I had a colon interposition 7 years ago after a doctor punctured my esophagus during an endoscopy. Had he not ignored my complaints of severe discomfort following the procedure and then sent me home it might have been an easy fix…but the timeframe between the puncture and my husband finally getting me to the hospital was such that my esophagus disintegrated entirely. By then I had developed sepsis and was dying. Very long story, including being unconscious for ten days, two-plus weeks in intensive care and 30 days total in hospital. Another 5 months sans esophagus, food and medicine via tubes, with bag for saliva on neck….etc., etc., finally ending with the colon interposition.
Following the colon interposition, I was told that the severe pain that wrapped around my back, over my ribs and beneath my breasts would last anywhere from three to five years, maybe longer, maybe not so long.
The pain on the right side subsided after five-plus years, the left side continues approximately seventy-eighty per cent of the time, especially at night, or when I’ve done something ‘wrong’, or a bra hits the wrong spot. I use Lidoderm, Vicodin and Lyrica to address this pain. Lidoderm when I need relief very quickly, along with Vicodin (hydrocodone since Vicodin is impossible to find in the United States outside of hospitals). I take the Lyrica (3) at night and (1) in the morning. I also take Ambien and Trazadone for sleep. The Ambien and Trazadone were prescribed before the surgeries for longstanding sleep issues. It is more critical since the surgeries because if the pain is unbearable I can at least go to sleep to escape the pain and usually wake up free of pain in the am.
The primary and very distressing side-effects of the colon interposition surgery are digestive. I have gas more often than I can begin to describe, but the worst is the diarrhea at night. I regularly wake up in a ‘bed full’ of excrement. I don’t wake up when it’s about to occur, nor when it’s occurring but, rather, when I wake up in the morning. Of course, it can be worse if I eat later, which I mostly avoid doing, though dinners out can present problems. Red wine may or may not be a causative factor. Certain foods are givens for creating problems and I always avoid them: spinach, cream-based dishes/sauces, mashed potatoes (butter, milk), some cheeses, not all, tomato sauces, lattes too late, potato chips before bed (grease?), but not earlier in the day, and others I’m not thinking of at the moment.
Meats are better tolerated than vegetables and fruits. Even with red wine. Sugar in candy, ie, jelly beans before bed, are a no no. Black licorice – late, but not during day.
So. Primarily I need help with addressing the diarrhea issue. The pain in the ribs and around my back has been somewhat alleviated by exercises that stretch and expand my chest and strengthen my back and core. Exercise also strengthens me psychologically and emotionally. Periodically, the pain comes back with a vengeance and is ‘breath-stopping’. And even tear-producing.
But nothing can compare with getting up day after day to clean up myself and my bed (sometimes my preparations just cannot anticipate the mess that can occur). It can take an hour or more and that doesn’t include doing laundry. I may have to shower two-three times or use the bidet several times, change my clothes twice or more. Thank goodness I insisted on a bidet when we renovated our house eleven years ago. It is a lifesaver.
The emotional, psychological and physical tolls this issue takes on me are huge, huge. My marriage has suffered overall, but in particular as a result of the diarrhea problem. Sex and intimacy are long gone. I can’t deal with either. My husband complains mightily. It doesn’t matter. I’m a hermit, play-acting with friends and his family when necessary, and just plain anxious and depressed otherwise.
I’ve always been anxious and depressed, but ……. Life now is so ‘sub-optimal’ that the old days would be welcome as an alternative.
Anybody out there have any thoughts you would like to share that might be helpful? Anyone else with these issues resulting from a colon interposition?