My Long Journey of IBS Treatments with Different Physicians
Written by: cookies4marilyn
If you have Irritable Bowel Syndrome (IBS), you have most likely gone through the gauntlet of physicians, gastroenterologists, or perhaps internists in search of elusive treatment. So did I. My journey was a marathon over the course of nearly twenty years. It wasn’t that my many medical professionals were not doing their job; each and every one would listen to my list of symptoms and, with a knowing concern, proceed down their tried-and-trusty list of IBS medications.
IBS negatively impacted my entire life, and perhaps, like many who are diagnosed with a functional disorder, I felt torn between being grateful I didn't have something “serious” and guilty for feeling like I was dying anyway. People treat you differently when they know that IBS is something that isn't a life-threatening condition. Even my last gastroenterologist kindly told me that he could treat the pain of his colon cancer patients better than his IBS patients.
As an IBS patient, it seemed that I was destined to endure an existence of life-altering pain and disruptive urgent diarrhea, without much empathy. To me, this seemed somewhat ironic: how many times have we all heard, “well, at least it's not serious and you don't die from it!” You feel bad—and, yes, guilty and shameful—for those who do die from so many horrific and painful diseases, but yet sometimes you want do die from all the pain and embarrassment. At least, I did.
I was diagnosed “officially” with IBS in 1988, but my symptoms began in 1983. At first, I thought I was reacting to stress—the periods of pain and urgency and diarrhea came only a few times a month, and though they lasted for quite a while, I kept thinking it would pass. But these episodes started to come more frequently and lasted longer and were more and more painful as the months went by. Sometimes I would find myself trapped in the bathroom for hours and, as time went on, I began to fear what was happening to me.
Did I have an obstruction in the bowel? Did I have colon cancer? Some other gastrointestinal disease? Or perhaps I had the disease my mother died from, which sometimes had similar symptoms. But I shrugged this worry off, and just “lived” with it—and the embarrassment of trying to schedule my life around the pain—and not knowing when or where the next bout would occur.
My IBS eventually got to the point where almost every day, or at least three times a week, I would suffer with horrible cramping, abdominal pain, and diarrhea—with some attacks lasting four hours at a time. So, after the birth of my second child, I decided I needed to see a gastroenterologist. He said the symptoms warranted a colonoscopy, and I was pretty scared to have this done. I drank the inappropriately named solution—“GoLYTELY®”—almost gagging after an hour or so, and taking many more to get the whole jug down. But, strangely enough, though it made me pretty tired, I felt great after getting everything out of me. Ironic, I thought: hey, the cure is not eating! This is rather interesting when I think of it, because later on in my IBS journey, I did beg the doctor to put me on nutritional IV only, so I wouldn’t have to eat!
The colonoscopy came back with an IBS diagnosis, which led to many visits and meds—and, as that gastroenterologist came up empty, I went to another, then to an internist, then to a family practice physician, and again to another gastroenterologist.
Over the next twelve years or so, I was prescribed various IBS medications by my gastroenterologists and physicians. Examples include every antispasmodic including Hyoscyamine (Levbid®/Levsin®, and Levsin SL), Dicyclomine (Bentyl), several diets and diet modifications/eliminations, fiber, the antidepressant Amitriptyline (Elavil®), various SSRIs (Prozac®, Effexor XR®, and others), codeine, Colpermin® (enteric-coated peppermint capsules), various other antidiarrheal and/or antiperistaltic prescriptions or OTC medications, as well as non-label-use of prescriptions such as Seldane, which has a side-effect of constipation to combat my extreme diarrhea. There were other medications and herbals as well.
Prolonged urgency and long hours of being “incapacitated” resulted in abdominal surgeries, including removal of a prolapsed uterus; ligament repair, which resulted in the ovaries moving to the top of the abdominal wall and attaching themselves to each other; and various complications in the years that followed.
In the midst of these treatments that offered no relief, I went to the Mayo Clinic. There I was given the antibiotic Flagyl®, as a precautionary measure, even though tests revealed no parasites, and also a calcium channel blocker usually prescribed to regulate heart muscle contractions—supposedly, as a side-effect, it would also result in a more regulated, slower, bowel motility—but neither proved effective. Later, I was invited to become a participant in the Alosetron (Lotronex®) clinical trials at Mayo Clinic, but I was too ill to travel back to Minnesota to take part.
