Struggling with MC and my career. Vent/advice would be great
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Struggling with MC and my career. Vent/advice would be great
Hi all,
It's been a while since I last posted, but since then I've been working hard on my recovery. I'm currently taking 6mg of Entocort per day, and am sticking to a strict GF/DF/EF diet. I've been feeling okay.
Like a lot of you, I characterize myself as a type-A, perfectionist, and I have always been high-performing and ambitious. I did very well in school/college, and when I first started in the workforce a few years ago. It is strange because even then I had MC and was suffering the symptoms but just didn't realize/know it.
I was told that I had IBS for many years until I finally got my LC diagnosis about a year ago. I knew I was sick, but I always downplayed it in my head because I thought I was just being weak, or it was just in my head and I was convincing myself that I was ill because I wanted to get out of working hard.
I grew up in an environment that was HIGHLY focused on a successful career, so I have always put a great deal of value on that in myself. I ended up in a Software Sales role out of Sillicon Valley. At first I really liked it, but now I know that it is DEFINITELY not the right path for me. I was at a company for about 4 years where they knew me, and liked me and there was not too much pressure. However, I took a job at a new company in August, and it is very, very different. I am now under constant pressure, and am so stressed all the time. I know I could handle this if I didn't have to also deal with MC on top of it. I end up stressing about work, which makes me sick, then I stress about being sick and not being able to work the way I need to, which makes me more sick. It's a terrible cycle. The management at my work are definitely not the type of people who are understanding/caring. I am also a remote worker so I've never even met my management in person, and therefore really don't feel comfortable discussing my MC with them.
Since work is extremely stressful more often than not, my LC has been flaring through the Endocort. I've been having my usual symptoms, like brain fog, fatigue, anxiety, stomach aches, nausea and cramps, lose of appetite, flu-like aches and pains, etc., but also some really strange new symptoms like swollen toes/feet (toes also turn purple sometimes), dizziness, headaches and blurred vision.
I have had the worst luck with GI doctors. They have have not helped me, and I feel guilty for missing work to go and see them. Not having a trusted doctor has, unfortunately, resulted in me spending a lot of time trying to self-diagnose secondary issues like Raynaud's and Irisitis, while avoiding doctors at all costs. I feel alone in this.
I am only 26 and am just starting my career. I have always wanted to be in a high-power position that challenges me, because a large part of my own self-worth comes from my pride in that. I am really sad to think that I will have to give all of that up to accommodate my MC, but I need to get my health on track.
My friends and family don't really get it. They don't understand what it's like to try to power through MC. They don't understand that it hurts to have to give up foods that you love. They think I'm being lazy and blowing things out of proportion. I start to think that too and it makes me so mad at myself. I've been working on being nicer to myself and cutting myself some slack, but I have high expectations for myself so it's hard.
I feel so burned out and what I really need is a break to focus on myself. But, since I am so early in my career, I don't have a huge savings built up to live on if I am not working. I am so scared of being fired. But even more afraid of continuing with this job for much longer. I need to completely overhaul my career, but there are so many options it's really overwhelming and I don't even know where I would start.
Has anyone else experienced similar issues? How did you get through it?
I just feel really lost. Any advice or words of encouragement from people who understand would be really helpful.
It's been a while since I last posted, but since then I've been working hard on my recovery. I'm currently taking 6mg of Entocort per day, and am sticking to a strict GF/DF/EF diet. I've been feeling okay.
Like a lot of you, I characterize myself as a type-A, perfectionist, and I have always been high-performing and ambitious. I did very well in school/college, and when I first started in the workforce a few years ago. It is strange because even then I had MC and was suffering the symptoms but just didn't realize/know it.
I was told that I had IBS for many years until I finally got my LC diagnosis about a year ago. I knew I was sick, but I always downplayed it in my head because I thought I was just being weak, or it was just in my head and I was convincing myself that I was ill because I wanted to get out of working hard.
