Yes, another Crohn's Newbie Story and Questions (Slightly long winded post, sorry!)

[new2crohnsMH]

Hi all,

So...yes, another newbie with a story to share.

First, I've been reading around here for awhile and am just now working up the courage to post. I'm hoping maybe it can bring some positive perspective to the "Crohn's experience."

I've had "stomach problems" for a long, long time. Mostly pain and diarrhea, but when not in that state, always constipated. Not fun. Always one extreme or the other.

After letting this go for a few years and just dealing with it, I was starting to miss a lot of work and kind of felt it was maybe time to get this addressed in one way, shape, or form. So, this initiated the visit with GI number one.

After many tests, including sigmoidoscopy, lactose intolerance testing, two upper endoscopies, a test that I can't remember the name of that involved some X-rays of the esophagus and swallowing barium, food allergy testing, small bowel followthrough series, and a test for bacterial overgrowth, I was diagnosed with Irritable Bowel Syndrome. Joy. After being started on some medications for that, I stayed on those and continued to deal with the problems in a somewhat reduced form for the next 5 years; albeit one of the medications, amitriptyline, was increased almost ten fold progressively during that time. This made me EXTREMELY tired and definitely was a big effect on my life, but I felt that this was as good as it was going to get, although it wasn't really much better. I was basically sleeping 12 hours a day and working 10 hours a day, leaving little time for anything else, plus still dealing with the pain and alternating C and D.


Fast forward to the last 18 months. The problems were getting worse. The pain, alternating constipation and diarrheah, and the extreme tiredness from the medication were all combining together in a perfect storm to really affect my life. It was driving me crazy, and I was starting to miss even more work, which isn't good.

I talked to my GP doctor as I had stopped going to my other GI. I was starting to get a feeling of distrust from him and I didn't feel I needed that, plus another family member with Crohn's went to him and was having a bad experience. My GP referred me to another doctor at a state teaching school a few months ago. Looking back, so far this is probably one of the best things that has ever happened to me.

After a lengthy consult, he did one test, a "full" colonoscopy he called it. Within one test and some biopsies, he confirmed the diagnosis. I was in one way relieved, and in another angry at my other GI for missing this by never giving a colonoscopy. The doctor indicated I had had this problem likely for a fair amount of time based on the way my gut looked on exam. In a way I have to kind of take this with a grain of salt though as not everybody's perfect.

So, now I'm taking Entocort, a much reduced amount of the amitriptyline to try and manage some of the cramping pain, Azathioprine, and one other med for cramping, Hyoscyamine, plus Prevacid for esophagitis. I officially feel like a walking pharmacy .

It's been a few weeks on this and I have a hard time telling whether I'm feeling better. Family says they think I am as they say my personality's coming back, but I think some of that is attributable to lack of extreme tiredness all the time. I'm still missing three to five days a month from work, and the pain is definitely still there, although MAYBE slightly reduced. The doctor said the combination can take awhile to work, especially with the pronounced amount of inflammation he saw on my colonoscopy. I guess maybe I'm going to have to keep being patient, although it would be awesome to not have to miss any more work.

Missing work is the single most stressful thing for me, second to the pain. I've been using these two factors to gauge whether I see improvement:
less time off from work and less overall pain felt (yes, I realistically know this will prbably never go completely away).

And to my questions: For those of you out there, do you think these are reasonable ways to be looking at my feelings regarding this disease? I really hate missing work as it affects so many people beside me, and for that reason is a huge stress indicator for me, second only to actually losing the job. Should I maybe be looking for something more positive? I guess in the end I'm worried about work, more so than myself.

I also tend to get a bit afraid as I have a family member with Crohns as well. They have had multiple resections of the bowel, as well as removal of other components of the GI system. I tend to worry I'm headed down the same road at some point.

Sorry all for being so long winded. I only wanted to try and do this once.

Sincere advanced thank you for your time reading and responses.

 

[Dexky]

What I'd be is PISSED OFF. The first GI let you suffer for 5 years w/o even considering it might be crohn's even though crohn's runs in your family. He multiplied the dosage of a med that obviously wasn't working X ten. Glad you found someone to take your symptoms seriously.

Hope things are improving.

 

[MapleLeafGirl]

Welcome to the forum! Try not to stress out about work too much as that can only make things worse. Do you work for an understanding company? Maybe you could talk to them about your concerns and the way you are feeling. Maybe you could work from home on days you are not feeling well.

Also, try not to stress about the road your going down. Focus on the present as that is the only thing you really have any control over. Read some of Regular Joe's posts as he has some great advice on just worrying about the current day.

