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08-24-2007, 08:02 PM   #1
karlyg
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Habba Syndrome?

Have any of you ever heard of Habba Syndrome? My mom saw a TV program about it and told me about it - I read some stuff online, but am curious if anyone on here has any other info. From what I've read, it is a disorder of the gallbladder that causes pain and D. The reason my mom told me about it and why I am asking you guys about it is that, while I have been diagnosed with Crohn's, the process of my diagnosis was far from clear-cut (my colonoscopies have been "inconclusive," but blood and stool samples come back with characteristics that indicate Crohn's and the only meds that have ever helped me at all are Crohn's meds, so GI says it's Crohn's). I go to the GI again in 3 weeks, so I am going to discuss this with him and most likely get (even more!) tests to check it out. Anybody know anything about this stuff?
08-24-2007, 09:09 PM   #2
DanSJVDavis
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No, but a guy I knew once and gamed with kept asking me a bunch of questions about Crohn's because he thought he might have it. He was finding that tea helped him feel better and whatnot and some of the same things that makes a Crohn's patient feel better by cutting out kinda made him feel better too. Eventually he went to get tests like I kept telling him to do and they did eventually figure out it was a bad gallbladder causing him his problems. They took it out and he was fine after that. If your tests have been pretty inconclusive I'd definitely look into it or mention it to the doctor, though I've noticed that doctors suffer from pride and don't like to be told that they could be wrong by their patients.
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08-25-2007, 10:25 AM   #3
Cara Fusinato
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It's not listed in my physician's desk reference at all . . . that makes me wonder the validity of it. Was it a TV show offering a cure?

Looked it up on the net . . . a syndrome named after a doctor and only checked out in "independent" studies. I'd call it irritable bowel syndrome. I'm a bit skeptical about this.

Last edited by Cara Fusinato; 08-25-2007 at 10:29 AM.
08-25-2007, 10:21 PM   #4
karlyg
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Yeah - I am kind of unsure about it myself, but the doctor is associated with a good hospital near where my sister lives, and it's based on an article published in a major Gastro journal. He says it is a syndrome often mis-diagnosed as IBS. I'm just going to see what my doc says about it (and I always take things with a bit of skepticism anyway). It wasn't a show advertising anything, though (that would be an immediate red flag!) - I believe it was "Mystery Diagnosis" on Discovery Health Network. I dunno...just figure I might as well at least look into it. I'll keep ya posted!
08-26-2007, 09:26 AM   #5
Kev
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Hey karly... Well, it was published in the american journal of gastroenterology some years ago... and from the little that I've garnered on the 'net', Dr Saad Habba has some pretty impressive credentials. apparently, gall bladder malfunctions, causing a person to experience diarrhea after eating (sounds very reminiscent of what I went thru)... and that traditional therapies for UC/CD, or even IBS, don't have any affect.
I think it may also be referred to as 'bile salt diarhea'.. Since I had my gall bladder removed, yet continued to get worse, I initially wasnt' going to explore this. But, I've seen reports of people who've had their g/b removed, but continued to have issues for several years afterwards ANYWAY... so i'm asking my GI about it on the next visit.
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09-02-2007, 05:11 PM   #6
Lee
 
Hi Kev

I saw your note about Habba Syndrome and I saw the same show on TV. I've been researching it today and I believe it is what I have. I printed a lot of the info and am going to take it to my Dr. appt. in 2 wks. I can't believe after more than l0 yrs. I think I have finally found out why I have been almost homebound for so many yrs. I live on Rx Immodium and most of the time that doesn't even help. I thought all these yrs. I had IBS but now after reading a lot about Habba Syndrome and seeing the show on the Discovery Health Channel I'm almost positive I have the Habba.


Lee,
Best Regards
09-02-2007, 05:15 PM   #7
Lee
 
BTW Kev,

I forgot to mention that I also had my gallbladder removed quite some time ago.