I grew up in an environment that was HIGHLY focused on a successful career, so I have always put a great deal of value on that in myself. I ended up in a Software Sales role out of Sillicon Valley. At first I really liked it, but now I know that it is DEFINITELY not the right path for me. I was at a company for about 4 years where they knew me, and liked me and there was not too much pressure. However, I took a job at a new company in August, and it is very, very different. I am now under constant pressure, and am so stressed all the time. I know I could handle this if I didn't have to also deal with MC on top of it. I end up stressing about work, which makes me sick, then I stress about being sick and not being able to work the way I need to, which makes me more sick. It's a terrible cycle. The management at my work are definitely not the type of people who are understanding/caring. I am also a remote worker so I've never even met my management in person, and therefore really don't feel comfortable discussing my MC with them.
Since work is extremely stressful more often than not, my LC has been flaring through the Endocort. I've been having my usual symptoms, like brain fog, fatigue, anxiety, stomach aches, nausea and cramps, lose of appetite, flu-like aches and pains, etc., but also some really strange new symptoms like swollen toes/feet (toes also turn purple sometimes), dizziness, headaches and blurred vision.
I have had the worst luck with GI doctors. They have have not helped me, and I feel guilty for missing work to go and see them. Not having a trusted doctor has, unfortunately, resulted in me spending a lot of time trying to self-diagnose secondary issues like Raynaud's and Irisitis, while avoiding doctors at all costs. I feel alone in this.
I am only 26 and am just starting my career. I have always wanted to be in a high-power position that challenges me, because a large part of my own self-worth comes from my pride in that. I am really sad to think that I will have to give all of that up to accommodate my MC, but I need to get my health on track.
My friends and family don't really get it. They don't understand what it's like to try to power through MC. They don't understand that it hurts to have to give up foods that you love. They think I'm being lazy and blowing things out of proportion. I start to think that too and it makes me so mad at myself. I've been working on being nicer to myself and cutting myself some slack, but I have high expectations for myself so it's hard.
I feel so burned out and what I really need is a break to focus on myself. But, since I am so early in my career, I don't have a huge savings built up to live on if I am not working. I am so scared of being fired. But even more afraid of continuing with this job for much longer. I need to completely overhaul my career, but there are so many options it's really overwhelming and I don't even know where I would start.
Has anyone else experienced similar issues? How did you get through it?
I just feel really lost. Any advice or words of encouragement from people who understand would be really helpful.
Hi Sally,
I think you are very insightful and realistic about managing your LC. It’s okay (necessary, really) to cut yourself some slack while you are working on getting to remission. You’ve made your diet changes which are critical to being able to continue to heal once you are off Entocort. I highly recommend you find some gentle exercise like yoga (maybe not crazy acrobatic yoga- something more soothing) and take up meditation to help you practice getting calm and centered. It will help. Stress is the wild card. It will cause us to go backward or struggle in gaining consistency, even with your diet in order.
I know you are early in your career but as you see if your health isn’t on track then nothing else is either. Once you are in remission you will be able to pursue your more aggressive career goals but you aren’t in remission yet- so that’s the goal. Your friends and family may not get it. They don’t need to because you will be the judge of what you need. It might mean a temporary job change, while you focus on your health. (I made a similar change and it’s been a very good thing).
As you know you are in good company on this board. Even when others don’t get it- we do.
Carol
Edited: I want to add- and I really can’t stress this enough- to get better you really have to let go of any concerns about what others might think. Let their judgements roll off of you. That’s their problem, not yours. Set your plan for wellness (diet, rest, stress management with gentle exercise/meditation, reduce job stress, etc) and stay the course.
You said: “Since work is extremely stressful more often than not, my LC has been flaring through the Endocort. I've been having my usual symptoms, like brain fog, fatigue, anxiety, stomach aches, nausea and cramps, lose of appetite, flu-like aches and pains, etc., but also some really strange new symptoms like swollen toes/feet (toes also turn purple sometimes), dizziness, headaches and blurred vision. “. I’m concerned about your swollen toes/feet and the blurred vision. I’ve experience every other symptom you named during my flares of LC but not blurred vision or swollen feet. I’m hoping someone else weighs in on these symptoms.
