# Feeling very helpless & frustrated and my GI is NO help! Advice please?



## jhowell28 (Feb 13, 2013)

Sorry this is so long, but I really need some direction, I feel so disheartened.

So here is a short history before I post my rant about my GI appt today:
Gallbladder removed at age 14, "diagnosed" with IBS 4 years later after a normal colonoscopy but was given no direction whatsoever. So I just dealt with it. Over the last 3 years it has just gotten progressively worse and worse to the point where it is controlling my daily life. Pain daily, excessive bowel movements (diarrhea 5x on a good day, 10-15 on a bad day), bloody stools, occasional constipation but when I do get it it's bad - won't have a BM for 5 or so days, EXTREME pain when I use the bathroom (whether it's diarrhea, normal or hard). I also have fevers and joint pain associated with my abdominal issues.

In the past month my GI ordered a CBC (came back normal except for borderline anemia), gluten & lactose intolerance tests (both came back normal) a stool test (which was all normal except for the presence of blood) and a small bowel xray (which came back normal except for a lot of stool). I also had an unremarkable colonoscopy at the end of December.

So here is my rant from my GI appt today:

Just another frustrating, disheartening GI appointment. I feel helpless and like this is never going to end or no doctor is ever going to actually help me. My GI pretty much said "it's IBS, here's some medicine, see ya"

I pretty much went through all those tests for nothing, again, just like I did a few years ago. Everything came back normal except the presence of blood in my stool (which he totally discounted) and my small bowel xray showed lots of stool. He pretty much completely discounted the amount of pain I'm in when I use the restroom because it's "not consistent with an IBS diagnosis" so he basically pretended like I never told him. He also discounted my fevers and joint pain because it's also "not consistent with the IBS diagnosis" so he can't explain why it's happening. So apparently it's just happening because my body wants to, which is a total crock of crap.

I tried Levsin (hyoscyamine) a few years ago and it made me nauseous so he pretty much said there's nothing he can do for me because that's one of the only IBS treatments. He put me on a children's dose of Bentyl (10 mg) and said "we can try this medication, but I doubt it will work since Levsin makes you sick". How uplifting...not. OH and he also made it a point to make a rude comment about my weight. He said, in a rude tone, "For your weight, this is a very low dose so that's another reason it probably won't work." It's a CHILDREN'S DOSE, that is considered low for ANY ADULT. I mean yes, I am overweight, but not extremely. And I have been in the process of losing weight, so that was a low blow to my self esteem. He kept questioning the Levsin making me nauseous saying that it was impossible because it's supposed to make cramps go away, my stomach is just very sensitive to medication in pill form. Then he also made it a point that if this medication doesn't work for me that there's nothing else that can be done for me because no other medication will work. Talk about panic attack when having to think about living like this forever, with no relief.

He said that this medication, "for normal IBS sufferers" (like I'm some sort of anomaly), is supposed to help stop cramping that causes the severe diarrhea. I understand that and yes, that can be a problem for me. But I know the difference between a CRAMP and actual PAIN. What I experience all day every day is PAIN, with cramping right before and after I use the bathroom. But of course, he didn't want to hear that either. He said it's just cramps.

He gave me no other information on diet, what I should & shouldn't eat, probiotics, how to manage my pain since Tylenol provides no relief on my "bad days" or even how to manage my diarrhea since Immodium doesn't do it for me. And he said he doesn't prescribe Lomotil because it's a derivative of a narcotic (not like it worked much better anyway). I even told him in the last month I've had to miss class and work a lot from the pain and not being able to get off the toilet and I might as well have not even said anything because it's not like he took it into account. I sat in his office crying almost the whole time I was in there because I just felt hopeless and he didn't say ANYTHING about me being upset or ask why I was crying. He just said, "having IBS isn't fun".

