Susie’s storySusie’s story, in her own words, 2009, came to me via Jill Osborne’s site, the Interstitial Cystitis Network. Jill helped me to post a request on her site asking people who had experienced diversion surgery (removal of their bladder) if they would be willing to be interviewed about that experience. Three people responded and I interviewed them; one of them is Susie. Her story is representative.
Part One of Susie’s story, a summary:
- Susie had more than 42 urological surgeries and more than 40 courses of antibiotics
- Quality of life following these surgeries drastically deteriorates.
Part Two of Susie’s story, a summary:
- Three major diversion surgeries followed by 40 hospitalizations for kidney infections and bowel blockages, and many more surgeries for other “complications” of diversion surgeries and antibiotics, including rupture of tendons in hands and feet.
- Quality of life during and after these surgeries becomes much, much worse than when all this “treatment” began. Here are the details that are missing from the urological literature.
Part One of Susie’s story; the patient experience of urological surgeries and antibiotics
- 1984-85 – Before urological treatment, Susie had chronic urgency and frequency, but she was coping nicely.
Susie’s quality of life was not perfect, but it was infinitely better than any point in the process of her urological “treatment.”
- In 1986, Susie’s urological diagnosis and treatment begins with 2 surgeries: a cystoscopy and hydrodistention.
Susie’s quality of life after the hydrodistention added extreme pain to the symptoms before treatment began, urgency and frequency.
Most important, it appears, was the diagnosis of IC/PBS; “He (the urologist) told me I had mast cells in the bladder and a lot of bleeding and that I did have IC.”
This diagnosis started the whole cascade of surgeries and the deterioration of quality of life I have seen in patient interviews and in our survey, which asked patients whether their symptoms were improved, worsened or not effected by the various “options” they experienced, www.cystitispatientsurvey.com. The letter discusses the harm from these surgeries. I am aware that this is speculation, but as I read about hydrodistention, and glomerulations, I noticed that at least two urologists in the literature describe seeing no glomerulations with the first hydrodistention, and many with the second. What does this mean; is there sequence or causality here? In any case, the very invasive, diagnostic surgery, which causes bleeding in the bladder, hydrodistention, was the beginning of Susie’s extreme pain.
• In l987, Susie’s urological treatment would include 15 surgeries (instillations of DMSO, Gynecological D&C and laparoscopy, hydrodistention and cystoscopy, and YAG laser treatment) and more than 19 courses of antibiotics, prescribed for 4 bladder infections and to accompany the surgeries. All of these surgeries were again recommended in the 2011 AUA Practice Guidelines for treatment of IC/PBS.
Susie’s quality of life at this point had severely deteriorated:
Urgency and frequency continues after all the surgeries in 1987
Extreme pain continues, and worsens.
There were 4 bladder infections; infections had not been a problem for Susie before these urological surgeries began. Instrumentations can and do cause infection and even biofilms, which are very hard, almost impossible to detect and treat; Susie has ongoing bladder infections during all the bladder surgeries
Constant bladder spasm – Urispaz is prescribed but does not give relief
• In 1988 Susie was subjected to 23 surgeries (multiple instillations of DMSO, Solucort and heparin, 4 “irrigations” (Susie can’t read the substance in her records) second Yag laser, third hydrodistention and 2 spinal taps, and at least 24 courses of antibiotics, including at least 2 broad spectrum antibiotics in 1988. (Neuroxin and Cipro)
I urge you to read the long list of surgeries and dates of service provided in the footnotes.
Susie’s quality of life, following these surgeries and antibiotics was:
Continuing urgency and frequency
Continuing bladder spasms – urispaz continues
Far worse pain – Susie is now on oral Darvocet & topical Tetracaine “There was a lot more pain,” Susie says.
Serious loss of capacity of the bladder – about 125 cc when under anesthetic, which brings worsening urgency and frequency and pain
In April of 1988, Susie was referred to a urological surgeon for consideration of diversion surgery, and at about 32 years old, she is faced with the possibility of losing her bladder altogether. This is less than 2 years into urological surgeries.
