Help please, new to all of this

crranch · Post by **crranch** » Thu Feb 21, 2008 5:36 pm

Hello all,

After 10 years of Rick being told that he has severe IBS, and no treatment or allergy testing showing anything, I found your site, and this sounds exactly like his issues. Following the use of multiple NSAID's for a back injury, the IBS started, and has only gotten worse. We are now doing a GF diet, and we have found that he is intolerant to soy and barley. After reading this, we are going to take dairy out of the mix, add in bismuth therapy.My question to you all is, does anyone have any experience with Cholestyramine? He tried it about a year ago, and it did work for about 2 weeks, but that was before we started taking certain foods out of his diet. Before we dive in using steroids, I'm just curious if anyone thinks that trying it again, along with the bismuth might be worth a shot? Or do we just start with steroids and hope for the best. Thanks in advance.

Carrie

starfire · Post by **starfire** » Thu Feb 21, 2008 6:36 pm

Carrie and Rick too

I'm sure you will find lots of valuable information that will help with Rick's treatment. There are several people on this board who are extremely knowledgeable. Please look around, read as much as possible and ask questions.

Glad you found us.

Shirley

crranch · Post by **crranch** » Thu Feb 21, 2008 6:40 pm

Thanks Shirley,

I'm reading other post this very moment....learning more and more about this, thanks God I found you all. We were starting to feel like all the doctors around here just think it is all in Rick's head. The last 4 GI doc's have told him that they couldn't help him, just go home and live with it. Easy for them to say....

Carrie

Post by **tex** » Thu Feb 21, 2008 7:12 pm

Hi Carrie,

Welcome to the board. Often, IBS is the diagnosis handed out if the GI doc does not take biopsies during a colonoscopy exam, since the symptoms of IBS and MC are rather similar. NSAIDS are one of the known triggers for MC, so I would suspect that there is a very good chance that he has MC, rather than IBS.

As you may know, cholestramine is a bile acid sequestrant, and it is sometimes helpful following gallbladder removal. Several members here have tried it, but I'm not aware that anyone was able to achieve remission of their MC symptoms by using it.

Here is a past discussion about bile acids. There are two links because the discussion was continued into the second link:

http://www.perskyfarms.com/phpBB2/viewt ... estyramine

http://www.perskyfarms.com/phpBB2/viewt ... estyramine

For most people, a diet that excludes all of their food intolerances will bring relief of symptoms. For a small percentage of severe cases, a corticosteroid is also needed, in order to achieve remission. Entocort is usually the most practical medication to use, though a few GI docs prescribe Prednisone, which has more side effects, and carries an increased risk of drug dependency. Usually, the dosage rate of the medication can be slowly diminished after remission is achieved, and for most MCers, it can be completely eliminated, and remission maintained on diet alone. Of course, some members prefer to continue to take a med, and not stay on a strict diet, but often they have be careful to restrict certain foods in their diet, anyway.

Tex

P S You may have noticed that this is an ad-fee site, and of course, discussion board admins and moderators have to constantly be on the lookout for spammers. Please don't be offended, but to be honest, the user name you selected, looks so much like a plug for a website, that I almost deleted your membership without reading your post. I'm glad I didn't. Would it be asking too much to ask that you change it to something that doesn't look like a plug for a website? Just dropping the "Online" part would make me a happy camper. That way we won't be sending the wrong signal to all the spammers out there. LOL. You can change it in your profile. Normally, user names cannot be changed, but I have activated an option that will allow you to change it. Thanks.

Dee · Post by **Dee** » Thu Feb 21, 2008 7:19 pm

Hi Carrie!
Glad that you found this site as it has a wealth of information.
Has Rick had a colonoscopy with biopsies???? Does he have a GI doc? I just have never bought the diagnosis of IBS!!!!!!!!!
The Chloestyramine (Questran) I tried it long ago before being diagnosed with MC.. It works very well for people that have had their gallbladders out and end up with the bile dumping D... It only worked for me for a short time and I had to watch because it would bind to other prescribed meds that I was on.. Gotta watch the Pepto as it can become toxic
My saving grace was Entocort, it works directly in the gut. Because I refused to take Pred because of the horror stories that I've read about it's side effects.
I'm sure Tex, and others will be along and you will find that you'll get the best answers from people here!! Provide us with some more details and ask all knds of questions....
Welcome!!

