New User that could use some help
#297746 - 01/23/07 01:30 PM
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krasj
Reged: 01/23/07
Posts: 31
Loc: New Hampshire, USA
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I am new to the whole IBS world and was wondering if anyone could give me some guidance. I have had all of the usual tests (colonoscopy, endoscopy, etc) and I have had my gallbladder removed nearly 5 months ago. Currently I am experiencing the following symptoms: occasional upset stomach, acid reflux, nausea, lightheadedness, and joint pain. My doctors are confused because I don't fit the normal IBS criteria as I do not have bad stomach cramps followed my diahrea. I go to the bathroom 1 time/day, every day. At the most two times a day. It is usually loose but rarely diahrea. I am currently on a very bland diet where I eat organic plain chicken, organic apple sauce, french bread, and not much else. Yet the symptoms are still bad. I don't seem to fit the IBS criteria but can't seem to get my doctor's off of that path. Any guidance would be helpful.
Some other interesting points of info: I have lost 45lbs over the last year (I was 215lbs, now 170lbs and I am 6'2). I was a little over weight but not that bad. The other strange thing is that my sisters have had similar problems after their surgeries. My doctors found it bizarre for a family of three kids to all have sever IBS. Any thoughts are welcome as those that have lived with the problem understand it better then those that haven't.
Edited by krasj (01/23/07 06:47 PM)
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Well, IBS is different for everyone. There are general guidelines for symptoms but, mostly, IBS is diagnosed when all other possibilities are ruled out. Light-headedness and joint pain don't sound like IBS to me. But the upset stomach/nausea fall right in line w/ IBS. If you're not happy with how your doc(s) is treating you, go to a new one. Sometimes a fresh perspective can come in very useful.
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Thank you for your reply. The doctors have tried me on so many medications over the past 1.5 years that it is tough to remember what normal feels like. I am currently going to try to go medicine free to see if some of my problems are side effects for the drugs. The only thing that concerns me is that I am unable to even handle a diet that is as bland as plain baked, organic chicken. If I can't handle that, what can I handle!
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If you're not dead, you've still got time.
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You said your joints hurt, have you been tested for auto-immune diseases, such as lupus or rheumatoid arthritis?
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Taking it one day at a time.....
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No. Unfortunately my doctors are at the point where they are so certain that it is IBS that they are not looking at other possibilities. I am not sure what it is but I have to have faith that they know more then I do. Some things simply just don't seem to fit, but I am new to this and simply don't know. Today things got weird again as my stool is now bright yellow. I am not on any medications so I am not sure what is causing this.
Thank you for your post.
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What area of NH are you from? Just curious about which gastro doc you are seeing. The one I saw were extremely unhelpful. He was in Derry.
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Michelle
IBS-A, pain predominant
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I saw Dr. Roalsvig initially. He seemed like he was a competent Dr. but he seemed so disinterested in me and my problem it was frustrating. He put me on Reglan for nearly a year which seemed to make everything worse. Now I am seeing Dr. Chow at the Lahey Clinic in Peaboday Ma.
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Yes - I saw Dr. Roalsvig as well. He had me try a few different meds - none of which helped substantially. He would not perform a colonoscopy - he said I was too young. And he definitely did not seem interested in me and what my issues were. After about a year of seeing him regularly with no improvement, he told me that there wasn't anything else he could do for me, but that I should call him if I needed anything. Yeah - right.
I have my symptoms under control now, but if I ever need to go back to a gastro I am going to consider going into Boston for it.
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Michelle
IBS-A, pain predominant
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Can I ask what you did to get your symptoms under control? I am really struggling. My diet is very bland, nothing but chicken and haddock and all I drink is water and I still am miserable.
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Joint pain is not a symptom of IBS. The yellow stool thing is a bit shocking but I get that as well. I think its from the bile in our systems. I typically get it though after I have had diarrhea for a while.
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Taking it one day at a time.....
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Quote:
I am not sure what it is but I have to have faith that they know more then I do.
No, you don't. If your doctors aren't willing to at least consider another option that your symptoms fall under and that hasn't been ruled out, get a new doctor. Unfortunately in our society, we often have to be our own advocates for health care and treatment.
