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Irritable Bowel Syndrome
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Posted 12/7/2006 7:32 PM (GMT 0)
I've been reading this message forum for quite some time - often in tears - and have taken such comfort in the many stories I've read. I finally decided I wanted to join the discussion and tell my story. about 3 months ago, I came down with what I thought was a terrible stomach flu - nausea, diarrhea, fever, etc. Unfortunately, it would appear to be gone and then come back again in full force. My PCP put me on 5 days of cipro. I think I felt quite a bit better for a week or so, then it all came back full force! I later learnedd 5 days of Cipro is not a full course for something like this. I've been to a GI who performed an EGD and colonoscopy, took various cultures and samples. All were negative. However, the GI informed me these results may have been confounded since I was on flagyl at the time of the EGD and was on zithromax at the time of the colonoscopy. He had placed me on zithromax in case I had a cipro-resitant salmonella. Sorrry to be going on so long, but my history is long and complicated. I should also mention I had a abdomiinal and pelvic CT scan and an abdominal ultrasound - both negative. Everythiing is negetavie, yet I'm still so sick! The symptoms I still have are episodic nausea, light/yellowish stools, sev dyspepsi, occasional chills. I was my GI again yesterday. He put me on flagyl and levoquin for possible Small Intestiine bacteral overgrowth (SIBO) and ordered a HIDA scan. I had asked him about this test after reading about it on this forum. I'll be having the scan next week. I'm also on aciphex 2x/day after he took me off of it 5 weeks ago saying my EGD showed no evidence of GERD. Let me tell you, I sure have symptoms of GERD including food sticking in my throat at times. Any insights or words of encouragement and support would be greatly appreciated. I spend much of my time cryiing when not working. I'm not working 3 mornings a week. I often have a very hard time getting though these mornings, but my work actually is keeping me sane. I'm very scared - not that I have a deadly illlness but that this will coontinue to go on and on with no answers. My head is swimming with questions and concerns. My GI said this could be a post-infectious irritable bowel syndrome. Sorry again for the extreme length of this posting. One thing I forgot to mention was that one of the biopsies taken during the colonoscopy showed an intestinal infection (I think it was an increase in leukocytes or lymphocytes). The GI felt it was a viral infection since all my stool sample and colonoscopy culures were negative fore bacterial infection. I should also mention, that over the past few weeks, I've had some really good days without nausea, with normal colored stools - not light/yellowish - and with little upper abdomiinal discomfort. But then relapses of nausea, light stoos, and significant upper abdominal discomfort - much like dyspepsia. My stools are frequent many days but well-formed. Sorry ramble on so long. Any advice and especially words of comfort ant suuport would be greatly appreciated. My life feels very bad right now because of all of this.
Posted 12/9/2006 1:09 AM (GMT 0)

Hello BethEllen and welcome...sorry to hear you are suffering like this!  Your story sounds very similar to mine.  This might be long-winded, but I hope it gives you a little hope and maybe some suggestions...

When I lived in Africa five years ago, I came down with violent diarrhea, vomiting, and high fevers every two weeks for MONTHS.  It was absolute hell on earth!  When I got back to the U.S. and had a colonoscopy and EGD done, they said everything looked clear.  I had megadoses of IV Flagyl/Cipro and anti-malarials for several days and did get better...for a while. 

But.  I proceeded to get sick with diarrhea and fevers for the next five years on an intermittent basis.  It was tolerable enough to pass off as the stomach flu, generally, as it would only last a week or so each time.  But two years ago I began dropping weight at an alarming rate (went from 175 to 145 in something like three months), was having diarrhea 30x a day - consistently - with blood and leukocytes in my stools, fevers up to 103, and crazy abdominal pain.  I missed so much work I had to go on medical leave.  I went to my primary care doc, who ordered me to see a GI, who ordered me to see an infectious disease specialist, who ordered me to go to the Mayo Clinic to see another GI and ID specialist.  It was insane (just ask the ladies on this board; I "met" them around that time!). 

I got NO answer whatsoever, not even from Mayo, where I continued being sick and they saw it firsthand.  They were flabbergasted.  They couldn't find a parasite.  They couldn't find any evidence of inflammatory bowel disease from my scopes.  Nada!  I left Minnesota in tears!  I came back home and honestly lived on Tylenol and Imodium for approximately another year.  I tried to mask the symptoms as best I could.

I started seeing a nurse practitioner about a year ago, and she said, "Why haven't they just treated you for parasites, even if they can't see them?" So, she put me on a 10-day regimen of Flagyl and Cipro (it was a rough 10 days; that combo can make you feel pretty ill).  My symptoms cleared up for something like 2 months.  It was AMAZING.  Two months later, the symptoms came back.  She put me on Flagyl and Cipro again, another 10-day course. 

