Joe,
Did you mean Large Bowel? I thought Entocort was focused on the small bowel and the beginning of the large bowel. I want a drug to just blanket my entire GI system for a while. Now, how can I convince my docs, who do not live in my skin, to prescribe this? Or, perhaps, do I dare self medicate? I just want to feel normal for a short while. That will motivate me. And if prednisone increases my appetite, all the better.
Sorry about your stress, Joe. I am having that kind of week too. And the irony is, it really isn't a tough weak for me relatively speaking (at least intellectually). My biggest stressor is being gone from Sunday through Saturday. It just seems like this week will never end. Plus, I am in a lab all week, on my feet 9 hours/day. Sounds simple, but standing all week is really pretty taxing.
I am getting bitter and I really don't like that side of me. I think I feel this way because my reserves are low.
Rich
For Rich, And Anyone Else Who Feels Frustrated
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Rich I think you are right the Entocort treats the terminal ilium (last part of the SB) and the colon (LB) but it does not effectively provide treatment for the middle portion of the SB or the stomach. The stress is just programmatic stuff and will settle down within a few months.
You certainly are not getting bitter, just ranting a bit, which is needed for sanity from time to time. This is a frustrating and taxing disease.
I am impressed that you can put in as many hours as you do. I'm struggling at the moment to keep up an 8 hour day. Never mind all the travel that you have to put in...
I know with your travel that eating can be a real issue, what is your confidence in being able to avoid gluten and soy?
I would caution about self medicating with prednisone. While this is possible with some knowledge, corticosteroids can cause real problems if not properly managed and really should only be used for short time periods.
Rich what other meds has your doctor discussed with you?
Hang in there Rich, this journey is a real roller-coaster at times.
--Joe
You certainly are not getting bitter, just ranting a bit, which is needed for sanity from time to time. This is a frustrating and taxing disease.
I am impressed that you can put in as many hours as you do. I'm struggling at the moment to keep up an 8 hour day. Never mind all the travel that you have to put in...
I know with your travel that eating can be a real issue, what is your confidence in being able to avoid gluten and soy?
I would caution about self medicating with prednisone. While this is possible with some knowledge, corticosteroids can cause real problems if not properly managed and really should only be used for short time periods.
Rich what other meds has your doctor discussed with you?
Hang in there Rich, this journey is a real roller-coaster at times.
--Joe
Joe
Joe,
I appreciate your admiration but I don't deserve it, honestly. I, like you, am just doing what I need to do. I am not trying to be humble, just honest.
This knocked me on my butt when I was in Atlanta pre-diagnosis, and I now live in fear of a repeat event 1,000 miles from home.
I keep going over in my mind if I should be doing something else, but then I think about ALL of my corporate clients who are being micro-managed to death, and I think I am still in the best spot I can be in. In fact, I am seriously thinking about writing a book about the micro-management epidemic sweeping the country. I think it would make Oprah's list :)
I have brought on another engineer, and I am working as hard as I can to get him up to speed, but my biggest problem still revolves around particular clients calling for me. And I cannot let them down. It's a love/hate thing. My boss experiences the same thing, albeit lately, to a lesser degree. It's a weird business that way. By it revolves around trust and loyalty. Everyone can understand that.
I hope your program issues resolve soon.
Rich
I appreciate your admiration but I don't deserve it, honestly. I, like you, am just doing what I need to do. I am not trying to be humble, just honest.
This knocked me on my butt when I was in Atlanta pre-diagnosis, and I now live in fear of a repeat event 1,000 miles from home.
I keep going over in my mind if I should be doing something else, but then I think about ALL of my corporate clients who are being micro-managed to death, and I think I am still in the best spot I can be in. In fact, I am seriously thinking about writing a book about the micro-management epidemic sweeping the country. I think it would make Oprah's list :)
I have brought on another engineer, and I am working as hard as I can to get him up to speed, but my biggest problem still revolves around particular clients calling for me. And I cannot let them down. It's a love/hate thing. My boss experiences the same thing, albeit lately, to a lesser degree. It's a weird business that way. By it revolves around trust and loyalty. Everyone can understand that.
I hope your program issues resolve soon.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Joe,
What is my confidence that my diet is not being contaminated on the road? Well, I think pretty high but probably not 100 percent. I am in a Residence Inn all week and went to Whole Foods to buy my groceries for the week. So I am in total control right now. Now I did go to Outback tonight and got my standard Gluten Free meal (soy free, dairy free, etc.). I do feel I am handling this well.
