This topic is about someone dealing with the challenges of managing their ileostomy care while also coping with two autoimmune skin disorders: Prurigo Nodularis and Bullous Pemphigoid (BP). These conditions are causing a range of issues that affect their overall health and well-being. Here are some insights and advice that might help:
1. The person is experiencing severe blistering and raw sores under the ileostomy skin barrier due to BP. The prescribed treatment, a liquid Clobetasol with high alcohol content, helps control BP but causes stinging and makes it difficult to maintain a reliable pouch seal.
2. BP lesions have also affected a knee-replacement incision, leading to infection and cellulitis, which require strong medications for treatment.
3. Joint inflammation related to BP is adding to existing pain, complicating pain management.
4. The dermatologist has imposed strict medication limits, prohibiting the use of aspirin, NSAIDs, many antibiotics, and Lisinopril, with no current substitute. Most vaccines are also contraindicated.
5. Due to allergies to nearly all narcotic pain medicines, the only pain relief option available is acetaminophen (Tylenol).
6. These health challenges are causing frustration, anger, depression, and exhaustion.
To help manage these issues, consider the following advice:
- Coordinate care by asking the dermatologist to work directly with the ostomy team or a wound/ostomy nurse to ensure that skin treatment and pouching strategies are aligned.
- Seek specialized wound care by looking into outpatient wound clinics or consulting a qualified plastic surgeon experienced in skin-replacement therapies for difficult peri-stomal wounds.
- Consider using Pleurogel (Medline), a refrigerated gel that solidifies in the wound at body temperature. It can be capped with a dressing and usually pouched over, potentially staying in place for up to a week. It requires a prescription, so check availability through Medline distributors.
- Explore medical-grade honey preparations for skin and wound healing, as there is substantial online literature supporting its antimicrobial and soothing properties.
- Remember that emotional support is important. Keep venting, lean on local support systems, and take breaks from health stress when needed.
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