On the Road to Healing

[Catarific]

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

I am hoping the undiagnosed club is 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!:kiss:

 

[Jennifer]

Huh... cholesterol medicine for diarrhea, who would of thought? Interesting. I am curious if it continues to work for you. Of course you're welcome to stay here. This site is not strictly for those who suffer from IBD but for those who are friends, family members of those who do or anyone with any gastro issue.

 

[Cat-a-Tonic]

Hi Catarific, glad to hear you've been diagnosed. So which test was it that finally diagnosed you? Or was it just a matter of ruling everything else out? Would it have shown up on a blood test? (I just had a blood test for my gall bladder and I also had an upper abdominal ultrasound to check it, and both results came back fine.) As you know I'm undiagnosed, but my GI and GP both think I probably have some form of IBD, as my symptoms fit and I respond well to steroids such as prednisone and Entocort. Did your doctor ever try you on steroids to see if you responded to them?

 

[allieinwonder]

I'm glad you are on the mend! That is great that is was an issue that was easy to solve and fairly simple!

I am wondering the same thing as Cat, how was this figured out? I suffer from lots of D, but it isn't as watery as most people go through...just 8-12 loose stools a day. One or two a day will be super watery, and I limit my fluid intake to where it isn't as bad. I've also had this for 6 years, so I don't think this is my problem, but I will definitely look into it.

 

[Catarific]

Mine was just ruling out and trying this. This method is a lot less severe than steroids. I guess if this did not work - then maybe the next thing would be steroids. From what I described - did fit into diagnosing it. I did not have watery diarrhea - mostly soft or sometimes hard but going all the time. No matter what I tried - giving up gluten - giving up fats - giving up grains - giving up fruit - no matter what I did - nothing worked. Probiotics did not work either. I have had IBS C all my life - but this was totally different than what I had before. This would not show up on a blood test - nor would it show up on a test for gall bladder. I guess when all my results came back spotless - I saw the labs and biopsy results - totally clear - not even a polyp - he figured something has to be causing this and he said he has treated many patients with this type of problem. The reason he makes you go through all the tests is because if you have something very serious - this will not help - and who knows - it might even make it worse.

 

[tiloah]

I am so glad to hear you are "on the road."

 

[KaLa]

Yeah!!! It's so great when you find something that works for you!

 

[allieinwonder]

Wow, I'm surprised your GI didn't just say "its just IBS"! I am so glad they thought of other reasons on got you your answer fairly quickly. When my digestive issues were first diagnosed as IBS-C about 6 years ago, and just like you everything has changed and I am dealing with TONS of other symptoms. What other symptoms are you going through? Did you have any kind of abdomen pain? I'm only asking since our stories are so similar, and I am wondering if I should bring this up to my GI is my SBFT and pill cam come back normal.

 

[Catarific]

Allie - I would have cramping and some aches - usually right below my breasts. The pain was not so severe that I was doubled over - but it was there. Sometimes it felt like indigestion - or heartburn but was always followed by either watery diarrhea, soft diarrhea or a hard bm. Once this passed, the cramping and pain would subside. Sometimes though, I would have this on and off during the day - but the feeling would subside once I went to the bathroom. There were many times that I would get the urge to have to go right away - but again - it was not always diarrhea - sometimes it was just a regular bowel movement that had urgency and repeatedly throughout the day.

When this first began - last September (2010), I woke up in the middle of the night with severe back pain, stomach ache, and explosive diarrhea with pus or fat (not sure which), which lasted for a couple of weeks. I thought it was food poisoning. No matter what safe foods I had used for diarrhea - none worked - actually made it worse - Gatoraid, crackers, rice, bread, banannas, applesauce, dried toast - nothing worked.

Finally, the severe symptoms subsided - and I then went and had a bunch of tests done - bloodwork - stool samples - to test for parasites, bacterial infections, celiac disease, etc. - all came back negative. Although the severe symptoms subsided, I still was not back to "normal." I tried a gluten free diet - and gave up all dairy - soy - sweets - potatoes, vegetables, etc. - but still had the soft diarrhea every day - usually multiple times - or sometimes watery - then later on - sometimes hard - but going all the time with accompanying cramps until elimination.

My doctor insisted that I get a colonoscopy (I needed one anyway - it was a long time due) and I then asked for him to do the endoscopy at the same time - to rule out - Celiac (bloodwork can have a false negative). I sort of knew that it probably was not that - because if it were - eliminating gluten should have shown an improvement - which it did not.

As I said - all my tests came back pristine - not a problem at all. I asked for copies of my reports - read them myself and gave a copy to my primary care physician as well who said - nothing showed up at all. My gastroenterologist said there is a technical name for this - but most call it IBS D for convenience sake. I asked if this were Habba Syndrome - he said no but it probably was the bile duct salt being released into the intestines causing the problem. He prescribed the Cholestyramine (Questran - powder form). I did follow up and told him I was seeing some relief. I suppose if I told him it was not working, he would have prescribed something stronger (steroids).

He went this route because I do not suffer from pain or vomiting. What little pain I have had is always relieved by a bowel movement. He did say I would probably need to take this medication for about a year or more - and that it takes a long time to get back to "normal." I am to see him again in 6 months.

Just an aside - it seems that the medication works good during the day - but at night I still wake up - not with diarrhea - but with having to go to the bathroom - but usually only 1 time rather than many times. The doctor did say that I could add more powder to the mix if I needed to. He also said that if the mixture seemed to cause constipation - reducing the amount would be okay too. Also - some of the food intolerances have gone - but not all - he said that would take time - and to not rush to going back to the way I ate before. I can now eat potatoes - but I cannot eat chocolate yet - I tried - so I know - to still avoid that.... But with time and healing - most of the intolerances should subside.

 

[StarGirrrrl]

I am so happy things are getting sorted for you! If my bloods weren't showing persistent inflammation which was picked up by a WBC scan (and it was positive, but GI decided after 1 year it wasn't, only after other normal tests) I would be tempted to raise this possibility