Hate it when people "know everything"!

My biggest peeve about having this disease.

Hi,
I'm newly diagnosed and new to this site, and so very grateful to have found y'all. Oh my goodness, literally just this morning I was given "advice" by a maid I broke down and hired because I've finally grudgingly accepted I'm not well enough to clean my house on a regular basis. It's taken me a year to accept this fact and then she shows up with her bowl of fruit and stands in my kitchen touting the wonders of juicing and eating RAW fruits and vegetables, and best of all.... I should do a "cleanse because that would help your health a lot, especially the digestive problems". SERIOUSLY???... a "cleanse"?!!! Lord help me!!!
Numerous times I had to refrain myself from trying to explain to her how it's taken me 10 yrs to get diagnosed (Crohn's, Spondylitis, Sjogren's) and trust me, in an effort to help myself feel better during those years I had tried every concoction, fade-of-the-moment, and healthy diet de jour (not to mention ointment, rub, and OTC NSAID). Many with rather dire consequences. I knew from experience with other "helpful" souls that trying to explain my all this to her would only elicit a look like I'd just popped out a second head. I had to continually remind myself that she can't understand this isn't just "digestive troubles", and that the advice to try "Aleve, it works very well on my husbands arthritis" is not meant to insult. She simply has no point of reference for the trials of dealing with a chronic disease. I have to agree though, it is totally exhausting to listen to these well meaning people offer up "advice". I'd much rather they just offer up some compassion and support and leave the suggestions to the people who live these diseases, and people who are medically educated.
I'm so glad I found this forum, and this particular post at this precise moment! I literally felt like my head was going to explode from her "advice". I'm exhausted, and I'm not sure it wouldn't have been less strenuous for me to have just cleaned my house myself. LOL! But seeing this post and reading your comments has helped me realize I'm not alone in this. Thanks!
Chrissy

Oh, you guys are so funny! Thanks for sharing your stories. I have had similar experiences, and it's true that if you don't have a serious chronic illness, you have nooo idea what life is like. I used to be able to have lunch with co-workers or go out to dinner right from work. People know I have Crohn's, but still do not understand why I have to run home on my lunch hour, or I have to stop home before meeting for dinner. Sometimes I am so tempted to yell - I HAVE TO USE THE BATHROOM every few hours!!!!!! I HAVE CROHN'S!!!! Educate yourselves!! (When I hear of some illness or problem a friend has, I go on the Internet and find out about it so I know how to react.) The info is out there, if anyone really cares to know.
The worse is after a hospital stay, or bowel surgery, of which I've had 3, people will say, "Now you'll be all better!" And they smile. And I want to punch them. What part of "chronic" do they not understand?
Thanks for giving me the opportunity to vent!
And Datawraith - many people think there's something mentally wrong with me! I actually talked my doctor into letting me leave the hospital after 5 days in the ICU. They put me in a regular room, and I said no way am I staying here and being ignored by the staff. I can do that at home. Boy, was my family pissed at me! But like you said, I can take pills and eat jello at home!

It's an absolute pleasure to share stories so that people with Crohn's, know they're not alone in so many ways. I should have been participating on these forums, sharing stories, knowledge and experiences with others for as long as the forums have existed.

I'll give a little of my background. I first had symptoms of Crohn's at 7 years old, it went undiagnosed for 6 years. Many hospital stays as a child, weeks at a time, full battery of tests.
I had also been sent to a Psychiatrist because those doctors too thought it was a mental issue. The Psychiatrist deemed me to be normal, so take that Mr. Gastroenterologist who thought me to be mental.

At the age of 13, I had been extremely ill due to a flare up and rushed to an ER. I was completely dehydrated, vomiting bile, running a fever and in massive pain. I'm rushed off to surgery as it was believed my appendix was about to burst. I had unnecessary surgery to discover I had Crohn's disease but hey, I don't have worry about my appendix any longer.

