Another Newcomer

[gillis]

Thanks for that info, Tex. I think I will stick with pepto on a "need to" basis as I'll go several days with only one BM a day and then one day have a few. I guess I'll finish the probiotics that I bought but not bother buying them again as they are pretty expensive.

My other question to you all is if MC got in the way of your careers. If you're retired are you still managing an enjoyable lifestyle? I'd love to hear how you all coped with it.

thanks a million for all the support already.
Gillis

[tex]

My other question to you all is if MC got in the way of your careers.

Did it ever. I own my own small business, and at the time my symptoms became unmanageable, my business was rapidly expanding, and it was at a critical point, where major decisions had to be made, and then reliably executed. Logistics were an everyday problem. Before the health issues began, I was working 7 days per week, from about 6 or 7 am, until 10 or 11 pm every night, (except that we usually didn't start work on Sundays, until noon.

I suddenly found that on many days, I couldn't work but part-time, and on a few days, I couldn't work at all. The worst part was the brain fog - I was unable to think clearly enough to make major decisions, much of the time, and traveling, of course, was a major problem. When you're an entrepreneur, you usually don't have anyone else to fall back on, for the critical stuff, so I had no choice but to ditch my expansion plans, and I ended up downsizing my business.

I wasted over two years, first trying to find a solution by means of medical channels, (the final verdict was that there was nothing wrong with me), and then trying to figure it out on my own. By the time I figured out what was going on, I had accrued so much intestinal damage, that it took a year and a half to reach remission. Three and a half years is way too long to not be able to perform at work, so it's no wonder that I had to downsize. Once I reached remission, I was pretty much able to resume working normally again, but the window of opportunity for expanding my business was gone, of course, and another health issue soon came along to slow me down, again, anyway, (a stenosis in my Sigmoid colon, resulting in emergency abdominal surgery, to remove a blockage, which fortunately, turned out to not be malignant).

So now, I'm in remission, (except for rare slip-ups in my diet, of course), partially retired, and enjoying life, but I have to admit that I sometimes wonder how much more enjoyable it might have been, if MC hadn't commandeered three and a half years of my life. Still, if it weren't for this disease, I never would have met all the wonderful people here in our internet family, so I'm grateful for that. When one door closes, another door opens.

Tex

[mbeezie]

Gillis,

Like Tex, my career was also impacted, in fact, there are some similarities. My illness started more dramatically than most - triggered by a flu shot that landed me in the hospital. The day after the flu shot was to be openeing day for my business/private practice. Needless to say that didn't happen. The 18 months building up to my illness were very stressful, involving a major move and completing a rigorous internship in record time, in addition to being a mom of an active 6 year old. My business started slowly, obviously, and I did have lots of brain fog. I can remember writing a rent check for my business and they returned it because I wrote it out wrong - when I looked at the check it made no sense. When I did start seeing clients there were times when I would have to end sessions early. My symptoms were mainly neurological at this point, but GI symptoms steadily emerged over the next 14 months. I am still not in remission but doing much better and my business is now growing steadily. Sure seems like stress plays a big role. My illness changed my work goals. I had planned on working 5 days per week but now have settled on 3, which allows me to have down time. The slower pace seems to be what I needed all along- more time to be a mom, more time to exercise etc. Tex is right, when one door closes, another opens.

Mary Beth

[ant]

Dear Gillis,

For what it is worth here is my experience..... I was working in a fairly high profile and (in retrospect) stressful job in Television in India (management - not in front of the camera). I was knocked out for about a week at the onset (with what I assume was the MC triggering illness). Then went back to work and was able to control my need for BMs during the day because I eat practically nothing. I was averaging about 15 BMs a day of which the first five were in the morning before going to work. My office was near the loo, so I could carry on with most day-to-day office work with minor interruptions. But what I could not do (to start with) was socialize in the evenings with colleagues, clients etc. I was told I should not drink alcohol and I was embarrassed about the need to be near the loo. (TV is about glamor and this was not exactly the right image for a TV exec!!). Also I was getting tired. So I used to go home at around 8pm and miss out on all the corporate networking after hours. After about a two months it was obvious to me that I should go back home to Hong Kong and take stock of what do. (that is also when I was Dx with LC). I felt I could not fight in the corporate world as a full time manager with one hand tied behind my back.

Now (about six months on) things are different: First, I can drink wine so I can join in with friends and business contacts on a social level and I can go to restaurants (and if I order carefully) seem to get away with it. Second, after two weeks of entocort I am much better and am fixing client meetings etc. hoping to build up my consulting business. (Actually, before I was on entocort, I would take Imodium if I had a really crucial long meeting and needed to know I would last. My GI doc said I should do that if I needed the social reassurance - that was good advice. But Immodium only delayed the D, just allowed me to time shift.)

