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I had a colon interposition 7 years ago
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?
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Thank you, We just had a visit with the surgeon at Univ Of Penn. We never used any fiber source except for a probiotic gummy which don't know if helped or not. Just started using bene fiber now and going to try Allign probiotic. Will let you know of results or any help. We are going to get an appointment with a GI medical Dr. to help with the course of what to do going forward. thank you
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1 Reactionchecking in to see how your husband is doing?
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2 ReactionsHusband had colon interposition over 5 years ago. Does get bouts of low sugar. Trying to figure out if related to colonic interposition. Does anyone else have that problem?
Pamalasa:
I had a colonic interposition about the same time you did and, like you, I spent a year and a half with a bag on my neck, unable to eat or drink. No fun, but on the plus side I'm here writing you. I'm glad to hear about someone with the same problem. The procedure is so rare that I've had little luck in finding anyone to share problems with. I also have pain after eating. It’s not located in any specific area of the abdomen; my whole abdomen is involved as a unit. The only thing that seems to work for me is an opiate - Percocet (Ocycodone + Tylenol). I take on average 3.3 per day, a dosage that has not changed for about 5 years. I don't think the pain relief is the result of the analgesic effect but because it slows down intestinal activity. Narcotics frequently cause constipation, so in my case diarrhea may be a blessing. My case may give you leverage if you find that Percocet works as well for you as it does for me; physicians are averse to prescribing opiates unless there is evidence that it’s needed for your condition.
I have diarrhea almost all the time, but almost no problem with bowl control. Maybe the surgeon removed more of your lower bowel than mine did. That’s another problem with this procedure—every case is different. Symptomatic differences are hard to attribute to the similar surgeries. The psychological problems you encountered are much greater than mine, probably because the procedure had so many more averse physical consequences. Age is probably another important difference—I’m 75.
One recent problem that has come up for me is fluctuating glucose levels, especially unpredictable bouts of hypoglycemia. I'm labelled a borderline diabetic despite my 100 lb weight loss since the operation. That restricts my diet considerably. I have severe dental problems that have cost me over $25,000. I suspect that dentition related to the interposition might be caused by anomalous uptake of calcium. That’s important because I have tried and failed to get my medical insurance to pay for the dental work. They said I can't clearly show that it’s the result of the operation. There is almost no literature on post-procedure symptoms so I can't claim any correlation. Do you show any signs of increased dental problems following the operation? My condition is also associated with borderline osteoporosis.
I sure wish some doctor would take on the subject of post-surgical histories of people who have had colonic interpositions. I tried with my surgeons, but the lead doctor left for a better job elsewhere and the other doctor is not so motivated.
I wish I could be of more help to you. If you think of something I can do, please don't hesitate to write or call.
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3 ReactionsI am trying to become a part of this group for support and information dealing with my colonic interposition....of course I still have the possibility of cancer to deal with since it metastasized to my lymph nodes...can someone respond so I can know that I've successfully made it to group discussions? Thanks in advance rhaze
Hope you are doing well. I had a colonic interposition too
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1 ReactionI am not sure if this is a group discussion. Well there is two so I guess it is a small group. I had my colonic interposition 47 yrs ago and am doing very well. So if you have any questions I will do my best to awnser them.
David
I guess everyone has differences (person to person problems) I have diarrhea almost all the time with cramping and gas but can control my bowels, I have unspecified pain is my rib area and I take oxycodone 5 mg...I take from 2 to 3 a day. It's only been 3 months since my surgery and I'm still dealing with anxiety and depression....not severe but still there..I'm tired all the time and I'm guessing I have dumping. I also have thyroid issues so I'm not sure if my rapid heart rate and weakness and pounding heart are due to my levels being off or dumping...I live in the Netherlands and have a communication problem since I'm American. The doctors here aren't very motivated so I research things and after suggestions, they try what I ask. That doesn't give me much confidence but I'm still here so my quest continues.
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1 ReactionI had my surgery 11 years ago. T o years ago they went in again because I had a redundant colon and they removed 7cm. I still suffer from dumping and constant diarrhea. I take regular for nausea. I too have a lot of rib pain Try a lidoderm patch and Advil as well.
It is a long process and understand the change. Try and plan to know where bathrooms are when you are out. In NYC always know hotels
It is frustrating but you can do it!
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1 Reactionrhaze
Your symptoms sound very familiar. I had the back pain when I was a child. This for the most part went away with time. I was very young when I had my CI. The diarrhea is always there but can be controlled with diet and watch when you eat. I found veggies and fruits make it worse. ( if you are a vegetarian your in trouble). The diarrhea is something that will always be with you. It is very inconvenient but the alternative is way worse. I am lucky in the fact I was so young when I had my CI done I don't know any different.
David
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