My last day at Mayo

Sarita · September 23, 2005, 10:14pm

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.

soft1 · September 23, 2005, 10:39pm

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 · September 23, 2005, 10:47pm

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 · September 24, 2005, 3:53pm

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

joa · September 24, 2005, 11:26pm

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 · October 6, 2005, 2:55am

Sarita, how's it going? How are the meds? Any luck?

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Sarita · October 6, 2005, 11:40pm

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 · October 7, 2005, 12:28am

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.

Co-Moderator for the IBS Forum

Frank · October 7, 2005, 2:52am

Sarita,what "is waiting for a culture to check for gut TB"?

Sarita · October 7, 2005, 2:56am

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!