This topic is about someone who has been living with an ileostomy due to ulcerative colitis for ten years without any issues until recently. They started experiencing severe and constant rectal pressure, feeling as if their insides might fall out. This sensation worsens when they try to relax, such as when urinating. They haven't seen a specialist in eight years and are wondering if others have had similar experiences and whether they should see a doctor.
Here are some pieces of advice and insights shared by others:
1. It's important to seek a medical evaluation promptly. Many suggest making an appointment with a surgeon or gastroenterologist. Possible causes for the symptoms could include a prolapse of the rectal stump, active ulcerative colitis or Crohn’s in the stump, internal hemorrhoids, a hernia, or internal scar tissue or adhesions. Diagnostic tests like scoping, CT, or MRI might be necessary.
2. It's normal to expect some mucus or blood from the retained rectal stump. The residual rectal tissue can still secrete mucus, which might become more pronounced during flares or irritation.
3. There are medication options for dealing with inflammation or bleeding. Anucort (hydrocortisone) steroid suppositories have been mentioned as helpful in calming inflammation, weeping tissue, and bleeding. Other suppositories have also been prescribed for bloody discharge.
4. An enema routine might help reduce pressure and discharge. One person’s surgeon recommended using a Fleet Natural Cleansing enema every 3–5 days, which helped them experience minimal pressure, no night discharge, and no urgency.
5. Some physical measures can provide temporary relief. These include sitting on the toilet and pretending to poop to allow mucus to pass, lying down or sitting instead of standing or walking, getting a vigorous back rub over the coccyx for about 5 minutes to relieve cramp-like pain, and wearing a support belt after hernia surgery.
6. Persistence with healthcare providers is key. Those who kept returning for tests like scopes, CT, or MRI eventually found answers, such as internal hemorrhoids or active disease. It's important to keep pushing for answers until a cause is identified.
7. Surgical removal of the remaining rectum can be a definitive solution. Some people had the rectal stump removed after experiencing prolonged pressure and bleeding, and they reported complete relief and satisfaction with a permanent ileostomy.
8. Other observations include experiencing "phantom bowel movement" pain, which can be eased by sitting on the toilet. Pressure might also increase after activities like sex, long walks, or driving but tends to subside afterward.
See full discusison