Do you experience any unexpected symptoms?
What is an unexpected Crohn's or UC symptom that you have experienced or are experiencing, and how do you manage it?
Hi Pam. Inexperience very painful erythema nodosum and arthritic pain in my joints that come and go but sometimes the pain of both of those conditions is unbearable 😢 it’s been a struggle I never would of imagined before suffering with this. I have a 3 year old and a 5 year old too so I feel tremendous guilt for often not feeling well and my husband having to step in and cover me regularly now. I often just go to the bathroom to cry because I don’t want my kids to see me struggle or see me upset. Anyway sorry I’m going off on a tangent..
Thank you so much Julie Marie, I really needed to read this and feel this support right now. You have really comforted me and made me feel stronger again even though I’m feeling so weak right now. You’re an angel. Thank you 🙏❤️ my pleasure! From one IBD Mama to another--you got this!
--Julie (Team Member)
I have osteoporosis from steroids. I take Reclast infusions. Severe dry eyes. Arthritis all along my spine. SI joint involvement. I'm on Tramadol as needed. Just got started on Celebrex to take as needed because I can't deal with the neck pain anymore. I will take it rarely. Just finished 2 months of PT. Joint pain random places. I have been having pain for years and had never associated it with Chrons my two children have it but they never have gone into any details about the symptoms that can arrise. Like me thinking I have a bad back and its mostly in the hips. I'm going on 70 years old. And I have had a lot of other health problems but none as bad as barley being able to walk and it's chalked up to bad back. I became epileptic at 15 years old. And coming out of those seizures were very Scarry. But this is way behond even my terrable migraines I had since I was a very stressed mom and had my own hair salon in my home and wouldn't let my husband touch my housework. I believe it reflects me. I told him I didn't work in his garage so the home was mine. But when he decided to sell furniture at the flea market I carried heavy items on my back going downstairs because he claimed to have a sore back. I also would help out another hairdresser when it was quiet at my shop. Plus I worked the cash at the second hand store as a volunteer. My husband was always at home so 24/24 was too much I had to go out and do other things. But without anyone really knowing how bad I felt. Hi
. You definitely are not alone in struggling with back pain with IBD. Our patient leader Marisa wrote about it here: https://inflammatoryboweldisease.net/living/back-pain and Julie Marie here: https://inflammatoryboweldisease.net/living/flare-back-pain. Have you been able to get treatment that has helped your back? People here understand. Best, Richard (Team Member)
Physical therapy definitely helps but it only lasted for about 6 months. Celebrex helps too but I am scared to use it regularly as it can really irritate my GI system.
I was in the hospital for a blood clot and they took me off of celebrex
Hi
. Have your doctors recommended any alternative treatments for pain. I want to share with you a couple of articles on the topic: https://www.health.harvard.edu/heart-health/heart-safer-nsaid-alternatives and https://www.verywellhealth.com/safer-alternatives-to-nsaids-5095751. I'm not saying that any of these would be proper for you, just sharing the information to potentially help in conversations with your doctors. Hope you can find something to help. Best, Richard (Team Member)
Having joint pains. And also being super gassy lol
so much gas in the morning
Hi
. Additional gas in the morning, as the digestive tract wakes up, can happen. I want to share with you an article that particularly discusses this: https://www.medicalnewstoday.com/articles/waking-up-gassy-and-bloated. Has your doctor had any thoughts on steps you could take to ease this symptom? Best, Richard (Team Member)