In any case, finally having a diagnosis didn't really change anything for me. At the time, 1979, so little was known about Crohn's and treatments, compared to today.
I didn't have the luxury of the internet to find out side effects of medications the physicians wanted to prescribe, such as Azulfidine, Imodium and Prednisone. I did my research at the local library and made use of Physician's medical reference books, anything I could read to educate myself on the disease and medications. Over the years as a teen I kept myself well informed much to the dismay of treating physicians, I did question everything.

When I had that stay in the hospital for 18 days, the lower bowel resection, I happen to work in the same hospital. To go a little deeper into my original story, the time of my 6 day stay (when I demanded to be discharged) up until my 18 day stay and surgery, it was hell! I did miss a few days of work but there were many days I managed to crawl into work.
With my position at the hospital, I had to punch in with a time clock and punch out. I had a window in which to punch in and punch out of, 20 minutes. Meaning anything outside of the window, I could been written up at my managers discretion. I had been written up, formally, 2 times and a 3rd time would mean my termination. I did attempt numerous times to speak with my manager who eventually called me a liar. Yes, called me a liar.
Then when I had been admitted as a patient in the hospital I worked at, in my 18 day stay, my manager came to my room to apologize but I was aware that if I punched in or out a minute early or late, I would be terminated. I told him to get lost, being kind here.
I remained working at the hospital without incident for an additional year, I worked there in total, 6 years.
I gave my 2 week notice, changed careers because no matter how long I continued to work at that hospital, I couldn't be early or late, one single time or I would have been terminated. There was nothing that could have been done about my previous situation of my manager and the write ups. They were in paper, formal, signed by him but of course, never signed by me.

That is an example of what I'm sure many with Crohn's would think, "I wish they could feel that pain for just 2 minutes and see how they would cope with it." That manager was too fearful of his job, why? He was an extremely nervous guy, he smoked 3 packs of cigarettes a day. He spent more time at exits to smoke, then he did working, actually doing his job.

I recently turned 46, I've had Crohn's for 39 years. Since my departure from that hospital, I have been working steady all over the metropolitan area of NJ/NY. Long hours in NYC, Brooklyn and 3 hour commutes a day have been the norm for me over 16 years. Recently my Crohn's has returned exactly where the lower bowel resection had been performed.
In addition to Crohn's I also have degenerative disc disease, herniated discs, arthritis in my lower spine and chronic fatigue.

I went out of work on disability over a year ago, if anyone has been in the same situation of dealing with insurance companies, Long Term Disability (LTD), you understand the nightmare it is.
Insurance companies can and do drop you under the most ridiculous circumstances. Despite the backing of Gastroenterologists, numerous Colonoscopies, Endoscopy procedure (capsule) with 59k pictures, a nurse determined for the insurance company, I could do "sedentary work."
Oh gee, I could have told you I can lift 20 pounds, hell, a lot more than that. They know, as I and anyone with Crohn's, that lifting 20 pounds has nothing to do with Crohn's and the many ways it can effect you. It's all about the profit and not paying you 60% of your salary for as long as you're disabled. The particular insurance company I have, to supposedly continue my coverage under these circumstances, made 3 billion dollars profit last year.

If anyone is currently going through or believes they may wind up in this very situation, please feel free to ask me questions. I now have a lot insight and resources to help out.
Just understand, it is a very long, drawn out process but when you're ill, what choice do we have?
I have had to hire an ERISA attorney, currently waiting on a determination for SSDI and SSI. The frustration continues in a different decade.

oldcrohnie, we do share similar stories, roughly the same gap with the resections and relapses, year of diagnosis too. Yep, I remember hearing "Illeitis" a lot back then and now, never.
Do you receive B-12 shots? I found out 2 years ago that my body wasn't pooling B-12 for energy and now have to go for the shots every 2 weeks. People without Crohn's have problems absorbing B-12, so with Crohn's it is a lot more of a problem for us.