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If you're not dead, you've still got time.
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I followed Heather's diet VERY strictly for about a year. It took a long time, but I was finally able to get through a day without feeling like crap. I also took an antidepressant that Roalsvig had prescribed for about 2 years - I really don't know if that helped or not, but I no longer take it and I seem to be doing ok. And the acacia fiber helped a lot too - I still take that daily. The only med I am still on is an anti-spasmodic - and I don't take it regularly, only when I need it.
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Michelle
IBS-A, pain predominant
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You are right. I just have trouble going from doctor to doctor because I feel as if they are looking at me as being some type of hypocondriac. Reading the various posts on this site help as I don't know anyone else that has my problems. I am also frustrated because some of the books I have read disagree on what you should eat.... it is all very confusing to say the least.
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I wasn't able to handle the anti-depressants that he prescribed. They gave me horrible headaches and constipation. The anti-spasm drugs didn't work for me either. He tried a whole bunch of drugs. He also tried one of the newer techniquest being discussed where he put me on a antibiotic that is now being used with some success for IBS. This is what concerns me. All of these IBS drugs, did nothing for me.... so do I really have IBS?
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Well all the drugs he put you on are not IBS drugs. They are drugs that treat other problems that have sometimes shown to be useful in helping with IBS symptoms. I had to try quite a few anti-d and anti-spas meds before I found ones that gave me little side effects and actually helped.
What antibiotic did he give you? I find this wierd seeing that antibiotics often wreak havoc on us IBS-ers.
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Michelle
IBS-A, pain predominant
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rifaximin
My expereince with Roalsvig was that I felt like he was just going through a checklist and not really listening to the symptoms. Perhaps this works for most cases.
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I have found so many contradicting opinions from person to person, from doc to doc, from book to book. The only "right" answer is the one that works for you.
Don't worry about what the doctors think of you, or anyone else for that matter. What's most important is your health. And if you need to go through a dozen docs to find one who will work with you, there's nothing wrong with that.
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If you're not dead, you've still got time.
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I tried taking the very minimum amount and felt very sick the next day. I am not sure if it was the acacia or not.
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Hi, I'm also new here and having a tough time with my dx of IBS. My first doc blew me off just after Xmas and was also disinterested and, evidently, bored with me. Surprising since he's the one that found my ovarian tumor last year....but that's another story. I'm seeing a new Gastro who has prescribed Zelnorm which at first made me horribly sick, but now I'm cutting a 6mg in half and taking 3mg in the am and 3mg in the pm. Seems to be helping some. Still extremely bloated and as I keep saying to all these doctors 'I can feel my bowel' and it's never empty. This new guy thinks I may have 'Small Intestine Bacterial Overgrowth' and has prescribed Rifaximin which, of course, isn't automatically covered by my ins co so I have to get it pre-approved...also the Zelnorm. Do these ins companies think we're doing this for the fun of it? Sorry...ranting...I'm just so tired and frustrated and miserable.
Anyway, from what I'm reading this 'SIBO' may be caused by adhesions from prior abdominal surgeries and I have had 3, most recently Feb '06 for ovarian cancer, hysterectomy, the works. Has anyone else heard of this or been diagnosed with it?
Thanks everyone....reading your stories is helping me cope.
Edited by Pokemomma (01/31/07 06:49 PM)
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I had problems with my insurance company with the Rifaximin as well. Thankfully my doctor was able to give me enough sample packs for ten days of treatment. You may want to ask your doctor if he has any sample packs that you can have because of the problems with your insurance company. The worst thing that can happen is that they can say "no".
The adhesions has always been a concern of mine. I am unsure how thye can detect these with 100% certainty. My doctor has told me that an upper and lower GI should show any blockages during the X-rays. She admitted that this would only be if the adhesion was constant. I think that the only way to completely rule the problem out is through an Endoscopy of colonoscopy (depending on where your surgery was!). Not a fun path and most doctors prefer not to complete one of these tests unless absolutely necessary (again, most likely because of ins companies).
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