Now I am taking stock of my business options. I have my own business and can control how much I do. The key will be when I start coming off entocort. Only after that will I know what I can do. But one thing is for sure, I have come to the realization that I will never again be at the beck and call of some "Mr Big" boss. I will probably take a more academic and back room approach, it least for now.

So, I have rambled on sorry.

Key points for me: a desk near the loo is useful in the office; Immodium was a useful safety net for out-of-office, long meetings; I was able to start socializing once in some sort of remission (for me that's less then six DM a day - this a 'social' not necessarily 'medical' remission). This whole thing makes you rethink your life and priorities. And this website has certainly helped remind me that life is a about people first. Good luck and all the best, ant

[gillis]

Tex, Mary Beth and Ant,

thanks so much for sharing. Those were all interesting and very helpful stories. I also work in Television, Ant. In Los Angeles and my fear is obviously where this is going to take me next however because I seem to have a mild case I am hopeful.

I plan on taking the month of August off and head back east to relax with family. I'm scheduled to start a new job in September and I'm hoping I'm up for it.

Have a great week, everyone.

Gillis

[Rach]

I've only just finished the first year of my first "real job" so I can't comment much on how MC had affected my career, but I can certainly say that MC had a huge impact on me during school. I was diagnosed in high school, and had a terrible time balancing homework, friends, extracurricular activities, sports, etc with being sick and fatigued. Stress has always been a major trigger of my symptoms, which meant that exam time in college generally induced flare ups. By and large, my symptoms have been a lot easier to cope with at work than they had been at school -- thanks to an awesome work environment and an incredible boss. I'd be happier if my stomach didn't get so gurgly so often, but I'm nowhere near remission yet and I'm hoping that will improve in the future.

Rachel

[Polly]

Hi Gillis and

Interesting thread here. I have never had much luck with probiotics, mainly because many of them also contain dairy or another of my intolerances (lactobacilli cultures are usually grown on milk). Probiotics must be continued indefinitely - they never establish a permanent colony. This is thought to be due to the fact that the ORIGINAL colon bacterial colonization we have as infants has been passed thru a human being (our mother) which somehow sensitizes the bacteria to be permanent. Some researchers in England are trying to pass fecal bacteria thru a human and then make them into probiotics to see if they might have a lasting effect..

Mary Beth, I am curious about what kind of practice you were starting up? Also, I am intrigued about your reaction to that flu shot. I have refused to take the flu shot ever since I developed MC, even though I am considered high risk as a physician. Instead I have been taking supplemental vitamin D -this past winter I took 5000 IUs a day. Also, I am curious about your neuro symptoms. Please elaborate. Recently I have noticed increasing problems with balance.

Ant, what kind of business do you own?

When I look back, I can see signs of gluten sensitivity long before my actual diagnosis of LC. My gut was always my target organ....the minute I was stressed, I would have diarrhea. Years ago I remember feeling awful on Sat. AMs, after eating pizza, garlic bread, etc. at my local Italian restaurant the night before. I suffered for many years from neck/shoulder pain and generalized stiffness upon arising in the AM and chalked it up to the old aging process as well as an old whiplash injury.. It completely disappeared when I started the paleo diet and eliminated my intolerances. In fact, I feel younger and have much more energy today than I did 20 years ago!

Love,

Polly

[tex]

Polly,

Hey! I find it very interesting that you should mention balance issues. I don't believe we've ever discussed that before, as a possible side effect of MC.

During the last couple of years, I've noticed that I'm having balance issues, also. I just assumed that it was due to aging, and wrote it off without any further thought, since I don't recall seeing anyone else mention it, in the past, (except as a side effect of a med, or an inner ear problem, etc.). Maybe there's more to it than that. Some days, it seems to be more of a problem, than it does at other times, but maybe that's just my imagination.

This is an interesting concept.

Love,
Tex

[ant]

Polly and Tex,

I have had many balance issues. Back in 1997 (then 43 yrs old so not that old?) I had typhoid. One week of fever and delirium. Just stayed in bed and gradually recovered with lots of water. When it was over I noticed I had a balance problem, (light head, sometimes a slight sense of falling, a little uneasy walking) also very tired feeling. Went to the doc, had some blood tests and that's when they found out I had had typhoid. My balance issues and fatigue carried on for a few years and I also started getting occasional ringing in the ears. I had MRIs and diabetes test etc etc. everything 'normal'. Also quite often had night sweats.

