forget answers, how do you just survive?
#213943 - 09/16/05 03:09 PM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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if anyone remembers from previous posts ... I've been on Heather's diet for over a year and still having problems with D. But I do (did) manage to keep it mostly under control with meds and diet.
The last couple months things have gotten worse and worse and the last couple weeks have been KILLING me. I am constantly having brutal D attacks with agonizing pain. There is absolutely nothing I've found to help -- all I can do is endure until it's over. I'm just drinking plain lukewarm bottled water and eating homemade white bread at this point.
I have a new GI and a second colonoscopy (the first was done a year ago) is coming up in about a week and a half. He won't treat me until after the colonoscopy results. My PCP doesn't want to do anything because that's why I'm going to the GI. After talking to the PCP's office (and emphasizing that I have gone through 120 anti-spasmodics in the last six weeks), she's agreed to see me Monday and I think she will be open to prescribing something stronger. I am going to ask to try Donnatel. Is there anything else anti-diarrheal out there that is stronger than Imodium? I've heard Lomotil mentioned, is that really any stronger? The Imodium isn't doing a thing for me at this point except that with each D attack the stuff that comes out initially is a chalky grey-green. (In a previous life, I would have been grossed out by this revelation.)
I work full-time and I live nearly an hour away from the office. I've had to miss at least some time five times in the last two weeks because of attacks. I don't know why I'm asking this because I've been reading these boards so long that I've probably heard every suggestion out there, but what else can I do to try and fight off attacks? I am getting pretty desperate.
I can't drink tea (gives me D), can't do peppermint (GERD), can't do SFS (D gets worse). I do take meds like clockwork, do sip lukewarm water gradually, and do slowly eat bread to keep stomach from getting empty. Don't know what else to do.
Stupid body!   
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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I'm sorry, Jen, no new ideas on stuff you can try. I just wanted to say I'm so, so sorry you're having such an awful time. I hope the Donnatol provides some relief.
Any chance you could ask your workplace for a leave of absence - maybe under FMLA - for a few weeks or a month, until you get your colonoscopy and your GI figures out how sick you are and actually does something for you?
BTW, I can't remember from your earlier posts, but has anyone thought about your gallbladder? Whenever I hear "agonizing pain", I think "gallbaldder".
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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So sorry your feeling so awful, Jen. You and me have such polar opposite problems, don't we.
I have taken donnatol, and so far, it has been the only anti-spasmodic that has done anything for me. The only drawback to it is that I can only take it before I go to bed since it is so sedating. So, the day is left to cramps and pain. I think it is worth trying and even if you only take it at night, it may slow down your system enough to start out the day with a fresh start....break you out of the cycle you are in.
Have you ever tried Culturelle? Here's their website Culturelle Before I became so chronically C, I had severe D for 3 years or so. Culturelle came out the last year of my D...and it helped me significantly. I read a research report stating that doctors have used the GG strain, the kind in Culturelle, to treat children in the hospital suffering from severe diarrhea. You can find it at Walgreens, CVS, and most drugstores. I highly recommend trying it.
Let us know how your doctor appointments go...and how you are doing, okay?
Big Hugs!!!!!!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I'm sorry you're feeling so bad! Lomotil is a lot stronger than Imodium and Donnatol is a pretty strong anti-spasmodic. Either one, I think, should give you some relief until your GI has your results ready.
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Jen:
I'm so sorry for the pain and suffering you're enduring right now. I'm sure you've tried everything...can you drink rooibos tea? It's caffeine free, and is quite good for you. Also, can you eat plain rice? Plain oatmeal? I know sometimes nothing works...I think all of us D people can relate ...I'm going to pray for you, and hope your body settles down soon!
Terri
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Thanks, Sand. Yes, I did the gallbladder scan thing about a year ago and it was OK. My pain is not typical of gallbladder anyway.
I've thought about the leave of absence, too. I actually checked the company policy on FMLA and you are required to give 30 days notice! I couldn't believe that. If your medical problems are so bad you can't work, how are you going to manage 30 days' notice? I do plan on getting a note from my doctor -- I know that they can't fire me for medical reasons, and my boss does know I have problems, but since I don't have any formal documentation I wonder if they could get away with firing me anyway.
que sera, sera 
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Quote:
I've thought about the leave of absence, too. I actually checked the company policy on FMLA and you are required to give 30 days notice!
Oh, nice try guys. Check this out:
http://www.dol.gov/dol/allcfr/ESA/Title_29/Part_825/29CFR825.302.htm
You'll see the thirty days notice can only be required if it's possible to foresee the illness. FMLA actually seems to be something the government did that they thought through pretty carefully. There's not a lot of wiggle room for companies on this one.
Here's a suggestion you'll have to evaluate based on your sense of how your company operates: Sit down with Human Resources and explain your situation - you have a worsening health problem; you can work around it but it will mean coming in late, leaving early, missing days; you think it might be better to just take some FMLA leave until it's straightened out; what do they think?
As I said you'll have to base this on how your company operates. I worked for a large financial institution in NYC and I would have done this in a heartbeat. After they were bought out, though, I would have figured that doing this would pretty much guarantee I'd be fired. I would definitely have my ducks in a row before trying this, like making sure at least one of your doctors would do the FMLA paperwork.
The other thing you can consider is going on disability, but I truly have no idea what the requirements are for that and my guess is you'd like to go on working where you are if possible.
I'm kind of sorry it's not your gallbladder. At least that's pretty simple to treat.
BTW, I'm glad to see your sense of humor is still intact - "Location:misery" indeed.
