Diet, Remicade, and dealing with the bleeding
I got an email from Lisa asking me about some of my experiences with diet, Remicade, and dealing with the bleeding.
Here is my response:
---------------------------------
Hi Lisa,
Nice to hear about your story. You are the first person I have ever talked to with UC.
I see people at the infusion center, but they have walls between us, so I don’t get to talk to anyone.
Let me put you at ease a little. Remicade is nothing.
I’m used to the IV now and I actually enjoy my infusions since I get to watch TV for 3 hours without guilt.
It’s been 3 years and I have never seen a side effect.
If you’re as lucky as I was, you will get to taper off prednisone very soon.
One warning.. the first time I tried to taper off prednisone (before remicade) I went too fast and ended up in the hospital.
My mistake was assuming that all the “side effects” were from the colitis and they were actually from the lack of prednisone.
The taper the 2nd time was easier since I had remicade to help.
I’m currently on Remicade, Imuran and Lialda. I was on just Remicade and Imuran for about 18 months and then the colitis would get worse in weeks 7 and 8.
(My infusion is every 8 weeks).
One doc tried to up my dose of Remicade (That cost my insurance an extra $2000/dose) and that did nothing.
I changed doctors and then new one put me back on the original dose of Remicade and added Asacol and I changed over to Lialda later.
That seems to have worked great. I was on Asacol before remicade, but dropped it at one point since Remicade was working very well.
Diet:
I love food, so I can’t seems to test some of the diets that people write about, but I do know what some foods do to me.
I tried a few things and this was what I found for me:
Normal coffee and espresso drinks set me off, but nothing bad, just a trip to the bathroom or 2. I only drink Starbucks if I’m near a restroom.
I tried switching to soy and that seems to be safer, but I think that the chocolate can set me off too.
Meals usually too if I eat a lot.
I don’t drink beer anymore, too many meds and it makes me feel like I need to use the bathroom when I don't.
Spicy foods seem to have no negative effects.
When I’m driving and I need “safe food” that will not send me in a panic attack looking for a bathroom on the freeway, I usually get a basic hamburger at McDonalds or Burger King. They seem to have no effect on my UC.
I used to have panic attacks on the freeway during traffic jams in Seattle, but I’m better now so that doesn’t happen.
When it was a problem I used to take a low dose of Paxil for it and it really helped with the anxiety.
At random I have “bad days” when I will have cramps and lots of visits to the bathroom. Like 10-15 over 12 hours. A hot bath seems to calm the cramps.
Before remicade I had “bad days” all the time, now it’s less than once a week. I have NEVER been in remission, I just have good days.
I also learned that fiber supplements are my enemy. Anything that “bulks up” my stool will tear me apart when it move through my Colin.
Blood:
Don’t worry about it. Get used to it, it’s normal for us.
Before I was diagnosed I was without insurance and I was just dealing with it with changes to my diet, like almost not eating! (and that failed to help).
I was bleeding BIG TIME. I remember one night it was so bad that the blood was just flowing like someone stabbed me, I was passing nothing but blood and I used some anti-hemorrhoid stuff to stop the bleeding thank god. Scared the hell out of me and I called a Dr. after that.
Even now that I’m getting by much better, I still see blood. It’s just will not go away. Another sign that I’m not in remission.
A few days after you get your remicade, let me know how you feel.
Everyone needs a support group.
Good Luck!
Ed Hammond
Here is my response:
---------------------------------
Hi Lisa,
Nice to hear about your story. You are the first person I have ever talked to with UC.
I see people at the infusion center, but they have walls between us, so I don’t get to talk to anyone.
Let me put you at ease a little. Remicade is nothing.
I’m used to the IV now and I actually enjoy my infusions since I get to watch TV for 3 hours without guilt.
It’s been 3 years and I have never seen a side effect.
If you’re as lucky as I was, you will get to taper off prednisone very soon.
One warning.. the first time I tried to taper off prednisone (before remicade) I went too fast and ended up in the hospital.
My mistake was assuming that all the “side effects” were from the colitis and they were actually from the lack of prednisone.
The taper the 2nd time was easier since I had remicade to help.
I’m currently on Remicade, Imuran and Lialda. I was on just Remicade and Imuran for about 18 months and then the colitis would get worse in weeks 7 and 8.
(My infusion is every 8 weeks).
One doc tried to up my dose of Remicade (That cost my insurance an extra $2000/dose) and that did nothing.
I changed doctors and then new one put me back on the original dose of Remicade and added Asacol and I changed over to Lialda later.
That seems to have worked great. I was on Asacol before remicade, but dropped it at one point since Remicade was working very well.
Diet:
I love food, so I can’t seems to test some of the diets that people write about, but I do know what some foods do to me.
I tried a few things and this was what I found for me:
Normal coffee and espresso drinks set me off, but nothing bad, just a trip to the bathroom or 2. I only drink Starbucks if I’m near a restroom.
I tried switching to soy and that seems to be safer, but I think that the chocolate can set me off too.
Meals usually too if I eat a lot.
I don’t drink beer anymore, too many meds and it makes me feel like I need to use the bathroom when I don't.
Spicy foods seem to have no negative effects.
When I’m driving and I need “safe food” that will not send me in a panic attack looking for a bathroom on the freeway, I usually get a basic hamburger at McDonalds or Burger King. They seem to have no effect on my UC.
I used to have panic attacks on the freeway during traffic jams in Seattle, but I’m better now so that doesn’t happen.
When it was a problem I used to take a low dose of Paxil for it and it really helped with the anxiety.
At random I have “bad days” when I will have cramps and lots of visits to the bathroom. Like 10-15 over 12 hours. A hot bath seems to calm the cramps.
Before remicade I had “bad days” all the time, now it’s less than once a week. I have NEVER been in remission, I just have good days.
I also learned that fiber supplements are my enemy. Anything that “bulks up” my stool will tear me apart when it move through my Colin.
Blood:
Don’t worry about it. Get used to it, it’s normal for us.
Before I was diagnosed I was without insurance and I was just dealing with it with changes to my diet, like almost not eating! (and that failed to help).
I was bleeding BIG TIME. I remember one night it was so bad that the blood was just flowing like someone stabbed me, I was passing nothing but blood and I used some anti-hemorrhoid stuff to stop the bleeding thank god. Scared the hell out of me and I called a Dr. after that.
Even now that I’m getting by much better, I still see blood. It’s just will not go away. Another sign that I’m not in remission.
A few days after you get your remicade, let me know how you feel.
Everyone needs a support group.
Good Luck!
Ed Hammond
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