Since there was little or no disclosure about what her quality of life would be before any of these 40+ preliminary surgeries, let alone what it would be like after diversion, she was making this crucial decision alone and in the dark. Most important, Susie was not, in the beginning, tested for any of the medical causes of her initial urgency and frequency (e.g. allergies, infection not revealed on a routine urinalysis, pelvic floor dysfunction, and others), nor were there any alternatives offered – only more urological surgeries. and worsening alternative causes tested for diagnoses or treatments were offered at any stage of treatment, from 1986 to 1990 when she agreed to have her bladder removed. It is a specialty of specialized medicine to ignore medical specialties that are not your own.
Susie:“I don’t know if the DMSO caused all this but I did get much worse after these treatments.”
This author asks: Would the urologists who treated Susie have recommended these surgeries for themselves, or for their daughter, their wife, their husband or son?
Susie: “In 1989 I saw a second urologist.”
There followed one Surgery, a hydrodistention (or 2, if instillation was added) and at least one prescription for antibiotics.
The hydrodistention was severe: “…a hydrodistention of my bladder was done that was much more severe than the normal one, despite the fact that the urologist who had been consulted in 1988 warned against any more hydrodistentions, because that could cause more problems.”
Susie’s Quality of life: at the end of 1989:
All of the problems Susie had in 1988 were the same in 1989, except that another hydrodistention was done in 1989, contrary to the warning of a consulting urologist. “The hydrodistention was horrible; it was supposed to be same day surgery but when I was in recovery there was so much blood that they had to admit me to the hospital. I don’t know why it was so bad but it was and the pain was horrible. And there was no benefit from it. I was in this pain, which was even worse than before, for a couple of months.”
Chronic urgency and frequency continue
Bladder spasm continues – urispaz continues
Far worse pain – patient is now on oral Darvocet & topical Tetracaine “There was a lot more pain,” Susie says.
More antibiotics, more iatrogenic disease I think it’s fair to assume that after 40+ courses of antibiotics, Susie has some of the iatrogenic diseases caused by antibiotics, including a Candida albicans infection and allergies. Solucort indicates severe allergies and medical conditions.
Serious loss of capacity of the bladder – about 125 cc when under anesthetic – , which brings worsening urgency and frequency and pain
According to urologists, her only option now was diversion surgery:
Following all these surgeries, Susie’s urologist said that “the bladder had gotten so bad that I needed surgery – diversion of the urine. This meant having my bladder removed. I was just in my early thirties.”
Next, says Susie, I went to a famous urologist in NY, about the question of having my bladder out. His wife was a social worker and asked me to keep a journal. I thought that was crazy because they thought I could retrain the bladder and I had absolutely no control – so I did not continue with this doctor.
Again, there were no other alternative testing or treatment, outside urology, offered to Susie, by any doctor.
Part Two of Susie’s story: 1990-2009; 3 major diversion surgeries followed by 40 hospitalizations, many more surgeries; the patient’s experience of the “failure” of diversion surgery
At 34 years of age, Susie was told that the only thing urologists had left to offer her was diversion surgery. There was severe and chronic pain every day. Susie was faced with an impossible decision, having almost no information about any of the urological treatment, including diversion surgery, which she was legally entitled to by Patients’ Rights. I asked Susie if any of the urologists had asked her if she had allergies or any other condition before all these surgeries began; if allergies might have been a cause of the initial urgency and frequency. “It never came up,” Susie replied. Allergists had identified urgency and frequency with food and other allergies decades before this. There had even been at least one lecture about this at a urological annual meeting in 1971. Why has there been half a century of delay in considering that some diseases – like allergies – might be a clue to understanding chronic urgency and frequency and urgency and pelvic pain? Why are American doctors so blind to the alternative diagnoses and treatments offered by other medical specialties, and care givers like physical therapists? In France, physical therapy pre and post childbirth and pelvic surgery has been routine for a long time. One young urologist told me, on film, that he has to do something for the patient – and to him, dilation of the urethra, which he calls “voodoo,” seems “safe,” and it’s the “mainstay of the private practice.”
