This topic is about a person who has undergone significant gastrointestinal surgery, including a total colectomy, loop ileostomy, and J-Pouch creation. They are experiencing a recurring pattern of severe symptoms every three weeks, which is causing concern and seeking advice from others who might have experienced something similar.
Here are some insights and advice that might be helpful:
1. The person had their surgery on November 21, 2024, and initially felt well enough to delay the final step of the procedure. However, since March, they have been experiencing a cycle of symptoms: one week of severe issues followed by two weeks of feeling almost normal.
2. The severe symptoms include a lack of appetite, extreme fatigue, nausea that worsens with activity or food, crampy pain, and visible blood and mucus from the disconnected J-Pouch.
3. Despite undergoing various imaging tests and lab work, no clear cause has been identified. The person is looking for others who might have experienced similar post-surgical patterns.
4. They have been advised to take Metamucil and consider completing the final step of their surgery. The GI team suspects pouchitis and has started them on antibiotics and Omeprazole, with an endoscopy planned if another flare occurs.
5. Chronic anemia has been an ongoing issue since their ulcerative colitis diagnosis, and while iron infusions have been discussed, they have not yet been arranged.
6. The person is curious about the biological process that could cause such precise timing of symptoms and why it always affects their work week.
Here are some suggestions that might help:
- Consider the possibility of intermittent obstruction or a twisted small intestine, which can cause cyclical nausea and pain. It might be helpful to request imaging or a contrast study during a flare-up.
- Severe dehydration from an ileostomy can lead to similar symptoms. It's important to monitor fluid intake and output, use oral rehydration solutions, and consider IV fluids if feeling particularly weak.
- Even in a disconnected pouch, pouchitis or cuffitis should be ruled out or treated. Antibiotics are a standard first-line treatment, and some have found success with mesalazine suppositories and budesonide foam suppositories for intermittent use.
- Before connecting the J-Pouch, most surgeons recommend a contrast pouchogram to check for leaks. If this hasn't been done, it might be worth requesting.
- The cyclical symptoms could be related to partial obstructions resolving, intestinal motility patterns, or fluctuations in diet and hydration. Keeping a detailed log of foods, activities, and stoma output might help identify triggers.
- Recovery from such surgery can take time, and it's still relatively early in the process. It's advisable to avoid extreme exertion, like hiking in sub-zero temperatures, until stability improves.
- It's important to be assertive with healthcare providers. Pursue endoscopy, iron infusions, and specialist follow-up, and consider seeking a second opinion if after-care is lacking.
See full discusison