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.

Jump to this post

I’m having SERIOUS pain…rsinger…were you ever told what caused the pain? How did you take care of it? Did any medication help better than the other?

REPLY
@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.

Jump to this post

i wear a prescription Lidoderm patch. take pain meds and advil daily too. no one told me what caused they assumed it was all the thoracotomies and other surgeries

REPLY
@rsinger22

i wear a prescription Lidoderm patch. take pain meds and advil daily too. no one told me what caused they assumed it was all the thoracotomies and other surgeries

Jump to this post

I had a colon interposition about six years ago I was wondering if anybody ever had a case where the colon swells up really hard in your neck and bulges out at times while eating most likely by swallowing something too big and takes over an hour or two before it can relax and then you can swallow again? Anybody know a doctor that currently treats patients with this procedure?

REPLY
@lsecrist

I had a colon interposition about six years ago I was wondering if anybody ever had a case where the colon swells up really hard in your neck and bulges out at times while eating most likely by swallowing something too big and takes over an hour or two before it can relax and then you can swallow again? Anybody know a doctor that currently treats patients with this procedure?

Jump to this post

Hello @lsecrist
I see that this is your first post on Connect and I would like to say, "welcome." I am sorry to hear of this uncomfortable bulging in your neck during meals. You do not mention how long ago the colon interposition was done, however, that might be a variable as you think about this problem. Did this problem develop right after your surgery, or is it a more recent event? Also, are there any types of foods that tend to cause this symptom, or is it all meals and all types of foods? Did your doctor give you any dietary instructions after your surgery?

While I have never had this surgery, we have many Members on Connect who have and I hope that one of them will respond soon.

I look forward to hearing from you again as you feel comfortable doing so. Has your doctor been contacted about this?

REPLY

I had a colonic interposition in 2001 for reasons somewhat similar to yours, with similar discomfort and misery, but after a few more surgeries and a little time, most of my symptoms went away. I have to eat all the time and diarrhea is continuous. Pain is an inevitable problem for me after meals, but my pain is more generalized, occupying the whole abdomen. It’s effectively eliminated by taking a tablet of Percocet (Oxycodone/acetomenophen), a potent restricted narcotic, 3-4 times a day on average. The pain relief appears not to come from its analgesic effect, but from its ability to slow and narcotise the intestine. Perhaps you can contact a pain doctor for advice on that. Colonic interposition is a rare procedure, so we are in a select crowd where most doctors haven’t a clue about what to do about pain. Copy my email and ask him/her to phone, if narcotics are hard to get where you are. Ask him to give it a try. Good luck and best wishes…and send me a private message if you think I can help.

REPLY
@wcbanta

I had a colonic interposition in 2001 for reasons somewhat similar to yours, with similar discomfort and misery, but after a few more surgeries and a little time, most of my symptoms went away. I have to eat all the time and diarrhea is continuous. Pain is an inevitable problem for me after meals, but my pain is more generalized, occupying the whole abdomen. It’s effectively eliminated by taking a tablet of Percocet (Oxycodone/acetomenophen), a potent restricted narcotic, 3-4 times a day on average. The pain relief appears not to come from its analgesic effect, but from its ability to slow and narcotise the intestine. Perhaps you can contact a pain doctor for advice on that. Colonic interposition is a rare procedure, so we are in a select crowd where most doctors haven’t a clue about what to do about pain. Copy my email and ask him/her to phone, if narcotics are hard to get where you are. Ask him to give it a try. Good luck and best wishes…and send me a private message if you think I can help.

Jump to this post

Hi @wcbanta,

Thank you so much for all the support and information you are offering. You may notice that I removed your personal email and address 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.

REPLY
Please login or register to post a reply.