# Excellent IBS information Johns Hopkins



## kazzy3 (Apr 11, 2003)

Great info eric. Thanks. I get the feeling from the article, that IBS is finally getting some attention. I hope docs read this article and take it to heart. Maybe, then we'll be taken seriously and more treatments will eventually be available. It's good to know that they are trying. Take care.


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## Jeffrey Roberts (Apr 15, 1987)

Excellent current and detailed overview.Thanks,Jeff


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## roger (Mar 26, 2003)

Thanks, Eric.This should be required reading for anyone with IBS.


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## NancyCat (Jul 16, 1999)

This is excellent Eric. IBS seems to be getting more airplay so to speak. The medical center where I see my GI is getting a new DR in the fall, someone who has been exclusively seeing IBS patients for the past 2 years. She will only be seeing IBS patients and the GI dept where I go is very excited about adding her to their team. There certainly is increasing demand for such a specialist


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## SpAsMaN* (May 11, 2002)

Oh,look at the buttom of the page and click for more pages.The graphs are good







.I think my sensitivityaltered motility is located in the sigmoid colon.








I wish i could find a drug to reduce the painsensitivity without any G.I. stress or side effect.


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## SpAsMaN* (May 11, 2002)

Nancy,i see you are in Maine,i'm in Quebec.







A doctor who only see IBS sufferers,that sound good,tell us if she have few "ideas" to stop the symptoms of IBS...Maybe i can go there if that can help me,it's only few hours from here.


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## NancyG (Sep 1, 2000)

Thank you Eric for posting this information, it was very informative. Looks like Dr's are starting to take IBS as a real problem for a lot of us, hopefully one day they will find medication to really help us. Thank you so muchNancy


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## kazzy3 (Apr 11, 2003)

WOW! A doc that deals only with IBS. That's great. Most gastro docs think of IBS as not serious, and focus mainly on the life threatening stuff. Which is important, but those of us with IBS are pretty much told to deal with it and quit complaining. Ok, maybe not in so many words,but the message is clear. Finally, a doc to deal exclusively with IBS. Hopefully more docs will do the same. In the meantime, Nancy let us know what you find out.


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## eric (Jul 8, 1999)

Nancy, I am really happy your going to be seeing a doc who will take the time with you and who specializes in IBS, that is excellent and I wish you all the best.







They have been making a lot of headway in IBS lately, it just a very slow process.I know there is also more information coming out soon.


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## lizzie0606 (Mar 26, 2004)

As someone mentioned it should be required reading for IBS. Again, thanks.However, the docs at JH did nothing for me regarding predominately IBS pain/cramping. I was told to cut out caffeine, have one serving of salad at lunch & exercise daily. Yessssssssss, this was my treatment plan by the doc who is head of the GI dept. I might also say my tx plan was jotted down on a natty piece of paper that was stained with either tea or coffee. Hmmmmm...I took off work a half day to go see see some of the best docs in the world (please don't think I am knocking MD's...I am not...I admire their schooling, the plethora of knowledge, their drive, their intelligence etc...), however, but to take off work, drive approx an hour to my appt, pay $10.00 to park in the Johns Hopkins vistor/patient parking lot & then sit another 45 mins in the waiting room. After my name was called, I was escorted to a small room where my weight & vitals were obtained. After that was completed, I then was escorted to another room, where I sat for approx 25 mins (thank goodness I always bring a book with me) until Dr. Jaffer came in to see me.We quickly exchanged greetings/hand-shakes. I came well prepared with copies of my colonoscopy, labs, current physical etc...and a detailed typed journal which entails my food diary & when I get pain/cramps (the location of where I get my cramps/pain, the time, duration, pain scale etc...) Since, I am not on any medications...other than hyoscyamine (anti-spasmodic)...he didn't have to review any medications with me nor do I have any other health problems...other than horrible nocturnal pain/cramping and day time pain/cramping. I told him that I do not have diarrhea nor do I have constipation. I have a normal bm 1-2x per day.I told him that I eat very healthy and exercise, which I do. I cannot eat dairy, since it produces horrible cramping & diarrhea...so I steer clear of it. I never eat fried food nor do I frequent fast foods eateries...I am a picky eater & perfer to pack my lunches with healthy choices. I am 5'4 and weigh 110lbs, if anything I would like to gain weight.Anyway, his reply was to cut out caffeine. I only drink one cup of coffee each a.m. That is it! I have no other caffinated beverages. Have a salad at lunch...I do that anyway. Humph!I asked him about the Digestive Advantage IBS & various probiotics...he said there is no proven documentation that these things can work, but go ahead..they aren't harmful to your body, so if you want to take them, go right ahead.I said..what can you do about my nocturnal cramping!!!!!???? I am so sleep deprived due to waking up in the middle of night 5-6 days out of the week with horrible pain/cramping....grrrrrr!! The hyoscyamine is not doing anything for the horrible pain...I can't stand the pain!! His reply was there was nothing he could do, there is no cure for IBS. I said, could you please do a hydrogen breath test for lactose...I was thinking maybe I was getting lactose from something that I didn't know I was eating...I am extremely careful, but since lactose is in numerous products...please could you give me a referral so I could get that done & also a food allergy test (IgG testing). I was begging him...but, he still stated NO...and then he brought in another doc...who also agreed that there is no indication to perform those tests...hence we will NOT perform those tests. I was told to come back in two months for re-evaluation that I have IBS based on clinical diagnosis. After the doc was trying to rush through our visit, I let him know how long I waited for this appt both in the waiting room & exam room...plus the parking, missing work, payment etc... He didn't care, he said he had other patients to see & had to leave.I had approx 10 mins with these 2 docs. Blew a half day of sick leave, a quarter tank of gas, 10 bucks in parking, 45 mins in the waiting room & 25 mins in the exam room waiting on a doc. Oh, & of course my co-pay for my health insurance. Needless to say...I was totally disgusted when I left that hospital.Yes, they have great doctors at Hopkins. But, you need a doctor who has the time & is willing to listen to you!!Lizzie