(I have been having the night sweats on and off since aged 28 when I also started to have occasional reflux which was dx as a hiatus hernia - I had been taking gaviscon tablets on and off for over 20 years before my LC dx last year. The reflux / MC connection is pretty well covered elsewhere in this forum, but back to balance.....)

About three years from the initial typhoid I as pretty much better. In fact I remember finally feeling great having a game of golf when I suddenly had D. Next day I was on a flight and I had a full vertigo episode. Followed by mini - vertigo/balance issues for the next week (and a huge thirst). Then another big vertigo attack which sent me to hospital for 5 days and a course of anti-histamine for a few weeks. Over time my balance got better and I was Dx with labyrinthises.(spelling??). It took about 3 years for me to feel that my balance was fully back to normal, although I still occasionally have a slight sense of balance problem (but like you Tex, I was putting that down to age). Don't know if this is of any use in joining up dots for anyone.....

(One last point, since I am banging on about my medical history, here is another piece of the puzzle that may have a relationship to my MC. I had osteomielitis aged 14 and had major courses of oral antibiotics to get rid of it. Also had quite a lot of antibiotics for other things on various occasions during my life (including from about 5 years ago to deal with occasional D).

Polly, my business is a consultancy that advises companies and other entities on brand positioning and communications. It also does quite a bit of market research analysis. The focus is on Asia. (You might be interested that one of my research project involved helping to advocate for a Children's Hospital in Hong Kong.... which finally is now government policy. Of course executing that policy is another thing. More government studies, two Universities with Medical Faculties involved.... I am sure you get the picture...

All the best, Ant

[/i]

[ant]

Woooopps I tried to do a quick edit and ended up posting twice (above). Sorry. Is it possible to delete a post if it gets duplicated after it has been submitted? silly ant

[MaggieRedwings]

Morning All,

I also am very interested in the balance issues since this is something that seems to have stuck with me well after ending Entocort. Was blaming it on that but think not. Wonder if there is a link?

Love, Maggie

[tex]

Ant,

Yes, you can delete your own post, so long as it is the last one in a thread, (IOW, as long as no one has already posted after you). To delete a post, just click on that "X", in the upper right corner of your post, (to the right of the "edit" button). As you can see, I've already removed the first one in your set of duplicates, so that the edited post remains.

Theoretically, the system shouldn't allow duplicates to be entered, but we all know that computers don't always follow the rules. LOL.

Tex

[tex]

Maggie,

I can remember reading somewhere that adrenal insufficiency can contribute to vertigo/balance issues, also. The corticosteroids are famous for suppressing adrenal output, of course, but as we know, budesonide is the least likely to do that, thanks to the enteric coating on Entocort EC, which prevents 85 to 90% of the budesonide from entering the bloodstream. Because of that low systemic effect, and the fact that you used Entocort for only a relatively short time, it's difficult to visualize how it might have caused your adrenal function to be permanently suppressed, unless, of course, you happen to be extremely sensitive to budesonide, (which you apparently are, as evidenced by your neurologic effects from it).

I can't remember if you ever mentioned that your doctors had done any tests to verify your adrenal function, or not. Since the numbers vary during the day, it's kind of a tricky testing process, anyway. The point is, it's certainly possible that there could be a link.

Love,
Tex

[Gayle]

Hi Gillis,

It depends on what ones occupation is as to whether or not MC can be compatile with one’s work situation I suppose. In my particular sitution, I guess I was fortunate that when, I was first affected by MC, I was retired. (If that is a good way to put it?)

With my work situation, I NEVER would have been able to continue in my profession with MC. My occupation always had me serving a schedule, which was set up to service both a large department and the major players. I needed to be both physically and mentally present at all times. --- OR --- I had to be relieved by another person of equal status (when or if such a person was available.) Frequent Urgent potty needs would not have been able to be accommodated.

Some folks do learn to manage their MC quite well for the most part, and many occupations can be arranged so as to be able to co-exist with this condition. I hope this will be true for you. It is very difficult to have to change careers mid-path due to this kind of health related condition.




Wishing you well,

Gayle

[kscolorado]

Hi Gillis,
Sorry the late welcome. I am new too. My husband and I own restaurants. It hasn't been a problem for me except sometimes I feel embarrassed at how many times I go to the potty. There are two ways to get to the restrooms at one of our restaurants (the one I am mostly at because our office is upstairs) and I alternate hoping that the young hostess doesn't notice welcome!