Lee
09-02-2007, 06:59 PM   #8
Kev
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Now, see, there's another similaritie... The difference is, when I ask my doc, I'll say something like " Hey doc.. that bile salts diarrhea.. me habba yes, or me habba no?"
09-03-2007, 05:46 PM   #9
DanSJVDavis
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I've definitely got a bile digestion problem which I'm bout sure is where much of my diarrhea and gas comes from, but it's more to do with my lack of terminal ileum, which is where bile is reabsorbed into the body by the by. So, I frequently have very acidic diarrhea, which burns and also bothers my bowels. Usually I have to take a lot of antacid to keep my acid stomach in check or it gets out of control and messes up my bowels for a few days.
09-04-2007, 07:06 AM   #10
Kev
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Well, no medico here, but I understand that the pancreas plays an important role in the balancing act of the stomach... introducing the right enzymes and marshaling the production of acid. Along with the esophgeal (sp?) valve (not the right terminology, but the 'real' name escapes me).. Anyway, my crude understanding of the mechanics involved is that this valve triggers the acid jets to start pumping, and the 'balance' of what they excrete is influenced by the pancreas... but I may be totally wrong here.. It could all be an 'acid' flashback of another type. I do note that my stomach acid gets out of whack if my 'system' is slow or sluggish, and gets quite nasty if I then eat a regular sized meal vs smaller one (that valve at play).. And my 'home' remedy (ginger ale) is not as effective as it used to be.. Just another case of my body being out of whack in some matters.
09-18-2007, 01:01 PM   #11
karlyg
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Hi all,
I posted a while ago saying I was going to ask my GI about Habba Syndrome, and I went yesterday and asked him. He said he really doesn't think that is what's going on, as (1) Habba Syndrome doesn't include a lot of the symptoms I have and (2) Crohn's does include all the symptoms I have. Also, he said the meds I am on now (Pentasa and Entocort) wouldn't be doing anything for me at all (they are keeping me relatively stable...knock on wood!) if it were Habba Syndrome. So, he's sticking with his Crohn's diagnosis. I tend to agree, and, at this point after years of tests and the runaround, I am inclined to just accept it and work on figuring out how I can be as healthy and productive as possible now that I've got a diagnosis. Just thought I'd let you all know. Thanks!
~~Karly~~
09-28-2007, 11:37 AM   #12
sueberry
 
Hi Karly,

I'm new here, but not new to the "Habba Syndrome." I was diagnosed with Ulcerative Colitis and Diverticulitis in January. The Doc put me on Colazal for three months and only after three months of a kazillion pills it was tamed down for almost two months and then came back full force. I saw that program on the "Habba Syndrome" and I asked my GI over the phone about it. Well, he researched it and prescribed a cholesterol lowering powder and it worked, OVERNIGHT!!!!
Nowhere does it say you can't have more than one IBD at the same time. Boy did I hit the jackpot. lol
If you still can't control your diahrrea I would call the doc again. Explain to him, just because you are diagnosed with Crohns does not mean you cannot have Habba too. That's what I learned from my GI. He's my hero! A great GI Doc.
Good luck to you and I hope the word gets out about this Habba Syndrome. I fully believe it is a true disorder because the medication I took worked! It's a fairly new discovery. I researched it and saw that back in 2000 was when they announced or gave it a name.
Good luck and Never give up!
Sue
09-28-2007, 08:10 PM   #13
kpratte
 
This is very common with a resection of the terminal ilium because we are not able to reabsorb the bile salts and it causes the big yellow D. And magically we take cholestyramine to regulate us.

- Ken
10-02-2007, 10:13 AM   #14
sueberry
 
Hi Ken,

That is what I take for the big yellow D. But I have not had any surgery. I was told my gallbladder is the culprit. I'm pretty sure it will have to be removed. This is the most confusing of all diseases. I'm so sick and tired of being sick and tired!
10-02-2007, 10:25 AM   #15
Kev
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Yeah, g/b can cause this too.. Oddly enuff, g/b surgery can cause it, for years after. I understand that it takes the body sometimes 2 or more yrs to adjust post op, least I was told to allow for this AFTER my g/b surgery. Meds can bridge this gap, or one can modify their diet till the body aclimates... sounds almost like a self defeating plan.
10-02-2007, 08:26 PM   #16
kpratte
 
Interesting Kev.. After my surgery I went back to the Doc and we go through the usual how are things going and I mention I have a wicked cause of the big yellow D and he says yup, that's normal. He mentioned that it takes some people take a month or so to adjust, nothing about that it could be a tad longer, of course it's been like 3 years and still nothing different. Oh well.

- Ken
10-03-2007, 07:23 AM   #17
Kev
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Well, pre g/b surgery, one of the surgeons sat down with me and explained the risks and benefits. Obvious benefit was g/b gone, and no more cysts. downside was that in some folks, it took years for the 'D' to go away, whereas in an even smaller 'group'
it never went away. He couldn't explain why, or tell me what category I'd fall into pre
surgery. I've stuck to my diet, so I haven't tempted fate to see where I am post op.
10-07-2007, 09:44 AM   #18
geeko
 
Hello all,

I am currently doing some research on Habba Syndrome. I actually went to see Dr. Habba himself last week, and he wants to take me on as a patient and get to the bottom of what I've been dealing with for the past 3 years.

