Hello Everyone! It's been a while since I've been on so I hope everyone is coping well and loving life!
Back in May I had surgery and recuperated well. When I went back to work I was extremely busy to say the least. As I was diagnosed with LC and CC back in April and I've been taking Entocort (9mg daily), Lialda (2.4 gm daily) and lomotil (2x/day) and I also went GF upon diagnosis with my dr's encouragement.
I was doing really well until I was weaning off of the entocort. Two days after I took my last pill I started with a few extra bm's. I wasn't too concerned but then it got worse and thankfully it coincided with an appt with my gi. He had me double up on all of my meds and go back up to the full 9 mg of entocort.(We also discussed Enterolab testing and asked me to forward him the link so we could discuss it at my next appt). It still didn't work and I got extremely dehydrated and wound up in the hospital this past Monday and needed a few bags of fluid through IV. My dr. had me go on a pack of methylprednisone, and a powder to drink 3 x day Cholestryamine. He then wants me to get bloodwork done to see how I would metabolize a drug called 6MP. I'm starting to feel better so I'm hoping that I don't have to go on that.
I'm hoping that everything stabilizes soon - I had almost forgotten how it felt when you were sick with this. It's certainly not fun feeling tired all the time and just plain old not well at all. Fingers crossed that the flare up doesn't come back and that hopefully between my dr and me we can try enterolab and find out if there are any other food sensitivities and be able to get off all of these meds!
I hope everyone is safe out there with the hurricane!
Laura
It sure has been a while
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
It sure has been a while
All things are possible through God.
Hi, Laura,
Sorry to hear you've had a setback. It sounds as though your doc is pretty helpful. I hope you don't have to add more drugs.
If you want to accelerate the food-elimination process, Suspect #2 after gluten is dairy. It's highly likely that dropping it will help... and that the Entocort was kind of protecting you from feeling the lower-grade symptoms from that intolerance (and/or maybe others?), which is very definitely one of its magic powers. After dairy, the odds drop of guessing right what to eliminate - though many of us don't tolerate soy. I am not sure about soy myself, but am avoiding it (and all legumes) because I never want to feel that way again... I know you know what I mean.
It's been a bit of an adventure, eliminating categories of food all at once, but for me was easier than cutting them out one at a time. That exhaustion, dehydration and misery are just the worst. I'm glad you're rebuilding your strength, and hope you're able to taper off Entocort successfully next time. With the Entocort, plus the Lialda and Lomotil, it seems highly likely that there's still a food in your routine that you are reacting to...
Feel better fast,
Sara
Sorry to hear you've had a setback. It sounds as though your doc is pretty helpful. I hope you don't have to add more drugs.
If you want to accelerate the food-elimination process, Suspect #2 after gluten is dairy. It's highly likely that dropping it will help... and that the Entocort was kind of protecting you from feeling the lower-grade symptoms from that intolerance (and/or maybe others?), which is very definitely one of its magic powers. After dairy, the odds drop of guessing right what to eliminate - though many of us don't tolerate soy. I am not sure about soy myself, but am avoiding it (and all legumes) because I never want to feel that way again... I know you know what I mean.
It's been a bit of an adventure, eliminating categories of food all at once, but for me was easier than cutting them out one at a time. That exhaustion, dehydration and misery are just the worst. I'm glad you're rebuilding your strength, and hope you're able to taper off Entocort successfully next time. With the Entocort, plus the Lialda and Lomotil, it seems highly likely that there's still a food in your routine that you are reacting to...
Feel better fast,
Sara
Hi Laura,
You've experienced the good and the bad of Entocort. Entocort is wonderful when it allows us to get our lives back. It's very easy to think we've conquered MC while we're on it, but in most cases, Entocort has carried almost the full burden of keeping us in remission. It's an up and down experience; I've been through it many times.
Sara has given you some excellent advice about potential food intolerances. The best way to use Entocort is to see it as your partner in determining intolerances. It's best to take your time going off of it so that you can better determine problematic foods at lower levels. Most of us find that we need to stay on it for 6 months to a year.
Your GI sounds like he's pretty understanding about the role gluten plays, but he may not realize that most of us have several other intolerances or irritants in addition. Enterolab can help you determine some of the most common intolerances and is a good start.
Gloria
You've experienced the good and the bad of Entocort. Entocort is wonderful when it allows us to get our lives back. It's very easy to think we've conquered MC while we're on it, but in most cases, Entocort has carried almost the full burden of keeping us in remission. It's an up and down experience; I've been through it many times.
Sara has given you some excellent advice about potential food intolerances. The best way to use Entocort is to see it as your partner in determining intolerances. It's best to take your time going off of it so that you can better determine problematic foods at lower levels. Most of us find that we need to stay on it for 6 months to a year.
Your GI sounds like he's pretty understanding about the role gluten plays, but he may not realize that most of us have several other intolerances or irritants in addition. Enterolab can help you determine some of the most common intolerances and is a good start.
Gloria
You never know what you can do until you have to do it.
Thanks for your replies and insights! Hopefully I'll get the testing done and find a way to manage this blasted MC with diet and meds only on occasion. I think I may try taking the dairy out and see if that makes a difference. That will be a hard one to say the least. I do love good cheese!!
I hope all is well. My power is out at home due to Irene so I have to make this short at work!
Laura
I hope all is well. My power is out at home due to Irene so I have to make this short at work!
Laura
All things are possible through God.