Hello. I'm new to this forum.
A little background: I was diagnosed with Crohn's in 2016 but suspect it was there long before. I also had extreme endometriosis. Between the endometriosis and Crohn's I've had 13 abdominal surgeries that included the removal of my colon/large intestines, part of my small intestine as well my uterus, ovaries, gallbladder and appendix.
Crohn's not only causes all the usual gastrointestinal problems but has caused "arthritis" in all of my weight bearing joints and hands. After many different treatments, I was given Stelara and it made a huge difference. However, my insurance decided to stop covering it. My doctors and I are trying to fight this but not much luck.
Since I have been off Stelara, I've had 3 major flares ending up in the er. For two of those, I was admitted until the nausea and pain were under control.
Recently, I ended up in the er due to extreme pain, nausea, fever and diarrhea. A CT scan showed a stricture and inflammation throughout my abdomen. The er physician was very helpful and actually asked what has helped in the past . For me, IV fluids, nausea medication, steroids, and pain management. Any medication given, has to be through IV until things are under control - usually within 36 hours. They decided to admit me and the admitting physician immediately pulled any IV pain meds and would only offer oral Tylenol. At that point, any oral medication is going to come right back out or right through me. He kept insisting opioids are not an effective treatment for Crohn's. I agree. They don't cure anything. If someone breaks their leg, they are given pain meds not to cure the break but to ease suffering and make it possible for the patient to recover faster. When I refused the Tylenol, he of course used this as proof that all I wanted were opioids.
I am wondering what has been the experience of other Crohn's patients and am I wrong to ask for pain control during a bad flare up?
Thank you,
jt
Reply posted for Jthacker.
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Reply posted for Jthacker.
It's common for Crohn's patients to face challenges with pain management during severe flares, particularly when oral medications are ineffective due to gastrointestinal symptoms. While caution around opioids is typical, many patients benefit from temporary IV pain relief to manage symptoms more effectively during acute flares. Block Blast
Reply posted for Jthacker.
Jthacker,
I am sorry to hear about this experience. Pain is certainly a shared experience among many people with IBD, so you are not alone. Here is some educational information regarding pain:
Living with IBD: Pain and Fatigue | Crohn's & Colitis Foundation
Pain Management for IBD Patients | Crohn's & Colitis Foundation
Talk to your doctor about pain management and what your options are. Often times treating the disease helps manage the symptoms, and the pain that comes with those symptoms. But if the treatment plan is not working, it's important to have a discussion with your doctor to understand what your options are- whether they are medications, or other pain management strategies.
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