The biggest problem I had to cause me to go on disability, Crohn's of course but urgency worse than I ever encountered and my commute. I'd have to sit in bumper to bumper traffic on the Garden State Parkway for an hour and a half to get to work. The same amount of time coming home, even worse during the summer with people traveling to the beaches. The traffic backed up the Parkway from south to central NJ, to the top of NJ, the very last exit before upstate NY. My manager wouldn't compromise and allow me to work from home, which had been 100% feasible. It was his call and he said, "no."
I was able to carry my medical insurance at a cost of over $600 a month because I had been receiving the 60% of my base salary from STD to LTD. The insurance company would call me to offer retraining, asking if they could call my employer to see if I had a job to return to. I kept telling the person from the insurance company who headed up the retraining, "no, do not call my employer." They did, I'm sure it came off as badgering to my manager, once again it was his decision alone to have me back and he advised her that I didn't have a job to return to. Within a month, the insurance company terminated my LTD payments and claim. Once that happens, the appeal process is up to 180 days and you need to exhaust all administrative options before having a court hearing. Which is without a jury, you're only suing to claim what was rightfully yours to begin with, the LTD payments. Under ERISA, it's Federal and doesn't allow anything more than the payments owed to you and occasionally attorney fees. It is a rigged system against people who are disabled. You're left hung out to dry, no income and the insurance companies bank on the fact that 9 out of 10 do not contest their terminated claims.
I was an employee of an international company with 145,000 employees, I believe that was beneficial to keeping the insurance company honest. Once I had no longer been an employee of that company, the insurance company terminated my claim.

If I could have had things work out with my employer, worked from home in any capacity, I most definitely would have. I did explain to my manager what Crohn's disease can do to one but it didn't matter to him. Our last communication he wished me luck, luck had and has nothing to do with it.

I too never told people I had Crohn's and still don't unless it's a necessity for them to know. I never want people to feel sorry for me (if they were to).
In total I have worked 30 years, I have studied martial arts for 20 plus years, worked out 25 years, I even joined the military at 18, all with Crohn's. At times, I wonder if I would ever have been determined as I've always been but without Crohn's.

oldcrohnie I think it's great that you want to help those diagnosed with Crohn's and have done so previously. I will be a lot more active in regards to these forums to hopefully provide some help, any form that I can for others. Previously I was too busy, working, commuting and other things.
I know having Crohn's so early on changed my perspective on life and I didn't take things for granted. As you know oldcrohnie having Crohn's back in the late 70s, 80s, people had no idea wth it was, lol. I know I felt very alone about having it and didn't know one person who had it.
Now, thankfully people can communicate with others and as I've seen on the forums over all, feel much better to know they're not alone.
We all have our ups and downs, there are going to be those times despite our best efforts to combat what is happening to us, it can get the better of us, for a while.

Hope you're having a great day oldcrohnie and everyone!
Off to take my mom to the doctors, she was recently diagnosed with breast cancer. Time for her to beat what she is going through and be a survivor!

Is your coworker on reddit, by chance? I've been arguing back and forth with some nutjob who says that because they cured their psoriasis with a 30 day water fast, that we should all be doing that to cure our diseases.

*Love* getting advice from these kinds of nuts who don't even HAVE the disease and think that watching a netflix video and doing some research online suddenly makes them an expert.

Looking forward to it!

Oldcrohnie,
LOL You mentioning your family yelling after "See you in an hour" made me laugh because my friends will yell after me "Good luck! Hope everything comes out okay!" as I head to the bathroom. LOL I've had so much trouble with constipation and then the Ileostomy, so they mean well, it just makes me laugh.

I think the advice that bothers me the most is when I tell people I have CD and they DO know someone else with it. Then they try to tell me all about what the other person does that works. Most of them are able to control the condition with just diet and maybe a few maintenance meds. I asked my GI about it and he said, "Yes, some people can do that. You are not one of them." This was said in a helpful way, not a cash way to get money. I really lucked out with him as my GI, and I was so sad to move to another state a couple of months ago. But he told me that even though I was leaving, he wouldn't desert me and that I could call him anytime if I had questions even though I wasn't on the insurance he takes anymore. But I digress - anyway, I just hate it when people who don't have it bad are "cured" and then other people seem to think that you should be cured that way, too.

Ok, done venting!

I hate it when another person with CD tells me what worked for them and then look at me like I'm nuts when I said it doesn't work for me. I've only been diagnosed for nine months and I've already had to deal with that from four different people. *sigh*