This topic is about someone experiencing severe pain on the side of their ileostomy, which is linked to a condition called Superior Mesenteric Artery (SMA) syndrome. This person also deals with cyclic vomiting syndrome, making it hard to maintain a healthy weight, digest food, and stay hydrated.
Here are some helpful insights and advice:
1. The pain has been present since surgery and is described as being worse than childbirth. Hydration is a significant concern, and they are considering discussing with their gastroenterologist the possibility of restarting or increasing Total Parenteral Nutrition (TPN).
2. It's important to understand the stoma's anatomy. If it's a loop ileostomy, check if the non-stoma limb is causing any blockage or pain.
3. Seeking a referral to a dietician and consulting with a stoma nurse can be beneficial. They can help assess whether different food textures, like solid, puréed, or liquid, are better tolerated.
4. High-calorie oral supplements can help with weight maintenance. Options include:
- Fortisip ready-to-drink bottles, such as the chocolate flavor, which some long-term ileostomates use exclusively.
- Ensure or similar low-residue nutritional drinks, especially if solid foods cause pain.
5. If nutrition or hydration remains a challenge, it's important to advocate for considering TPN as a primary or temporary solution.
6. For pain management, short-term use of opioids like oxycodone or medicinal opium can be effective. While constipation is less of a concern with an ileostomy, it should still be monitored.
7. Clearly communicate the severity of the pain to healthcare providers. Finding the right pain management approach often requires some trial and error.
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