JIB (intestinal bypass) experience

The following was posted by K. S. on a mailing list. The surgery K.S. underwent is an intestinal by-pass. This surgery is generally not done anymore however, according to the ASBS, any surgery involving an intestinal bypass (which includes the gastric bypass and duodenal switch surgeries) might involve "at least some" of the long term side effects seen with the JIB..

---------------------begin K. S. article-----------------------

Re-gained the weight she lost after surgery

As many of you know, I underwent an ileojejunoleal bypass in March 1982. While the surgery had many immediate nasty side effects (uncontrollable bowel movements, explosive and painful gas, nearly unmanageable odor problems, kidney stones, colon inflammation, intolerance for many foods and drink) perhaps the most ironic of all was that I only lost 90 pounds and within two years had regained it *all!* The surgery involved disconnecting nearly 16 feet of small intestine, leaving me with about 18" of small intestine which is actually hooked up and functioning....the rest was left "floating" in the abdominal cavity, in the event that the surgery itself failed and would be available to reattach if necessary.

Well, I managed those side effects for almost twelve years and although I was bitterly disappointed with the outcome, I was willing to make the best of things. I was, after all, in good health except for these side effects, and I was no longer insured and couldn't afford the surgery to reverse the bypass.

Her long term side effects began ten years later

Fast forward to 1994. I began to suffer from something called dermatitis-arthritis bypass syndrome. Every few months, I would get a red pox on my arms, legs, and thighs and experience excruciating migratory arthritis for about 7 to 10 days. First one joint, then another, would stiffen and become inflamed and very, very painful. The syndrome is caused by bacterial overgrowth in the disconnected small intestine. You see, the bacteria present in the small intestine is not found anywhere else in the body, and it is normally removed from the body through the normal elimination process. However, the disconnected small intestine laying atrophied, but still kept alive by the surrounding environment in my abdomen, continues to produce this bacteria on some marginal level until it reaches a critical level.

This bowel, though, has no outlet, so the bacterial overgrowth dumps into my bloodstream, where it provokes an immune system response. These immune complexes (antigen and antibody bound together) circulate in the blood stream and are deposited in tissues and joints....this it what causes the inflammatory reaction, the arthritis. Treatment consists of hitting the bacteria with an antibiotic and taking anti-inflammatory drugs to ease the pain. This worked for about two years. Until August 1996.

In August, I began experiencing increasing arthritis pain. No longer did the arthritis continue its "hit and run" tactics of the past....it attacked many joints at once and did not disappear after a week or so. I completed three, 10-day courses of antibiotics, each one progressively stronger, to no avail. In September, I visited the doctor to have my annual blood work-up to see if all was well. All was not well.

The blood chemistry tests came back within normal limits. However, my liver enzyme count was over six times normal (normal is about 30...mine was 198). By this time, I was suffering arthritis pain in the ankles, toes, knees, and hips and my mobility was significantly impaired. My doctor prescribed a different antibiotic, 800 mgs. of Ibuprofen three times a day, and took more blood tests. A week later, my liver enzymes rose to 495 and I was diagnosed with autoimmune hepatitis. More anti-inflammatory drugs were prescribed, another, stronger antibiotic. I also received what I now consider to be a life-saving referral to an rheumatologist who began other bloodwork.

This treatment continued throughout October, with my arthritis progressively worsening. By October 22, I was wearing wrist supports on both arms and a knee brace, using a cane and a riser on the toilet just to get through the day. Then, the vasculitis struck.

No help for the severe inflamation and pain

The key word here is inflammation: inflammation of joints (arthritis), spontaneous inflammation on shins (erythema nodosum), autoimmune hepatitis (inflammation of the liver), inflammation of the blood vessels (vasculitis). My immune system was out of control. I developed a huge, horrific skin ulcer on my belly fold, and within five days it had grown from the size of the tip of your finger to the size of a grapefruit, gaping and infected. On Friday, October 25, I was struck with inflammation of the chest wall and accompanying shortness of breath. I could not lay down if I wanted to keep breathing. My arthritis was so critical by this point, my hands were clenched into claws and I was unable to bend any of my fingers. I was rushed to the emergency room with blood pressure of 176/125 and barely able to catch my breath, barely able to walk, with a gaping, oozing wound the size of a bazooka!!!! I hit the ER with high hopes, thinking that I would finally get the help I needed.


