I had a colon interposition 7 years ago

Posted by Pamelasue @pamelasa, Sep 25, 2014

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?

@kanaazpereira

Hi @franknick,

I would like to connect you with some other members who also suffer from severe diarrhea, although for different gastric and internal diseases; but first, @rsinger22, I would like to sincerely thank you for all the support and information you are providing.

Please meet @bobinthevillages, @haighsue, @fa7100, @mo1216, @gman007, @cherriann, @johnnyzee3, @falconfly, @safetyshield, @gingerlyn, @ilene1, @nancywhite, @ekoltun6; I hope that they will join this discussion with more insight to help you and your husband.

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Hi, My husband had his 10 months ago. diarrhea , one problem trying diet and fiber supplements, with some help. weight is big problem, loss of >50 lbs and cannot gain , 6ft 1 and 139 lbs….Atrial fib. due to reason for procedure being done due to necrosis and gangrene from hiatal hernia surgery/ and loss of esophagus and most of stomach. 47 years ago!!!1 did not think they did that then. Did diarrhea go away after a time and what dietary plan helped? thank you, Beverly

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@kanaazpereira

Hi @franknick,

I would like to connect you with some other members who also suffer from severe diarrhea, although for different gastric and internal diseases; but first, @rsinger22, I would like to sincerely thank you for all the support and information you are providing.

Please meet @bobinthevillages, @haighsue, @fa7100, @mo1216, @gman007, @cherriann, @johnnyzee3, @falconfly, @safetyshield, @gingerlyn, @ilene1, @nancywhite, @ekoltun6; I hope that they will join this discussion with more insight to help you and your husband.

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Diarrhea continues and is something that one needs to live around. Food is very trial and error but proteins are best: steak chicken fish lobster. Raw vegetables are very difficult

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i had a colonic interposition in 2011 and have experienced almost constant diarrhea ever since, although not near as bad as yours. However i use Percocet (Oxycodon and acetaminophen), about 3.3 per day on average. I don’t think it’s the analgesic effect that reduces the pain but rather the slowing effect on the gut. Best wishes, -b

Liked by rhaze

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@kanaazpereira

Hi @franknick,

I would like to connect you with some other members who also suffer from severe diarrhea, although for different gastric and internal diseases; but first, @rsinger22, I would like to sincerely thank you for all the support and information you are providing.

Please meet @bobinthevillages, @haighsue, @fa7100, @mo1216, @gman007, @cherriann, @johnnyzee3, @falconfly, @safetyshield, @gingerlyn, @ilene1, @nancywhite, @ekoltun6; I hope that they will join this discussion with more insight to help you and your husband.

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After 6 years the diarrhea never went away for more than a day or so, and then only rarely. Probiotics seem to help and antibiotics seem to make things worse. The only thing that works for me is Percocet (oxycodone and acetymenophen=Tylenol), an average of 3.3 a day. I’ve been taking it at that dose almost since the operation. The diarrhea continues but the abdominal pain goes away, probably more because of decreased intestinal mobility than the pain-killer analgesic effect, but who knows? Every case seems to be different. Percocet is a restricted narcotic, so you need a prescription that may be hard to get. It’s also expensive thanks to big pharma. Obabacare and Medicare might help, depending on your situation. Best wishes -b

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@kanaazpereira

Hi @franknick,

I would like to connect you with some other members who also suffer from severe diarrhea, although for different gastric and internal diseases; but first, @rsinger22, I would like to sincerely thank you for all the support and information you are providing.

Please meet @bobinthevillages, @haighsue, @fa7100, @mo1216, @gman007, @cherriann, @johnnyzee3, @falconfly, @safetyshield, @gingerlyn, @ilene1, @nancywhite, @ekoltun6; I hope that they will join this discussion with more insight to help you and your husband.

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Wow. That has to be close to a record. Do keep it up! My only question is: do you experience pain after eating and if so how do you handle it? Apparently every case is different. Thanks -b

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@kanaazpereira

Hi @franknick,

I would like to connect you with some other members who also suffer from severe diarrhea, although for different gastric and internal diseases; but first, @rsinger22, I would like to sincerely thank you for all the support and information you are providing.

Please meet @bobinthevillages, @haighsue, @fa7100, @mo1216, @gman007, @cherriann, @johnnyzee3, @falconfly, @safetyshield, @gingerlyn, @ilene1, @nancywhite, @ekoltun6; I hope that they will join this discussion with more insight to help you and your husband.

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You got here. I don’t get to this site very often but my wife, Rochelle, is good about it in my place and forwards the messages to me. Several people including myself have been through the procedure and are doing well years later. Good luck and best wishes.

