This topic is about a student from Manchester Metropolitan University who has been dealing with a challenging journey involving Crohn’s disease, a fistula, colostomy complications, fatigue, and the pressures of university life. Over the years, this student has faced numerous health and social hurdles, and here is a summary of their experiences and some advice shared by others:
- In December 2004 to July 2005, the student first noticed rectal bleeding. Despite this, their parents and general practitioner downplayed the issue, and a scheduled medical test was missed due to a family holiday.
- By late 2006 to January 2007, the bleeding worsened, and a scrotal lump was discovered. This led to a diagnosis of an anal/perineal fistula, which interrupted their studies for a Higher National Diploma.
- On May 5, 2008, the student underwent a loop colostomy, affectionately named "Gordon," after a suspected Crohn’s diagnosis. However, the stoma output was poor, and they continued to pass stool rectally more than through the stoma.
- In December 2009, severe fatigue from the medication Humira led to a switch to Azathioprine, followed by vitamin B12 injections and iron supplements, which provided only partial relief.
- In 2010, the student was prescribed antidepressants, but an adverse reaction led to withdrawal and intervention by a crisis team. Friendships suffered, but they found support by joining MeetAnOstomate.
- By January 2011, the student left university mid-degree due to exhaustion and pain, with their general practitioner attributing everything to depression.
- In March 2011, a new consultant stopped Azathioprine, citing a lack of active Crohn’s. The student felt somewhat better but received no further tests or treatment for six months.
- Currently, the student is back at university but continues to struggle with fatigue, bleeding, and fistula pain. A recent scope showed active Crohn’s, and they experience severe social isolation, with no family visits during the latest hospital admission and few local friends.
Advice and insights shared by others include:
1. Emotional Support
- Genuine friends and the online community are there to listen, empathize, and encourage. Don’t hesitate to lean on them for support.
2. Medical Management
- If current doctors are unresponsive, seek a new gastrointestinal or colorectal specialist and always get second opinions rather than settling.
- Persistent fatigue may be due to active Crohn’s rather than depression. Ensure doctors address the underlying inflammation, not just the symptoms.
3. Alternative Surgical Options
- Consider discussing a continent ileostomy (Koch pouch) as an internal alternative to an external bag, though it is rarely performed in the UK.
4. Nutrition & Supplements
- Explore energy-boosting natural foods and supplements like iron and B12 to combat Crohn’s-related fatigue. While not curative, they may help.
5. Coping Strategies
- Maintain a “never-give-up” mindset: control reactions to circumstances, continue studies if possible, and keep searching for supportive friends.
- Move past relationships that offer no support and invest energy in people who are truly supportive.
6. Family Dynamics
- Advocate for your own health when relatives minimize symptoms, as several members criticized the family’s dismissal of medical needs.
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