Question on Cholestyramine treatment

[Mackenzie]

Hi Everyone!

I have a question for anyone with experience on Cholestyramine. This can also apply to any medications used for treatment. I have been on it twice a day for about a month now. At first it didn't do much and after about a week I was amazed that I felt so much better. I wasn't having too many bathroom issues after I ate and I generally felt pretty good. As time has passed I am starting to feel like I'm now going in the opposite direction. I have had more cramping lately and I'm going more times a day again. Not as much D as I had before being on it, but some again. My question is has anyone else had this kind of problem on Cholestyramine or any other medication? I'm wondering if it helps and then my body gets used to it or something and then it gradually stops working. That is how it used to be when I would take Immodium daily ( when my old- not great- GI said I had IBS). Again I should mention, my new GI prescribed this before I was diagnosed with MC. I haven't been back to see him yet to go over the plan for treating MC. I'm just trying to get as much info before I go back so I can ask him the correct questions.

Thanks!

[MaggieRedwings]

Morning Mack,

Back in the beginning after Asacol was failing for me - never did a thing and took 12 per day, they put me on Cholestyramine and for about 2 weeks - same as you - it seemed to be helping but then went downhill after that too. I have tried a number of drugs and thought when I got on Entocort the miracle drug had been born for me. Unfortunately, I suffered side effects from it (equiliberium imbalance and falling down) so I had to give it up. Right now I am using diet alone and since I have a number of intolerances, soy included, I had to give up being a vegan and resort to fish and chicken. Extremely hard choice for me but I think it has helped.

Congrats to you on going back to your GI prepared to talk with him and hopefully have him cooperate with whatever course you feel best for yourself.

Love, Maggie

[tex]

Hi Mackenzie,

I've never taken cholestyramine, but I believe that quite a few members have tried it, at one time or another. I believe that Maggie's experience with it is typical. Reflecting back on my memories of what various members have written here, many seemed to initially feel that it was helping,. but I can't recall anyone who found long-term relief by using it. (I could certainly be wrong about that, though, since my memory is far from perfect).

Here's a report based on a study that shows it to be very effective, in combination with mesalazine, (mesalazine is the active ingredient in Asacol, Colazal, Pentasa, Rowasa, Lialda, etc.):

http://cat.inist.fr/?aModele=afficheN&cpsidt=18886951

One has to take some of these "studies" with a grain of salt, however, because they are done by doctors, and doctors, (like most other researchers), have a tendency to see what they want to see, and ignore what they don't want to see in the data. IOW, you can use research to prove just about anything you want to prove, if you are a "good" report writer. As evidence of that, there used to be a report available on the net that claimed that research showed that in around 85% of MC patients, symptoms automatically resolved within a period of approximately 36 months, with or without any treatment. I can't find that report anymore, so maybe someone took it down. Here's a report that is a bit more realistic. It shows remission in about 50% of patients, after treatment with anti-inflammatory meds.

http://www.ncbi.nlm.nih.gov/pubmed/1698 ... d_RVDocSum

Note that we have a far better success rate, on this board, due to the use of more realistic treatment methods.

Tex

[Pat]

Mackenzie,

Cholestyramine only gave me grainy D. No help at all. I seem to have a refractory case of MC. And maybe IBS to boot so I may not be the one to give you any advice, but that is how that med affected me. From what I understand about it, it just thickens the bile. That's probably an over simplification. You really are not treating the disease.

Good Luck!

Pat

[Dee]

Hi Mackenzie,
I need to ask why your GI prescribed the Cholestyramine in the first place??
For the diganosis that he gave you of IBS???
Have you had your gallbladder removed???
I was prescibed it before I got a correct diagnosis of MC.
Before having all the tests done by my GI, I got the "sure sounds like IBS", so I took it for a week, showed some improvement, then it quit working all together.
Alot of people are put on it that have IBS or have had their gallbladder removed and get the bile dumping diarrhea.
I can't remember if anyone on the board has had an success with it as far as MC.

Dee~~~~

[Mackenzie]

Thanks for your help.
Maggie, I'm sorry to hear you had to give up vegan, that had to be difficult.
Tex, thank you for the study information- that is great info to have for my appt with my GI.
Dee, My GI prescribed it at my request. I watch a lot of Medical Mysteries, I know it's funny but I thought I would figure out what was wrong with me on that show. And as it turns out there was an episode where a woman had chronic D, she had incontinence which I don't have but otherwise our symptoms were fairly consistent. Hers were a bit worse, but I know everyone is different. She was diagnosed with Habba Syndrome and after I did some research I found that Cholesyramine is prescribed for that. So I talked to my GI who said that with an intact Gallbladder it can work. Habba Syndrome is basically a malfunctioning gallbladder. So while we were waiting for my colonoscopy and results he let me try it and it seemed to help, so after MC was found he said to stay on it until my followup appt.
Thanks again for your help- we will see what my GI says on the 6th!

[tex]

Mackenzie,

I have some very strong suspicions that Habba Syndrome is a misdiagnosed, (IOW, nonexistent), disease. It appears that when Dr. Habba originally "proposed" Habba Syndrome, he did so without ever ruling out MC. That suggests that, in reality, Habba Syndrome is very likely simply misdiagnosed MC. Please read this past thread, from back in October of this year, and especially the fourth post in the thread, which contains my thoughts on why that is probably true.

http://www.perskyfarms.com/phpBB2/viewt ... a+syndrome

It is true, however, that a high percentage of members here, also have gallbladder issues. MC affects other organs, also, including the pancreas. We have discovered, however, (based on the combined experiences of our membership), that when the symptoms of MC are controlled, the issues with other organs are also usually resolved.

Tex