have known her (1997 was when we met). I do not recall her mentioning a similar treatment regimen such as yours, but I know and have seen her pain all too well. Sending Angels, hugs, and any other support your way. In fact, I am envisioning you happy, healthy and whole!! xx
Bless you, Annette!
Will keep praying. Julie has exhaustion from her pain as well so I know what it looks like.
I wondered how she’s doing, and pray for you both. I’m thankful you have each other!
This is such a difficult condition to manage and I am pleased that you are getting some relief from the further infusions Joy… to be able to eat foods we enjoy is something we should all be able to do, not just because of the pleasure and taste but the nutrition they provide… I hope that whilst this is not how you might choose to spend several hours, it is a treatment that will make a huge difference to your quality of life. ♥♥
Thank you, Sally. I’m hoping it will eventually, but you’re right–not much nutrition when I need to drop back. We’d just roasted some sweet potatoes, which I looked forward to, so I froze some chunks for down the line. Vitamin A?
Praying for you today, Joy.
Thank you, Tim.
I’m glad you’ve found something that provides you with some relief, Joy. Do you have any other family in the area that could help out on infusion days? Do you know how often you will get these, or are the doctors still figuring that out based on how your body responds?
They didn’t have an order for the next infusion. You sure ask great questions! When I see Dr. Flores on the 22nd, she should have enough numbers to add to how I’m doing by then to prescribe the next one. Perhaps I’ve been praying for patience, huh!
Thinking of you, Joy. You’re a fighter.
Best wishes. xx
Thank you, Pat!
Joy, you’re an amazing human being! Suffering with Crohn’s, getting a 4-hour infusion that may or may not help, and still managing to overflow with hope and to lean into our God, the source of our hope. Prayers flying heavenward!🙏🙏🙏❤️
Bless you, Gail.
Thanks for sharing, Joy. I don’t have Crones but I do get an infusion of Remacade every six weeks. It is for Ankylosing Spondylitis, which is an autoimmune disease. I also feel tired after the infusion, but better the next day. You are still in my prayers each day and I’m hoping your treatments begin to last longer.
My, thank you for letting me know. Have you been taking infusions long? Do you also take Azathioprine to keep from rejecting the Remicade? Thank you for your prayers, John. I pray that you’re getting relief from what you’re dealing with!
Glad you have found a treatment, even if not 100% effective. Wishing you a reprieve from the worst of it.🤗
Thank you, Eilene.
That does sound like a bit of an ordeal. Praying that it works in the long run.
Thank you, Andrew.
My niece has had Crohn’s for ten years. The first few years were difficult, but she did much better after getting on the right treatment plan for her. She never had infusions, but she’s had a few surgeries to remove scar tissue. She became a vegetarian and was able to wean off drugs. I pray that you will continue to have more good days than bad.
I’m thankful there are options to try, and that your niece is doing better. Thank you, Nancy.
Keep handling it the best you can, Joy. My best to you and yours. 🙏💖🙏
Thank you, Tim.
😊🙏
Your positive attitude inspires us all, Joy. We’re all dealing with some kind of pain, though at different levels, and I’ve found that a good attitude helps.
Sending hugs and keeping you in my prayers.
Thank you, Lauren.
[…] Head over to discover more about this treatment making a difference to Crohn’s Disease sufferers: Crohn’s Disease and Infusion Therapy […]
Thank you, Sally, for sharing this!
I studied medicine, although I no longer work as a doctor, and I remember reading about the condition. Anything that makes it a bit more tolerable is good news, and I am happy it does help a bit, Joy. I hope the research keeps coming up with better and better treatments. ♥
Olga, thank you for you note. A bit more tolerable IS good news. It’s unusual to come down with this at my age (81) and I’m thankful I didn’t develop it earlier!
Sending prayers.
Thank you, Andrew.
Wishing you well going forward with your treatment, Joy its good you are sharing to help others and maybe in turn the comments and good wishes help you…My daughter has regular bone infusion not for your condition but for her bones due to cancer but she gets the same tiredness after plus mouth ulcers I think every one reacts differently and of course the medicines that make each individual treatment vary…Sending healing thoughts …
Thank you, Carol. Mouth ulcers, how miserable. I hope she gets relief. I’m just thankful I didn’t come down with this until my 80s.
Yes the mouth ulcers are not fun for her…I’m sure you are although it’s dehabilitating whatever the age xx
Yes. The younger the onset, the longer a person has to deal with it. My husband learned the same thing about living with Parkinson’s (Vietnam vet). He wasn’t diagnosed until about five years ago and so far the meds help pretty well, as long as he stays active.
That good to hear,Joy about your husband and yes the younger a person is the longer they have to deal and live with it .
Praying for you in these days! I hope better days are coming ahead!
Thank you, Linda!
Thank you for the update, Joy. I do hope the treatments will stabilize relief of your symptoms.
I get to see my gastro MD next week for the first time since the infusions began, so that will help decide whether to keep trying with this one or what. Thank you, Liz.
You’re welcome, Joy! Sending good thoughts your way for your upcoming doctor visit.
Sending prayers for better outcomes, Joy. You have been going through a lot. I didn’t know there were infusion treatments for crohns disease. I sure hope they help you soon. 🙏
Thank you, Lori. (BTW, Vicki Atkinson’s interview with Culture Buzz’s John Busbee about Surviving Sue will be on local radio in about half an hour! It will be available later as well.)