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I first noticed my IBS when I was 13

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Posted 07 February 2001 - 12:23 AM

I first noticed my IBS (although I didn't know what it was called then or that it wasn't even normal) when I was about 13 in 1980. It first started when I would go to the Mall with friends. I always mad the JCPenny's restroom my first stop and then I would be OK to shop for the afternoon. I never considered that it may not be normal, I just figured it was "just me". Life went on, I went to high school with not many problems and really no classroom disruptions for myself in having to make a bathroom run. I graduated from high school in 1985 and went on to college at UC Irvine. That's when my IBS went from mild to severe. I remember distinctly sitting in class during a lecture ( it was a small class that I couldn't leave discreetly) and having cramps so painful that I very nearly passed out. I fought to stay conscious and not let on to my fellow students that I was fighting this until class let out about 20 minutes later. I struggled to get to a bathroom, trying not to walk completely hunched over and just made it. I was completely emotionally and physically spent for the rest of the day. I would have episodes like that off and on for the next 2 years or so- always when I wasn't near a bathroom, like in the car or some place like that. I had to make "potty stops" every so often when I just couldn't control the cramping anymore. I also learned where ALL the restrooms were on campus and it just became part of normal life for me. I still didn't feel very well alot of the time and so my doctor ordered a glucose tolerance test- which was just barely normal. I was told they called it Imitation Hypoglycemia and to treat myself as if I had it even though I was 2 points above normal.My IBSwas still roaring along and I didn't learn that there was a name for my problem and that it wasn't normal until about 1987 or so. That's when I took myself to the proctologist to get checked. It was a less than glorious exam and he recommended that I take Metamucil daily. That really helped with the D and the overall pain but it pretty much just took my symptoms to a dull roar instead of an overwhelming thing. But I was happy for the improvement it gave me. After a few months, I experienced more pain on eating and severe fatigue. I went to my college PCP, took a barium x-ray and we found an ulcer and that I was also lactose intolerant now. I took Tagamet and was able to control it fairly well. Then, I transferred to UC Riverside and graduated in 1990 with a BA in sociology. I was much more comfortable with my fiber regimen by this point , the ulcer was healed and while I still knew where all the restrooms were on campus, I didn't have to fight that cramping, lose consciousness type of pain anymore.I got married in September of 1990 to a wonderful guy, Todd, who understood my need to make sure I knew where all the restrooms were. He got used to me having to make a "right now" potty stop at the grocery store, movies, Costco, church and pretty much everywhere we went.Our oldest daughter was born in December 1991 and my IBS was still a problem in my pregnancy. In fact, it got worse in my last trimester as she grew bigger and put pressure on all my "innards". My PCP was also my OB/GYN and he officially told me what I already knew- that I have IBS. After the birth, my IBS went back to a dull roar and I was happy with that.Then, in December 1992, I started getting sick with what I thought was the flu. After 4 weeks, it didn't go away and I got myself to my PCP. He assured me we would get to the bottom of my symptoms which included fever, weight loss, lower right quadrant pain, severe diarrhea at all times of the day and night and generally feeling yucky. At that time, my childhood best friend and my daughter's Godmother passed away unexpectedly. After that, my health took a major turn for the worse. My PCP kept telling me I was just depressed over my friend and I kept telling him that I was sick BEFORE she died. He sent me to a GI to check out Crohn's disease as my sister and two cousins have this as well. The GI told me he saw signs of a mild ileitis (inflammation) but none of the tell tale signs of Crohn's. What I had was indicative of, but not diagnostic of, Crohn's. He also found lots of swelling in my terminal ileum and lots of cell changes that indicated an allergic reaction, although we didn't know that part of it then. I only discovered that when I got my records later to take with me to UCLA. So then I went on Asacol which did help the lower right quad pain but not the fatigue or the fever that peaked at 103 that I had had for four months. I was bedridden at this point and needed help from my parents and in-laws to take care of my toddler daughter. It was horrible to say the least. I also developed major joint pain at this point. My PCP diagnosed CFIDS and put me on Prozac for the fatigue which did help- but I felt he was belittling me by this time even though he took me a little more seriously when my ulcer flared again which responded to more Tagamet.So I changed doctors, went to a chiropractor and started in on a 1 1/2 year remission. I felt the chiro realy changed my life and while I still didn't understand what had happened to me, I was just glad it seemed to be gone. I had to really pace myself and take naps in the afternoon, but I pretty much had my life back.We decided to have another child during my remission (which we thought was permanent) and our son was born in August 1996. I still had severe IBS in the third trimester but I knew to expect it and it somehow didn't seem as bad. We moved to Reno, Nevada in December 1996 and I made sure to find a good chiropractor! In the Spring 1997, we discovered that I was pregnant again- a wonderful surprise! During this pregnancy, I came out of remission and got the lower right quad pain back, the severe D, fatigue and joint pain. I was so discouraged and upset- especially at how my first doctor treated me- that I decided I would just "ride it out" whatever