I just feel like I need a kickstart with Prednisone. If that doesn't work, then so be it. At least I tried. I have no intentions of going off this diet, I am just weary of being one of the few who does not seem to fully respond to Entocort, etc.
Rich
What is my confidence that my diet is not being contaminated on the road? Well, I think pretty high but probably not 100 percent. I am in a Residence Inn all week and went to Whole Foods to buy my groceries for the week. So I am in total control right now. Now I did go to Outback tonight and got my standard Gluten Free meal (soy free, dairy free, etc.). I do feel I am handling this well.
I just feel like I need a kickstart with Prednisone. If that doesn't work, then so be it. At least I tried. I have no intentions of going off this diet, I am just weary of being one of the few who does not seem to fully respond to Entocort, etc.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Rich that sounds like a great way to keep on the diet when traveling. Residence Inn is a great choice to have with the in room kitchen. Thats more or less what I did when I was in Australia.
I just took my last Entocort this past weekend and am now relying on the Imuran, which seems to be working fairly well, and it won't be up to full strength for another month to 6 weeks. This is probably a factor in how I am feeling this week.
Certainly if your flare cannot be controlled by diet and Entocort, you may need to move up to another med. I would certainly work with your doc on this one.
If prednisone can work that would be great, but I would encourage you to do that with a doctors management. Too many people get into trouble with systemic corticosteroids like prednisone. They are a great med but require respect.
I would be interested to hear what your doctor suggests.
--Joe
I just took my last Entocort this past weekend and am now relying on the Imuran, which seems to be working fairly well, and it won't be up to full strength for another month to 6 weeks. This is probably a factor in how I am feeling this week.
Certainly if your flare cannot be controlled by diet and Entocort, you may need to move up to another med. I would certainly work with your doc on this one.
If prednisone can work that would be great, but I would encourage you to do that with a doctors management. Too many people get into trouble with systemic corticosteroids like prednisone. They are a great med but require respect.
I would be interested to hear what your doctor suggests.
--Joe
Joe
Hi Joe,
My family doc is a pretty cool guy. In fact, I think he might have done too many drugs in the 60's, if you know what I mean. But I like the fact he is non-traditional.
I am not confident I will be able to talk him into prednisone as my colo-rectal doc is the one who diagnosed me and prescribed entocort. He is a good man too, but takes like 3 months to see.
I feel like I know more about this disease than my docs. I definitely know what my body is telling me. So I simply want to "tell" them what I need. And as Polly has mentioned in the past, it might me time for the big guns.
Will keep you apprised. Stay calm and stress free.
Rich
My family doc is a pretty cool guy. In fact, I think he might have done too many drugs in the 60's, if you know what I mean. But I like the fact he is non-traditional.
I am not confident I will be able to talk him into prednisone as my colo-rectal doc is the one who diagnosed me and prescribed entocort. He is a good man too, but takes like 3 months to see.
I feel like I know more about this disease than my docs. I definitely know what my body is telling me. So I simply want to "tell" them what I need. And as Polly has mentioned in the past, it might me time for the big guns.
Will keep you apprised. Stay calm and stress free.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Dear Joe
Especially as so many of us seem to have been initially triggered by a virus or microbe with "flu" type symptoms.
Hope everyone is feeling better today....
Best, Ant
I may be way off base here, but IMHO it is a bit too co-incidental that so many flares started up at about the same time. It could be diet......it could be that some of us have been tapering off meds.......but ,I think that the change of seasons...... and thus virus/microbes being activated may also be a factor.I feel like I started a thread that is causing everyone to slide.
Especially as so many of us seem to have been initially triggered by a virus or microbe with "flu" type symptoms.
Hope everyone is feeling better today....
Best, Ant
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natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
Because I need to laugh instead of cry my response is....hoosier1 wrote:I feel like I started a thread that is causing everyone to slide. Was not my intention.
We all decided to reaquaint ourselves with the big D in sympathy!
