Today Is My Appt.

[Canadian Karen]

I go back to see the doctor today to start treatment for the collagenous colitis. My appt. is for 4:30 p.m. I will post how it goes....

Everyone wish me luck, please.......

Thanks!

Karen

[Guest cowboy]

I'll make you a deal... I will wish you luck and send positive thoughts your way, and in turn you send them my way on Nov 12. My wife goes in for her biopsy that day.

Best of Luck.

[Canadian Karen]

That's a deal. November 12th is marked on my calendar to send good thoughts you wife's way!!!

Thanks!

Karen

[3boyzmom]

Karen,

I just said a prayer for you and your doctors.

God Bless!

[Guest gillian502]

Karen,

I also have this condition and will send good thoughts your way. I'm very curious what line of treatment your doctor will suggest, since I have not had good luck with my treatment options. I'm at the point now where it's come down to steroids, and I haven't made that decision yet. Let me know what your dr. says!

Gillian

[Canadian Karen]

Hi,

Well, here's the scoop:

He has decided to start treatment with the least toxic, working our way upward to the most toxic.

He has started me on 2 tablets of Pepto-Bismol four times a day for 8 weeks. If that doesn't work, he will start me on Bodesonide (a mild steriod) which would be 3 times a day. If that doesn't work, then we go with the Prednisone.

He drew me a chart that basically says:

70% of people with collagenous colitis respond favourably to the bismuth treatment. Of those 70%, only 35% stay well, the rest it is recurrent. The 30% who don't respond or bismuth and the rest who are recurrent, move onto the Bodesonide treatment. Of those on the Bodesonide treatment, 70% of people respond to this treatment. Again, 35% stay well, the rest again is recurrent. Of those who don't respond to Bodesonide or are recurrent, move onto Prednisone.

He did mention that he has a collagenous colitis patient that he is treating with a low dose of Bodesonide (1 pill a day) over a long period of time (that is continued after the 3 pill a day regimen), and so far has been successful with no side effects to the drug.

So we shall see. I do have some hope that this might be a light at the end of the tunnel for me and eventually we will find a treatment that works for me. It is now 3:30 a.m. and as usual, my bowels are fully awake and working overtime which keeps me up half the night every night (apparently, quite often this disease is nocturnal..... I can attest to that....)

An interesting note: He told me the most famous person he knows of that has collagenous colitis is Marcia Clarke (the prosecutor in OJ Simpson's trial). The doctor who diagnosed her is a dr. he knows.... Apparently, she kept going to her regular doctor with watery diarrhea, and he said it was stress and that she should go get her hair done or something to relieve the stress!!! She pursued it further and got into see a specialist who finally diagnosed her with the collagenous colitis.....

I do hope it doesn't go as far as the prednisone, I really don't want to go down that road......

Have a great day!

Karen

[Guest gillian502]

Hi Karen

yep, that sounds like the regular course of treatment. I never did try the Pepto therapy, I skipped right to drugs like Azulfidine and Asacol, which are a little less strong than Budesonide, although I'm now considering that. One problem, though...only AstraZeneca makes Budesonide as far as I know, and it is not gluten-free at this time. I'm debating taking it or not. The company says they have been researching it for a year and still do not know its gluten status, and can't say yes or no about the gluten issue. If it comes to that, will you still take it knowing it can't be guaranteed gluten-free? I'm having a hard time making this desicion, and was going to ask what others would do.

gillian