My last day at Mayo

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Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 9/23/2005 3:14 PM (GMT -7)   
Just posted this on the Crohn's board as well...
 
Well, I thought I might have a diagnosis by now.  I thought maybe it was just the fact that my docs in Alaska were not all that bright, or maybe hadn't thought of other possibilities out there, or maybe their methods weren't sound.  So I used 50,000 air miles to fly me and my best friend out to Minnesota, hoping that what I'd heard about the Mayo was true - that they'd be able to find, for certain, what is causing so much distress.  I spent money on lodging and food to give the doctors time to thoroughly investigate my case.  Worst of all, I subjected myself to two more scopings, innumerable pinpricks, ridiculous diets, liters of contrast medium, and a week away from my home for the sole purpose of getting an answer and a quick fix.
 
The end result: the GIs here are positively baffled.  Baffled that I can have such terrible diarrhea, with blood now, in the middle of the night, whenever; fevers; leukocytosis; that huge weight loss; and still have a perfectly normal bowel.  They found absolutely nothing in their biopsies besides those areas of erosion, which they said did not mean anything significant.  My CT scan was normal.  They found blood and white blood cells in my stools, and fevers all week long, which they could not explain.  They told me that they have no explanation at all to what this could be, other than a long-lasting post-infectious irritable bowel, for which treatment is a guessing game.  Tincture of opium, he said, might help.  That and Levbid, plus a daily dose of Citrucel - maybe that will help me through.  For who knows how long.  He said maybe down the road a bit he'll need to contact me for a new research study to highlight this bizarre illness.  Just great.
 
I am grateful it is not cancer, or IBD, or celiac disease.  I should be more thankful that I DON'T have an answer, I suppose; I know that whatever this is will not be life-threatening.  But it sure is pure misery.  And I'm sure you all know how I feel to some degree.  My doctor said this feeling is normal, and he would hate to be in my position or have one of his same-aged children in my position.  I just feel very helpless right now, very discouraged.  The fact that I had the big D 18 times today and very little sleep last night does not help.  I know what I'm going to do - go home, take the drugs every day, change my diet after some research, and hope for the best - but now all I want to do is cry a whole lot. 
 
I'm sure you guys know how I feel.  Hopefully I'll be able to be of some help to you now that I've been through the run-around a whopping TWO times.  Thanks for all your support.

softy
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Date Joined Jun 2004
Total Posts : 798
   Posted 9/23/2005 3:39 PM (GMT -7)   
Oh Sarita, how rotten. I would cry too. I was so hoping you'd get a diagnosis. I pray the drugs and diet work and it just disappears.

I can't remember, have you previously swallowed the camera pill?
Take care, Softy
 


7Lil
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Date Joined Apr 2005
Total Posts : 3269
   Posted 9/23/2005 3:47 PM (GMT -7)   
Sarita, I feel for you hon. Hang in there and know things MUST get better. Like you said, thank goodness you don't have anything serious or they would have caught it.
I hope your new routine will work for you....

Peppertree
Regular Member


Date Joined Sep 2005
Total Posts : 116
   Posted 9/24/2005 8:53 AM (GMT -7)   

Sarita,

have you tried entocort? thats what im on, after 3 weeks of diarreha, day and night. It stopped my diarreha with the first dose, which is amazing cause i had tried everything else. Ive never had blood in my diarrhea, and hope i never do, but you m ight ask your doctor about it. I have lost lots of weight to, and am trying desperately to gain it back. It does suck, because when you have diarreha that much, you lose your electorlytes and get very dehyrated. So drink plenty of pedolite, thats what i do. I really will be praying for you, and i know how miserable you are. Take Care :-)   Pepper


sick&tired
Regular Member


Date Joined Sep 2005
Total Posts : 25
   Posted 9/24/2005 4:26 PM (GMT -7)   
Dear Sarita,
I was so hoping that something good would come out of your visit to the Mayo Clinic. I just got on a 6-month waiting list & totally by coincidence found this sight & was reading your daily reports. Now I almost don't want to go --I've put the trip off for so long & it's really my "last stop" so to speak. If I get the same result as you, then I think I'll opt to have part of my intestines removed. I'm sure that sounds drastic, but the way I see it is that I'll eat less, feel full, look thin & make less trips to the bathroom. Unlike you,
I live just north of Manhattan & have many fine hospitals available to me. I've seen many specialists & surgeons & none seem to agree on /if/how I should proceed. That's why I was going to do whatever the Mayo Clinic suggested & be done with it.

