When I was 20 I inherited a rare neuromuscular disorder. The nerves overstimulate otherwise healthy bowels and cause 12-25 BMs everyday, including 2-3 overnight. I am continent but get very little warning, so I always have to be near a bathroom. I always have small BMs that vary between hard and soft stools. It usually takes 15 min just to have one BM. I also have frequent painful cramps that cause sweating and shaking. The condition is debilitating but not actually dangerous.
In the last 5 years my symptoms haven’t changed at all. I tested negative on all GI disorders including Chron’s, UC, cancer, parasites, and food allergies. I tried an anti-diarrhea medication which had no effect. I also went to a surgeon and got a neurostimulator implanted. It cleared up a urinary problem but had no effect on the GI issue. Since I got sick I started exercising daily and eating the healthiest food you can get. Lifestyle changes have been great for general health but haven’t improved the condition at all. Other than this disease I’m very healthy, trim, and fit.
I’m fortunate to be self-employed and able to work at home. But I may soon have to travel to keep my company running, and I’m unable to do that. I’m facing the possibility of losing my livelihood and ending up on disability when my savings run out. I finished college sick because I wanted to work, and I don’t want to lose a job that is important to me. This disease has completely claimed my life. I haven’t been able to date. I lost all my friends and hobbies. I barely leave the house once a week to go shopping. I haven’t left the city in five years.
I’m in the strange position of being a fit, intact person who could live a full lifespan with no bag. But that might mean losing my career and would mean living alone with no hobbies, friends, or girlfriend. On the other hand I could ask my surgeon to sever the end of a healthy colon and give me a stoma. I could leave the house but would have to go through life with a bag and a 45% chance of hernia. Because my intestines are healthy I could get a sigmoid colostomy, which is supposed to be the least invasive. This also allows irrigation.
Seems like most people here had to get the bag due to life threatening illness. But what if you had a choice? Would you chose between life as a reculse or life with a bag?
Would your answer change if you were a self-employed, financialy solvent recluse?
Thank you very much for your time.
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