I just feel so lost and upset. This is literally taking over my life day by day and I feel like no doctor will help me because this is the 2nd time it has happened. I understand IBS is kind of mysterious or whatever, but my God at least give me some direction of what I can do to help myself, some form of pain and diarrhea management or SOMETHING. I cried the whole way home and have been crying off and on all night because of how lost I feel. I have had one bad panic attack in my life and I seriously feel like I'm going to have another one thinking about having to live with this pain all the time. I am honestly very scared and feel like I've been pushed back to square one.


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## jhowell28 (Feb 13, 2013)

I did some research and tried to find a chiropractor or massage therapist in my area that does the Pain Neutralization Technique and I pretty much fell short. Anyone that is familiar with this technique seems to be about 2+ hours away from where I live, unfortunately,


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## BQ (May 22, 2000)

Most often people find a combination of treatments working together is what helps them best. So using just imodium or just an antispasmodic (Like Levsin or Bentyl) may not work. But perhaps using them together while also using Calcium Carbonate supplements and/or relaxation techniques..or other alternative therapies etc.. may help you. So don't give up. Most the time GI's are not much help once a diagnosis is reached. So you have come to the right place!

Go to the forums that seem to best apply to you and your symptoms and read and post any questions you may have. We will do our best to help you.


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## fa110n11 (Mar 7, 2013)

Im sorry to hear that your Dr was so rude. I don't blame you for crying, I would have done the same thing. I found that I am my own best advocate and I can't count solely on my Dr because he doesn't know my body as well as I do. I have experimented with manipulating my diet , probiotics, and fiber pills. None of those helped me. I don't want to take any prescription medication if I can avoid it. Something that i have had great success with is Turmeric. You can get it at any drug store. Its just a curry spice. It stimulates bile production in the liver and gallbladder. It might be worth a shot. Worse case scenario you're in the same boat that you are in now. And at least you don't have to see your nasty dr for it.


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## carlsw (May 7, 2013)

There are bad people among the doctors also...

I hope you get better but it's a rocky ride living with IBS...send me a PM if you'd like some suggestions...


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## Freud (Mar 22, 2012)

Anemia is common in bacterial, fungal and parasite infections of the gut which in turn often leads to IBS. Have you tested for SIBO, parasites or, if other symptoms are present - such as white coating of the tounge, candida?


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## jhowell28 (Feb 13, 2013)

Sorry it took me so long to reply, my email was moving the notification emails from this forum to my spam folder.

Here is an update for me:

My previous GI referred my to a doctor at a university hospital (the University of Michigan, if anyone is familiar) and I am being seen specifically in their Functional Bowel Disorder clinic. I feel so much better there since they are actually up-to-date with IBS treatments and participating in the latest research. Since about the beginning of March, I have been stuck in a severe constipation "phase" I guess you could say. To the point where I am only having BM's (only small, hard & pebble-like almost) every 5-7 days..no where near a full BM. So after having no OTC laxatives or anything work for me, their office battled with my insurance company for a month to get Amitiza approved for me which I started taking last week and hasn't done much for me yet, unfortunately. I had some other testing done and was diagnosed with visceral hypersensitivity and was prescribed a low dose of Effexor to help manage the chronic pain, which helps my abdominal pain but gives me terrible headaches.

This doctor also had me get another hydrogen breath test to test for SIBO, which I did last Friday so I should be getting the results for that soon. Also, even though I am not gluten or lactose intolerant, I have found that keeping gluten, dairy and red meat to a minimum seems to help with gas/bloating/pain but still no constipation relief no matter what I do







I seem to go between the two extremes and rarely have a middle ground. I'm either going 10-15 times a day or I don't go at all, my worst has been 11 days with no BM whatsoever, I was miserable and could barely move.

The Amitiza and Effexor was the first treatment combination my new GI had up his sleeve for me, but he said there's many different things we can try and not to give up hope. I think I have finally found the GI that is right for me after having bad experiences the past few years which is a huge relief! During my first appointment with him, he told me he had just recently returned from an international conference specifically on IBS, which I thought was awesome. It feels good to be a patient of a doctor who is educated on IBS and understands what I'm going through.


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