New to the Board & Confused.....
#321386 - 12/31/07 01:52 PM
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EKD
Reged: 12/31/07
Posts: 4
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Hi! I have been reading the boards for quite sometime now and felt i really needed to post my story. I apologize if this is long 
I am 36 years old, married with 1 daughter and two step-sons. I work full time at a job that is 1 hour away from home. I was originally diagnosed with IBS-D when i was in college. I always knew if i ate certain foods or was put in a stressful situation my stomach would react. It usually would be cramps and diarrhea for about an hour and then it would go away. I was able to control my symptoms by avoiding the foods and trying to remain calm in stressful situations with maybe 1 or 2 flare ups a year. I also have a history of Pelvic Adhesions and i had a complete hysterectomy 2 years ago.
Starting in July of this year, i became very sick. Severe abdominal pain, nausea, diarrhea, weight loss and fever. Doctor diagnosed me with a bladder infection. After antibiotics didn't help they said it wasn't a bladder infection after all and maybe it was an ulcer. They put me on Previd which did help for the nausea but nothing else. Did all the blood work with nothing found. Finally, they referred me to a GI specialist who performed a Colonoscopy/Endoscopy. The GI specialist told me nothing was found, no celiac, no Crohn's, no Colitis just a bad case of IBS. She then put me on Previcid, Bentyl and Librax and told me to come back in two weeks for my follow up. At this point i also started to follow Heather's IBS Diet.
The meds did not help much and when i went back for my follow up she told me it wasn't IBS and that it was Microscopic Colitis which came back from my colonoscopy biopsy and she took me off the Bentyl and put me on Asacol and said to come back in a month.
The Asacol did help some but not 100%. I kept a food diary and noted when i had my worst episodes of symptoms. When i went back and showed her the diary she said 'oh, well that isn't colitis, that is IBS, stop taking the Asacol and go back on Bentyl.' Within 2 days of going back on Bentyl and off the Asacol i went right back into terrible symptoms so i put myself back on the Asacol and called my Primary Care. She set up an Abdominal CT scan. That came back with a 'large ovarian cyst' (I still have my ovaries) and had me go for an Ultrasound. Still have cyst on my ovaries so she feels this is my actual problem and sends me to my GYN. GYN says no, cyst is fine and would not cause these problems and i should go back to my GI specialist. At this poing i get so frustrated i look for the best GI specialist in our area which happens to be at Dartmouth Hitchcock. I have an appointment with this doctor who is convinced i have Crohn's and that my symptoms are 'not IBS, especially where it doesnt follow my normal IBS symptoms and have a lot of weight loss'. He schedules me for a Capsule Endoscopy. For once i have hope that i can be given a true diagnosis and be able to move on with treatment.
He calls me back last week with the results...NOTHING FOUND, its severe IBS. He then puts me on Levsin, which is not doing much other than dry my mouth out and make my vision a bit blurry (i work on computers all day so that doesnt help much).
I am so frustrated and confused. Why all of a sudden would my IBS flare up so badly, last so long (6 months continuously) and not be my usual symptoms? I have had nothing stressfull occur, no travel, etc. Just hit out of nowhere. Also, why would the Asacol seem to be helping me the most, yet that is not an IBS drug and the IBS drugs are doing pretty much nothing? I have lost over 20 lbs since July just because i am unable to keep anything in my stomach. Its embarrasing to miss work and i feel like i am not myself in any way shape or form to my husband and daughter.
Sorry i am rambling, i have just cried so many times over this and wished i could find something to help this pain go away and go back to my normal life again. Any suggestions would be helpful and thank you for listening to me.
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I am so sorry you have had to endure all this. I have been through the medical run around several times myself and know how frustrating it is.
I must admit I am not familiar with the drug asacol. Maybe try posting in the chrons section of this board to see if they can help you more. They thought I had chrons at one time but after testing decided I didn't. Have you had blood work sent to the prometheus lab in california for the chrons testing. Here is there web site http://www.prometheuspatients.com/. Your dr can draw the blood and send it there and they will tell you the probablity of you having chrons. Mine was 86% chance of NOT having it.
It is possible to have such a bad flare up of IBS but it also sounds like there is some question as to if that is all of your problem.
Sometimes when we endure such pain for a long time, we need to do something to break that pain cycle. Maybe talk to your doctor about either giving you some pain meds, which will also help with the D as they tend to cause C! Or, every once in a while, when I got real bad, I had a doctor that would give me a shot of demerol and a shot of muscle relaxer at the same time. I would go home and sleep for a day but usually found that it would break the pain cycle and give me some relief. Its not an answer but it may give you a break.
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Taking it one day at a time.....
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I'll bring the kleenex box and cry with you. Like you and many others on the board, I've been on the medical merry-go-round several times. It is frustrating. I often wonder what did these docs learn in medical school, residency and years of practice? It seems like if you can't see it, it doesn't exist. Or even better, if you can't see it on a lab test, it doesn't exist. Or if you see something on a lab test that may indicate something, refer the patient to someone else.
My only suggestion is to try to manage your anxiety level. I know mine escalates with this type of frustration. It then exacerbates my symptoms. Also I don't think I present as well to the doctor when I am feeling so tense and frustrated and in pain. As Michelle said, it is good to break the pain cycle for awhile.
These boards are a blessing as I don't feel like I am just a nut case when the doctor tells me nothing shows up. I know the pain and disfunction I am experiencing is real, that others experience it too and there is support and understanding.
Susie
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Thank you for the kind words, it is nice (not that feeling this way is nice) to know there are others out there suffering the same way i am and also not getting many answers or finding much relief. Luckily my family is very supportive which has been a great help, but i can't help feel guilty that i drain so much of their energy with my symptoms.
The Levsin did not work at all so i stopped taking it and started back on the Asacol (Crohns/UC drug) and yet again, it is helping me. I guess i don't get why that works for me yet all tests point to no for IBD?
I have made an appointment with a new female GI specialist at Beth Israel in Boston. I am hopeful because she was highly recommended and she specializes in IBS, IBD, Cealic Disease and Womens Health. I go in two weeks, until then i guess i will stick to Heather's diet, my Asacol and Immodium by my side.
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Good Choice! I didn't want to say anything about getting that cyst also rechecked as you seemed to have so much going with the tummy issues. A female GI will also consider that. And I hear Beth Israel is wonderful. My sister lived in Boston many years ago and they diagnosed her fibromyalgia long before anyone anywhere else even heard of it.
Meanwhile give your supportive family a great big hug and tell them how much you appreciate their support. Then kick that guilt ball out of the playing field.
Susie
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