As a whole, I am sure ER doctors and nurses are fine, competent, people. However, I did not meet any of them. The ER doctor I encountered ordered a dozen tests and two chest x-rays to determine if I was having a heart attack. He ordered a big shot of Demerol to help with the pain (which helped me breathe slightly better) but at midnight, came back to tell me that there was good news.....my heart was fine...he was giving me a prescription for Demerol for pain and sending me home.

I stared at him in amazement....I said, "Sending me home to WHAT???? I can't lay down, I can't breathe, I can barely walk, my ankles are swelled the size of Montana, my liver enzymes are off the scale, my abdomen is oozing out my life's blood on your gurney here, my hands are frozen into little claws that no longer function, and you want to dull my senses further with Demerol and send me home to sit up in a chair all night???? Are you out of your mind????!!!!!!?????"

He obviously had never had anyone question him like this before, as he just stared at me and said, "You can't expect to be admitted on a Friday night with symptoms like these. Unless you are having a heart attack, a stroke, or a blood clot, I can't admit you."

One additional problem was that my primary care physician was out of town and the doctor on call would not agree to admit me....not surprising, since he was acting on the advice of the ER doctor, who by this time was very sick of dealing with me. I continued to argue with this odious doctor for half an hour, to no avail.

I went back home, sat up in a chair till 7:00 am, at which time I called the doctor on call who had refused to admit me. I carefully, calmly, through clenched teeth, explained all my symptoms and explained the treatment my primary care physician had been trying for almost two months, all the while becoming acutely ill. I finally asked him, "Just how near death do I *HAVE* to be to be admitted and get adequate health care?"

At this point, the beleaguered Doctor Montoya gave up, instructed me to come to the hospital where he would do a "Direct Admission" and give me an exam. From his tone of voice, I knew he was expecting to find my complaints trivial and overblown. I got there by 9:00 am and when he finished his exam, he began issuing orders, contacted the specialists I had been seeing, had taken a ream of notes and had changed his tune entirely. He had a plastic surgeon come in to look at my wound, and almost immediately began IV antibiotics and contacted my rheumatologist.

My rheumatologist arrived about two hours later and was appalled to see how my condition had deteriorated and ordered a number of tests which revealed that I had systemic vasculitis. By 11:00 pm I had been started on Prednisone and Imuran (corticosteroids and immunosuppressive agents).

Finally some relief from the pain

I saw almost immediate results. Although the Prednisone gave me nightmares, by early the next morning I could move my fingers. The stiffness was slowly leaving my knees and ankles and I could bend my knees. My chest was still constricted, but I could at least halfway recline on the bed and still breath instead of sitting up hunched over gasping for breath. By Sunday evening, I was able to lay down, and by Monday, my chest pain was gone.

I went though many tests (including an excruciating colonoscopy) in the next few days, but by Thursday I felt well enough to go home. Home Health Care nurses visit me twice a day to change the dressings on my wound and it is looking better, and is slightly smaller (it measures 4" by 7"). It is the grossest thing I have ever seen in my life, but I am trying to deal with it. I cannot have any surgery until I am off the steroids, so am not making any decisions about it for now. My options are:

  1. Have the surgery reversed and reconnect the small intestine.
  2. Leave the present surgery in place and simply remove the offending small intestine which has no outlet.
  3. Leave intestine in, but connect it to the bowel, giving it the outlet it needs but leaving my present surgery in place.
  4. No surgery. Continue to treat the symptoms.

Additional Surgery may not relieve symptoms

The problem is that most research shows that even if I do have some sort of surgery to reconnect or remove the disconnected bowel, there is a 40% chance that I will continue to have the symptoms. I will still have the autoimmune problems, and I will still have autoimmune hepatitis. The steroids and immunosuppresents have horrendous side effects, too, which must be considered. Nothing is without a price.

The good news is that *today* I am okay. I don't think about tomorrow any more. I am focused on today. This minute.

I taped the 48 Hours show on Thursday because I just didn't have the strength to watch it. I cannot bear to watch weight loss surgery promoted, any weight loss surgery, because it was after watching a talk-show about it that I decided to have mine. It brings back too many feelings and nearly overwhelms me. I see doctors and others promoting this mutilation without a word of the long term effects and with no warning of problems like mine.

Facing a shortened lifespan because of the surgery

I am only 41. I hope to overcome these problems, but right now it doesn't look too promising. The average life expectancy for patients who have had intestinal bypass surgery is about age 55. It angers me to think that I may not even have that long, and that my last years have to be so wretched. It is not fair....

By K. S.

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