This topic is about a 65-year-old person who has had a permanent colostomy since 1999 due to diverticulitis-related peritonitis. In 2014, they started experiencing rectal mucus discharge, which recently became mixed with significant blood. This has led to a situation where they need to use an extra-long sanitary pad due to what feels like heavy period bleeding. A doctor diagnosed them with proctitis and prescribed expensive cortisone suppositories, but did not provide follow-up care or a more affordable option. The person, who lives in Arizona, is feeling depressed and desperate for competent medical care, even considering traveling to Southern California for help.
Here are some pieces of advice and insights that might be helpful:
1. Seek a second opinion as soon as possible. Heavy bleeding years after an ostomy should be thoroughly investigated.
- Consider asking an ostomy or wound-ostomy-continence nurse for referrals to a surgeon or gastroenterologist.
- Contact your insurance company’s case-management or ombudsman service for help in finding qualified providers and speeding up authorizations.
2. Insist on a diagnostic work-up before finalizing treatment:
- A proctoscopy or proctosigmoidoscopy, or a manual rectal exam, can help identify bleeding sites.
- A flexible sigmoidoscopy through the stoma may be necessary if any part of the colon remains.
- A full lower-GI endoscopy, either through the stoma or per-anus, should be done by a gastroenterologist if initial scopes do not find the source of bleeding.
3. Understand common medical approaches:
- Rectal mucus is normal if the rectum or anus is left in place, as glands continue to secrete.
- Rectal inflammation, known as "stump" or diversion colitis/proctitis, is often treated with topical steroids or systemic/biologic agents like Humira or Remicade.
- Regular surveillance with scopes is recommended to detect dysplasia or cancer in the retained rectum.
4. Consider surgical options if conservative therapy fails or quality of life is poor. This could involve complete removal of the rectum and anus, known as proctectomy with closure of the perineum. Some surgeons may offer to suture the rectum closed permanently if discharge does not improve.
5. Try symptom-management tips from others:
- Use folded gauze or a small pad between the buttocks to absorb mucus or blood when leakage is light.
- Monitor dietary triggers, such as excess chocolate, that might worsen bleeding or mucus output.
6. Be mindful of cost considerations:
- Ask your doctor or pharmacist about generic hydrocortisone or budesonide suppositories or foams, which are often cheaper than branded versions.
- Check insurance coverage for biologics like Humira or Remicade through specialty-pharmacy programs, which may offer co-pay assistance.
7. Seek emotional support. Persistent bleeding can be distressing, so connecting with local or online ostomy support groups and mental-health counselors can help alleviate depression while you pursue medical solutions.
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