Career and lymphocytic colitis?

Discussions on the details of treatment programs using either diet, medications, or a combination of the two, can take place here.

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Rhyes
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Career and lymphocytic colitis?

Post by Rhyes »

I hope everyone is doing well. I'm having an extra ordinarilly bad belly day today. Horrible cramps with many trips to the bathroom. I'm wondering how anyone is dealing with this disease and career. As I've posted before, I've been unemployed for some time now and have been living off of savings. I want, and need, to find a job and start living some kind of life. My concern is that there are days when I could work, but there are many days, like today, that I literally could not. I'm so worried that when I find employment, I will not be able to keep it. I can't see an employer understanding, accepting and tolerating an employee in my condition. How are any of you dealing with this and your job? I've been trying to think of a way to make a living with this. The more I try to figure it out, the more lost I get. What do I do? I feel if I go to an interview (without having to run to the bathroom in the middle of it, which has happened), I will have to explain this and hope I get the job. I don't see it! Days like today I am running to the bathroom every half hour or so. Any advice would be greatly, greatly appreciated. I feel so weak because I know others with this are living their lives, career, etc. and I just don't see how I can. I actually have a very good work ethic, discipline, loyalty, dedication, etc. If I could find a way to work from home or find a job that pays for the work done, not necessarily a "schedule" I could make a living. I just don't want to deplete my savings, because I don't know how I will survive.
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Jazi
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Post by Jazi »

Hi Rhyes

I'm sorry that you're symptoms are so severe. Are you on meds or watching your diet?

I missed a ton of work last year but I have been employed with him for 17 years but even still, he wasn't too thrilled about me missing work. Such is life! I was so angry with my boss for being upset with me for being sick and I didn't care if I got fired, I was actually hoping he would fire me so I could stay home, get my life in order and collect unemployment.

Anyway, I couldn't imagine beginning a new job feeling like I did last year or even feeling like I feel today :sad:

What are you doing to help yourself?
Joanne

"A Journey Of A Thousand Miles Must Begin With A Single Step"
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Post by Rhyes »

Thank you for responding Jazi. I've been on a strict diet for a long time now. Pretty much all I eat is chicken and rice. That is the only thing I can handle after years of playing with my diet. Even when I fast I have symptoms. Sometimes I eat canned fruit and peanut butter. I'm now down to about 100 pounds and I'm a 40 year old male. As far as meds, I'm not on any now. I've tried everything that my Gastro prescribed, except Enticort, which I can't afford. Tex advised me that I can get it from India without a prescription really cheap, so I may try that. I also have a bunch of Prednisone from previous prescriptions and I'm considering doing a 10 or 14 day taper with them to see if I can improve anything. I've read on other forums that it has helped several people without side effects because it's such a short course. I'm desperate. I've had this for over ten years and it has gotten progressively worse throughout the years. I have tried just about everything. I've changed my diet for months at a time with absolutely no improvement. I think I'm one of those rare cases where nothing works. I've been in spontaneous remission twice in all that time, each only lasting a few days. At least I know my inards still work :) (Trying to stay positive). I'm at my wits end now. I have a possible job opportunity and I'm scared to death about it. I lost my last job because of this after working there for years. They held in with me as long as they could, so I understand. I'm just so overwhelmed about living the rest of my life with this horrible disease. My family doesn't have a full appreciation for how bad this is, which makes it worse for me. I don't blame them though, before I had this I just thought of "belly problems" as little stomach aches. Little did I know!!! It would be a dream come true if people like us to make a living helping others like us. Thanks again for the response. Advice sure helps me deal!!!!!!
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Post by dfpowell »

Hi Rhyes,

Sorry about how things have been going for you. It is hard to heal your gut if you are not getting enough calories and protein. Since your diet is already quite limited, stabilizing your symptoms with medication could be your best plan. I have also dealt with symptoms for many years and made lots of diet changes, however, I needed the medication to help me get my life back.
Enotcort has helped others, myself included. I hope you can get some relief soon.
Donna

Diagnosed with CC August 2011
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Post by Julie »

Hi Rhyes,

I have LC too. I know it's hard to find a job that fits with your disease. I used to have terrible flares every month and I was hospitalised 4 times this year.

