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Stopped fighting with docs and went to the FDA for help.

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Posted 16 May 2001 - 04:17 PM

This is an update to my post from last year (see below). If your profile is like mine, I thought I would update my progress in hopes of helping. It has been over a year now and I am still healthy with the Amitrip. My doctor renewed my script for another year. I still take the same dose...75mg at night and 50mg during the day. I still have a flare-up when my depo-provera shot wears off, other than that I am functioning without symptoms!Anyway, best of luck to all and prayers for good health.---Original message---I was first diagnosed with IBS at age 17. I am now 30 and have run the course of many different symptoms. I finally gave up on doctors helping me about three years ago and started researching my symptoms on my own. The main thing I noticed is that all my symptoms were progressive. The IBS went from intermittent to full blown D 24/7. I had a big scare about 3 1/2 years ago when I was not able to tolerate any food, and even fluids were making me sick. My moods were getting less and less tolerable but progressed slow enough that it was difficult to recognize as part of the problem. My body became more sensitive to anything and everything until I thought I could just crawl out of my skin. I also was debilitated by my cycles and they progressively got to the point that I would just spend the week in bed from the pain and sickness. I had the full course of diagnostic tests including colonoscopy, endoscopy, gastric emptying scan, ultrasound, MRI, Laparoscopy, tests for bacteria or viruses, and lots of blood work. They all turned up negative which is great except that it left me with no answers. The only medicine my doc was willing to let me use was Bentyl. I was taking 10 to 12 pills at 10 mg per pill a day with no relief. I was surprised that my doc would not let me try anything else since he is with a nationally reputable research hospital with many more options available. Needless to say I was frustrated and went back to a doctor from my home town that came highly recommended by family members that #1 are in the medical field and #2 were understanding and supportive of the fact that I needed better answers. He is an OB-Gyn, and was willing to listen and work WITH me as opposed to just dismissing me and telling me it was in my head and I just needed to manage stress better. He prescribed Lotronex which, like many others, was a godsend. When Lotronex was pulled from the market, I had enough samples that I remained healthy, did my own research and came up with a theory of my own.#1 Lotronex works primarily for women, and #2 it works by blocking the hormone serotonin from your GI tract. Based on all this, why is it that no one was willing to consider a hormone imbalance? I had fought that argument for years, Lotronex provided me with added support for this theory. I spoke with a wonderful person from the FDA who indicated that I was definitely on to something. I was referred to the IBS-Group site and researched a little more with articles from the research forum as well as drugs from the drug listings page. I took the research, questions, and proposed theory to my doc. With all the information I had, and the fact that no other treatment from the medical community was working...he was willing to give my theory a try. I also had the added support of the fact that my biological 1/2 brother was dealing with his own illnesses due to a chemical imbalance, my doc said this type of thing very well could be genetic.I have been on Amitriptyline for 2 months now. Amitrip is the generic for the tri-cyclic anti-depressant Elavil. It lists as one of its affects to slow gastric secretions. I have been off the Lotronex since 2 days after starting the treatment and have had no problems so far.The IBS-D is under control, I had burning and tingling in my hands and feet which is gone, my panick attacks, compulsiveness, and anxiety with depression are gone, no more environmental allergies, I couldn't work out since my legs would itch uncontrollably, this is no longer present. There is an endless amount of symptoms I had that have dissipated with the treatment. I have reached a healthy, comfortable weight for the first time ever...minus a period in college where I was in "remission" with the IBS and gained the not so popular "freshman 15". I firmly believe that I have a chemical imbalance. This imbalance caused my body to produce an excess of adrenaline and cortisol, in turn affecting the serotonin levels. The imbalance also threw off the electrical impulses in the brain causing my whole system to be over-stimulated. My doc agrees that I may be on to something and feels I have found my own solution. Interesting to note, my doc emailed me from a symposium he was attending in Chicago. The topics he mentioned were on IBS, Interstitial Cystitis, and Fibromyalgia. I will find out details on my next visit to his office, but I found it interesting that the number one treatment mentioned by the symposium to be successful was Amitriptyline, he reiterated that I am definitely on to something.Like many of you this illness has cost me many things in my life. Countless days, friends, a relationship with who I feel to this day was my soul-mate, opportunities that were lost due to my being sick etc. etc. I imagine this story is not new to many of you and for now I am just grateful to god that I was given the knowledge and courage to research the problem on my own, force my argument to be heard, and have my theory tested with the medication I believed would help. It seems as though I was right thus far! I was going on 14 years with these problems and I found a solution that appears to be working by hitting on the source of the problem as opposed to masking the symptoms.To anyone who may read this post in hopes of finding relief for their illness: listen to your body, it will tell you what is wrong, trust your judgment and don't let the medical community shoot you down. Keep looking until you find someone who will listen to you and work WITH you. The medical community doesn't always have the answer, there are solutions out there that work on the source of the problem as opposed to just masking the symptoms. The latest research I have read seems to be moving in that direction.I can only pray that the Amitriptyline continues to work. I am finally able to enjoy life, feel balanced, in control, and have a healthy perspective again, something I have not had for years. I hope my story is able to do the same for others.[This message has been edited by danik (edited 05-18-2001).]


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