Living with Crohn’s Disease and a Permanent Ileostomy can be quite a journey. This topic explores the experiences of someone who has undergone significant medical procedures due to severe Crohn’s Disease, including a permanent ileostomy. Here are some insights and advice shared by individuals who have faced similar challenges:

- The person had to go through emergency surgeries, including a "Barbie butt" procedure and stoma revision, due to severe Crohn’s Disease and scar tissue. Before surgery, they experienced frequent hospitalizations, severe weight loss, and needed blood transfusions and other intensive treatments.

- Even after surgery, they deal with unpredictable flare-ups affecting both the intestines and other parts of the body, such as the eyes and joints, along with fatigue. These issues sometimes lead to hospital admissions, contributing to hospital-related PTSD.

- In terms of medication, they had a severe reaction to Azathioprine, which caused acute pancreatitis. Humira worsened their Crohn’s symptoms and had unpleasant side effects. Currently, they are on Low-Dose Naltrexone (LDN), which has resulted in milder flares without side effects.

- Lifestyle adjustments include eliminating gluten, which has provided significant symptom relief, and following a high-protein diet. They also use supplements to address malabsorption and bowel loss. Despite the challenges, they find life easier without a colon but still feel overwhelmed by Crohn’s at times and seek connection with others in similar situations.

Additional insights and advice from the community include:

1. Some individuals have experienced positive outcomes after a permanent ileostomy, with long periods of remission and minimal doctor visits.

2. Caution is advised with medications like Azathioprine and other immunosuppressants, as they can mask symptoms rather than cure Crohn’s and may lead to serious secondary illnesses. It’s important to review side-effect profiles and consult pharmacists for safety information.

3. Dietary strategies such as gluten-free eating can reduce bloating and gastrointestinal symptoms. A high-protein diet, along with magnesium and vitamin B supplements, can help combat fatigue.

4. Eye involvement, such as bloodshot eyes and vision changes, can occur with Crohn’s, and standard eyeglasses may not correct these issues.

5. Insurance hurdles can arise with alternative biologics, as some medications like Remicade may be denied, while others like Humira might be approved.

6. Community support is invaluable, as forums provide reassurance that people with an ileostomy and Crohn’s are not alone in their experiences.