I think you are very insightful and realistic about managing your LC. It’s okay (necessary, really) to cut yourself some slack while you are working on getting to remission. You’ve made your diet changes which are critical to being able to continue to heal once you are off Entocort. I highly recommend you find some gentle exercise like yoga (maybe not crazy acrobatic yoga- something more soothing) and take up meditation to help you practice getting calm and centered. It will help. Stress is the wild card. It will cause us to go backward or struggle in gaining consistency, even with your diet in order.
I know you are early in your career but as you see if your health isn’t on track then nothing else is either. Once you are in remission you will be able to pursue your more aggressive career goals but you aren’t in remission yet- so that’s the goal. Your friends and family may not get it. They don’t need to because you will be the judge of what you need. It might mean a temporary job change, while you focus on your health. (I made a similar change and it’s been a very good thing).
As you know you are in good company on this board. Even when others don’t get it- we do.
Carol
Edited: I want to add- and I really can’t stress this enough- to get better you really have to let go of any concerns about what others might think. Let their judgements roll off of you. That’s their problem, not yours. Set your plan for wellness (diet, rest, stress management with gentle exercise/meditation, reduce job stress, etc) and stay the course.
You said: “Since work is extremely stressful more often than not, my LC has been flaring through the Endocort. I've been having my usual symptoms, like brain fog, fatigue, anxiety, stomach aches, nausea and cramps, lose of appetite, flu-like aches and pains, etc., but also some really strange new symptoms like swollen toes/feet (toes also turn purple sometimes), dizziness, headaches and blurred vision. “. I’m concerned about your swollen toes/feet and the blurred vision. I’ve experience every other symptom you named during my flares of LC but not blurred vision or swollen feet. I’m hoping someone else weighs in on these symptoms.
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Your post made me very sad... I even read it to my husband. You are so young... I was 60 yrs old. When I was diagnosed with MC. I have been told that I had IBS for probably 20 yrs off and on. I retired from the state in July of 2017. Up until that time I worked in a small office with only women (my age) and one male. If not for having a small office and a bathroom in it I couldn’t have worked and would have been house bound for probably 2 yrs of that time. I cannot tell you how my life has changed after finally being diagnosed in 2014 and finding this board. This board literally saved my life and I MEAN that with all of my heart. The doctor’s don’t know how to help you or needless to say anyone else.
If you will read, read and read and do what this board tells you to do you can get your life back. Maybe not as you knew it but it’s really ok. PLease take care of you and the first thing to cut out is STRESS!!!
You have come to the right place for help and we’re all here for you.
Love,
Connie
If you will read, read and read and do what this board tells you to do you can get your life back. Maybe not as you knew it but it’s really ok. PLease take care of you and the first thing to cut out is STRESS!!!
You have come to the right place for help and we’re all here for you.
Love,
Connie
Live, Laugh & Love Much
Hi Sally,
Brandy here. Welcome to the forum.
a month in Cleveland to better follow the script. Don't hassle your top producer. I knew I was on the way out at that time.
The problem was the pay was really, really good but I knew I was week to week until I could not take it anymore.
she gets recruited for other jobs all the time and believe me she is not all that.
Rework your resume so it sounds less "salesy". Play up your college on your resume. Play down the salesy part of your resume.
You may end up with a pay cut but believe me money is not everything. Try for marketing jobs, administrative asst jobs, support jobs, graphic design etc.
and target marketing jobs, admin jobs, support jobs, graphic design etc.
You are young. You can afford to take a lower end job to reduce stress now. At a new place you can move around in the system.
Consider taking an afternoon off and talking to the employment/temp agencies after you have a revised resume face
to face. Tell them you want to move away from sales. There are a lot of jobs to be filled in silicon valley.