This being said, my family isn't convinced of his legitimacy. They are concerned that I am going to be getting a colonoscopy, etc from a wacko doc and that I will die. What I'm looking for is some confirmation or reference or something that this is a legit doc.

I found him to be very personable and understanding, and from what I have found on the web, only positive things can be said about him. I just am looking for a more professional opinion to give my parents some peace of mind. Judging from the symptoms of the syndrome, I would not be surprised in the least if this is actually what I have.

Has anyone's doc been receptive to the syndrome? Or do they know anything about Dr. Habba himself?

-Geeko
10-07-2007, 10:20 AM   #19
Kev
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No first hand experience with Dr Habba. you are probably the first person on here to meet with him. Bile salts diahrea is a real entity, I discussed it with my GI. The only info I have on Dr Habba is what I garnered from the web pre discussing it with my Dr

From the info on the web, Dr Habba seems to have some serious credentials. And he was published in the GI journal. I don't know the criteria involved in getting a paper published within that publication, but I would 'ASSUME' that it denotes, at very least, someone who is not afraid to put their work out there for peer review. I would 'ASSUME' that anyone of questionable merits would avoid such a review. Its' just an assumption, and i'm not a trained professional (medically speaking), but it does seem logical. As for the risks involved in a scope procedure, there are some. Biggest is a potential bad reaction to the anesthetic.. thats EXTREMELY rare. Also a chance of bleeding from any biopsies they perform during the procedure. I think that pretty much covers the ones that come to mind. I've had lots of these done, pretty much everyone on here has had them, they are pretty common to any IBD.
for the most part, the scope itself is painless, the worst part of it is the pre prep. I think (again ASSUME) that pretty much any intern or resident could perform one w/o supervision or risk.. After all, the GI tract is actually considered to be outside the body (only medicos can fathom the rationale behind that.. but they do). so its pretty safe to have a GI perform a scope... and the more experienced, the better.

Hope that alleviates your fears, your parents fears too. I'm a parent, and if any of my sons needed a scope (God willing, it never happens) then I wouldn't hesitate to have it performed by my GI, or a GI with the credentials of Dr Habba. Okay?
10-07-2007, 11:12 AM   #20
geeko
 
Thanks Kev

Yeah, I've had a colonoscopy before. I think my parents were just concerned because I wasn't referred to Dr. Habba by a physician and because they haven't known anyone personally who has met him.

I did do a little research on his credentials. The Royal College of Surgeons in Ireland is hardly something to scoff at. I will definitely share my findings with my parents, and hopefully they will have some more faith.
10-10-2007, 09:33 AM   #21
Cara Fusinato
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Hey, Geeko, I am totally interested in hearing your progress with Dr. Habba. DO keep us posted!
10-11-2007, 06:56 PM   #22
geeko
 
Thanks Cara! I will. Dr. Habba has ordered me a whole bunch of tests, the first of which was yesterday - the wonderfully fun upper GI x-ray with small bowel. Not the most pleasant experience, but hopefully it will rule out ulcers or whatever. The radiologist was pretty rude and scoffed at "Habib Syndrome" but he's probably just some self-involved NYC jerk.

Anyhoo...I'll let you know if there are any updates.
10-19-2007, 09:21 AM   #23
ann
 
Hi, Took forever to figure out how to register, message etc. Have been suffering from cd for months, before that felt it was IBS. My sister told me yeaterday about Habba. That's exactly what I have. My GP had given me Cholestamin and have been taking it for about 3 months. I don't take it all the time, as I don't fee great on it and always think, maybe I'm better. Ha Ha Another morning in the bathroom tells me I'm not. I also have MS which makes things even more fun as I can't rush to the bathroom. Anyway, the cholestramine, as far as I can tell is definately the only answer. I do feel bloated and my tongue and nasal tissures are irritated. I guess that's nothing comapred to severe CD. I don't however understand the Gall Bladder Thing. Does it matter if you have one? I do. What happens if I hae it taken out? Is that a cure? From what I've read it doesn't seem to matter.
I have never written anything on line or been part of a group. HOpe I've done this correct. thanks.
10-19-2007, 10:02 AM   #24
Kev
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Hi Ann. Welcome to the forum. As a member, your thoughts on Habba Syndrome are welcome. And I'd like to invite you to post a little something about yourself when you feel like it under the 'My Story' section, sort of an introductory section for new members. I am wondering if your sister is a doctor? She diagnosed you? I'm old, and easily confused. As for the Gall bladder, geeesh, I hope its not really needed, as I had mine out 2 years ago. It just stores bile, after removal the bile is piped into the GI system directly. If there is too much, or your GI system is compromised by IBD, it may result in Bile Salts Diarrhea, or 'Habba Syndrome'. If not, then removal of the Gall Bladder may put your system back in normal order. A surgeon would be able to tell you all the ins N outs, all the risks & benefits, OK?
10-20-2007, 04:07 PM   #25
ann
 
Hi Kev

thanks for your reply. It took me a while to find it. I'm a bit of a computer idiot. At first I was having a pity party that nobody responded. Ha Ha. No, my sister is not a doc. I have always thought she could have should have been. She just has that natural understanding.
When my doc. prescribed the cholest... she didn't explain a thing....maybe because she didn't know much more than "try this". I guess i'm interested is people feel something sets off this problem.
Thank you Kev for the info on gall bladder.

