Visit the Microscopic Colitis Foundation Website
All:
Saw my GI doc yesterday. A smiling and giddy little man. This was the first time I had seen him since diagnosis a couple months ago (post colonoscopy... I was out cold so I don't recall talking to him then). I shook his hand and thanked him for putting a name to my problem. He seemed very pleased as well. We talked about why it took so long to make the diagnoses and he felt none of my former doctors took enough biopsies - take heed everyone. He took more than ten! Plus, I had been falsely labelled with the waste can diagnosis of IBS for so many years that all of my new doctors would read my "file" and simply assume that that was what I had. So many of them never worked very hard for me.
I told his nurse about all of the things I am doing, and about this group. She wrote it down and seem pleased that I have found all of you. So I sense she will be passing the web address around. Good for her.
I have been on Entocort since Sept 1 at 9 mg/day. Lots of ups and downs since its inception however I am feeling more stable. So, I am staying at 9mg until the end of October and then tapering to zero by end of December. Will reassess then.
I am still using, as needed, a little immodium, but I do feel like my dietary changes are helping. I am in Iowa today and when lunch time rolled around, everyone wanted to go to get fast food. So I told all of them briefly about my dietary restrictions, and per Tex's recommendation, found a local pub. I proceeded to tell the waitress about what I cannot eat and simply ordered cooked hamburger and baked potato. It was a good lunch, filled me up, and no guilt. And more importantly, no toxicity, brain fog, or GI urgency. Completed the rest of the day and was very comfortable.
My boss and I had a very productive breakfast meeting Monday. He pulled rank on me - his words - to allow me only to be on the road 3 days this week. He remarked that I just came off of a hell of a 4 weeks and he knows how draining this can be. I know only 3 days on the road doesn't sound like a huge reduction in my travel, but for me, it is. And only 1 city this week!!!! He IS and continues to be a very supportive man. I am very fortunate to have a boss who is more my peer than a micromanaging dictator (have had them in the past). Two cities next week and going out on Sunday but the tail end of the week is open. This is a good mix. And in a few weeks, my new engineer will be ready to load up as much as my clients will accept. That will be a relief.
I met a client tonight who has what he calls "gastritis." Sounded a lot like MC to me. So it was good to compare notes. He chalks his problems up to stress. Has no formal diagnosis but was a really good ear for me tonight. As I reflected on the evening, I have some really nice clients whom I have grown to appreciate. I really believe they care about me.
So that is the latest with me. More good days than bad. Some levels of Norman but not what I had several years ago (i.e. the real Normal). But I don't except that so I am no disappointed. I just want to be able to function without constant pain, fog, and urgency.
Hang in there everyone. You are an important group of people who have banded together in very unique way to help so many, like myself, who have been struggling for so long. Thank you.
Rich
Saw Doctor Yesterday - Forgive my memory if I already posted
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Saw Doctor Yesterday - Forgive my memory if I already posted
"It's not what I believe. It's what I can prove." - A Few Good Men
Hi Shirley,
I think I owe my mental change to Gabes. She posted about my needing to accept this problem for what it is. It is a part of me, and I realize that now. So I am trying to look at it as a "feature" that limits me, in the right way, to not push myself in directions or manners that formerly (or presently) would upset my system and my progress in achieving balance and stability.
I also think I have lowered the bar for my expectations of what I am to be, living with this. That sounds negative, and it is not meant to be. Through this board I have realized that even those who feel they have achieved Norman still flare on occasion, have unexpected bad days, etc. In other words, there is only so much we all can do to control this. It will, at times, control us and one simply needs to accept that.
I'm trying! And trying to be more positive as you noticed
Thanks,
Rich
I think I owe my mental change to Gabes. She posted about my needing to accept this problem for what it is. It is a part of me, and I realize that now. So I am trying to look at it as a "feature" that limits me, in the right way, to not push myself in directions or manners that formerly (or presently) would upset my system and my progress in achieving balance and stability.
I also think I have lowered the bar for my expectations of what I am to be, living with this. That sounds negative, and it is not meant to be. Through this board I have realized that even those who feel they have achieved Norman still flare on occasion, have unexpected bad days, etc. In other words, there is only so much we all can do to control this. It will, at times, control us and one simply needs to accept that.