Dee

crranch · Post by **crranch** » Thu Feb 21, 2008 7:25 pm

Thanks for all the great information, I'm still wading through all of it right now. The very first GI doc that Rick went to did a colonoscopy and told us that it looked "normal" and didn't see anything worth a biopsy. But told us he took one anyway and it came back "normal" This was almost 9 years ago, and we have not found another GI doc that would do a follow up one. Back to the problem of they think it's "just IBS" One more question please, I have been reading about Enterolab, and we are tossing around that as an option, have you had good results with them? Rick had the basic allergy panel run via blood test, and it came back negative for any allergies for the big 8 allergans, but we have proven that he has an issue with soy, so I don't think that panel told us everything we need to know.

Carrie

Very sorry about the username, didn't mean to offend anyone, it is what I use for other web forums and because of a old brain injury, I still have trouble with memory, and it is easy for me to remember just one username, I will change it right now.

crranch · Post by **crranch** » Thu Feb 21, 2008 7:33 pm

Hi Dee,

Thanks for the feedback on cholestyramine, and I have already marked it on the calender that Rick has to be off of the bismuth in 8 weeks. I know what you mean about Pred. I was given numerous injections of it over the years, and it has nothing but bad side effects, for me at least. When my doc has wanted me to take it for my asthma, I told her when I turn blue, I'll think about it....lol

I am reading up on Entocort right now, sounds much safer in the long run than Pred. That maybe our next option.

Carrie

Post by **tex** » Thu Feb 21, 2008 8:21 pm

Carrie,

We have had excellent results with the tests at Enterolab. You can rely on them, (unlike the blood tests). You won't get false positives, and false negatives are extremely rare. Also, they usually keep the samples for roughly a year, so that if you should want to test for another item at a later date, (in less than a year), you can do so without submitting another sample.

Tex

P S I was pretty sure that you didn't mean to imply the wrong thing with that username, it's just that spammers can be so aggravating on these boards that we admins sometimes get paranoid about them. Don't sweat any memory problems - you're in good company here. Forgetfulness seems to be a way of life for most of us. LOL.

P P S Concerning asthma: When I was a kid, I had asthma pretty bad. In fact, one night when I was in my early teens, a shot of cortisone saved my life, (I was turning blue). Fortunately, doctors still made house calls back in those days. Anyway, I "outgrew" the asthma when I reached my 20s, and it turned into hay fever. Somewhere in my fifth decade, the hay fever disappeared, and my MC symptoms began to appear. It seems that for me, at least, anytime I think that I'm finally getting rid of an allergy, I get hit with something else just as bad, or worse.

crranch · Post by **crranch** » Thu Feb 21, 2008 8:36 pm

Thanks Sweetheart,

To bad our insurance won't pay for it, but I'm getting ready to sell one of my Dexter cows, that could pay for Rick's testing...

I have already emailed our Dr. about getting Rick a prescription for entocort, and I see Enterolab in our future also. Does the stool testing show food intolerances also? Since the blood test were a big goose egg, I wondered if Rick just has an intolerance, or was it just a fase negative result?

I hear you about the getting hit with things, I was a barrel racer and dog trainer until a bad horse wreck left me with DJD, brain injury and having to use a service dog. But as my sister who suffers from lupus says, " don't cry because it's over, smile because it happened." I lived the first 40 years pushing the envelope, now it's time to slow down a little. My saving grace is the 97 lb Catahoula leopard dog service dog who helps me take care of all the stock and keeps me safe in crowds..., so even though I can't race anymore, I can still have my beloved horses.