Ann
10-20-2007, 04:44 PM   #26
ann
 
Kev. this is ann again. Where is "my Story" I can't find a thing . It takes me forever to find new messages etc. If you can, please tell me the quick links to todays messages etc. My daughter is in univ., she would be such a help to a computer idiot. . I live in New Brunswick by the way and am 47.
signing out for the day.
10-21-2007, 08:37 AM   #27
Kev
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Hey Ann.. Actually, it's 'your story' and it would be the first section you should see on the forum homepage. My goof. my story = your story.. just a brain fart on my part. As for keeping up, just click on the 'New Posts' in the blue bar, and that will list for you all of the new posts or new threads created since the last time you logged in, OK

And one last thing.. Hi neighbour.. What part of NB do you call home?
10-28-2007, 12:05 PM   #28
geeko
 
A quick update - I am preparing for my tests for this coming tuesday. I've got an ultrasound scheduled, along with a HIDA scan with CCK, an EGD, and an endoscopy. A week after that is the colonoscopy.

The only part I'm not too thrilled about is the endoscopy. The thought of a tube down my throat isn't a great one.

Anyhoo, I'll let you all know how it went, and what Dr. Habba thinks at the conclusion. TTFN - Geeko
11-17-2007, 01:41 PM   #29
laura ramsey
 
Hi,

I am new to this forum but found this thread and wanted to share my story. My Name is Laura R. I was the case on the Mystery diagnosis show about Habba Syndrome. I was diagnosed about 1.5 years ago by Dr. Habba after suffering for 3years with Chronic Diarrhea. Dr Habba is the real thing. When I met him I told him if he helped me I would be the Poster Child for Habba Syndrome jokingly. Well 6 months after my treatment started he asked me if I would be willing to share my story with the show's producers. The idea of being on the show was terrifying- after all- as many of you know sharing the stories of pain, incontenance, etc.. is not really something you wake up in the morning wanting to do. I decided to do it because I thought if it helped on other person it was worth it. It is nice to hear that many of you have seen the show or heard of it and are now being diagnosed. If any one has any particular questions I am happy to share my experience. What I am now learning about Habba syndrome, the medical establishment and the politics of having a disease named after you is that this is a new diagnosis. Because Dr. Habba is alive and well and can actually get credit and ackowledgeement for his findings he is also at the mercy of those who think life is all about keeping points. Any Dr. who refuses to check out his diagnostic, try finding out if it is possible you can be helped with his treatment, or denies you the right to explore the option is not the right Dr. GO find a new one. I was misdiagnosed, not diagnosed and ignored by my other Dr's. I now won't take no as an answer and will as a consumer of medical expertise seek Dr's who seek possibilities and do not shut them down. I hope Dr. Habba becomes rich, famous and reaches as many people as possible. I for one am happy he cares about helping people who suffer.
11-20-2007, 07:33 PM   #30
Marty
 
My name is Marty.

Up until ten years ago I was healthy as a horse...

Then after seeing a urologist for a minor prostate infection while in Boston on business, I was put on one round of Cipro. No problem right?.... Wrong! Everything changed overnight....My system went crazy and I had the worst diarrhea (multple times a day) from that day on through today.

My life immediately changed.

I could not do my job, and have diarrhea like this.... My career had involved traveling Coast to Coast and International flights constantly five days+ a week, and I was good at what I did. After less than 3 months of having incredibly terrible diarrhea in a x-country Boeing 'jon' I finally had to give it up, and find something that I could try and do from home.

After 8 gastroenterologist's and (7 years of testing) I was finally diagnosed as a Celiac disease patient.

So I immediately entered into a 100 % gluten free diet. (Totally gluten free), every meal prepared at home, with no possible chance of accidental cross contamination. All the specialist said I should respond sooner or later.

It's now been three+ years, and I have had no response (none...) to the gluten free diet in any way. (In fact, it's getting worse every month or two)... And my wife says I have literally 'turned into a hermit'.