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## peardrops (Jan 3, 2004)

That's all we ask for Lizzie, a doctor who will listen to us. Thanks Eric, very informative information.


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## cadia (Jan 5, 2001)

Sounds like since Dr. Lacy left all things went to hell. when I saw Lacy there, he was the only one around, he greeted me in five minutes in the waiting room, then HE took my vitals and then felt my belly explaing that he could feel the gas build up, showed me where my liver was told me it was healthy and told me to come into his office, he sat and listened to me talk, looked at my stuff and then proceeded to write down a plan for me on an unstained piece of paper that consisted of trying to anticipate the attacks before they happen and then if they happen to take more of the antispasmotic he prescribed me, then he gave me Zelnorm to try. After that I wrote letters to him of my progress and he returned my letter advising me certain thing until my next appt, next appt he stopped the Zelnorm because it as making me worse, gave me some other things to try, wrote out another plan and that was it. Until i became pregnant he told me i'd be better shortly during the pregnancy and good luck, i got better and now i'm back to being sick so i was looking to get back into that john hopkins team of new dr's for treatment again since Dr Lacy went into research and development for new drugs for ibs. Now reading about your experience I'm not too sure about it.-C


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## lizzie0606 (Mar 26, 2004)

Sorry there is more to my post above. Since I was so disgusted when I got home from that visit, I did a search on homeopathic/naturalpathic MD's. I ended up finding a wonderful doctor who was grateful to have a patient who kept a detailed food diary as well as a pain/cramping annotations. She felt very positve that it could be food causing this cramping or parasites.Well, labs revealed no parasites of any sort. Just no growth of Lactobacillus and low growth of Bifidobacterium. However, with my diet elimination plan, I am happy to say...that after eliminating citrus, I NO LONGER have nocturnal cramping!!!! After enduring almost 2 years of horrible nocturnal pain/cramping of waking up in the middle of night & being sleep deprived at work...I now go to sleep with out WAKING UP IN A DEEP SLEEP with excruiating cramping/pain!! I simply cannot believe that I actually REMAIN asleep without bolting upright out of a deep slumber, waking up my husband & yelling/moaning/writhing in pain curled up in the fetal position. Getting my heating pad & taking the hyoscymaine (which doesn't help much) and waiting approx an hour or so until I am tired enough to go back to sleep and then have to wake up again, with morning cramps/pain prior to work!!! It has been a little over 1 month & I still think I am dreaming regarding no more nocturnal cramping/pain. This doctor put me on Permeability Factors to help heal my gut & I now take HMF Forte (probiotic). I know I am not out of the woods yet, but so far so good. I am still on a no dairy diet and continue introducing new fruits (except citrus) every 4 days, to see if I have any cramping. If I do, I discontinue that fruit & wait another 4 days before I introduce another new fruit. All is going well, so far no cramps/no pain. Once my gut begins to heal & my bacteria levels get up to par (after retesting the micro bacteria again) once she thinks I have been on the probiotics long enough...I may try dairy again...but, for now..I don't want to get cramps. However, I do miss dairy. I also had IgG testing & currently waiting results.**For the pain, a very kind & compassionate doctor who works at Patient First prescribed me toratol for whenever I get those horrible cramps/pain. I only had to take it twice before we discovered it was the citrus fruits causing the cramping/pain. But, at least I have something to help with the pain, if I do ever get those horrible cramps/pain.Good luck to everyone and don't forget there are other avenues to persue!Lizzie


