This topic revolves around a 48-year-old woman who has been living with Crohn’s disease and an ileostomy for 17 years. She is experiencing persistent upper-back and abdominal pain, especially after eating. Initially, her pain was linked to blockages, but it has since become more constant. Despite undergoing two small-bowel dilations, she found no relief. Her doctors have suggested resecting a portion of her bowel and starting biologic therapy with either Remicade or Humira. However, she is hesitant about further surgery and medication, seeking advice on these treatments and alternative remedies. Her symptoms began after a trip to Mexico.
Here are some insights and advice shared by others:
1. After a year, she had the recommended surgery and felt generally better, though she occasionally experiences soreness around the stoma. She tried Remicade post-surgery but developed neurological symptoms similar to multiple sclerosis and is considering stopping the medication while awaiting a neurologist's consultation.
2. Experiences with Humira (adalimumab):
- The initial loading dose involves four injections at once, which can be painful.
- Some people have restarted Humira after stopping it previously, hoping it will help manage Crohn’s-related back pain.
3. Experiences with Remicade (infliximab):
- Administered every 8 weeks and has helped some users control Crohn’s flares.
- Its effectiveness may decrease after 4–5 infusions; one person needed a colectomy for ulcerative colitis despite treatment.
- Be vigilant for neurological side effects, such as symptoms resembling multiple sclerosis, and stop the medication if they occur.
4. Pain management cautions:
- Long-term use of high-dose prednisone can lead to ankylosing spondylitis and chronic back pain.
- Duragesic (fentanyl) patches can alleviate severe pain but are highly addictive and should be avoided if possible.
- While doctors may question opioid use, it is crucial to manage pain effectively until the underlying issue is resolved.
5. Diagnostic suggestions:
- Request stool cultures or parasite screening, as symptoms began after traveling to Mexico, which might indicate an infection.
- Consider a gastroscopy to check for upper gastrointestinal issues that could be causing back and abdominal pain.
6. General tips:
- Persistent back pain is common among ileostomy patients with Crohn’s disease; discussing potential spinal or arthritic complications with specialists is important.
- Coordinating care among gastroenterology, surgery, rheumatology, and pain-management teams can help tailor treatment to individual needs.
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