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@kanaazpereira

Hi @franknick,

I would like to connect you with some other members who also suffer from severe diarrhea, although for different gastric and internal diseases; but first, @rsinger22, I would like to sincerely thank you for all the support and information you are providing.

Please meet @bobinthevillages, @haighsue, @fa7100, @mo1216, @gman007, @cherriann, @johnnyzee3, @falconfly, @safetyshield, @gingerlyn, @ilene1, @nancywhite, @ekoltun6; I hope that they will join this discussion with more insight to help you and your husband.

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Yeah 47 yrs ago. I was told I was the 2nd person in the U.S. to have it done.it was started in around 1917 in Europe.wait loss was not a problem for me. They did have concerns I would grow because of lack of nutrients. I am 6th 195 lbs. The diarrhea is still an issue but I am used to it now. There is diarrhea because the colon extracts fluid from the stool. Sence in a CI the colon is moved it can’t do one of its primary functions.

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Yeah they are all a bit different. I don’t get pain after eating anymore I did for the first 5 yrs or so. I do get indigestion and the feeling that I am over stuffed but only a couple times a month.

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@kanaazpereira

Hi @franknick,

I would like to connect you with some other members who also suffer from severe diarrhea, although for different gastric and internal diseases; but first, @rsinger22, I would like to sincerely thank you for all the support and information you are providing.

Please meet @bobinthevillages, @haighsue, @fa7100, @mo1216, @gman007, @cherriann, @johnnyzee3, @falconfly, @safetyshield, @gingerlyn, @ilene1, @nancywhite, @ekoltun6; I hope that they will join this discussion with more insight to help you and your husband.

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Hi @wcbanta,

Thank you for all the support and information you are offering. Please note that I removed your personal phone number from this public discussion. Posts to the discussion board are public, and we don’t want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a secure, private option.
Thank you for understanding.

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@rhaze

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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Hi davidjkeckler….since you were so young, do you remember being given pain meds? I had a collapsed lung during surgery and my breathing is labored and becomes difficult when I walk to much or try and do any more than a small amount of housework. I know each case is different, as I’ve already started to gain weight since I’m eating a regular diet, but I’m still afraid that I’ll eat something that will damage the colon, or the dumping will create an illness..etc. Thank you for responding.

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hi @pamelass
how r u doing? any improvement? i had reconstructive surgery where they took out some of my interposed colon because it stretched and became redundant. the surgery was very painful but it has helped me. unfortunately, my pain is worse. how is your pain?

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@rhaze

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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I’ve just been given a fentanyl patch to use with the oxycodone…did the doctors every find out why you were having the rib pain?

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@kanaazpereira

Hi @franknick,

I would like to connect you with some other members who also suffer from severe diarrhea, although for different gastric and internal diseases; but first, @rsinger22, I would like to sincerely thank you for all the support and information you are providing.

Please meet @bobinthevillages, @haighsue, @fa7100, @mo1216, @gman007, @cherriann, @johnnyzee3, @falconfly, @safetyshield, @gingerlyn, @ilene1, @nancywhite, @ekoltun6; I hope that they will join this discussion with more insight to help you and your husband.

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i too take pain medication for my constant chest pain in my ribs (front and back on my left side). i too take some pain meds for my constant pain but do believe it does help with diarrhea. i still have it but not as much. i also still get dumping syndrome and vomit quite often. my interposition is 11 years old. two years ago, i had a reconstruction of my interposition and they removed 7 inches. this surgery caused more pain for me but helped with my eating. it is a difficult daily existence

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It’s been years and years since my colonic interposition (CI), where my entire esophagus was replaced by colon, but I still don’t whether or not I can vomit. Some people on this site report vomiting, but it’s unclear if all the esophagus was replaced or only part. Nor is it clear if their CI was pro- or ant-peristaltic–i.e., reversed relative to the original front-to back direction of peristalsis. No one, including my surgeon, seems to know. Does anyone know the answer–can I vomit? Thanks in advance for your help.

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@wcbanta

It’s been years and years since my colonic interposition (CI), where my entire esophagus was replaced by colon, but I still don’t whether or not I can vomit. Some people on this site report vomiting, but it’s unclear if all the esophagus was replaced or only part. Nor is it clear if their CI was pro- or ant-peristaltic–i.e., reversed relative to the original front-to back direction of peristalsis. No one, including my surgeon, seems to know. Does anyone know the answer–can I vomit? Thanks in advance for your help.

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I can’t tell you if you can vomit or not. I can tell you that I had all of my esophagus replaced and the doctor explained to my parents that I never would be able to vomit. I don’t know the exact reason all I know is I haven’t vomited in 48 yrs. I do get the dry heaves but that is about it.

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