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## lizzie0606 (Mar 26, 2004)

Hi Cadia. Sounds like you had a wonderful doc there!! Too bad he is not there anymore. Good docs do follow-up and ask your progress whether it is in person, by phone or email. The two docs I have now...they listen & they both f/u. I feel blessed that I FINALLY found two great physicians...even though their back ground is different, they aren't afraid to think outside the box.As far as Zelnorm, those docs won't prescribe it. They don't want the law suits. I have two friends who were on Zelnorm & their docs took them off of it. Both from Hopkins.Peardrops...totally agree about having a doc that will LISTEN to you. Take care. Lizzie


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## eric (Jul 8, 1999)

FYIKeep following the next section at the bottom.It also has a lot of graphs http://www.hopkins-gi.org/pages/latin/temp...se=43&lang_id=1


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## eric (Jul 8, 1999)

I think no matter where you go some people have good experinces and some not. Its is really to bad they don't have more time to help, that is part of the problem really. They even know this.It might also depend on what that doc has going that day, maybe in the next room someone is in really bad shape and needs major help, not that that is a patients problem really, but realistically the docs.I think it also helps to do some research and keep a diary for a while before you go, to help save time and ask questions you want answered for sure.These help with that.Ten questions to ask your doc. http://www.aboutdigestion.com/script/main/...rticlekey=13683 and Irritable Bowel Syndrome: How far do you go in the Workup? http://www.romecriteria.org/reading1.html Current Approach to the Diagnosis of Irritable Bowel Syndrome http://www.aboutibs.org/Publications/diagnosis.html


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## SpAsMaN* (May 11, 2002)

Good topic,especially the first Eric link.Good topic should be bump more often.For the fruits,yes the acidic one are OUT,but nectarine and Cortland apples are VERY useful.


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## lizzie0606 (Mar 26, 2004)

I think no matter where you go some people have good experinces and some not. Its is really to bad they don't have more time to help, that is part of the problem really. They even know this.****Eric, I agree with you regarding "time". Yes, the docs do know that, so do I...I am an ICU registered nurse. I also used to work at J.Hopkins...got burned out & moved on. Yes, there are good experiences & bad experiences wherever you go. But, a lot of it is, managed care....hospitals don't want the overhead, many hospitals are operating in the "red".. so often the docs won't order tests they deem unnecessary.J. Hopkins has the best of the best docs working there...and I guess...I thought I might get a little more time...since I did come well prepared. ****It might also depend on what that doc has going that day, maybe in the next room someone is in really bad shape and needs major help, not that that is a patients problem really, but realistically the docs.***That is true, it happens with nurses as well...they can't be in every room taking care of all their patients at once. However, the GI dept is for appts/consults/f/u's only, it is not a medical/surgical floor...if anyone goes "bad" they are put on a guerny & off they go.***I think it also helps to do some research and keep a diary for a while before you go, to help save time and ask questions you want answered for sure.***I have been doing research for some time & came well prepared to my appt with type written questions, as well as my detailed food diary including cramping/pain scale, location, duration etc.. I had all the dates high-lighted when I had cramping/pain....looking for a pattern. But, even though you come well prepared...docs just don't have the time...see more patients, shove them out the door etc..These help with that.Ten questions to ask your doc. http://www.aboutdigestion.com/script/main/...rticlekey=13683 **these are good eric.Lizzie


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## spml (Mar 20, 2000)

Lizzie,Sorry you had a bad experience at JH. One thing I learned from a wasted 1500 mile trip to the Mayo clinic for another condition 10 years ago is that it's not enough to go to a great medical institution. You must go to the right doctor within that institution. The specific doctor is key.I'm glad you are now greatly improved, and I hope it continues.


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## calid (Aug 4, 2003)

Lizzie: That is the same exact approach Dr. Dahlman uses. It seems as though his way of thinking is right on target, it's too bad we can't get the dr's on our insurance plans to use this way of thinking and treatment!!!