I made a choice of working part-time after I recovered. I do a job that I love and I am never stressed when I work. So that helps me too.

I found a job where there are other people with other illnesses. I work with people who have celiac, crohn's disease, ... So my boss understands. I didn't tell my boss how sick I was last year though, since I didn't want to scare him off.

Last year, I had a job that demanded a lot of me. It was very stressful. I was sick all the time. And now that I teach, I am hardly ever sick! It amazes me that I am suddenly better. You will get better days. You have to believe that. Know that you are always welcome here.

Good luck!

Julie
It doesn't matter how many times you fall, but how many times you get up en go for it again. HOPE !!!!
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Post by Gabes-Apg »

Rhyes

I have seen your question and want to reply.....
Some non mc health issues are limiting my computer time....

I will reply as soon as i can.

Hugs. Gabes
Gabes Ryan

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Rhyes
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Post by Rhyes »

Thanks Gabes. I read your response on my other post. This question is of my biggest concern though. I am so worried and overwhelmed by this. I actually had an interview yesterday and barely made it through without having to excuse myself and run to the bathroom. I could tell that they will not tolerate this at all, so if I get the second interview I will have absolutely no choice but to tell them. I can guarantee they won't hire me.
I wish I could find a night job, working alone. I will get the work done, just with LOTS of potty breaks. I say night because that seems to be the best time for me not having episodes. Mine are so frequent and so severe, that it's rediculous. My belly can be fine one minute, then I feel the "rumble" and I have seconds sometimes. I liken it to the sound of pouring soda out of a 2 liter.
I know I'm whining a lot. I'm just so close to the point where I'm just going to give up! But, then what!!
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Post by tex »

Ryes,

Have you tried Imodium, to get you through critical times, such as job interviews? Once you figure out the correct dosage, it will buy you some time, by reducing the urgency.

Tex
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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.
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Post by Gabes-Apg »

Rhyes
I was working full time in the lead up to Dx, and still now 3.5 years post Dx work full time.
if you are overwhelmed by the Dx, still having symptoms, in my opinion now is not the time to be seeking a job and doing interviews.

If you are having symptoms then you are ingesting or having contact with something that is a trigger. you have to figure out what that is and eliminate it or minimise it.
Have you read the section about mast cells /histamine?

Stress is a big trigger for me, I can imagine the stress of going to the interview was enough to bring on D and more toilet visits.
you have to learn and teach yourself techniques how to stay calm and not let Stress affect you so much.

When I was first Dx'd, I had an intense job, lots of meetings, travel etc. I was transparent with my employer about the condition and some of my limitations and they were very supportive. I would block time in my diary before long meetings so I could go and relax, go the toilet.
I would schedule potentially stressful meetings late in the day as I knew, 4 hours later there would be a poop reaction and this meant I was at home when it happened.
and if I left the room at short notice, no one every questioned it.

my work clothes were and still are 'mc safe' darker colours, ability to wear double undies/liners if there was light seepage etc occurring
there were times for very important meetings I would take Imodium or questran to slow motility so that there were no issues whilst at work.

12 months post Dx, I chose to change jobs, and relocate to a smaller town (moved from large city almost 2 million people, to regional town with 100,000 people) so that I could better manage lifestyle and stress for the long term. I know my body, I know my limits and I live to that.
Again my current employer is aware of my condition, although MC issues are not a major worry for me now, I am seated near good toilet blocks, and both are stock with wipes, liners etc that I have placed in there.

The main advice I can give you, know your body, figure out what is causing the issues, and focus on healing your body/gut.
Go through the acceptance stages of the MC Dx, be at peace with it, it is part of you. You don't have to wear it as a big badge on your arm, but you do have to own it enough to live your life, be at peace with the diet changes /lifestyle changes / and the routine that you have to follow for your MC management plan.
for the times that MC mud may happen, (generally if there is stress) there are some little indicators about 10-20mins before, and I know that I need to get to a loo in that time.

and don't talk yourself out of the job! be positive. Sometimes all it takes is someone on the interview panel to have a celiac relative, or a relative with crohns and they may well be quite compassionate to your situation.
if you are unsettled about it, then yes they may well have hesitations about hiring you.
if you are at peace about it, and have a good attitude then they will be encouraged to hire you, as it shows you are motivated, you have tenacity to see things through and complete them, you will own and deal with your problems.

take it a sunrise at a time, most of all learn to walk before you try to run! figure out what is causing the issues, heal a bit, get your MC management plan figured out, and do some reading about transition/change, acceptance of things that are out of your control etc. there is a post in the main board recently about books that people have read that have helped them....
Gabes Ryan

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Post by tex »

Awesome post, Gabes!