This afternoon I visited my parents, and they told me they had seen the DHC special on 'Habba'. I immediately came home and began researching it in depth.

After a couple of hours of research I ended up on this site a few minutes ago.

I have got to tell you that 'everything' I have learned about 'Habba', everything...points directly to the symptoms I have.

'Right down the line from the poor response to antispasmodics, to the lack of severe abdominal pain during the diarrhea, to improvement of symptoms when fasting'.

Wow!

I have to say that this 'just makes me kind of dizzy' when reading about Habba ....as it is, as though someone described my symptoms word for word.

Tommorrow morning I am going to call my Gastroenterologist (Who now is a good friend we have seen each other so often), and ask her to set up a conference call with Dr. Habba as soon as he can work one in. I want to see if there would be any harm in going ahead and beginning a low dose titrating trial of cholestyramine as soon as possible.

From everything I've read, it looks as though this would be no problem, and it would not take very long to see if we have any improvement.
I do know I have Celiac disease from the antigen blood tests, and Celiac being a genetic disorder needs a trigger... (like Cipro to start it),...but this certainly would explain the fact that my body is 'just not reponding to treatment', as well as the fact that this diarrhea does not fit the usual Celiac pattern.

The bottom line though is this:

I joined this conversation to add this post to say, "whether or not this ends up working out for me or not,.. the important thing is that: "Laura, by you going on this DSC television show... and talking about your problem: you have probably changed many peoples lives in an incredibly important WAY that none of them will ever forget!"

"As you well know, all of us out here who are suffering from the horrible consequences of severe multiple bouts of diarrhea everyday are truly not having a great quality of life experience,...."

"But,... even if your efforts in bringing this to the public eye only helps a handfull of people, You will certainly have changed those peoples lives in a way most 'healthy' people could never, ever understand. (& be blessed by God for doing so.)"

"Thank you Laura,...you may (quite possibly) have just changed my life".

Sincerely,

Marty

(Update)
My Gastroenterologist office is closed until after the Thanksgiving holidays, so I will not be able to do anything until then...... ( Was horribly sick for 5 to 6 hours from eating 2 or 3 bites of turkey............) I wish I never had to eat anything, (ever)....... 'I literally dread eating'.

...... (question) for those of you taking cholestyramine.

Can any of you tell me what the side effects are to taking this (in the low dose form used for treating the Habba syndrome?).. I would assume there are some...(Have you found them to be mild, severe, in what way? etc.)

(I just wonder what side effects I will be experiencing when I begin the medication....)

Also, for any of you who have taken it long term, do these side effects lessen over time,... or are there any tips you might offer for lessing side effects,... such as taking it at night verses day, etc?

Finally, I'd like to ask one more favor from anyone who reads this..."I'd like to ask you to please"...'take the time to say a prayer that this constant, all day terrible diarrhea that I have, actually does respond to the treatment for Habba syndrome'! And I will keep you all in my prayers as well.

I have often heard the saying "What doesn't kill you will only make you stronger", but as you all know, sometimes it...just... seems hard to believe, as it feels as this is killing me.

I would truly appreciate any of your prayers,

Marty
First week in JAN. 2008

OK, I have recieved a script for QUESTRAN from my Gastroenterologist, (Dr. Cynthia Rudert MD / Celiac Specialist) but she told me that I would be foolish to take it because she said this medication will absolutely cause major bone lose over a fairly short time. She said that since I love to hangglide and downhill ski that taking this medication would definately put an end to these activities that I ('use to love to do.')
This really scared me, so after getting the script filled, I have put off taking it, because I really do not want to lose the things that I love so much!!!!
But the last week have been so absolutely miserable and devastating,....I had the flu and they put me on very strong antibiotics...(results were diarrhea every 20 minutes, with heavy bleeding as well)... So... Tonight I took the first dose of Questran.
If there is anyone out there who can verify her claim that this medication causes massive bone lose, PLEASE let me know.................
For some reason I cannot access page two of this discussion, my laptop just will not go to the page two.

However, I could really, REALLY use some advice.

My email is :
[email protected] and I am just about totally exhausted trying to find some sort of way to stop the diarrhea.

I do not know yet if the Questran I took will work, but if it does ..... (The loss of bone density, if this is true,) would just as well kill me, because it would destroy the things I love to do.

If the Questran does not work,... I am about at the end of my options, as this diarrhea is definately killing me.

If there is ANYONE out there who could give me any advice I would gladdly appreciate it, as I do not know where to turn.

Marty

Please remember I can not access page two of this discussion.
My email is: [email protected]

Last edited by Marty; 01-08-2008 at 09:26 PM.
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