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pamelasa

I had a colon interposition 7 years ago

Posted by @pamelasa in Digestive Health, 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?

Posted by @Margaret_Marie, Sep 26, 2014

Hi @pamelasa. Here are some lifestyle and home remedies to prevent diarrhea that may be helpful for you http://www.mayoclinic.org/diseases-conditions/diarrhea/basics/lifestyle-home-remedies/con-20014025.

twinblessings06

Posted by @twinblessings06, Jul 9, 2015

@pamelasue I'm so very sorry you have been through so much. My dad is going to need that surgery but for cancer. Where did you have your colonic interposition? Have you been assessed for repair? I read about a surgeon that fixes postoperative complications. I will search my bookmarks and post it to you, if I find it. My family will be praying for you! God be with you!

twinblessings06

Posted by @twinblessings06, Jul 10, 2015

@pamelasue I found the link about revision surgery for colon interposition complications. It looks like they were done at Massachusetts General hospital in Boston. Praying for you! This site won't let me post a link but you can Google it. It's a research article in the Oxford Journals.

rsinger22

Posted by @rsinger22, Jul 20, 2016

@pamelasue I had a colonic intersposition in 2006. I too had a bag on my neck, a feeding tube for months and a bad case of MRSA. i had over 78 operations and a new reconstruction last fall. my pain is constant on my left side and made worse since I had some ribs removed that were killed by MRSA.
I still have diarrhea all the time and at night. i am able to make it to the bathroom. have you looked at fecal transplant to help or taking something to slow down your bowel like immodium?
i have bad reflux at night and sometimes wake up in vomit on my pillow. any suggestions?

franknick

Posted by @franknick, Tue, Jan 3 at 8:39pm CST

does diarrhea lessen with time and how much imodium do you take.

rsinger22

Posted by @rsinger22, Wed, Jan 4 at 6:38am CST

Unfortunately the diarrhea does not lessen with time. Also I still suffer from dumping syndrome

kanaazpereira

Posted by @kanaazpereira, Wed, Jan 4 at 8:49am CST

Hello @franknick,

Welcome to Connect.

Diarrhea and fatigue seem to be he most frequent symptoms after colon interposition. We would love to know a bit more about you; have you undergone this procedure?

rsinger22

Posted by @rsinger22, Wed, Jan 4 at 8:54am CST

Yes I have had the colon interposition after an esophajectomy. Last year I had an operation to resect some of the interposed colon. The doctor removed 7 inches since it stretched over time. This reconstruction involved separating my chest and opening me past my belly button. It was extremely painful but helped. I needed the procedure because my colon interposition became redundant and I was getting food blockages that required producers to remove.

franknick

Posted by @franknick, Wed, Jan 4 at 4:33pm CST

Thank yo for your reply. My husband had the colon interposition due to gangrene of stomach and esophagus caused by problem with hiatal hernia repair.. lost 2/3 stomach and most esophagus. He was operated on sept12. He is off feed tube eating reg. diet but bouts of diarrhea and weight loss is terrible. Also dev Atrial Fib b/c of stress from gangrene 2 surgeries to save him from an life threatening infection process. We are wondering if any meds help with diarrhea or change lifestyle to cope. He never can judge when it will happen, so he is homebound for the most part. A terrible way to live.

rsinger22

Posted by @rsinger22, Wed, Jan 4 at 4:40pm CST

I take regular before meals sometimes to prevent nausea and it helps with dumping.

Does he get the sweets too before the diarrhea

franknick

Posted by @franknick, Wed, Jan 4 at 4:51pm CST

I am wring for my husband at this time. He had the procedure due to a problem with a hiatal hernia repair. Dr. did not respond to our complaints and by the time we were at the ER , test showed a problem he was sent back to surgeon 2 hrs away and had emergent surgery that night . Developed sepsis and mediastinitis and was in ICU for over a month. He needed 2 operations to combat the further gangrene losing 2/3 stomach and almost entire esophagus. Was with spit fistula( esophagus brought to outside chest .) for 7 months to regain strength for this surgery which was on sept. 12/ colon interposition( different Dr. different hospital). At this time he is depressed and discouraged. Most patients had the stomach brought up to esophagus so no one he knows from the hospital group had this type of surgery...We don't know which is worse but this is certainly more involved. He had loss a lot of weight , not being heavy before so he is very thin and therefore weak, and gets so discouraged due to the diarrhea which occurs without any warning or reason that we can figure out. Wondering if any medication, probiotics, foods or anything may help. He also developed atrial fibrillation from the stress to his body from the initial infection and 2 operations required to treat him. Massive antibiotics for months with massive cardiac meds of Heart rates of 175-200....It was a living hell and we were told this procedure would put him back( he was on feeding tube 7 months, with spit fistula)...and he would live normal life, but it does not seem true....The original surgeon lied to us about the extent of his condition and i guess lied to us about that to. The surgeon who did the interposition was wonderful, open and honest but just says it takes time....but we wonder if it ever will get better.....Our life has been turned upside down.....and we seem to be at a standstill, as we were in the process of moving and retiring to a warmer climate to enjoy our life. Now we are constant focus on his condition, and worrying about every occurrence.