Talk to your friends to see if their employers are hiring. Church is also a good source for job connections (not church
jobs but other jobs).
for 2 weeks before Christmas I knew I was on the way out but that it would be on my terms. Scuttlebutt at our
factory in Cleveland was that if you were brought up for retraining in December you had high likely hood of being
fired the following year. I had factory workers tell me they were sorry for me. It was degrading.
On top of this I had MC. When I returned from retraining I worked on my own plan and concentrated on my
own plans. From that point on I knew I would leave on my terms. Ultimately I quit June 30th of the following year
7 months later.
I saw the same thing happen to my former boss, a 30 year employee and I saw the same thing happen to
my coworker in Florida, a decent guy. About a year earlier my former boss, a 30 year employee had a mental
breakdown from the stress. He was out of work for about 6 weeks. He would have been fired except for the
fact his wife was a nurse and she knew it was illegal to fire someone with mental health issues. He wanted
to take a job in the warehouse at lower pay but the company would not agree to that so he was stuck commuting
to Detroit for the company. (Jobs are very hard to get in Cleveland). When I saw how my former boss
was treated and after I was written up I knew I had to make my own plans.
Your post reads like you have massive stress at work with no hope of moving around or the stress ever going away.
Make baby steps to move on.
Brandy here. Welcome to the forum.
I was also a remote worker for 12 years. Generally I think being a remote worker with MC is a plus as you can go to the bathroom anytimeyou want. HOWEVER, I learned otherwise. The first 10 years I had the dream job of a lifetime. The last 2 years was TERRIBLE AS my company deployed a lot of employee tracking devices via phone and contact management system. The last 9 months was truly bad. I was the #3 salesperson out of 60 employees and I was given a bad review and "retrained" forI am also a remote worker
a month in Cleveland to better follow the script. Don't hassle your top producer. I knew I was on the way out at that time.
The problem was the pay was really, really good but I knew I was week to week until I could not take it anymore.
The good news is you are in Silicon Valley. My niece and nephew are in marketing support roles in silicon valley andI ended up in a Software Sales role out of Sillicon Valley.
she gets recruited for other jobs all the time and believe me she is not all that.
Rework your resume so it sounds less "salesy". Play up your college on your resume. Play down the salesy part of your resume.
You may end up with a pay cut but believe me money is not everything. Try for marketing jobs, administrative asst jobs, support jobs, graphic design etc.
Baby steps, one thing at a time. Re-haul your resume, play up your college jobs, summer jobs etc, college classesI need to completely overhaul my career, but there are so many options it's really overwhelming and I don't even know where I would start.
and target marketing jobs, admin jobs, support jobs, graphic design etc.
You are young. You can afford to take a lower end job to reduce stress now. At a new place you can move around in the system.
Set your cell phone timer to go off 5 minutes every hour at work. During your 5 minute break, meditate, stretch, prayer etc.I feel so burned out and what I really need is a break to focus on myself
Honestly not the worst thing in the world. You can file for unemployment and go to yoga classes.I am so scared of being fired.
Consider taking an afternoon off and talking to the employment/temp agencies after you have a revised resume face
to face. Tell them you want to move away from sales. There are a lot of jobs to be filled in silicon valley.
Talk to your friends to see if their employers are hiring. Church is also a good source for job connections (not church
jobs but other jobs).
When I was written up for not following the selling system to a "T" and brought up for retraining in ClevelandHas anyone else experienced similar issues? How did you get through it?
for 2 weeks before Christmas I knew I was on the way out but that it would be on my terms. Scuttlebutt at our
factory in Cleveland was that if you were brought up for retraining in December you had high likely hood of being
fired the following year. I had factory workers tell me they were sorry for me. It was degrading.
On top of this I had MC. When I returned from retraining I worked on my own plan and concentrated on my
own plans. From that point on I knew I would leave on my terms. Ultimately I quit June 30th of the following year
7 months later.
