What is the first treatment you were given for "IBS&quo

grannyh · Post by **grannyh** » Sat Nov 20, 2010 12:55 pm

When I first became sick 8 years ago.. the first treatment I was given by my family doc was the suggestion for MORE FIBER in my diet and to drink 8 glasses of water a day.

Since there are so many new comers to this site all the time.. was just curious as to how many of us were given this suggestion....

Like most of us I also ran through a gazillion doctors after I first got sick.. and many of the GI docs said the same thing! Took years to find the right doctor and the right diagnosis...

FIBER in NOT my friend!
grannyh

Gabes-Apg · Post by **Gabes-Apg** » Sat Nov 20, 2010 1:31 pm

post bowel surgery number 3, (1995) the surgeon recommended fibre powders twice a day and a high fibre diet.

4 years later when i was first saw a naturopath for IBS i took zinc, cats claw and probiotic's (to help healing and remove inflammation)

When i first had what i know to be MC symptoms (2007) the same naturopath and acupuncurist were treating adrenal fatigue and i was still taking magnesium and zinc.

GRB · Post by **GRB** » Sat Nov 20, 2010 2:54 pm

My family doctor prescribed Bentyl which did help. After I was diagnosed with CC by the GI doctor I've been taking Entocort and only use the Bentyl if I feel something coming on...gurgling or pain.

I've been on Entocort from July of this year and they want me to start tapering next week. They want me to taper fast...down one each week, to see what will happen. I can't wait...not!! I'll be really careful with my diet and hope for the best.

grannyh · Post by **grannyh** » Sat Nov 20, 2010 2:57 pm

GRB, obviously you GI doesn't know there is no medical "cure" for CC. Entocort can control it for some like me.. but it won't cure it.
grannyh

GRB · Post by **GRB** » Sat Nov 20, 2010 3:00 pm

I agree. I tried to relay the information I've learned here but he wants to get me off the med as soon as possible to avoid damage. I guess he thinks that because I've been having 1 Norman a day that my system is 'healed'..*sigh*

grannyh · Post by **grannyh** » Sat Nov 20, 2010 3:15 pm

Took me several years to get to one pill. Wonder how many patients your doctor has with CC and how many are on entocort. I asked my current GI doc how many patients he had with CC.. he had a dozen when I started with him.
grannyh

Kari · Post by **Kari** » Sat Nov 20, 2010 4:38 pm

Hi Grannyh,

The first "treatment" I was given for LC was the "pepto bismol cure" - well, needless to say, "cure" it was not. When I asked the GI for some pointers about what to eat, he said that I should be able to eat anything, that there was no evidence that LC was diet related (grrrrr).

Love,
Kari

grannyh · Post by **grannyh** » Sat Nov 20, 2010 5:30 pm

Kari,
Pepto may have been suggested but never had been able to take it..made me throw up ever since I was a kid.

My GI doc didn't discourage diet.. I told him about this site and he had no problem with whatever I wanted to dabble with since so little is really known about CC. He gave me the entocort once it came back on the market..and told me to do whatever worked:)
grannyh

GRB · Post by **GRB** » Sat Nov 20, 2010 7:24 pm

Well Granny I will go back on Entocort if I need to, we agreed on that. I will also call if I run into trouble...the big D. I've been out of the hospital a little over a month now and I think this is pushing it, especially doing it so fast. We'll see what happens soon enough. I'll have to ask how many MC patients he has next time I'm in touch...in about 2 weeks.

grannyh · Post by **grannyh** » Sat Nov 20, 2010 7:31 pm

I also asked about the medications my GI had the other patients on... asacol, entocort and then the ones used for cancer with big names I don't remember. I did try asacol but if made me dizzy and sick to my stomach and didn't stop the D. Some doctors take offense when you ask questions. I have a friend who asked her doctor for entocort instead of prednisone and he threatened to drop her as a patient (he was head of gastro for a major hospital) and she really had nowhere else to go on her medical plan. The doctor told her HE was the doctor not her friend (me)or the people on this board..and either she took his advice or she was no longer a patient. So be careful how you ask...:)
grannyh

Gloria · Post by **Gloria** » Sat Nov 20, 2010 7:39 pm

Before I had the biopsy to confirm MC, my GI's nurse told me to take fiber supplements. When it didn't help, she said sometimes fiber isn't good for diarrhea.

Once I was Dx'd, they told me to take Peptol Bismol. When I told them that I had a bad reaction to it, they couldn't believe it. I tried a second time to be certain, and I had the same miserable reaction. Then my GI prescribed Entocort. He's never encouraged nor discouraged me from changing my diet.

Gloria

GRB · Post by **GRB** » Sat Nov 20, 2010 7:56 pm

It really pisses me off when doctors drop patients because the patient is being proactive in their own care. It's a shame your friend didn't have any other recourse. I found when I was in the hospital this last time that I had to take control...some had a hard time with it but the truth is that a patient has rights.

I have learned more here among all of you than I could possibly learn elsewhere and the combined experience here more than likely exceeds the doctors. I'm a practical person, I want to feel well and learn how to manage this disease...I'm not about experimenting with meds when I have something that is working for me. However, I will try to follow doctors orders with the knowledge that I can come here for advice and understanding. I hate having diarrhea, hate it...especially when it's uncontrollable. I'm anxious that I'll have to experience more of that in the coming weeks.

I'm frank with my doctors, not rude, but I expect them to work with me when it comes to my care not dictate to me like an authoritarian. It breaks my heart that so many have to suffer for so long before they get the care they need.

BTW Pepto Bismol has always made me sick as well.

hoosier1 · Post by **hoosier1** » Sat Nov 20, 2010 8:52 pm

Grannyh,

Same as you... Eat/drink more fiber. Has always been the worst thing for me.

Bentyl too.

Still use that today in a pinch, but much less effective than it used to be plus I don't like the way it makes we feel light-headed.

Rich

Linda in BC · Post by **Linda in BC** » Sun Nov 21, 2010 12:10 am

For me it was Asacol, first thing, and when I went back to the doctor 2 weeks later and told him I was way worse he said I was one of the "one in 10,000 people" who had a bad reaction to it, and there was nothing else he could do for me. This was in about 1998. Next time I went to a doctor about it ( 5 years later )he recommended pepto, and he also sent me to a dietician ... who said fiber. I do owe the doctor who told me about pepto a lot tho because it changed my life. It finally gave me something that I could use to control the symptoms when I needed to. Before that my life was just plain hell.

Linda

hoosier1 · Post by **hoosier1** » Sun Nov 21, 2010 7:30 am

Linda,

My system is so resistant, I couldn't even find relief from Pepto. I am glad you found a couple tools to put in your toolbox to fight this (Pepto and Entocort). You seem to be doing so well.

Rich