On the Road to Healing

[catarific]

I am finally on the road to healing.....

I am hoping that those who are undiagnosed are reading this because it may help them find some answers and some relief....

I am sure many undiagnosed diarrhea sufferers do not know that their D may be caused by bile salts leaking into the intestines. Diet will not cure this - the only thing that will is medication and that medication is either Cholestyramine which is powder form or Welchol (pill form). I know some will say that this is defined as Habba Syndrome - but not all forms of bile leakage are categorized as this syndrome. My Gastroenterologist explained that this is fairly common and is easy to take care of and is not really anything to be alarmed over.

What you will need to do is first have a colonscopy and endoscopy to rule out Celiac, Colitis, IBD, or Crohns disease. Blood work is also necessary and stool samples. If all come back negative - then you may be suffering from Bile Salt leakage or possibly Habba Syndrome or even gallbladder disease. This condition is also very prevalent to those who have had their gallbladders previously removed. Trust me when I tell you it is well worth looking into. I have suffered for months and am finally beginning to see some positive results. I am still thin at 98 lbs. (lost a lot of weight with this) but am hoping to soon put some back on. I did notice that I am not having digestive issues (malaborbtion) and the diarrhea is much, much less than before. I asked the doctor how long I would have to continue the medication - he said probably around a year until everything returns back to the way it should be. I must say - I can now eat many of the foods I had sensitivities and/or intolerances to - which were many.

So if you are really suffering from undiagnosed diarrhea - do look into this.

I hope that I am still welcome to post here - because the members in this forum are the greatest and most supportive people I have ever met! Thanks so much for all your help - it is so very much appreciated!

[sarkin]

I'm so glad you've gotten some answers. And even more important, you're feeling better.

I would love to see your gastro doc demonstrate how to be unalarmed after a few weeks of sleeplessness with unremitting D, during a time where no one is telling you "it's common and easily taken care of" - that would be a sight to behold ;0

I hope your relief from D and food intolerances continues to improve, and your weight loss begins to turn around.

I had read about bile salts causing diarrhea, but didn't realize that the diagnosis was done by ruling out everything else. For something that's apparently common, I'm surprised so many less common things have to be ruled out (esp. by colonoscopy & endoscopy). If someone had offered me a choice between trying cholestyramine or having an invasive procedure, I sure would have tried it! At the time my mother took it, I remember thinking it was a relatively benign drug (but that might just have been relative to her other medications?).

Truly, congratulations on moving toward healing.

All my best,

Sara

[Kari]

So glad to hear your positive news. Sleepless nights are so very hard to cope with, as it ruins your days as well. I hope that your diagnosis is an accurate one and that you continue to move towards wellness.

Please don't hesitate to continue posting - hearing about people's varying experiences is what makes this board so helpful, as well as interesting. I for one would very much enjoy following your progress through your posting here.

Love,
Kari

[irisheyes13]

I truly hope the cholestyramine works for you and you can begin to get your life back and feel better. It sounds like you are seeing some positive results already and that is great news!

I totally agree with Kari- keep us posted on how you are progressing. Your experience may be able to help others here.

[tex]

Sue,

I'm glad to see that you're finally getting some relief. Certainly, you're most welcome to continue posting here. Many/most digestive system issues are interconnected, (since one problem tends to lead to others), so the more we can learn about any of these issues, the better off we are. The primary strength of this board lies in the fact that we are able to benefit from the experiences of others who are willing to share their insight.

When someone goes to a doctor, and is able to find relief, only that one patient benefits, (well, I suppose the doctor benefits also, since they don't work for free. ) When someone shares their experiences here, however, countless people all over the world may benefit from that information. It may save them from wasting time on a treatment that rarely works, or it may inspire them to try something new. Whatever the case, as we all know, knowledge is power.

Actually, I'm not sure that a colonoscopy and/or upper endoscopy is essential before trying a bile acid sequestrant, because there is really no serious risk in trying it - the most common adverse effect is constipation, which doesn't impose a serious health risk, unless one allows it to continue. Cholestyramine is prescribed every day, for the purpose of lowering cholesterol levels, and that's probably it's most common usage. Typically, it's usually not particularly beneficial for MC, since it does nothing to address the inflammation that causes the syndrome, but like most drugs that doctors prescribe, it can be successfully used to minimize certain symptoms, (primarily D).

Excess bile salts tend to be deposited in all epithelia in the body, and because of that, many people who have excess bile salts typically experience "unexplained" itching, caused by excess bile salts deposited in the skin. Cholestyramine will eliminate that problem, of course.

Thank you for sharing your experience, and please keep us posted on your progress, and/or any other insight. IMO, the most significant fact concerning MC, is the fact that we are all different, so that there is no such thing as a "one-size-fits-all" treatment. As Gabes regularly points out, "there is no right or wrong way to approach your treatment, there is only your way".

Tex

[Pat]

Sue,

As far as I am concerned you are most welcome to post and be a member of this forum. Your story may help someone else! So happy for you that you have found something that gives you relief. YAY!!!!

Pat

[Lila]

I am finally on the road to healing.....

I am hoping that those who are undiagnosed are reading this because it may help them find some answers and some relief....

I am sure many undiagnosed diarrhea sufferers do not know that their D may be caused by bile salts leaking into the intestines. Diet will not cure this - the only thing that will is medication and that medication is either Cholestyramine which is powder form or Welchol (pill form). I know some will say that this is defined as Habba Syndrome - but not all forms of bile leakage are categorized as this syndrome. My Gastroenterologist explained that this is fairly common and is easy to take care of and is not really anything to be alarmed over.

What you will need to do is first have a colonscopy and endoscopy to rule out Celiac, Colitis, IBD, or Crohns disease. Blood work is also necessary and stool samples. If all come back negative - then you may be suffering from Bile Salt leakage or possibly Habba Syndrome or even gallbladder disease. This condition is also very prevalent to those who have had their gallbladders previously removed. Trust me when I tell you it is well worth looking into. I have suffered for months and am finally beginning to see some positive results. I am still thin at 98 lbs. (lost a lot of weight with this) but am hoping to soon put some back on. I did notice that I am not having digestive issues (malaborbtion) and the diarrhea is much, much less than before. I asked the doctor how long I would have to continue the medication - he said probably around a year until everything returns back to the way it should be. I must say - I can now eat many of the foods I had sensitivities and/or intolerances to - which were many.

So if you are really suffering from undiagnosed diarrhea - do look into this.

I hope that I am still welcome to post here - because the members in this forum are the greatest and most supportive people I have ever met! Thanks so much for all your help - it is so very much appreciated!

I know this was almost 3 years ago but I'm just now going to start taking Cholestyramine powder. I've been avoiding it for..... well, I'm not sure why. It just didn't sound right. I'm new, I've had LC for 6 years. Finally learning some of the triggers. Don't know them all yet :( If you're still on the board, or if anyone else is taking the poweder. How much are you taking?

Thanks, this is sooooo overwhelming because I have anxiety and depression issues also. Been on all kinds of those meds but they all seem to aggravate the colitis so now it's just Klonipin when needed. (more than I like)
Lila