I saw the same thing happen to my former boss, a 30 year employee and I saw the same thing happen to
my coworker in Florida, a decent guy. About a year earlier my former boss, a 30 year employee had a mental
breakdown from the stress. He was out of work for about 6 weeks. He would have been fired except for the
fact his wife was a nurse and she knew it was illegal to fire someone with mental health issues. He wanted
to take a job in the warehouse at lower pay but the company would not agree to that so he was stuck commuting
to Detroit for the company. (Jobs are very hard to get in Cleveland). When I saw how my former boss
was treated and after I was written up I knew I had to make my own plans.
Your post reads like you have massive stress at work with no hope of moving around or the stress ever going away.
Make baby steps to move on.
Will your old company take you back? Most times they won't but sometimes they will.I was at a company for about 4 years where they knew me, and liked me and there was not too much pressure.
On future job opportunities try to get a feel about company culture before accepting a job.The management at my work are definitely not the type of people who are understanding/caring.
"Coasting" on your existing job and working on stress relief is also another option while you get your resume modified and are doing better MC wise.
Also, is quitting your job and moving in with family and taking a part time gig an option until you get your
MC under control? There are a ton of college graduates, age 26, living with their families in my town.
Consider any and all options. Prioritizing your health is not failure.....simply it is prioritizing your health.
Also, is quitting your job and moving in with family and taking a part time gig an option until you get your
MC under control? There are a ton of college graduates, age 26, living with their families in my town.
Consider any and all options. Prioritizing your health is not failure.....simply it is prioritizing your health.
Dizziness, headaches, vision problems, swollen ankles, and purpura are all listed side effects of Entocort (some of them may only be listed in the professional information). I have a hunch that if it can cause swollen ankles, it can cause swollen toes/feet.Sally wrote:swollen toes/feet (toes also turn purple sometimes), dizziness, headaches and blurred vision.
Depression, mood swings, agitation, etc., are also listed as side effects. You may have developed an allergy to Entocort, but that's just my opinion.
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.
Hi Sally,
I'm 33 yrs old but having but dealing with chronic medical conditions since my early twenties -- I definitely feel your pain! I will offer a couple of suggestions (all learned through my own stumbles!)
Please know that there are protections/laws in place to protect you in the workplace if you have a chronic medical condition. Also, it's often better to disclose to your employer that you're struggling with your health sooner rather than later. I recently started a new position and told my boss the following: "I have a chronic medical condition which means that 1) I need flexible time for doctors apts 2) I may take more sick days and 3) if I ever were to get seriously ill she would be the first to know." Of course throughout all of this I was reassuring her that I would go above and beyond to get all of my work done and also to let her know how excited I was about the position. She was incredibly kind and supportive.
My advice to you would be to have a similar conversation with your manager, or if you're not comfortable with your manager than your HR rep. If can help to clue them in as to what's going on. You decide how much info to give and determine what you need from them (flexible time, more sick days, etc.)
Having a medical condition like MC can be overwhelming and yes this board is a great place for support. I've also benefited from the support of a psychologist/therapist. If you're feeling overwhelmed it sounds like that might be something worth exploring.
Daily meditation and yoga practice has also been huge in calming my anxieties. I couldn't make it through a yoga class when I was in the middle of MC but the website Gaia provided a lot of great online resources.
Finally, many people on this board have gone the MC road without the support of a GI. I'm grateful to have found a doctor that I love. If you're looking to connect with a doctor my advice would be to look for an IBD specialist. They seem to understand MC much better than general GIs. You're in a large city so you may have some luck!
Best of luck to you!
Lisa
I'm 33 yrs old but having but dealing with chronic medical conditions since my early twenties -- I definitely feel your pain! I will offer a couple of suggestions (all learned through my own stumbles!)
Please know that there are protections/laws in place to protect you in the workplace if you have a chronic medical condition. Also, it's often better to disclose to your employer that you're struggling with your health sooner rather than later. I recently started a new position and told my boss the following: "I have a chronic medical condition which means that 1) I need flexible time for doctors apts 2) I may take more sick days and 3) if I ever were to get seriously ill she would be the first to know." Of course throughout all of this I was reassuring her that I would go above and beyond to get all of my work done and also to let her know how excited I was about the position. She was incredibly kind and supportive.