Take care and hang in there.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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The URL I gave in my earlier post was for notice when leave is foreseeable. Here's the rule for when leave is not:
http://www.dol.gov/dol/allcfr/ESA/Title_29/Part_825/29CFR825.303.htm
Note particularly:
Quote:
In the case of a medical emergency requiring leave because of an employee's own serious health condition or to care for a family member with a serious health condition, written advance notice pursuant to an employer's internal rules and procedures may not be required when FMLA leave is involved.
As always, of course, your employer can choose to ignore the rules and then your only recourse is to sue them. Bummer.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Thanks for the info, Sand (both parts). I really don't want to take time off work unless I absolutely have to. I have a fabulous job -- I love my boss, I love my work, I love the company -- and I want to keep it. I am also very leery of taking time off when I have no idea how long I'm going to be sick. Sure, if I knew that I had some kind of Martian tapeworms that are exorcised by three weeks of antibiotics, then I'd do it, but I don't have the luxury of treatable Martian tapeworms. (at least, not that I know of. Guess you never know about rural well water.) For now I think I'll get a note from my doctor explaining my condition and talk to our HR rep a little and see what she thinks.
This weekend was better for me. Not sure if it's just because I got to stay home and relax with the heating pad, or if my tummy's calming down a little. Hope it's the latter. My doctor's appointment is tomorrow, I will go beg for stronger meds.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Lucky you to have such a great job. If I were in your shoes, I would definitely try to keep working, too. Good luck talking to HR and getting some stronger meds from your doctor - and I hope the stronger meds help without making you a zombie.
I'm glad the weekend was better and I also hope it means your tummy is settling down.
And, hey, if you turn out to have those Martian tapeworms, be sure to post the scientific name (Cestoda Areo?), the diagnostic test, and the recommended cure. And pictures, if you have them - in color, so we can see the red. 
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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So I walk in there to ask for Donnatel and Lomotil -- and I walk out with a prescription for pre-natal vitamins!
Seriously.
I found out today that my PCP had left on maternity leave on Saturday, so I had to see another doctor. I swear that they were so short-handed they decided to have one of the receptionists fake it. This lady was a nutcase!
I told her I went off birth control because I wanted to have a baby next year, but that I AM NOT TRYING TO CONCEIVE RIGHT NOW. We're still using protection when we have sex. But she was fixated on the pregnancy thing and kept saying, "oh, well, you can't take that during pregnancy" and refused to prescribe Donnatel because it would damage the baby. WHAT baby? I'M NOT TRYING TO GET PREGNANT!!!
She finally wrote the script for the prenatal vitamins "because you're not getting enough folic acid" she said earnestly, and "iron is constipating".
Oh, and Lomotil? Nope. "I never prescribe Lomotil for chronic diarrhea!" she said, shocked, and then added, "But ask your GI. He might." WHAT? So what exactly DOES she prescribe Lomotil? Chronic earaches? And if she doesn't condone it, then why is she telling me to get my GI to do it?
She also told me I should try acupuncture; offered to write me a script for Lexapro; said I should see a therapist "because if I were you, I'D sure be angry"; and said, "Yeah, you know, some people, sometimes their bodies just don't work, and I guess that's the case with your stomach and colon." (Huh????)
She also told me that I didn't have to bother doing the stool sample thing because during the colonoscopy they'd spot any parasites. Is this true?? That doesn't sound right to me.
Anyway, those were just the highlights! I've never had a doctor go on so long. I should have been enraged when I left, but I just had to sit in my car and die laughing because it was so ludicrous.
Pre-natal vitamins for God's sake ... don't you love it!
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Geez. I am so sorry the "fun" just never ends for you. I am mad for you!
The more I read about other peoples' doctors, the more I am glad that my regular doctor actually listens to me and my GI doc does not seem to be a jerk. 
"Sometimes peoples bodies just don't work." Um, yeah, that's why you were there to see the doctor. Good lord.
Where do some of these doctors get their credentials? Is it a prize at the bottom of the cereal box?
And oh, as for the stool sample, my GI had that done about a month BEFORE my colonscopy. If it was a parasite, it is my understanding, they probably wouldn't have had to do the colonoscopy.
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I swear if people would just LISTEN to their patients before babbling, they might actually do some good. Well that sucks. Was that a referral to go to your GI doc? Hopefully he/she will have a few more brain cells. Now go take your vitamins. 
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Ok, Jen, this is it. You have to be journaling this stuff, because you're going to write a book and it's going to be hilarious and you're going to sell it via Heather's Website and everyone who visits the site will buy it. Then you'll be fabulously wealthy and you can buy out your doctor's practice and put this whacko doctor (or, possibly, receptionist) out of a job!
I'm so sorry - but I'm also laughing hysterically.
Have you considered just packing your bags and heading for the Mayo Clinic for a few days? I hear they have real doctors there, who can hear and everything.
Actually, Passanie may be on to something here. Maybe you should print out a copy of your post, buy a cheap hearing aid, wrap the two up together in a box and mail it to the doctor you just saw.
I hope things get better for you, Jen. Of course, it kind of seems like they almost have to, doesn't it?
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Me too. Just then. Get this:
The doctor told me to take a GRAVOL!!!!!!!
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IBS-C
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Oh, sure, make a mockery out of the tragedy of my life ... OK, so it was funny. I never thought about writing a book about IBS. Maybe I should. I do write -- one of these days I want to get my stuff published and be able to quit my job. But writers don't make much unless you're J.K. Rowling, so I don't hold out much hope of that.
I'm not going to the Mayo Clinic. I'm pretty sure I do have IBS. It's just super-double-extra-strength IBS with sprinkles on top. Or something. I'll get through it. Eventually. Hopefully. Maybe.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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maybe that's the problem.
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