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So as my journey continues I went to the Digestive Disease Clinic in Pittsburgh yesterday. The GI dr I saw was good and talked to me for well over an hour reveiwing my records and symptoms. In the end he is suggesting a couple more blood tests and a pill endoscopy. He told me that he feels I have functional bowel disease and not IBS ? I explained what the last 26 years had been and how it had changed over the last 10 months but he remained firm that it is functional bowel disease....I have never really heard of it so that I thought I would post this in hopes that someone has some knowledge of it.I go back to Pittsburgh in 2 months (takes that long to get in) to the functional bowel disease clinic where I will be evaluated by a team of doctors and they will discuss all the findings and come up with a treatment plan. I don't know I am really confused by all this and am getting quite tired of all the run around. The dr said since I was not really responding to traditional IBS treatment that it could not be just IBS......All I know for sure is that for the last 9 days I have been taking 2 mg of Lotronex and 1 Tylenol with codiene at bedtime and have not had a single bad day. No d and not constipated but for some reason dr's don't want to give you codiene even one at bedtime.....so they don't care what works.My arguement was this....you made me sign paperwork with FDA stating I understand the horrible risks of taking Lotronex and its been OK for me to take Ativan for months but now you are worried that I will become addicted to codiene or get constipated?? First I know to back off the Lotronex or codiene or both should i become constipated....Second...one does not get addicited to 1 tylenol with codiene daily....third my risk of narcotic bowel syndrome on 1 at bedtime is far less than the risk associated with Lotronex.....11 months into this and I finally found something that really helps...even went shopping with my hubby all day saturday for the 1st time in 10 months and now....In my corner however is the dr I saw yesterday. He said he sees no problem with me continuing the codiene at bedtime if I stay aware of constipation and is going to write my GI dr here a letter to that effect....so we will see. I also have an appt with the pain management clinic at local hospital.My husband and I have talked and I am all most 52 years old....I want to go to NC and see my family which I have not been able to do for 11 months....I want to get back to work full time and I want my life back. If I am willing to risk Lotronex....I am willing to risk one codiene a day. Any input would be appreciated on knowledge of Functional Bowel Disease verus IBS And I thought IBS was functional bowel disease....I am really confused?
 

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Just a few words of caution with taking codeine based on my own experiences.Back before I was diagnosed with an inflammation of the colon,a slight one, I used codeine as it was the only thing that worked.But 1 turned into 2 then into 3 and 4 and so on until the doctors finally acted because I was having to take 20+ a day to stop diarrhoea but by this stage they just weren't working of course.This was when I was taken into hospital for investigation procedures.My point is that,I wasn't addicted to them as some people can be but your body can get used to codeine and it's effects mean that the dose needs to keep being upped quite regularly and can get high enough to cause dependence on them. I was dependent on them to be able to hold down a job without being off sick and losing my job,which I did anyway in the end.They don't seem to be a long term solution in my experince and that is generally why doctors are reluctant to prescribe them for patients with bowel problems.I can take codeine now for things like toothache but they don't have as much as an effect on me as some others due to a bit of a resistance to it.Just be aware that this is one of the main reasons doctors aren't keen on prescribing or patients using codeine long term.
 

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Discussion Starter · #4 ·
I understand the concerns of the doctors and if they had an alternate solution that worked for me I would gladly try it. The problem is I have tried so many like Librax,Bentyl, Levsin and such and I do not get pain relief with any of them. I would like to say I am not the kind of person that would become addicted but no one ever knows for sure. I am so sensitive to medication I can't imagine taking more than one at bedtime but the last 11 months have been pure hell and I am just ready for some real relief not just absence of diarreha....you know that is what they think oh you aren't having terrible diarreha so you are getting better. Ok then why still the pain, weight loss and occasional nausea? I would gladly this day take back the IBS I have had for 26 years....that I could deal with....this....I don't know some days how much more I can take that is why a run of 11 good days have been a blessing to my body and spirit....I have been eating like a horse anything I want and actually smiling again!!!! If it is the codiene I say I will risk it all to continue to feel well again !!!
 

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Looks like they've just tried the antispasmodics. While there are several of them, they all work the same way and generally if a couple of them don't work, any other one won't work.Have they ever tried tricyclic antidepressants or the newer SNRI's or are those something you don't want to take. Sometimes they can give good pain relief.
 

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Kathleen,my doctor was talking about maybe trying out SSRI's.Do you know what they are? Are they similar to Amitryptiline which did nothing much for me?
 

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Discussion Starter · #7 ·
Yes I have tried several and the last one ended me up in the ER with severe headache and chest pressure so I think they are something that may not work for me as I seem to be sensitive. It was only 10 mg of Amitriptyline and after the 5th day I was in ER. I have tried Lexapro, Pamelor and Trazodone.....so it is not like I am opposed to trying anything. I would just like for once for the Dr to give me something that actually makes me feel better.....not WORSE !!!!!!
 

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vicki, unfortunately we usually can't predict who will do well with a drug and who will have too many side effects. They are working on how to predict that but we are still at trial and error for now.jmc. SSRI's typically have a different side effect profile and some people do find they tolerate them a lot better than the tricyclics like Amitryptaline. However they do have their own side effects so you have to just see how well you tolerate them.http://en.wikipedia.org/wiki/List_of_antidepressants has a list of the different classes.FWIW of the SSRI's Zoloft tends to loosen the stools the most. Some people with a lot of diarrhea may do better on the SNRI's that tend to be more constipating (like the tricyclics) but again have a different side effect profile.
 

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Instead of taking all the Band Aid measures check out this thread. http://www.ibsgroup.org/forums/index.php?showtopic=52390. It refers to a protocol at Cedars-Sinai by Dr Mark Pimental. He has developed a protocol that is basically a cure for IBS. His book is called "A New IBS Solution" and is well worth the price. I am taking it to my doctor next week to discuss it with him. It is as simple as an overgrowth of bacteria.
 

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Maggie with all due respect.. Dr. Pimental's program doesn't work for everyone and referring to other IBS sufferer's means of symptom management as "bandaids" isn't helpful or supportive. Please keep in mind what works for you isn't necessarily what will work for Everyone so try to be more tolerant of what works for others.Thanks.
 

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Even Pimentel does not believe every single person with IBS has bacterial overgrowth. How many varies, but some do. He even suggests all the bandaids you decry in interviews about IBS. He isn't IBS is one thing and one thing only and everyone only needs that one treatment and everything else is to be avoided at all costs.Please see if you can get a breath test before randomly taking antibiotics hoping they might help. Some IBSers end up with a worse set of flora in the colon for them (no bacteria in the wrong place, just a different colon ecology) after antibiotics so it is good to find out if you even have SIBO before you start treating it. Also sometimes the first antibiotic doesn't work and they can't tell if it didn't work because you didn't kill the bacteria in the small intestine or you have other things going on if you never got tested to start with.SIBO research has even progressed in the almost 10 years since the book came out so it isn't the truth and the light and the way. It is a book written a the start of the research on SIBO, not after all the needed research has been done.
 

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I take Lexipro for anxiety & depression, it doesn't help my IBS-D. It's like a vicious cycle.I take 2 Imodium a day, more if I have to leave the house.Was laid off in May & can't even imagine having to go on an interview. Panic attack.I've had all the "usual tests" -- all negative--now I don't have health insurance.I get frantic if I have to leave the house.........unless I'm with Hubby.Thanks for listening. I'm just SO DONE with this after 25 years. It's so horrible.P.S. So many things seem to dwell on IBS-C help, but not for us.
 
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