Lotronex, by the way, made quite a difference in my condition.
I could care less about the side effects. Besides, your doc has to go through a lot of paperwork to get you approved to take the drug & I don't think he/she would if they felt the side effects outweighed the benefits.

Take care & lots of luck in finding good health in the future.

7Lil
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Date Joined Apr 2005
Total Posts : 3269
   Posted 10/5/2005 7:55 PM (GMT -7)   
Sarita, how's it going? How are the meds? Any luck?
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Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 10/6/2005 4:40 PM (GMT -7)   

Thanks for checking in, Lil!  My two weeks post-Mayo has been fairly uneventful...I've seen my PCP twice and she is being awesome, 100% behind me on this.  Willing to work with me instead of running as fast as possible in the other direction.  She wants me to do a Prometheus test for IBD, is waiting for a culture to check for gut TB, wants some IgG and IgE antibody testing done for food allergies, and wants to send some blood and stools to this alleged "parasite guru" in Arizona she knows of.  She's a regular M.D., an internist, but works in a new center with a couple of naturopaths and a nurse practitioner.  She doesn't have that god-complex that many specialists I've seen have, and she's open to so many more options. 

I tried the Levbid/Lomotil combo twice a day for 10 days; but I still had crazy D.  I think the Levbid was effective for the cramps, though, which haven't been bothering me as much.  It does kind of dry me out a bit, though.  She thinks I'm malnourished after all this D and so put me on a good multi-vitamin with extra zinc (which supposedly helps some people with Crohn's disease), a fiber supplement to bulk me up, Questran for the days I'm like a garden hose (usually 1-2 days/week), and increased amounts of probiotics for now.  She also told me to stop taking Zoloft, which I've been taking for three years, because she thinks it could be contributing to the diarrhea.  I've been tapering for a while now, so going from 50 mg/day to none shouldn't be too bad.

I've had fevers every day for a few days now.  Little ones, like 100 degrees, but enough to make me feel run-down.  I've been slurping down the Tylenol like a crazy woman, but it doesn't seem to affect the temperature!

Today has been very bizarre indeed.  I've gone like 8 times today, but all my stools have been soft and formed, which is a big deal for me.  I haven't taken the Lomotil in a couple of days.  I wonder if it's the fiber supplement or what? 

Anyway...that's the news here...I'll update as I get new info.  Thanks for the unwavering support!!


7Lil
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Date Joined Apr 2005
Total Posts : 3269
   Posted 10/6/2005 5:28 PM (GMT -7)   
Sarita, I am so sorry you are still dealing with all of this even after visiting Mayo. Your doc sounds like she won't stop until she gets to the bottom of your problem. I really hope so. I can't imagine how frustrating this is for you.
I did that Prometheus test too - I wonder how accurate it is. (Mine obviously came back negative.) Good luck!
I think this may have come up before but I forgot, sorry... Do you work? I can't imagine how difficult it must be if you have to haul your butt out of the house everyday.
I'm glad to hear your doc has you on a good multi-vitamin. That is so important if food is running right through you. I've never heard of zinc being that beneficial... I will have to Google it.
Are your stools normally not formed? Are they usually just liquid? Fiber is supposed to give your BMs bulk so it must be what is helping you (formed pooh is good, right?). I just hope the fiber and abundance of probiotics aren't making the gas unbearable.
Sarita, I really worry about you. My heart goes out to you. Thanks for the update.
Keep your head up and the sun will shine on it once again.


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Franky
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Date Joined Jan 2005
Total Posts : 144
   Posted 10/6/2005 7:52 PM (GMT -7)   
Sarita,what "is waiting for a culture to check for gut TB"?

Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 10/6/2005 7:56 PM (GMT -7)   

Lil, thank you again for your kindness!  It is so nice to know that there are other people who are going through similar crap (pun intended) and always have an ear to lend.  Yes, I do work, thank goodness - I don't know what I'd do if I was always in the house!  I am a social worker for mentally ill kids.  They keep my life thoroughly spiced.  I'm 26 and blazingly single and live with two cats - oh my goodness, am I going to be that old spinster lady with the cats, sitting and crapping myself in my rocking chair?  LOL.  Anyway, my coworkers and friends are simply amazing, they are always there for me, making fun of my bathroom trips (I'll provide entertainment any way I can!).  Work has also given me an extra 200 hours of paid sick leave this year and that has literally saved my butt.  Health insurance isn't too bad either!  I'm pretty lucky in that regard.  I know a lot of people - most people - aren't nearly as lucky with their employers or insurers. 