 

[crohnie2]

Welcome! I agree with what has been said about stress. Try to avoid it, as it can make you feel worse (I know this sometimes is much easier said than done).

I understand your concerns about missing work, as I have the same issues. My company acts like I'm asking the world from them to let me go to a doctor appointment! What I would try to explain to your employer (if they're difficult to deal with) is that you need to try to take care of yourself now, so it doesn't turn into a bigger problem later. You may also be able to get Family Medical Leave (FML) time approved to go to dr appts. Just requires completion of forms by your GI spec. I think it helps to have these FML forms on file to prove that you have a serious illness and justify why you're out of office.

Take care!

 

[belle1999]

Welcome to the forum! I stressed about work, too. I luckily have some great employers and they were very understanding. Hopefully, your employers will be as well.

Good point, crohnie2. I hadn't thought of keeping FMLA forms on hand.

 

[Astra]

Hi new2crohns
and welcome

mmm familiar story! been there, done that! only mine was 15 years!!
Anyway, not to dwell on that anymore! it's sooooooo over!
And that's how to look at this! Yesterday is so over, tomorrow is a new day, take each day as it comes, and face it with determination, get a mantra, and say it every day!
Go to work, and go home if you don't feel so good, but you need to tell your bosses what's going on, if they are understanding everything will be ok, and they can't fire you, you're ill, that's discrimination!
Don't fret about other Crohnie family members, just concentrate on finding the strength to manage your own, and we are here to support you, we've all been afraid at some point.
lotsa luv
Joan xxx

 

[Regular Joe]

Hi New2,

I totally understand how you feel about missing work. Over the past 5 months, I've been missing 3-8 days per month, sometimes even more.

I' had 2 major tasks reassigned to a more "agressive" co-worker. I've had my former work schedule, which I had for the past 8-9 years, terminated. And I was given a different time/work schedule that was nowhere near convenient or easy to get used to. I've had a negative performance evaluation resulting in no yearly bonus at the seasonal time when most needed. I've also been getting "micro-managed" now like getting bitched out for personal calls on my cell phone.

None of these things were an issue prior to the onset of this flare. Whenever I attend meetings, they perpetually say "We understand that you're sick and have medical documentation to show it." But they don't understand or they wouldn't be taking actions against me involving pay and assignments. I was dreading coming in day to day.

Looking at your feelings, you ask? What an EXCELLENT question. Extremely difficult to answer, but I think I know exactly where you're coming from because I'm right there in the same place at my job.

I'm at a place in seniority where I can be terminated, but I will qualify for "involuntary retirement" which really means an early retirement. My retirement benefits won't be significantly effected. But it will be making a financial plunge into an area that I hadn't yet planned for. So I think where we differ is that you fear losing your job, and I'm somewhat indifferent because I will be facing retirement in less than 4 years regardless. Do I want to start today?

I feel ambivalent. That's a very exact way to describe my feelings. Yet it is a very "inexact" place to be present with my feelings. But that is reality in my life today. One single "I don't know" after 28 years of service.

I'm of two minds. One mind rightly believes that I've "paid my dues", my kids are grown, I have a fair-sized 401K, and why not now? The other side believes, probably like you, What in the heck are you gonna do next? I refuse to be associated with "middle-aged baby boomers" with a beer gut, watching sports on TV, and giving up their sexual drive so that their wives become "Cougars". Unfortunately, I can't hide my grey hair.

In other words, my identity is probably tied to "productivity" in a material world which admires the belief "whoever dies with the most toys wins". If I'm not employed, my peer base changes, my friends look at me weird, my girlfriend starts wondering and worrying about financial security, and I start doubting my self-worth. Then toss in a case of "mild Crohn's diesease" with a flare in progress, and I could easily turn into that "thing" I dread: a "middle age baby boomer".

Someone close to me, a male friend to whom I've allowed myself to be "accountable" to, pointed me in the right direction. Whatever my decision is to be, I should begin planning a new path. Then follow the plan by taking constructive actions that will expedite the process. In other words, don't pout like a child and cry "woe is me". Whether I retire or stay at work, my attitude needs to change.

I haven't made a decision yet, but you know what? I started believing something just by keeping tabs on my environment. I noticed that "momentum" tends to drive "destiny". So what I'm beginning to realize is that whatever I need to do will become evidient. Life will teach me what lessons I need to learn if I'm keen enough to pay attention. I don't have to struggle with fear or uncertainty unless I want to, or choose to do so. Whatever is needed becomes evident.