My advice to you would be to have a similar conversation with your manager, or if you're not comfortable with your manager than your HR rep. If can help to clue them in as to what's going on. You decide how much info to give and determine what you need from them (flexible time, more sick days, etc.)
Having a medical condition like MC can be overwhelming and yes this board is a great place for support. I've also benefited from the support of a psychologist/therapist. If you're feeling overwhelmed it sounds like that might be something worth exploring.
Daily meditation and yoga practice has also been huge in calming my anxieties. I couldn't make it through a yoga class when I was in the middle of MC but the website Gaia provided a lot of great online resources.
Finally, many people on this board have gone the MC road without the support of a GI. I'm grateful to have found a doctor that I love. If you're looking to connect with a doctor my advice would be to look for an IBD specialist. They seem to understand MC much better than general GIs. You're in a large city so you may have some luck!
Best of luck to you!
Lisa
Just checked back in, and I can't tell you how much it means to me to read all of your responses. Thank you all so much for taking the time, and for sending this helpful advice and supportive words.
I was definitely having a BAD day yesterday. I think it is okay to breakdown about this sometimes. I do need to let go of what others think. I've been working on that. I think I am just looking for some kind of validation that my struggle is real (especially since I do not get that from the medical community). I am realizing that that validation needs to come from within and not from any external sources. Seeing it that way will bring me more inner peace.
I also think that I tend to project how I feel about myself onto my perception of how others feel about me. My family and friends have been much more supportive than I give them credit for. In my mind, it's almost easier to assume that everyone else thinks the worst of me the way that I sometimes do, as it validates THAT in my own mind too. Like I said before, I am working hard on being nicer and cutting myself some slack. And I think realizing all of this is a good first step to doing that.
Luckily, I am able to talk to my sister about this a lot. She understands because she has type 1 diabetes. She helps me with accepting that this will be a life-long struggle for me, and she helps me see that it does get better once you have it under control. She is very strong in living with her disease, and it inspires me to strive for the same.
I also had a long talk with my boyfriend about this last night, he helped me come up with some alternative career paths that I can look into. It gave me a lot of hope and has made me feel way less stuck. I am also excited to leverage this as an opportunity to soul-search and find a career that is meaningful and that won't exacerbate my health problems. It's freeing to even think that I don't have to do what I am doing forever, and if I don't hit my number this quarter then it's not the end of the world and I definitely don't need to spend the next three months stressing about it.
Definitely going to try out yoga - I know that will be super helpful too. I used to go to spin classes (like Soul Cycle) pretty regularly, but stopped a couple of years ago when I really started to struggle with MC. Would any of you recommend doing more intense exercise like that when trying to get to remission? Or should I keep it light until I'm on the other side and feeling better?
Also, Tex - I've been on Endocort for about 2 months now, started with 9mg/day and am now on 6mg/day and tapering to 3mg/day in the next week or so. Is it typical to develop an allergy to Endocort after having taken it for a few months without issue? Should I stop taking it now or continue to taper and just not take it again?
For the swollen toes/purple toes I was thinking that it is Raynaud's. I've had issues with my hands/feet for a while (always cold hands that sometimes turn purple too). I've noticed that my toes swell when I'm stressed, or when I get contaminated by gluten (no other foods have caused this issue - but last time I got glutened, my toes were swollen for a week!). Should I go see a Rheumatologist for this? Or a different kind of doctor? Assuming my GI won't know anything about it (haha).
Thank you all so much again. Finding this forum, and having your support is really amazing. I don't know where I would be without this group (and Tex's book!!). Thank you, thank you, thank you!!
Have a great weekend everyone. I'm going to spend it de-stressing!