I'm trying! And trying to be more positive as you noticed
Thanks,
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Hi Rich,
I'm so glad for you that you're steadily, but surely, finding a constructive and workable way to deal with MC. It is a privilege to witness and share in your progress through your thoughtful and detailed posts. Wishing you all the best on your journey and looking forward to future "reports" :).
Warm regards,
Kari
I'm so glad for you that you're steadily, but surely, finding a constructive and workable way to deal with MC. It is a privilege to witness and share in your progress through your thoughtful and detailed posts. Wishing you all the best on your journey and looking forward to future "reports" :).
Warm regards,
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
Dear Rich,
Thanks so much for posting. I sometimes regret that I have had to take a lower flight path than I was envisioning, but then I remember life should never be defined by career. We all have to readjust and thank goodness you have a boss that is human.
All the best, Ant
Thanks so much for posting. I sometimes regret that I have had to take a lower flight path than I was envisioning, but then I remember life should never be defined by career. We all have to readjust and thank goodness you have a boss that is human.
Be prepared, since this may be too quick a time period. My Gi doc wanted me off Entocort too soon and I found a way around it by ordering the generic from India.So, I am staying at 9mg until the end of October and then tapering to zero by end of December.
All the best, Ant
Rich,
What a heartwarming post! You are indeed making lemonade out of those MC lemons, and in the process, moving well along on your path to health. Gabes is such a wise lady, isn't she? Acceptance is the final but most difficult step in the grieving process, and you have made such progress in that area. You are an inspiration to many here. It is obvious that you are now seeing the glass as half-full more than half-empty. Three cheers for you!
BTW, I enjoy your writing style - your "smiling and giddy little man" cracked me up!
Keep up the good work. You are a quick study, IMHO.
Love,
Polly
What a heartwarming post! You are indeed making lemonade out of those MC lemons, and in the process, moving well along on your path to health. Gabes is such a wise lady, isn't she? Acceptance is the final but most difficult step in the grieving process, and you have made such progress in that area. You are an inspiration to many here. It is obvious that you are now seeing the glass as half-full more than half-empty. Three cheers for you!
BTW, I enjoy your writing style - your "smiling and giddy little man" cracked me up!
Keep up the good work. You are a quick study, IMHO.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Rich, great post and I am glad that you are doing better in accepting what is. In my mind that is the first step in planning what to do about the future. This really is a lot like the grieving process.
I have to agree with the others regarding Entocort, given all of the experience on this board it does seem that a few months is to short a time on the Entocort. There is a post somewhere that I wrote with almost the same wording about planning on stopping the Entocort in early July.
At least for me that did not work at all. After only 4 days of a 6mg dose the D came back with a vengeance. It has now been 6 months at 9mg of Entocort, and I am now tapering the Entocort as I am transitioning to one of the direct immune suppression drugs Imuran. Now the reason for the Imuran is twofold. First is to treat the Crohns disease that the Entocort dose not treat, and second is that my GI doc is concerned at being on steroids for this length of time.
That's great that your boss has 'pulled rank' on you, hopefully this will allow you more time to deal with your health in a meaningful way
Best wishes Rich and thanks for the update
--Joe
A quote for MC
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.”
.
I have to agree with the others regarding Entocort, given all of the experience on this board it does seem that a few months is to short a time on the Entocort. There is a post somewhere that I wrote with almost the same wording about planning on stopping the Entocort in early July.
At least for me that did not work at all. After only 4 days of a 6mg dose the D came back with a vengeance. It has now been 6 months at 9mg of Entocort, and I am now tapering the Entocort as I am transitioning to one of the direct immune suppression drugs Imuran. Now the reason for the Imuran is twofold. First is to treat the Crohns disease that the Entocort dose not treat, and second is that my GI doc is concerned at being on steroids for this length of time.
That's great that your boss has 'pulled rank' on you, hopefully this will allow you more time to deal with your health in a meaningful way
Best wishes Rich and thanks for the update
--Joe
A quote for MC
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.”
.
Joe
Everyone,
OK my friends. The common theme about possibly coming off of Entocort too soon is freaking me out a bit. I am tapering to 6 mg/day starting Nov 1. So if things start to get weird quickly, I will simply bring my dose back up since they wrote me a scrip for two months.