The Guidelines call diversion surgery treatment line number six. Are these multiple surgeries and the “final treatment,” diversion surgery, not an assault of patients?
Three diversion surgeries; I ask you to imagine not only the physical ordeal for this patient, but the social issues, the emotional issues.
1. The first urinary diversion operation: “My bladder was disconnected from the ureters but left in my abdomen, that is, not taken out. The ureters were then implanted into a pouch constructed of intestine, a substitute bladder. The intestinal pouch was then surgically attached to the inside of my abdomen, below the belly button, and a “stoma” or hole was created between the intestinal pouch and the outside of my abdomen.
Susie’s Quality of life:
“Every day I would have to catheterize the urine many times.”
“This didn’t work. At first all the bladder symptoms disappeared – there was no more pain or frequency and urgency, or pain in the new substitute bladder, the intestinal pouch created inside my abdomen. The doctor thought the pain had disappeared because my urine was toxic and had caused the pain in my real bladder.
“But then the terrible symptoms I’d had before the diversion came back - terrible pain in the pouch and terrible frequency and urgency. The “stoma” and the pouch started to spasm so badly that urine shot across my hospital room to the wall. I had to try the medicine they use in surgery, heparin; I had to inject it thru the catheter. It didn’t stop the spasms, which is what it was supposed to do.
“The spasms were extremely painful and there were also many infections and many more antibiotics.
2. “On May 1 of 1990 there was stricture of the stoma – it closed up or narrowed so much that I couldn’t get a catheter in to drain the pouch. The second major surgery was about fixing this.
Quality of life: One of the complications from the first diversion surgery was a severe hernia. They had to move the loop and also move the stoma to the other side of my abdomen. I don’t remember why. I think it was because the hernia was so bad that the abdominal wall wasn’t strong enough to hold the stoma anymore so they had to move it to the other side.
A “regular” diversion surgery was done at this point, creating a pouch to hold urine outside the body as well as the one inside the bladder. A lot of my intestine was used to provide the internal pouches.
3. “The third major surgery was because the intestinal pouch, the substitute bladder, ruptured – it broke. Actually, I’m not sure if it was the second or third substitute bladder that ruptured. But it was unbearably painful.
Susie’s Quality of life:
“I was in and out of the hospital too many times to count in 1990, all for problems caused by the first continent diversion. They had to open up my abdomen for many reasons, and things were so complicated, so painful and so frequent that I am not even sure anymore what all the things were that happened. It was such a mess, so horrible.
“I was always on the same floor – the urology floor – because these were all urological surgeries.
“Sometimes the general surgeon was called in and he worked with the urologist; they operated together to try to correct complications from so many surgeries – hernias and strangulated hernias, and other things. Three times the general surgeon was called in to help deal with these complications of so much surgery. I had two hernias, I think.
“There were spasms of both the internal and external pouches. One of the tests was to drink all this stuff. They had me come in and they gave me an IV that starts the kidneys going, I think with a chemical called Lasix. Spasms would cause urine to shoot all the way across the room. Other times I’d be lying flat and it would shoot up like a fountain. Nurses would try to put a catheter in, but spasms were so bad that they couldn’t get the catheter in or out.
“There was just one bad thing after the other.
“At one point Total Parenteral Nutrition (TPN) was started, total nutrition through a main line.
“Then one lung collapsed, and they had to put in a chest tube for a couple of days and check the lung with x-rays to see if the lung was recovering. The chest tube was defective and they had to do it again.
“This and all the other procedures were too painful to describe – unbearable pain.
“Surgery is horrible – there were lots of things that were side effects of too much surgery. “There was so much scar tissue in the intestines that a colonoscopy would only go ¼ of the way into the intestine.