I was definitely having a BAD day yesterday. I think it is okay to breakdown about this sometimes. I do need to let go of what others think. I've been working on that. I think I am just looking for some kind of validation that my struggle is real (especially since I do not get that from the medical community). I am realizing that that validation needs to come from within and not from any external sources. Seeing it that way will bring me more inner peace.
I also think that I tend to project how I feel about myself onto my perception of how others feel about me. My family and friends have been much more supportive than I give them credit for. In my mind, it's almost easier to assume that everyone else thinks the worst of me the way that I sometimes do, as it validates THAT in my own mind too. Like I said before, I am working hard on being nicer and cutting myself some slack. And I think realizing all of this is a good first step to doing that.
Luckily, I am able to talk to my sister about this a lot. She understands because she has type 1 diabetes. She helps me with accepting that this will be a life-long struggle for me, and she helps me see that it does get better once you have it under control. She is very strong in living with her disease, and it inspires me to strive for the same.
I also had a long talk with my boyfriend about this last night, he helped me come up with some alternative career paths that I can look into. It gave me a lot of hope and has made me feel way less stuck. I am also excited to leverage this as an opportunity to soul-search and find a career that is meaningful and that won't exacerbate my health problems. It's freeing to even think that I don't have to do what I am doing forever, and if I don't hit my number this quarter then it's not the end of the world and I definitely don't need to spend the next three months stressing about it.
Definitely going to try out yoga - I know that will be super helpful too. I used to go to spin classes (like Soul Cycle) pretty regularly, but stopped a couple of years ago when I really started to struggle with MC. Would any of you recommend doing more intense exercise like that when trying to get to remission? Or should I keep it light until I'm on the other side and feeling better?
Also, Tex - I've been on Endocort for about 2 months now, started with 9mg/day and am now on 6mg/day and tapering to 3mg/day in the next week or so. Is it typical to develop an allergy to Endocort after having taken it for a few months without issue? Should I stop taking it now or continue to taper and just not take it again?
For the swollen toes/purple toes I was thinking that it is Raynaud's. I've had issues with my hands/feet for a while (always cold hands that sometimes turn purple too). I've noticed that my toes swell when I'm stressed, or when I get contaminated by gluten (no other foods have caused this issue - but last time I got glutened, my toes were swollen for a week!). Should I go see a Rheumatologist for this? Or a different kind of doctor? Assuming my GI won't know anything about it (haha).
Thank you all so much again. Finding this forum, and having your support is really amazing. I don't know where I would be without this group (and Tex's book!!). Thank you, thank you, thank you!!
Have a great weekend everyone. I'm going to spend it de-stressing!
Sally
Hi Sally,
No, that's not typical. It's possible, but if you've been on it that long, it's unlikey that the Entocort is the problem (Unless the symptoms began very soon after you started taking it). It's rather likely that the Raynaud's is the cause of those symptoms. Note that if you are taking fluoxetine and/or losartan to treat the Raynaud's, they might be the cause (or at least a contributing cause) of your continuing MC flare.
As far as I'm aware, Raynaud's falls under the treatment domain of rheumatology.
Tex
No, that's not typical. It's possible, but if you've been on it that long, it's unlikey that the Entocort is the problem (Unless the symptoms began very soon after you started taking it). It's rather likely that the Raynaud's is the cause of those symptoms. Note that if you are taking fluoxetine and/or losartan to treat the Raynaud's, they might be the cause (or at least a contributing cause) of your continuing MC flare.
As far as I'm aware, Raynaud's falls under the treatment domain of rheumatology.
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.
https://www.wsj.com/articles/how-to-mak ... cle_inline
https://www.wsj.com/articles/inside-the ... _lead_pos6
I'm not sure if these articles are locked if so pick up todays Wall Street Journal March 1st in library or newstand.
https://www.wsj.com/articles/inside-the ... _lead_pos6
I'm not sure if these articles are locked if so pick up todays Wall Street Journal March 1st in library or newstand.
You are on the right path!I am realizing that that validation needs to come from within and not from any external sources.