that meant. I confided in a few close friends, including my best friend's mom, and she made me promise I would get to the bottom of it this time. I delivered my daughter in December 1997 and after her birth, when I was still not well, I kept my promise. I went to my new PCP and he sent me to a local GI who was no help at all. By this time, I also was getting rashes when I would get the D and the severe lower right quad pain. It helped that there was now something they could see and quantify. That GI did another scope and found while my colon looked fine, no Crohn's, that I had severeblunting in my small intestine which could indicate Celiac Sprue and also explained my lactose intolerance. He sent me back to my PCP who was pretty angry that he left me hanging with the possible Sprue diagnosis, which is a very serious thing, without doing the tests for them. He did them himself and they came back negative. I did have a flare up of my ulcer again too- more Tagamet. But by this time, I was patrolling the internet, looking for answers. I started acupuncture and Chinese medicine at this point as one more avenue to pursue. It helped but was not the cure all. So, I went to another GI who pretty much told me that I did have severe IBS and something else that "looked like Crohn's, acted like Crohn's, felt like Crohn's ...but wasn't". He called an expert diagnostician at UC Davis Medical School who was stumped as well. He sent me to a dermatologist to biopsy the rashes I was getting and they were deemed to be "leukocytoclastic vasculitis" which is common in any autoimmune disease. So I went to an allergist who felt I was beyond his abilities in the general but that he could help my hay fever! I had decided to go to UCLA now and the allergist strongly encouraged it. Last stop before UCLA, a local rheumetologist who examined me for some autoimmunities and declared me free of disease- but a puzzle as I was obviously sick. So off to UCLA I went. First stop, the GI department. They looked over ALL my records and felt that while I have severe IBS, I needed to be seen by the rheumetologists there to discover the "something else" that plagued me. I went to the rheumys there, was looked over from head to toe, took more blood (I have track marks nowfrom all the blood tests I have had!) and was finally told the "something else"- Fibromyalgia. The rheumy there felt that it still didn't explain ALL my GI stuff but that I definitely tested positive for it.Now I had something to research!! I found Dr. Jay Goldstein, a premier name in the FM/CFIDS community and went to him. He is only a few miles from where I grew up in CA and so I stayed with my parents when I saw him. I went in three times and was given different meds each time. It was a major success and I felt really pretty good as long as I took my meds. I had to go back each time I developed a tolerance to those meds- which is what brought me back each time. I was happily taking my 20 meds per day, feeling well- more or less, but still struggling with the IBS. He gave me Lotronex samples which I was leery of taking as it was so new to market, so I kept them on my shelf, "just in case". I went to another rheumy who did a few more blood tests, confirmed my fibromyalgia diagnosis and put me on physical therapy to help. It did help along with the meds and I was cruising along, figuring I was on meds for life, OK with that and learning to adjust to life with chronic illness.Then, the LEAP Program found me on my job as Digestive Conditions Community Leader in the form of MikeNL. I was still struggling with my IBS and some of the GI stuff, including the lower right quad pain so I checked it out, found it was legitimate, and decided it was one more avenue to pursue and might even help with the rest of my GI puzzle. The science is that IBS and someother illnesses like Fibromyalgia, are the result of delayed food allergies. LEAP had developed a new blood test to find these hidden aggravators.I took the blood test, the home phlebotomist FedEx'd the sample to Florida and in the ultimate birthday gift- the results in the lab were done on August 1, 2000: my 33rd birthday. I got the pack with all the info a few days later and started the program immediately. I had been told to expect to feel worse on the program at first as my body was cleansing all that gunk out of my system- and boy, did I! It was awful! But I kept telling myself that it was good, that my body was reacting as it should to this new regimen. After a few days, the pain eased and I started to feel better! The joint pain was disappearing, the lower right quad pain was going away and I just generally felt better! The IBS was even diminishing! I decided to test it and reduce my meds slowly to see what happened. By Day 30, I was pain free, IBS free and off all but 3 or so of my meds. By Day 45, I was off ALL meds and feeling better than I ever had in my entire life!! I went to my PCP to show him the incredible results. He had read about LEAP in a journal and was really excited to see how well I was doing and how this program affected me and my life! He took photocopies of my report to refer more patients and was thrilled to know that progress was being made in this area of medicine.I am now approaching the 6 month mark on LEAP and I DO NOT miss any of my reactive foods as I know they are poison to me and I would not trade my hard fought for health for anything! And some of those foods include wheat (nomore bread, cookies, cakes, bagels, ect.), chocolate, tea, cherries and pears. Not easy to avoid, but well worth it. There have been a handful of occasions where I ate something I was reactive to and didn't realize it until afterwards and I got SOOOO sick. IBS and fibromyalgia came back with a vengeance for a few days until my body healed again.This has been the answer to all my hard work, dilligence and prayers and I am so grateful that some doctors believe us as patients when we say we hurt and have no life. I am looking forward to living the rest of my life as pain free as the first half was painful,Lisa from Nevada(Lisa Schultz)


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