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Bacterial Overgrowth - what to do next?

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Posted 5/22/2013 11:42 PM (GMT 0)
I had a Hydrogen Breath Test on Friday and tested positive for small intestinal bacterial overgrowth.  My doctor called me Monday morning, but I missed his call and decided to wait until my appointment tomorrow to discuss the results (I have been super busy with work and it is always phone tag with him).  I know he will treat it with antibiotics, but I am wondering what the chances are it will just come back?  The cause is the dilation I have in my small itestine that is not going away (about 4 MR Enterographies in the past 2 years show the same dilation in the same place to varying degrees).  I have met with a surgeon twice in the past 2 years for possible strictureplasty, but both times have decided to hold off in hopes that more aggressive medicinal treatment would help.  We are not sure if the dilation is from inflammation or scar tissue.

Currently, I am on 5 mg/kg of Remicade.  My GI is very conservative and relucatant to increase the dosage, which I can appreciate, but I am ready to get more aggressive and see if an increase in Remicade helps.  I am already getting it every 4 weeks.  I am also on Entocort, which has been slightly helpful.  Do you think it's time for a new GI?  This is like a break-up.  I have always been bad at breaking up with people, it takes me like a year to decide.  My husband is pushing for a younger more aggressive doctor, and this is hard for me because I feel like I have a good relationship with my current doctor, he's just too conservative and SLOW at making decisions regarding my health.  He wants tests, and more tests, rule out this, try this first, blah blah blah.

What would you do?  Everyone in my family (who does not have Crohn's or a chronic illness) say get a new GI, but I feel you guys will also understand better how important a good relationship is with you doctor, especially when we're seeing them so often.  And he has kept me out of the hospital and out of surgery many times in the past, I feel like I owe him my loyalty.

Posted 5/23/2013 5:28 AM (GMT 0)
Hi, if you are not happy with your GI doctor. Then I would consider
finding a new one. If I am not happy with a doctor. I don't hesit
to find a new doctor.
Posted 5/23/2013 12:31 PM (GMT 0)
I don't think you need to switch docs. When you go for your appointment, tell him you want to get a second opinion from another GI. It is a very acceptable thing to do (I'm assuming you are in the US?) Your doc may even value having someone else to look at your case. The fact the he didn't just call in antibiotics but wants to see you reflects that he knows your case is complicated. Hang in there.
Posted 5/24/2013 12:19 PM (GMT 0)
Hi Myrne

I can empathize with you. Our relationship with our docs is really important and not something to throw away lightly.

Some docs are bottoms up (start with the lightest drugs and hope that solves the issue. If it does not there are stronger drugs still left to try). Others are tops down. (Bring out the big guns right from the start to stop the damage in it's tracks.) One thing you have to decide is which are you most comfortable with. I am a bottoms up guy, so I like your docs approach, but others would disagree. There is no right answer on this one, just the one you feel most comfortable with. I agree with gumby I would get a second opinion before I dumped the doc, but again I am bottoms up, so I can relate to going slow and getting lots of tests.

I would want to see my test results. Did you have the classic double hook SIBO pattern, or the straight up fructose malabsorption? This is often misdiagnosed. If you have the classic SIBO pattern I am not sure why he did not call in the antibiotic. Also if you have SIBO you should consider doing the Low FodMap diet. It has been proven to be very effective to treat and prevent SIBO.

As per reoccurrence. I do not know the impact of the dilation, but I would very much try to up my odds by doing Low FodMap. BTW - Low FodMap has been proven to help with CD symptoms also.

Healing thoughts

dave
Posted 5/25/2013 1:08 AM (GMT 0)
Thank you for your replies.  I met with him Thursday and he has started me on Xifaxan.  Dave - He didn't really go into specifics about the breath test.  He did briefly show me a graph of the hydrogen levels and as far as I can remember it looked like the numbers were increasing linearly, but I'm not 100% on that.  I started the Xifaxan yesterday and already today notice less bloating and gas, it's amazing really.

My doctor is definitely one who approaches Crohn's from the bottom up.  I was on 6MP for years before moving to Humira.  I originally agreed with his approach, but once I got on Humira I immediately went into a 3 year remission and wished I started the stuff years before.  The Humira stopped working after giving birth so I switched to Remicade which hasn't been as successful.  Since I know I can feel better on medicine, I am reluctant to jump to surgery.

We have a good relationship and I can usually ask for specific medications and he will give them to me (Entocort, Flagyl, Tramadol), but he refuses to give prednisone while on Remicade or increase my Remicade without trying a million other things first because he is so cautious about lowering my immune system too much.  I hate prednisone, but I miss having that as a go-to when I'm really feeling crummy.

I will probably do what you all suggested and get a 2nd opinion.  Now I just have to fine another doctor . . .

Posted 5/25/2013 1:21 PM (GMT 0)
And do not forget to look at Low FodMap. It will help to heal and prevent further episodes of SIBO.

SIBO can be a real bear. Tough to get rid of. Many if not most folks have to go through more than one round of Xifaxan. I have the links on my other puter, but there is a great article on medpub, the best research site I can find, on this subject. Also look at Low FodMap studies and SIBO treatment studies.

I did, sent the research to my doc, and we could discuss the diagnosis process and treatment plan, much more as equals

The other thought is, have you looked into LDN. Many folks swear by it and there is some recently published research that shows it to be a very effective, low side effects (virtually none) , Crohn's treatment option (I think the doc who published is Jill Smith)

healing thoughts

dave
Posted 5/25/2013 1:21 PM (GMT 0)
And do not forget to look at Low FodMap. It will help to heal and prevent further episodes of SIBO.

SIBO can be a real bear. Tough to get rid of. Many if not most folks have to go through more than one round of Xifaxan. I have the links on my other puter, but there is a great article on medpub, the best research site I can find, on this subject. Also look at Low FodMap studies and SIBO treatment studies.

I did, sent the research to my doc, and we could discuss the diagnosis process and treatment plan, much more as equals

The other thought is, have you looked into LDN. Many folks swear by it and there is some recently published research that shows it to be a very effective, low side effects (virtually none) , Crohn's treatment option (I think the doc who published is Jill Smith)

healing thoughts

dave
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