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## lizzie0606 (Mar 26, 2004)

Lizzie,Sorry you had a bad experience at JH. One thing I learned from a wasted 1500 mile trip to the Mayo clinic for another condition 10 years ago is that it's not enough to go to a great medical institution. You must go to the right doctor within that institution. The specific doctor is key.I'm glad you are now greatly improved, and I hope it continues. --------------------------------------------------------------------------------Spml,Hi! Oh my, a 1500 mile trip to the Mayo Clinic!! Sorry to hear about that! But, you are correct about obtaining the right doctor in the facility! I hope you are doing well & thanks for caring, that was nice of you to reply. Are you under Dr. Dalman's care too?!Lizzie--------------------------------------------------------------------------------Lizzie: That is the same exact approach Dr. Dahlman uses. It seems as though his way of thinking is right on target, it's too bad we can't get the dr's on our insurance plans to use this way of thinking and treatment!!!*** Calid,Hello! Good to hear that my doc is following the tx plan Dr. Dahlman is using....especially since reading all those posts with people getting better!!! Yea...what terrific news!!!I liked what you said regarding IBS is such a "trash-can diagnosis...who knows what is causing it"! That is absolutely CORRECT!!Yes, I sure wish this doc who is treating me with supplements, diet & labs testing was under my health insurance, but she is not. So, I have been using my credit card. But, when tax time comes around...I am going to save every receipt & present it to my tax preparer for medical bills that weren't paid by health insurance. I did that last year too.Take care & wishing you the best of health!Lizzie


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## gutsgonewild (Jun 27, 2004)

> quote: But, you need a doctor who has the time & is willing to listen to you!!


I couldn't agree more! I have yet to find one myself. I just get the take fiber and go away treatment.







One doctor told me to "quit eating spicy food".....um, I don't eat spicy food to begin with, thanks for not listening.







LOL Thanks for the info eric. Maybe someday people with "IBS" won't have to suffer any longer.







I doubt I will see it in my lifetime though.


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## lizzie0606 (Mar 26, 2004)

Gutsgonewild,Hi! You cracked me up with the, "I just get the "take fiber & go away treatment"! It reminded me of one my GI docs who did my colonoscopy...I was just waking up...still woosey..and he said..You got IBS...take Citrucel..good-bye..any problems call me. Still giggling about the spicy food too...as you said these docs need to "Listen" to us. Maybe it is a conspiracy...lol! Take care.Lizzie


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## gutsgonewild (Jun 27, 2004)

> quote: Gutsgonewild,Hi! You cracked me up with the, "I just get the "take fiber & go away treatment"! It reminded me of one my GI docs who did my colonoscopy...I was just waking up...still woosey..and he said..You got IBS...take Citrucel..good-bye..any problems call me. Still giggling about the spicy food too...as you said these docs need to "Listen" to us. Maybe it is a conspiracy...lol! Take care.Lizzie


Hey, at least you got the "call me"! I didn't even get that.







LOL I was told after my colonoscopy that if the biopsies came back negative, I have IBS, take fiber and bu-bye! The doc could have said it more honestly and truly candid like this~~Have a nice day and enjoy the constant pain, diarrhea, night sweats for the rest of your life cause this doctor has gotta golf game! See ya sucker! Thanks for the $$$







LOL Or something like that!


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## SpAsMaN* (May 11, 2002)

The MD's are overwhelm by the IBS epidemic.They can't said:Well,i can't do anything for you.There is sooo much infos Eric it takes a while to read all the pages.I guess i should finally makemy daily foods diary.


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## SpAsMaN* (May 11, 2002)

And yes a low sugarhigh protein diet help a lot.


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## eric (Jul 8, 1999)

It should be noted, that Dr dahlman does not subscribe to the above information and believes IBS is leaky gut, which is not what the real experts believe. Just to clear that up it could be misleading to new people."Irritable Bowel Syndrome (IBS), which is classified as a functional gastrointestinal disorder, is a chronic condition of the lower gastrointestinal tract (Figure 1) that affects as many as 15% of adults in the United States. Not easily characterized by structural abnormalities, infection, or metabolic disturbances, the underlying mechanisms of IBS have for many years remained unclear. Recent research, however, has lead to an increased understanding of IBS. As a result, IBS is now considered an organic and, most likely, neurologic bowel disorder. "The plus here is they are begining finally to really understand the problem/problems better and new ways to treat IBS for the future.


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## SpAsMaN* (May 11, 2002)

I still try to see if the first link can help me by reading it.Thanks for the ten questions Eric i will irritate my G.I. specialist with it.


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## eric (Jul 8, 1999)

the ten questions are good to take with you to the doc spasman.


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## eric (Jul 8, 1999)

bump


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## SpAsMaN* (May 11, 2002)

Nancy,i understand why you dosen't reply my question.You want to keep your IBS specialist only for you.Hmmmm.


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## ohnometo (Sep 20, 2001)

John Hopkins did nothing for my IBS but put me through alot of embarrasing test....I have learned more here on the board than with any Doctor


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## eric (Jul 8, 1999)

did those tests help to rule out or even diagnose conditions you thought you might have had?


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