franknick

Posted by @franknick, Wed, Jan 4 at 4:56pm CST

Is that meditation raglan? No he used to get sweats drenching at night requiring complete change of clothes and bedding but we thought due to meds. He is no longer experiencing that now. No sign at all of diarrhea coming. Sometimes he gets use and nothing , then other times he doesn't make it to the toilet. A terrible way to exist. prevents us from going out...

rsinger22

Posted by @rsinger22, Wed, Jan 4 at 6:32pm CST

i can totally relate to your husband. I lost 50 to 60 pounds. I too had a spit bag attached to a fistula on my neck. It was totally gross. I also had a hole in my neck after the colon interposition and liquid would drip down. It took a few months to close.

I can say that I was back to my actual weight after about a year. It took my body a long time to adjust. I tried many foods and supplement (ensure) at first but eventually I began to eat more. Yogurt and Jello were helpful as well as pudding to gain weight. Now, I do better with proteins like turkey or meat. Soda is not great for me and all bubbly drinks are really a no no. I always get sick afterwards and many times vomit. When I eat many small meals I am much better. If I eat a big meal, I am more likely to have dumping syndrome.

In terms of mental issues, I have had my fill. I have had depression and feeling of loneliness that no one can understand what I am going through. I was diagnosed with PTSD and still suffer. It makes me upset that I can not do things that I used to do. I have been back in therapy and it helps. I am constantly searching the internet for information in order to improve my daily life. Unfortunately, there are not many people with this anatomy so it is hard. I find this message board helpful.
If you have any questions please ask

franknick

Posted by @franknick, Wed, Jan 4 at 9:32pm CST

Thanks for your reply, It is so frustrating to live this way, especially when due to a surgical error.....He also had a small drainage area from the neck incision and a dehissance ( opening)from the abdominal incision, result of hospital infection, that is clearing but he gets these" fat" blister like areas along the abdominal incision that burst and drain. He tried boost, ensure and carnation powder mix but he tolerates nothing. Used to tolerate v8 fusion but now that is problematic. so it's gatorade and lactiaid ......He doesn't like yogurt and pudding seems to be problems now also. so trying to make food is a challenge....especially when trying to get high calories in. It is the diarrhea that depresses him because he is trying to gain weight and feels he loses all his food in an instant. He takes imodium on occasion but ...he was cautioned by some that it may be binding, but most of he people who had that problem have had the surgery where the stomach is pulled up to meet the esophagus, and the may present differently although both use dumping and reflux. I think he needs the imodium to stop his fast peristalsis( bowel lining movement ), but who knows? He takes omeprazole twice a day but not any other antacid or bowel treatment ..He does have a powder med that would help but it contradicts with his coumadin for h Atrial Fib that he to from all of he stress on his body from the surgical mishap and 2 operations for sepsis , that was back in March, and he was in ICU for over a month then rehab for a month and home lat June, on feed tube waiting for this surgery in September...t has been a long haul and it appears it will continue for some time yet....Hoping for the best. will try and connect him to the message board, but when some people said they are 7 years out with still same diarrhea , i did not want him to get any more discouraged. There isa support group from the hospital and he talks with one person pretty regular by phone.....but all of the people in the group had the stomach pull up surgery so he is the only one with the interposition.......He doesn't sleep at night either but will not take any anxiety meds..or sleep meds.

rsinger22

Posted by @rsinger22, Thu, Jan 5 at 7:32am CST

I still drink a lot of Gatorade every day. How about eggs. I eat a lot of them and very easy to get down.
It did take me a while to get things to improve. I had MRSA infection and had a drain. Unfortunately it has been a constant battle for me but I try and have little things as goals.
Depression is a big thing. I suggest professional help. Also I sleep using a edge to keep my head up. I have terrible reflux some nights and wake up vomiting

rsinger22

Posted by @rsinger22, Fri, Jan 6 at 8:49am CST

how old is your husband..would u like my number to talk to him

franknick

Posted by @franknick, Fri, Jan 6 at 6:57pm CST

He is 72 but prior to the botched surgery he was very active, golfing , mowing 2.5 acres grass, walking the dog, and plowing snow in winter where we live. so he was a very young 72 years

colleenyoung

Posted by @colleenyoung, Jul 21, 2016

Welcome to Connect @rsinger22.
I can't imagine having 78 operations! Do you sleep propped up?

@twinblessings06 How is your dad doing?

rsinger22

Posted by @rsinger22, Jul 21, 2016

i do sleep propped up. sorry, i meant 7 to 8 operations (mostly 4 thoracotomies, esophajectomy, colin interposition , removal of ribs)

kanaazpereira

Posted by @kanaazpereira, Fri, Jan 6 at 12:19pm CST

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.

franknick

Posted by @franknick, Sat, Jan 7 at 10:53am CST

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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