In a year or two I am off to either a) medical school to become an internist or b) a nurse practitioner program.  I'll be focusing on public health either way, so I can keep up my travels (although some might say that's a really stupid idea, considering my garden-hose-like state over the past year, which may have something to do with my previous travels).

Yeah, usually my poops are watery, so having a day like today is quite an accomplishment.  I did notice a little bit more gas, which usually isn't a problem for me.  Did you know the average person is supposed to fart 12 times a day?  We should start a poll!

 

 


7Lil
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Date Joined Apr 2005
Total Posts : 3269
   Posted 10/6/2005 8:09 PM (GMT -7)   
Me too, me too, Sarita. I'm 26 and a blazing single... living with my 2 sisters (not cats). I was just talking to my sis's the other day about me becoming an old spinster with cats. LOL In our conversation I forgot to add "crapping myself in a rocking chair." I will have to give them an update on my prospective future.

I love your humor. It is so important to keep that when your health seems to be in the tubes (literally). I am such a pessimist and I noticed that HW is helping me with that (not totally but I am a little better).

You are so lucky to have the employer you have... I am envious.

I heard that too, that the average person farts 8-12 times a day. There is no way that I only fart 12 times.... 12 times is me just in the morning. LOL We should definitely start a poll. Geez, how embarassing - no holds barred on this forum.

I wish you well on your journey to medical greatness. You will have terrific bedside manner and warmer attitude because of all you've been through. You'll do great!


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Post Edited (7Lil) : 10/7/2005 9:33:27 AM (GMT-6)


Keriamon
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Date Joined Jun 2005
Total Posts : 2976
   Posted 10/7/2005 8:25 AM (GMT -7)   
Wow, I'm not passing enough gas. But, you know, I don't fart like I did when I was a kid. For me now it's a once every few days sort of a thing. Ever since I started having gall bladder problems, I seem to just retain gas. Most of the time it's not a problem, but sometimes there's enough of it to cause cramping. Maybe Lil's taking up my slack. Fart by proxy!

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 10/7/2005 12:28 PM (GMT -7)   

Franky...they did a stool culture to see if tuberculosis is settling in my gut.  I was exposed to the lovely TB when I lived in Africa and spent nine months on isoniazid, an anti-TB drug, but the docs said it still could be lurking around in there and causing this nastiness.  I kind of doubt it, but who knows?

I am totally going to start a diarrhea and a fart poll.  And maybe a "how many of us are 20-something spinsters living in apartments that smell like cat pee and diarrhea?" poll.  Let me see if I can figure out how to do it.  If I can't, someone should!

 


Keriamon
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Date Joined Jun 2005
Total Posts : 2976
   Posted 10/7/2005 2:59 PM (GMT -7)   
I'm not a spinster, but I am 26. My cat just died. :-( But I do have a great man. He and I went on our first date two days before I had my gall bladder surgery and our second date was 6 days after my surgery. He sent me flowers the day after my surgery and has always been very sympathetic and understanding. But then he has a bad back, two bad knees and, right now, a messed-up rotator cuff, so he knows what it's like to hurt and be bummed out about it. We seem to take illness/pain in turns, luckily, so we manage to take care of each other. He stops the car for me when we're out driving and I bend over and pick up things he's dropped. :-) I think us "sickos" (his term) do best when we're with a mate who suffers from some chronic problem. I don't think it matters what the problem is, but long-term personal suffering leads to a lot of sympathy for others. At least I think it does. Personally, I like to commiserate with IBS people. I talk about it at work with two other women who are post-GB/ have IBS and my mother-in-law and I can go on about it quite a while when we get together.

Oh, to get back to farting (lol)... does anyone else know of someone who farts in their sleep? I'm not naming names or anything, but I didn't know a person could do that, lol.

7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 10/7/2005 3:09 PM (GMT -7)   

Hey Keri, join the 26 with IBS club!  tongue    Looks like I have to get myself a cat.  j/k

I thought most people farted in their sleep.  Your body doesn't care if it is awake or sleeping... when you have to let one go, you have to let one go.  It is especially easy to pass gas while sleeping because your sphincter muscle isn't tense, so it just comes out.  LOL  Scary when you think about having a "sleep over" with someone for the first time.  nono


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