:thumbsup:

Tex
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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.
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Post by Rhyes »

Thank you so much for the info Tex and Gabes. No, I haven't tried Imodium in a long time, but will. As far as trigger foods, there really seems to be none. Over the past 4 or 5 years I have tried just about everything. I have gone on very strict elimination diets for months and months at a time with absolutely no repreve. That's why I'm so confused about this. I've even fasted a few times. Water even sets me off sometimes. I can be fine one minute, and the next my belly is horribly distended and my roids literally push out (gross I know) and I will run to the bathroom and have, at times, massive amounts of fluid come out of me washing out undigested food, or just fluid. I am currently gluten and dairy free.
Gabes, your absolutely right at needing to make peace with this and accept it and I don't know why it's so difficult for me. I have been so depressed lately and can't seem to pull out of it. I think my mood, etc. right now is my lack of nutrients. I literally cannot think straight. When I try to face this, I feel so overwhelmed. This is probably the worst it's ever been. I've never had weight loss like this. I've always maintained, but now I'm just about at a 100lb's. I look skellital, especially my face, cheekbones, etc. I'm exhausted all the time, can't sleep well and easily get dizzy. I can't make the most simple decisions.
Anyway, I will work on it. I will try harder I guess. That's the only answer I have. I think I keep looking for answers to make this easier and there are none. All of you help me a lot though. I want you to know this. Thank you for that!!!
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Post by Gabes-Apg »

Try some vit d, it is very good for depression.

If you truly believe your symptoms are not food related then there may be an element of mental /emotions. Until you go through that grief and acceptance process, the bodies ability to heal, to be well and support you will be limited.
Highly recommend deepak chopra , ageless body, timeless mind. And the next book, reinventing the body, resurrecting the soul.

Have you read about mast cells histamines?
Have you had any blood tests recently? Are your hormones and /or thyroid aok?

I totally get the foggy brain, the overwhelmness, the fear, the unsettlement, I have been dealing with depression and anxiety long before mc and the subsequent dx's.
this week I had probably the most challenging week emotionally in over 7 years. I got through it, there is a beautiful rainbow after the storm.... With the right attitude, realistic expectations of myself, expectations of others etc, you can progress.

I agree it is crappy there is no quick fix, no genie to come and make everything magically ok.
You, have to own it, own the issues, own the challenges and step by step, day by day work through them.

Find your way to live life...... And make it work for you.....

Hugs that you can see the sun, not the grey clouds,
That you can take some deep breaths, feel the support of the pp crew that have been exactly where you are now, and made it through the storm, through the clean up and rebuild, and are living life.




:bigbighug:
Gabes Ryan

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Post by Rhyes »

Thank you so much Gabes :) I will try harder. I have another question. I'm just as full of them as I am........ Does anyone know if pussy gum sores are a symptom of malnutrician. I have a sore on my gum below my bottom teath. When I push on my gums, white puss comes out. It will hurt until I push all of it out, but I've had to do it for a few days now. Gosh, I'm falling apart. Also, totally different, does anyone have trouble eating peas?
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Post by tex »

Mouth sores of various types are commonly associated with MC. Pus is formed from white blood cells that are part of the leftover residue when fighting an infection.

If you react to peas, that implies that you may be sensitive to legumes, which would mean that you are sensitive to soy and all it's derivatives (including soy lecithins and soy oil). Soy in your diet may be the reason why you are unable to reach remission.

Tex
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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.
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Post by Gabes-Apg »

If there are issues with the gums, this would also be a reason for gut issues....

Swilling liquid zinc, or doing an oil draw will help the gums to heal....

The gum issue is another indicator that your body is inflamed, and needs to heal.
Gabes Ryan

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