Carrie

Post by **tex** » Thu Feb 21, 2008 11:23 pm

Well, I've lived on a farm all my life, but I have to confess that I had to look up Dexter cows, to see what the heck they were - never heard of them down here in Central Texas. I learn something new on this board every day.

The blood tests are notorious for false negatives. Many of us here are severely gluten sensitive, but the only ones who have ever tested positive to one of the blood tests, are the members who also have full-blown celiac sprue. Even some celiacs do not get a positive test result with the blood tests.

The stool tests are specifically designed for detecting food intolerances, and they're very sensitive. Even a typical full-blown celiac does not produce enough antibodies to gluten, to be detected reliably by a classic blood test for more than a month of two after gluten is withdrawn from the diet. Using stool testing, however, gluten antibodies can be reliably detected for up to a year after gluten is withdrawn from the diet.

Sorry to hear about the horse wreck - it sounds as though you've had quite an active past, and even though you've had to shift gears, you're still enjoying a similar lifestyle. I agree with your sister. Hopes and memories define our future and our past - and the way that we relate to them, defines who we are, and how others see us, and most importantly, how much enjoyment we get out of life.

May that enjoyment never end.

Tex

crranch · Post by **crranch** » Fri Feb 22, 2008 12:11 am

Thanks again for all the info, we will be looking into Enterolab just as soon as we can.

Carrie

PS: The reason I have Dexter's is their size and temperment, people who are gimps shouldn't play with full size cattle.

mle_ii · Post by **mle_ii** » Fri Feb 22, 2008 12:12 pm

I had blood tests for food allergies and it showed a response to Gluten and the other related grains except it didn't show for barley which was strange. FWIW it was an Igg blood test. Though I'm still not sure that I would tell others to get an Igg blood test for allergies.

I also had the entorlab testing which showed the same thing. This testing was done before the Igg blood test.

The skin prick test done by alergists showed now response except to histamines, which is normal. Didn't find it usefull at all, other than knowing I didn't have classic allergy reactions to ANYTHING which is good. :)

Oh, and I was diagnosed with IBS until I had a colonoscopy with a biopsy. I rencently had a second test which showed no inflamation anymore.

Thanks,
Mike

crranch · Post by **crranch** » Fri Feb 22, 2008 12:21 pm

Hi Mike,

I've been doing more reading today and am shocked by the number of people who were mis-diagnosed with IBS. Considering that Rick has been to at least 7 different Dr's, and not one of them ever mentioned microscopic colitis as a possible cause of his issues, just makes me even more thankful that I found you all.

We cancelled an appointment with an allergy clinic in Tulsa, that was going to do yet more allergy testing via blood test and will be sending samples to Enterolab instead. Hopefully we will get some answers from them.

Carrie

Pat · Post by **Pat** » Fri Feb 22, 2008 6:34 pm

Carrie,
I was misdiagnosed with IBS over 8 years ago. At that time I even had the colonoscoy with biopsies. My doctor chose to not tell me that the pathologist report was MC. I don' think he knew what to do with it. He was a gastroenterologist. He retired, I got a new doctor and finally got the correct diagnosis. If you get the dx please don't let them give Rick any antibiotics without testing him first. (I'm partial to Rick, that's my husband's name, and it looks like you are from Ok, my old stomping ground from a long time ago) They gave me antibiotics and made me worse. You can get a hydrogen breath test to test for bacterial overgrowth. If it is then take the antibiotics. (Mike can tell you all about that.) I did have the Enterolab testing. Even my new doctor was on board about that. He is the third one in the last year. This is very common. Most doctors don't know much about treating MC. Good luck! I hope diet alone does the trick for you!

Pat

crranch · Post by **crranch** » Fri Feb 22, 2008 6:48 pm

Hi Pat,

I'm partial to that Rick name too,

been together for over 25 years..what neck of the woods in Oklahoma were you from? Our ranch is east of Tulsa.

Considering that one of the IBS treatments was a run of some high powered antibiotic, no wonder we have had no luck with this. Seems like every treatment the Dr's tried was actually doing more harm than good.

Carrie