Ant, when you found a generic in India, did you order this without a prescription? Because my doctor is not inclined to keep me on it much longer so I may have to go "covert ops." Even though my doctor said it is a relatively safe drug, he wants me to be off it by year's end. Regarding flying lower with work, Ant, I had a good dose of reality over the weekend regarding my wife's new manager. She is micromanaging people to death. I can't stand people who behave that way. It is a miserable existence reporting to micromanagers (a trend I am seeing with all of my clients who work for large corporations). So I sat down and re-evaluated what I have - i.e. the freedom to run the business how I please with 100% support - and I realized that is a rare situation to find and I have to make it work. I have also started to see my customers in a new light. I am seeing their frailties more vividly now, and perhaps in the past, I was a little blind to that. I also find I am listening more intently to them, for a variety of reasons but I think mainly because I simply don't feel toxic anymore. My brain is working better. Yeah. Knock on wood because I am still going up and down and don't want to jinx myself.
Also, at my age, I really don't feel I define myself by my career any longer (I do remember those days when I was younger). I simply get satisfaction out of solving problems for my clients. And I enjoy seeing them. Plus I am intently motivated to retire early if need by so that motivates me to stay in the rat race at a slightly higher pace for now. Illness is an incredible motivator I have found.
So I am taking later flights out in the morning, increasing the time between connections, and am not trying to fly out in the evening (waiting until the next day). This actually keeps me on the road even more, but it is better for my body because I can rest. In other words, I am making time for myself as I work. It just has to be this way or it won't work.
I will keep you apprised regarding my tapering everyone. If the *&$^ hits the fan, literally, I will let you all know.
Rich
OK my friends. The common theme about possibly coming off of Entocort too soon is freaking me out a bit. I am tapering to 6 mg/day starting Nov 1. So if things start to get weird quickly, I will simply bring my dose back up since they wrote me a scrip for two months.
Ant, when you found a generic in India, did you order this without a prescription? Because my doctor is not inclined to keep me on it much longer so I may have to go "covert ops." Even though my doctor said it is a relatively safe drug, he wants me to be off it by year's end. Regarding flying lower with work, Ant, I had a good dose of reality over the weekend regarding my wife's new manager. She is micromanaging people to death. I can't stand people who behave that way. It is a miserable existence reporting to micromanagers (a trend I am seeing with all of my clients who work for large corporations). So I sat down and re-evaluated what I have - i.e. the freedom to run the business how I please with 100% support - and I realized that is a rare situation to find and I have to make it work. I have also started to see my customers in a new light. I am seeing their frailties more vividly now, and perhaps in the past, I was a little blind to that. I also find I am listening more intently to them, for a variety of reasons but I think mainly because I simply don't feel toxic anymore. My brain is working better. Yeah. Knock on wood because I am still going up and down and don't want to jinx myself.
Also, at my age, I really don't feel I define myself by my career any longer (I do remember those days when I was younger). I simply get satisfaction out of solving problems for my clients. And I enjoy seeing them. Plus I am intently motivated to retire early if need by so that motivates me to stay in the rat race at a slightly higher pace for now. Illness is an incredible motivator I have found.
So I am taking later flights out in the morning, increasing the time between connections, and am not trying to fly out in the evening (waiting until the next day). This actually keeps me on the road even more, but it is better for my body because I can rest. In other words, I am making time for myself as I work. It just has to be this way or it won't work.
I will keep you apprised regarding my tapering everyone. If the *&$^ hits the fan, literally, I will let you all know.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Rich,
I like your new travel rules - that dog will hunt.
This thread addresses the prescription issue for foreign orders:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12453
Note that some Canadian Pharmacies require prescriptions for online sales across borders, but that is just a "feel-good" requirement, because prescriptions written by doctors practicing in the U. S., have no official invalidity in Canada.
Tex
P. S. I agree with you about managers who try to micromanage - that sucks, for many reasons, not the least of which is the tendency to stifle creativeness and self-reliance.
I like your new travel rules - that dog will hunt.
This thread addresses the prescription issue for foreign orders:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12453
Note that some Canadian Pharmacies require prescriptions for online sales across borders, but that is just a "feel-good" requirement, because prescriptions written by doctors practicing in the U. S., have no official invalidity in Canada.
Tex
P. S. I agree with you about managers who try to micromanage - that sucks, for many reasons, not the least of which is the tendency to stifle creativeness and self-reliance.
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.