Well I don't have a beer gut, I don't watch much TV, I have a stronger sex drive then at any other younger age in my life (which tends to annoy women my age - they wonder where I was 10 years ago). I'm not ready to "slow down" and get old by this world's standards. I want to dance. I want to make my surroundings beautiful. I want to prove to myself that I'm competant and capable. I want to keep on making love for hours without viagra!

So the river seems to be flowing fine without me needing to push it another way. Maybe you can see how my destiny is becoming evident? I'm realizing that as we speak.

The answer to your question about how you should look at your feelings is already there before you, in your own unique circumstances. There is a river in your life that is flowing fine without the need for you to change it's direction (read: being fearful or worrisome). My guess is that, like me, your life will teach you the lessons you need to learn if you allow it.

The only thing I can suggest is that constructive action never fails. If you are constructive with your life whatever the circumstances, the outcome will always be better than what you might expect.

By the way, if you think living this way is easy....bwahahahahaha. It may be simple, but it takes me lots of hard work from morning to bedtime, and doing things that i almost always don't "feel like" doing. Such is the pricetag of maturity.

Good luck.

 

[Astra]

Hi Joe

I love you!

xxx

 

[Regular Joe]

Joan...you read my mind???
I love you, too :wub:

 

[Astra]

:ylol2:

great minds think alike!

 

[GoJohnnyGo]

I have to echo what Dexky says. Anyone with your symptoms and a family history of Crohn's should have been fully checked out. Unacceptable.

 

[new2crohnsMH]

Hi all, sorry for being so late in replying. Laid out again flaring this week . Driving me nuts.

Moving on....

@Dexky/GoJohnnyGo, yeah, good point. I think in a way I'm over it at this point. I just want to move on and work with the doc I have now as he seems to be a bit more knowing about what's going on, not to mention he found it so quick so I have to at least think he half knows what's going on because I'm dang sure he knows more than I do .

@Crohnie2/MapleLeaf/Belle, so far my bosses have been fairly understanding, but I feel like a jerk more to my coworkers as I'm sure this gives a perception of slacking off or just plain not wanting to come to work. RE: FMLA, I just kicked off that process this last week after my latest stretch of missing work. Hopefully if everything goes OK there maybe that will lift some of the stress off my back. Then if somebody says something I can tell them to go talk to the boss, which I'm sure 99.5% of them will not, but the .5% that would would likely re-consider as I answer a ton of questions from them everyday so they know better than to piss me off at this point.

 

[new2crohnsMH]

RegularJoe,

Yeah, those negative things at work sound familiar, but fortunately this hasn't hit me long enough that it has resulted in a negative performance evaluation, but it may this year. Yearly bonus? I'd love to have a real one of those . My last one added up to something like 2 or 3 bucks a month after taking out losses for the year; was tempted to tell them to keep it. I guess it's one less thing I have to worry about since I already know I won't get one.

I can see where you're at regarding retirement vs. unemployment and the like. For me, I definitely can't say I've paid any dues as I'm in my mid 20's so have a hell of a long way to go yet. I'm in IT as a profession so the opportunities are out there, but that also raises another problem, a saturated market. There's only so many of us in the US anymore.

I really like the explanation you gave though as that opens another perspective as to how to look at things.

Maybe concentrating more on what's positive compared to what's negative is something I need to do a bit more actively. It just seems like the negative's taking over right now, but I guess I could easily say that one positive thing about worrying about work is that I have a job to worry about, and that said job has good health insurance. Without that, I'd be up a serious creek without a paddle at the moment.

Thank you much for the additional perspective that maybe there is some light at the end of this crappy (literally in this disease's case ) tunnel.

 

[Aura]

Hi, I'm new here to. I have been interested in reading the comments about work regarding employers and co-workers. In an ideal world it would be great to think that honesty and transparency of information about the Chron's would be a catalyst to enouraging empathy with the people you work alongside. The downside is that not all human beings seem to be able to demonstrate empathy and an ethic of care for others.

At work my co-workers in my current place and in previous places too like it when I am sick as I work at a slower rate that is more suited to their output levels. I have recently had a performance review where the outcome was that I need to work slower and not do as much. I find this strange.

Last week the class I teach (adult students) were so worried about me that they went and got another lecturer to check on me. They knew my chron's was active. I talked to them quite openly about that and we have reached a shared understanding on an action plan. On Monday I am about to do the same with my colleagues. They seem to be over zealous in their worry and i hope to share with them my management strategies and develop action plans until I kick it in remission again.

If the people you work with demonstrate ethic of care and empathy you may be more likely to find a way forward. With egocentric players other strategies may need to be employed. I do wish you well with your co-workers. Sorry for a long winded response.