Throwing up feces – intestinal content: “One of the intestinal hernias was so bad that it looked like a breast on the outside of my stomach. The intestines had not just herniated but wrapped around each other – you can die from this. The doctor had to call the general surgeon in to work on this.
“The intestines don’t work because of complications from numerous surgeries. I have gotten such horrible constipation, more than once, for two weeks, that I started to throw up feces; this happened last year and then again this year – Doctors say this is because of scar tissue caused by operations…
“I used to have bad bloating. It’s not as bad now.
“If the doctor takes the bag off and looks thru the stoma, through the loop of intestines that serves as diversion to the outside bag, the substitute bladder, there is “cobblestoning;” this isn’t healthy.
“They had to put in nephrostomy tubes. The ureters had narrowed causing kidney infections.
“One day, a Saturday, I felt sick. A friend was coming and we went antiquing. Halfway thru the trip she had to take over the driving, and when we got to the friend’s house, I couldn’t sit up. I was throwing up, and had a fever of 104. An ambulance was called to take me to a major teaching hospital, from the local hospital. This was a trip of more than an hour. When I got there my temperature was 105 and I was in the hospital for days. A month before this there had been a Kidney infection. My doctor decided to find out what was causing these infections and the previous ones. He put in a nephrostomy tube to expand the ureters. These tubes were inserted into my side, and out thru the stoma into the bag. Interventional radiology was done to measure the pressure - but it didn’t work. Major surgery had to be done to fix the ureters. I think there was a hernia too.
“In 1996 or 97, I started getting horrible blood in the bag – mostly blood. I don’t know the reason for that, but they had to do surgery for that. I don’t remember why.
“I had a few stoma hernias. In the area around the stoma, the muscles are cut, it’s weak, and twice I had very bad hernias.
People should know that with all the complications and infections I had a lot of Cipro and I’ve gotten tendon ruptures from Cipro. They don’t give Cipro to children now because of this; there have been a lot of law suits. My Achilles tendon ruptured, the tendon in my thumb also ruptured. They had to replace the tendon in my thumb with a tendon from the finger next to it. The big toe in my foot ruptured. You have to be really careful with Cipro.
“I had Botox about the beginning of 2007. He would inject Botox right around the stoma, into the abdominal wall, to stop the spasms, but it didn’t work. There were spasms of both internal and external pouches. He sent me to a plastic surgeon and he cut my nerves to the abdominal wall and that lessened the spasms. I still get spasms, but less severe.
“Things have calmed down now, in a sense. I haven’t had a major urological surgery since 2003.
“In the late 1990s or early 2000 I had stricture from the diversion, with horrible pain. My urologist at the same teaching hospital sent me to a pediatric urological surgeon because they do more repair of stricture and he found that the loop, before it comes outside, had stricture and the urine was backing up; he had to go in and open it up.
“Twenty years of complications - my urologist feels horrible because he didn’t put an external pouch in, in the beginning.
I list the following because who knows where these tumors and neurofibrosarcoma came from. Has the human body evolved to cope with all the poisons we throw at it from pharmaceuticals, surgeries, let alone all the other environmental toxins? It seems to me that we don’t really believe in evolution, or we would be a million times more careful about medical care now, given the constant “Silent Spring” that assaults our bodies daily.
Susie continues: “I also had other major surgeries that as far as I know had nothing to do with the urological problems. And I had a spinal tumor. I had operations for these conditions because I would have been paralyzed if I didn’t have the surgeries.
“I also had Schwanomma, or nerve sheath tumors, neurofibrosarcoma, in my foot. I was told I’d have another tumor in about 10 years.
“This year I was at a pain clinic at the same teaching hospital, and a man there said that his wife was given an antibiotic and it saved her life… I thought, I went through all these surgeries and another woman was saved by an antibiotic?
“I asked my urologist about this and he said if an antibiotic cured her she didn’t have IC.
“No one needs to go through what I went through.”
In an e-mail I had today from Susie, she says “I wish someone would have talked to me before this journey had started. ”