That last course was 3-4 months ago.  And I swear I have never felt better since the day I left for Africa more than five years ago. 

I'm going to medical school next year and have some experience in parasitology, some of which I studied in college - parasites are notoriously difficult to track down.  They ask you for a stool sample to find them, but they don't really understand (especially in the U.S.) that you often need more than three samples to have even a remotely good chance of finding the parasite, which only sheds its eggs intermittently in stools.

I would suggest, if you don't get another answer, go back to your doctor and ask about a 10-day Flagyl/Cipro combo.  This is ESPECIALLY if you have done any international travel within the past couple of years. 

Posted 12/9/2006 1:23 AM (GMT 0)
Hi, Sarita. Thank you sooooo much for that thoughtful reply. I am now on a 14 day course of flagyl and Levoquin. I'm hoping that will do the trick. You know, I've not been out of the country, so I'm not sure if I would have contracted somethiing like you had, but if I somehow did, I'm hoping these 2 antibiodics will do the trick - finally! I can't even imagine how you withstood all those years of suffering the way you did. I'm sure you'll make a wonderful doctor who will have a lot of empathy for patients dealing with longterm, unexplainable illnesses.
Posted 12/9/2006 5:42 AM (GMT 0)
I have found it I know what is wrong I can handle things. It is the not knowing that makes my emotions go all nuts and then the DRs say you have a lot of anxiety and are very emotional. Well, duh, yes I am, Doc and how do you feel today and do you worry about how you will feel tomorrow and if you will be able to do the things that "normal" people can do just to get by. Hang in there and chances are it will get resolved and I guess we have to be glad it isn't a fatal problem though sometimes I almost wished it was as I didn't care if I died or not.
Posted 12/9/2006 7:08 PM (GMT 0)
Wow, your response has me in tears. That's exactly how I feel. I wake up in the mornng wishng I hadn't woken up, because I immediately feel nauseated and ill and realize I have to face another day of this. I hope this will end eventually. Thank you for understanding. It's so comforting knowing I'm not alone and that there are others who completely understand.
Posted 12/9/2006 9:41 PM (GMT 0)
BethEllen, I remember the Flagyl making me extremely nauseous especially, which may be contributing to how you're feeling today.  Check your prescription hand-outs and read the directions about taking each of your two medications...I think one of them should be taken on an empty stomach and the other should be taken with food (isn't that convenient?).  Also, drinking ginger tea can settle your stomach a bit.  If you have nausea very frequently or if it's really bothering you during this course of meds, ask your doc about a script for an anti-emetic like Zofran (somewhat expensive but super-effective) or Phenergen.  It helped me get through the regimens much easier!

Posted 12/9/2006 10:16 PM (GMT 0)
Thanks Sarita. I actually just took kytril, an anti-nausea pill given to those undergoing chemotherapy. Maybe this will give me some relief. I think you're right. The flagyl definitely is increasing the nausea I already have. Thanks again for the information.
Posted 12/9/2006 11:03 PM (GMT 0)
Ginger capsules will help with nausea, so do even ginger cookies like ginger snaps and there are no side effects like with the pills which can often make you sleepy or dry you our.
Posted 12/10/2006 12:04 AM (GMT 0)
Thanks for the tip. I could use the calories from the ginger snaps as well.
Posted 12/31/2006 3:06 AM (GMT 0)

Hi BethEllen,

I've been reading some of the postings in this chat room looking for someone who has a similar story to mine and you are it.  I just posted my "story" today under "recent IBS diagnosis".  My GI also feels that my IBS is a results of a severe intestional virus.  At first I was very sick for two almost three weeks and scared.  Then I'd have a half day or full day when I felt like I was getting better but would end up feeling lousy again for days.  I lost 10 pounds in two weeks, had little to no appetite, was very depressed, had a low-grade fever on and off for 6 weeks, frequent diarrhea, lots of anxiety and many of the other symptoms you mentioned. had ct scan, colonoscopy, endoscopy, blood tests, stool test all negative.  The antibiotics didn't help me, I was also on Cipro and Flagyl, actually, I think they made my situation worse. They are very strong Antibiotics.  I have been on hyoscyamine for almost two weeks now (on and off) and have been feeling much better.  I also am taking an acidophilus.  You might want to try the hyoscyamine if your current meds don't work.  I'm in my 10th week of this.  I still have a strange feeling in my upper intestines that goes through to my back, but i do feel as if I'm getting better (I hope!).  Good luck to you. 

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