This topic is about someone who has been living with an ileostomy since 2016 due to ulcerative colitis, which led to the removal of their entire colon, but their rectum was left intact. Recently, they have been experiencing some discomfort and are seeking advice from others who might have faced similar issues. Here’s a summary of their situation and some helpful insights:
- They have noticed an increasing frequency of clear rectal discharge, a sensation of pressure or fullness, and burning or soreness in the rectal area.
- Biopsies have been taken and reported as normal, showing no signs of cancer.
- The mucus is completely clear with no blood present.
- They have tried Salofalk (mesalamine) suppositories, but these have not improved their symptoms.
- They describe the burning more as a deep soreness and wonder if persistent ulcerative colitis activity in the rectum could be the cause.
Here are some pieces of advice and insights shared by others:
1. Normal mucus vs. warning signs:
- Clear mucus is a common discharge from the rectal stump, but bloody mucus should be evaluated promptly.
- If symptoms persist despite a negative biopsy, consider getting a second opinion to confirm the pathology and assess the health of the rectal stump.
2. Possible causes:
- Diversion colitis can occur when the rectum becomes inflamed after fecal flow is diverted, mimicking ulcerative colitis symptoms.
- Proctitis, which is inflammation limited to the rectum, is another possibility.
3. Medication options:
- Continue or switch topical therapies like mesalamine suppositories or foams, or try stronger rectal preparations. Some people have found long-term relief with these.
- If topical treatments alone are not effective, combining them with oral anti-inflammatories might help. Discuss options with a gastroenterologist or colorectal surgeon.
4. Surveillance and cancer risk:
- Even with benign biopsies, an unused rectal stump can undergo changes, so yearly or more frequent scopes are recommended.
- Some people have opted for surgery after finding precancerous changes.
5. Surgical solutions:
- An elective completion proctectomy, which involves removing the rectum and anus, can eliminate mucus, pain, and cancer risk. Although recovery is significant, it may improve quality of life.
- If considering a future reversal, earlier action might aid healing, as age and time can reduce success rates.
6. When to consider surgery:
- Worsening pain, persistent inflammation despite medication, repeated hospitalizations, or increased cancer risk are common reasons to consider rectal removal.
- Consulting with a colorectal surgeon is advisable if conservative management is not effective.
7. General encouragement:
- It’s fortunate that the discharge remains clear, and there are multiple paths to consider: continued medical therapy, regular surveillance, possible reconnection, or elective stump removal. Regular follow-up and informed decision-making are important.
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