He sounds like a keeper!I also had a long talk with my boyfriend about this last night, he helped me come up with some alternative career paths that I can look into.
In general when you are struggling less rigorous exercises are probably better but hey, you are 26, don't let MC prevent you from hiking etc, listen to your body.
Re: your Entocort question. This is somewhat of an individualized solution. IF you are struggling I'd stay on Entocort longer.
I had pretty severe side effects while I was on Entocort. I ended up getting off at 4.5 months as I was doing well and never
looked back. If the side effects are very severe you might want to taper sooner. General consensus is longer stay on Entocort
is going to be better than 3 months even if it is only 4 or 4.5 months. If the side effects are very severe obviously a shorter
taper might be warranted. I was trying for 5 months but could no longer take the side effects at 4.5 months. Are you having
consistent solid stool? Like for 45 days straight? If so you should have no problem getting off. You also have youth
on your side. Young folks heal faster.
Hi Sally,
And yes, the struggle is real. While some of us were fortunate to be able to continue to work while recovering, others had to retire early or go on disability. It took me roughly 2 1/2 years to reach remission sticking rigidly to my diet and with taking Endocort for about 4 1/2 months at the onset. Young people generally heal more quickly (as Brandy noted) so that is definitely in your favor. Getting there will be 2 steps forward and 1 back, but you will arrive. It’s very helpful early on to keep a diary of what you ate and how you felt the next day. I also noted how well I slept, when I exercised, and any stressors I was dealing with in an effort to try to sort out any trends in my recovery.
Have a good weekend!
Carol
What struck me about your comment is that you and your sister are both dealing with autoimmune issues. It’s not surprising since they do run in families. It probably doesn’t feel like it but with your diet changes and steps to heal your gut and get your LC into remission you are likely stopping or at least slowing down the onset of other autoimmune diseases. The strategies you develop now will continue to serve you well in the future.Luckily, I am able to talk to my sister about this a lot. She understands because she has type 1 diabetes. She helps me with accepting that this will be a life-long struggle for me, and she helps me see that it does get better once you have it under control. She is very strong in living with her disease, and it inspires me to strive for the same.
And yes, the struggle is real. While some of us were fortunate to be able to continue to work while recovering, others had to retire early or go on disability. It took me roughly 2 1/2 years to reach remission sticking rigidly to my diet and with taking Endocort for about 4 1/2 months at the onset. Young people generally heal more quickly (as Brandy noted) so that is definitely in your favor. Getting there will be 2 steps forward and 1 back, but you will arrive. It’s very helpful early on to keep a diary of what you ate and how you felt the next day. I also noted how well I slept, when I exercised, and any stressors I was dealing with in an effort to try to sort out any trends in my recovery.
Have a good weekend!
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
- dolson
- Gentoo Penguin
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I'm not a perfectionist
I was told the "early bird gets the worm!" Get out of bed and get a job, go to college, help with restoring a 1937 Rolls Royce, work, pick up moss, rake leaves, and maybe I could find some time to play. I was forced to do whatever to survive. Money short and everybody was poor. I thought everyone was like me. I did all this and sick all the time. I strived to survive like my parents and grandparents.
- dottydog1959
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Hi Sally. About your question 're exercise. It's a great stress buster and without it I would have lost my marbles. I am 59 and have had MC for decades and have not been in remission. Despite the difficulties it brings I exercise at intensity most days. Spin classes are great. I have represented my country at age group level in 4 different sports (all of which involve maximal intensity effort for over an hour at times) over the last few years. Training and competing keeps me sane. Some days I might feel terrible and I rest. It's important not to push yourself on bad days but exercise has been a life saver for me.
I just try to enjoy whatever I can and intense exercise makes me feel alive and helps me to cope. Hope you find a way to continue to enjoy exercise too.
I just try to enjoy whatever I can and intense exercise makes me feel alive and helps me to cope. Hope you find a way to continue to enjoy exercise too.
Dotty