At one point, I was in so much pain that I went to the ER after eating only crackers, and was put on IV and an antispasmodic, yet still had the fastest barium X-rays on record. The diagnosis remained IBS. How could I be this sick and “only” have IBS?
After four colonoscopies, endoscopies, a sigmoidoscopy, various hospital visits, and more ineffective treatments, my gastroenterologist (remember, this was that last one out of three) said he had exhausted his treatment options, and urged me to search the Internet to search for anything available.
I suppose, in retrospect, it seems rather fickle for me to go through all this doctor searching and hopping. Most of the doctors were sympathetic but frustrated because they could not provide any answers. Some of them prescribed “off-label” medications just for the constipating side effects—and some of these medications were later pulled from the market. I gambled with my health in some ways, because I took whatever meds they suggested, not knowing what the future effects would be. But when you are in such pain and suffering, you want the pain to stop. Unfortunately, some of those meds made me tremble or shake, dizzy, nauseous, and all manner of other nasty effects, but, of course, no relief from the IBS symptoms—or very short-lived at best.
Over the years I have read and talked to IBS patients who have had doctors that were less than sympathetic, some even down-right rude or dismissive. I have had a few of those too, for other health conditions. And I never returned to doctors who had treated me as less than a person, dismissing my concerns and suggestions.
I can recall an internist who dismissed my severe pain and chalked it up to either more IBS stuff, or a very rare disease that warranted an expensive diagnostic test. She was late to her appointment and blamed me for having too many concerns to fit into the appointment time, and if I had any more to tell her, I needed to make another appointment! She decided she wanted me to go to a pain clinic. I begged for an ultrasound, because I suspected my pain was coming from my gallbladder. It was. I never returned to her.
Sometimes we are so accustomed to the doctor always being right that we dismiss our inner voice that says, “Get the heck out of here now!” There have been several doctors (one actually a dental surgeon) with whom I wish I’d listened to that inner voice screaming at me—my instincts were right every time. And the doctors were wrong. This isn’t to say that sometimes we need to allow for some different personalities if the physician is highly skilled in a very serious health condition, but for the IBS patient, compatibility with your doctor is important, because most likely you will have an ongoing relationship with them in working together to find answers for your IBS. The best physicians are those that work with you and are open to your concerns and needs, and are not hung up on whether everything they do is “right.” They are willing to expand their horizons and learn from their patients’ experiences.
This brings me to my final visit with my gastroenterologist. Following his suggestion to go search on the Internet because he was out of answers, my search led me to the IBS Group Bulletin Board in 2000.
This amazing community opened up a whole new world for me—a world of understanding, empathy, and other new treatment options—and these were beyond the typical physician’s protocol.
Having felt so isolated for over 17 years, it was enlightening to feel the compassion and caring of others who were experiencing the same disappointments in lack of symptom resolution as I was. The many physicians who tried to help me over the years did the best they could do at the time, and I did feel that they were as frustrated as I was in their search to help me feel better.
But it was here that I learned about the medical research being done to help the IBS sufferer. It was here that I learned that one member had used calcium to successfully treat her IBS, others used a special diet, and still another found that CBT (Cognitive Behavioral Therapy) was her answer. And at the suggestion of others, I found my help in recorded sessions of clinical hypnotherapy.
What I learned is that each person has to seek out what method of treatment works best for them. Because my way happened to be through the recorded clinical hypnotherapy sessions that were not readily available when I received my first diagnosis, I kept at my search. I kept asking the doctors what the latest research was, or what else could be done. There were periods of time when I did almost give up, but then I would go back and ask the doctors again.
While some physicians are open to complementary methods, others are not, and I have found that most of those I have talked to over the years, even though they are aware of the research, do not really go out of their way to suggest anything they are not intimately or routinely connected to. They may suggest off-label treatment for medications, but that is still within their comfort level. It is not that they are against other methods, but their schedules are so full that it can be hard for them to sort out all the latest research. I have had doctors borrow books from me, take information, and discuss what’s out there—some have even attended “continuing med ed” to learn more.
If you take away anything from my IBS journey, know that there are many ways to feel better. Don’t give up, and keep looking for a doctor you can work easily with. My way to feeling better is the way of many others—but keep in mind that there are new investigations every day, and there may be even more new ways on the horizon.