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
Ant,
FWIW, You seem to be right on target. This happens about this time every year, for some unknown reason. I've wondered if it might be due to pollen or mold allergies, or the decrease in vitamin D availability from the sun, or a few other things, but nothing stands out as an obvious "smoking gun"
Tex
FWIW, You seem to be right on target. This happens about this time every year, for some unknown reason. I've wondered if it might be due to pollen or mold allergies, or the decrease in vitamin D availability from the sun, or a few other things, but nothing stands out as an obvious "smoking gun"
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Rich,
Have you ever taken Prednisone before? The side effects can be horendous. Insomnia for one. I was on 40 mg for a couple of months and sadly to say it really didn't work and made me feel horrible! I had to take Ambien just to get a little sleep. One of my GI docs said that for some reason MC patients need double the amount. I couldn't do it. But I'm a whimp too. Maybe with the diet it might be just the trick for you but please do it with your docs guidance. :)
Pat
Have you ever taken Prednisone before? The side effects can be horendous. Insomnia for one. I was on 40 mg for a couple of months and sadly to say it really didn't work and made me feel horrible! I had to take Ambien just to get a little sleep. One of my GI docs said that for some reason MC patients need double the amount. I couldn't do it. But I'm a whimp too. Maybe with the diet it might be just the trick for you but please do it with your docs guidance. :)
Pat
Rich - I'm very glad that you're part of this PP family, as you don't seem to hold anything back when you post. That ability and willingness to share seems to spur others to respond. This was obviously the main motivator for Tex to write that incredibly encouraging and realistic post about MC, which seems to be helping so many of us!!! Anyhow, wanted to let you know that I feel for you in your struggle, and am sending healing thoughts your way.
Me - like you, Joe, my latest round of issues was triggered when I accidentally ate soy in a restaurant (miso soup). I agree that the seasonal factor also seems to play a role, as I have had an unusually difficult time getting back on track. Without getting into detail, I can say that I am now in the stage of finding all my minor intolerances. These lesser allergens are suddenly becoming HUGE - causing nausea, D, etc. I would be soooo discouraged if it wasn't for the fact that this seems to be a "normal" progression in "the fight" to manage MC.
Hope everyone is doing better today, as am I. Best of luck to you all and thank you for being here.....
Love,
Kari
Me - like you, Joe, my latest round of issues was triggered when I accidentally ate soy in a restaurant (miso soup). I agree that the seasonal factor also seems to play a role, as I have had an unusually difficult time getting back on track. Without getting into detail, I can say that I am now in the stage of finding all my minor intolerances. These lesser allergens are suddenly becoming HUGE - causing nausea, D, etc. I would be soooo discouraged if it wasn't for the fact that this seems to be a "normal" progression in "the fight" to manage MC.
Hope everyone is doing better today, as am I. Best of luck to you all and thank you for being here.....
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
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Tanya Lynn
- Adélie Penguin
- Posts: 65
- Joined: Fri Jul 16, 2010 1:19 pm
- Location: Texas
I have had a busy week and I missed your post until today. I was feeling particularly frustrated because of a function which will include FOOD I CAN'T HAVE and food that I will have to cook so I will have something to eat. This post gave me a lift!
Thanks for your encouraging thoughts. You give so much to this group. I am amazed at your knowledge and wisdom!
Celie
Thanks for your encouraging thoughts. You give so much to this group. I am amazed at your knowledge and wisdom!
Celie
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Kimberly M
- Little Blue Penguin
- Posts: 43
- Joined: Thu Aug 19, 2010 8:13 pm
Tex, Thank you soo much for all you do and this heartfelt post. You are a wonderful caring person and have given so much to so many!
It seems as many of us are having a rough time right now. I cut back to two Entocort per day about a month ago and was doing pretty well but this last week has been rough. Is the fall typically more difficult for MC sufferers? I feel for each and everyone of you...........my heart goes out to you all.
Tex, you mentioned stress being a factor for autoimmune diseases. I was diagnosed with thyroid disease a year after our 7 year old daughter died. Burying your child is the most devastating thing a person can go through. My best friend thinks that my thyroid issues and now the MC were brought on by the stress of our daughters death. I know it doesn't matter why I have these issues but just curious as to your thoughts on a cause.
One other quick question.....Will an iron supplement make me nauseous? I found out I am anemic and my doc wants me on iron. Seems around the time I started taking the iron I started to feel bad.
Kim
It seems as many of us are having a rough time right now. I cut back to two Entocort per day about a month ago and was doing pretty well but this last week has been rough. Is the fall typically more difficult for MC sufferers? I feel for each and everyone of you...........my heart goes out to you all.
Tex, you mentioned stress being a factor for autoimmune diseases. I was diagnosed with thyroid disease a year after our 7 year old daughter died. Burying your child is the most devastating thing a person can go through. My best friend thinks that my thyroid issues and now the MC were brought on by the stress of our daughters death. I know it doesn't matter why I have these issues but just curious as to your thoughts on a cause.
One other quick question.....Will an iron supplement make me nauseous? I found out I am anemic and my doc wants me on iron. Seems around the time I started taking the iron I started to feel bad.
Kim