What next?? Seems like progress is non-existant
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi DebE. I just wanted to ask if you have ever tried the Pepto treatment? it doesn't seem like the Entocort is helping much and you have been on it a long time. If you haven't, you might want to go get some chewables and see if it helps. Unlike Entocort, it does actually help heal the intestines. It could help you through this tough time. Just a thought.
Leah
Leah
Hi Deb,
I'm sorry that you are struggling right now although I get it. You've gotten some very good advice on coping and letting go. It's true that this disease has also helped me set priorities and I've set limits on how much energy I'm willing to expend on issues (which includes other people's demands, especially at work). My job is not to make everyone happy but to do the right thing for the kids I serve and I've learned not to sweat it if others have a hard time with that. It's not my goal that everyone like me either. It's a liberating attitude to have.
I also have a daughter in college to the tune of 20K a year. I feel your pain there. We've pieced it together with savings, scholarships, cash and loans. I have no miracle advice for college expenses.
As far as practical advice, I agree with what Leah said, you might try the Pepto strategy. It didn't necessarily do much for me but it has worked for others. If you don't want to go to 6mg on Entocort while you are under so much stress at work, you might want to try Claritin to see if it reduces any inflammation too. Also, there have been times recently that I've had to drop back to my baseline diet-- no caffeine, low sugar, low fiber, low fat, low acid, and easy to digest foods like baked chicken and soft cooked vegetables--- until the stressful time passes. It helps. No doubt we seem to have extra sensitive guts and any mental change is reflected there. You didn't mention Imodium to slow down the motility but I'm guessing you've tried it too. It might be a combination of things that get you through the rough patches. And of course, extra sleep anytime you can get it. Going to bed early 2-3 nights in a row, along with an increase in my amitriptyline has warded off some rough days for me, I'm sure, because I know what happens if I don't do those things.
Please cut yourself some slack at home and work, and make time to renew your strength and your spirit like Gabes and others have suggested.
Carol
I'm sorry that you are struggling right now although I get it. You've gotten some very good advice on coping and letting go. It's true that this disease has also helped me set priorities and I've set limits on how much energy I'm willing to expend on issues (which includes other people's demands, especially at work). My job is not to make everyone happy but to do the right thing for the kids I serve and I've learned not to sweat it if others have a hard time with that. It's not my goal that everyone like me either. It's a liberating attitude to have.
I also have a daughter in college to the tune of 20K a year. I feel your pain there. We've pieced it together with savings, scholarships, cash and loans. I have no miracle advice for college expenses.
As far as practical advice, I agree with what Leah said, you might try the Pepto strategy. It didn't necessarily do much for me but it has worked for others. If you don't want to go to 6mg on Entocort while you are under so much stress at work, you might want to try Claritin to see if it reduces any inflammation too. Also, there have been times recently that I've had to drop back to my baseline diet-- no caffeine, low sugar, low fiber, low fat, low acid, and easy to digest foods like baked chicken and soft cooked vegetables--- until the stressful time passes. It helps. No doubt we seem to have extra sensitive guts and any mental change is reflected there. You didn't mention Imodium to slow down the motility but I'm guessing you've tried it too. It might be a combination of things that get you through the rough patches. And of course, extra sleep anytime you can get it. Going to bed early 2-3 nights in a row, along with an increase in my amitriptyline has warded off some rough days for me, I'm sure, because I know what happens if I don't do those things.
Please cut yourself some slack at home and work, and make time to renew your strength and your spirit like Gabes and others have suggested.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Deb,
I'm wondering if you maintain a food/poop diary. If you have Normans sometimes, then sometimes your plan is working for you. A food/poop diary would help you see what you ate to get those Norman days.
I was on 9 mg. of Entocort for several months without seeing Normans. I finally decided to add 1/2 Imodium to my daily routine and suddenly Norman appeared and I was able to reduce the dosage some. It's just a suggestion and perhaps you've already tried Imodium, but if not, it could help. It usually takes a few days for me to see the results.
The goal of being on medication for MC should always be to get to the point that we have some good and some bad days so that we can learn what is working and what is hurting us.
I hope you can find that balance and begin to progress.
Gloria
I'm wondering if you maintain a food/poop diary. If you have Normans sometimes, then sometimes your plan is working for you. A food/poop diary would help you see what you ate to get those Norman days.
I was on 9 mg. of Entocort for several months without seeing Normans. I finally decided to add 1/2 Imodium to my daily routine and suddenly Norman appeared and I was able to reduce the dosage some. It's just a suggestion and perhaps you've already tried Imodium, but if not, it could help. It usually takes a few days for me to see the results.
The goal of being on medication for MC should always be to get to the point that we have some good and some bad days so that we can learn what is working and what is hurting us.
I hope you can find that balance and begin to progress.
Gloria
You never know what you can do until you have to do it.