Deep breath...here we go again. Mayo, take 2!

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Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 7/7/2008 5:02 PM (GMT -7)   
Hey buddies,
Long time no see...I haven't been around lately. I'm sorry, dearies :( Haven't been a very good mod or support for anyone lately! Long story short, my guts just went completely crazy and when I finally went to the ER last week, I went to the Mayo Hospital here in AZ. They gave me an express ticket to their gastroenterology department and booked me for a Wednesday appointment. I know I need to go because my weight is just bad; my diarrhea is completely out of control; it's like a downward spiral. But oh, the prospect of more tests, more specialists looking at me like I'm a complete alien, more money and energy and time on this...it just feels very bleak. I am just exhausted and - this might sound weird - haunted. I have been isolating myself because I just don't know what to do. My husband doesn't know what to do either, and he's feeling just as helpless as I am.

Anyway, that is a little explanation for why I've been MIA. I know you all understand because you're so wonderful. I will check out some posts, maybe will feel better if I am actually offering words of encouragement to others instead of isolating myself. Right? I hope everyone is doing okay...
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


broomhilda
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Date Joined May 2007
Total Posts : 1488
   Posted 7/7/2008 5:12 PM (GMT -7)   
Welcome Back Sarita- I think.  I'm sorry things haven't been going you're way lately.  Maybe things will turn around soon.  Wishing you and your husband all the correct answers. -Gayle

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 7/7/2008 5:38 PM (GMT -7)   
((((((((((((( Sarita ))))))))))))

This your post-finals flare !! Sorry but all that stress probably contributed things. I hope that some free time for rest is possible. School is such a taskmaster !!! Also hoping the new docs find a good course of treatment.

Sending you hugs and . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 7/7/2008 9:12 PM (GMT -7)   
dang, Sarita, good to hear from you but sorry things are crummy. big hug, YP
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 7/7/2008 9:18 PM (GMT -7)   

Oh, Sarita, I can relate. It is so exhausting being sick. Not only on us, but on our hubbies too. I hope they have answers for you. I begged my dr to get me better by now, and again I am going in next week to discuss different treatment options or maybe surgery. It is so hard to be sick and so expensive.

Good luck!! (((((((Sarita))))))) Let us know how it goes.

Kgirlie


Kgirlie
 
27 year old female dx with CD in 2001. Pentasa 4 g/day, Prednisone 30 mg/day, Lexapro 10 mg/day, Wellbutrin 150 mg/day, Remicade, topamax, nadalol, Maxalt 10 mg as needed. Mother of son, 3, and daughter, 10 months.  


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 7/7/2008 11:12 PM (GMT -7)   
WRONG ATTITUDE, Sarita? about your upcoming Mayo visit, I mean. Go to that appointment w/the expectation that THIS time they are going to come up w/some answers AND an effective treatment! THIMK POSYTIVE!

And RIGHT ON! You're totally right that reaching out to others and empathizing or encouraging them helps us as much as it helps them. (((hugs)))
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 7/7/2008 11:41 PM (GMT -7)   
Try and stay cool...the monsoon has me all wonky too. I know what you mean about another test. My doc wants me to do a capsule edoscopy, and I've put it for for the last year or so. Another prep....good Lord help me no...enough with the having to drink horrid stuff so they might find something. No more torture. tired of the sticks and tests. I've even gotten pill fatigue....cannot imagine another pill being able to go down my throat. (Yeah I know a lot of this is good info, and I need the pills....but imagine, JUST IMAGINE and day, a week, without having to do any of this....ever. But my hubby sees me through all this. Best guy ever!!!!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/8/2008 6:59 AM (GMT -7)   
Sarita I was just thinking about you yesterday, and was wondering if you had gotten married yet? Sorry you have been so ill. Hopefully these tests will provide you the answers you need and you get feeling better soon. Glad to see you posting again. (((BUG HUGS)))
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 7/8/2008 7:25 AM (GMT -7)   
((((Sarita)))),
We have all been there at that undx stage. It is one of the worst parts of this darn disease. Hope you find out something soon!
Navy
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 7/8/2008 9:12 AM (GMT -7)   
Welcome back. I agree the stress could have made your CD worse.
karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort Switching to Humira June 2008 will wean off Pentasa and Entocort

Diagnosed w/  Fibromyalgia May 2007 also on Soma - Also on Prilosec for reflux.

 

 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/8/2008 11:12 AM (GMT -7)   
Hi Glad your going to be getting some good care and try to stay postive I know before my resection I was pretty miserable . Things will get better. lol gail

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 7/8/2008 11:16 AM (GMT -7)   
Hi Sarita: I suspected that no news was not good news. I'm sorry you have been so miserable, but I'm not surprised that, as your symptoms have worsened you have chosen to wall yourself off instead of reaching out. Do you find it interesting that you see your role on this board as a giver of support rather than a seeker of support?

It's been my experience that we cope with our health issues the same way we cope with our lives -- one of the reasons that people with similar clinical symptoms can vary so dramatically in how they live with their disease.

My sense is that you are a coper. You get up each day and you put one foot in front of the other and just get on with it. You also strike me as someone who takes great pride in being competent and reliable. Your friends know you are someone they can rely on. If you say you will do something, it will be done -- no matter what the personal cost. Maybe that's why as your symptoms have been spiraling out of control that you retired from the board. You didn't have the energy to give the wisdome and support all of us on this board expect from your posts, so you just went quiet. But Sarita, isn't ok to reach out for support too? It's ok to say "I'm sick".

Is it safe to say that you live a lot of your life in your head? Do you rely on your intellect? If you just work hard enough do you have the sense that you can figure anything out?

All of these qualities are so admirable, it's hard to add a but ... but, sometimes our very strengths serve only to magnify our pain, exacerbate our misery and ultimately may block our path to recovery.

I've come to realize this is true for me and I wonder if it might resonate for you too. At some point in the process of managing my illness, all of those traits that I called upon to allow me to continue functioning at a very high level, despite significant disease activity, became engrained behaviours instead of considered choices. I continued to play the role of being the strong one, the competent one, the reliable one long after it had lost its functional usefulness. I used those qualities to live in a state of denial, as though by force of will alone I could will my disease into submission. They were like a whip that I beat myself with. I was locked every day in a mortal combat with this disease for control of my body. I didn't give an inch, forcing the disease to bow to my need to continue to fulfill the role I wrote for myself. Oh, there were plenty of times when the disease got the upper hand, but always on my terms. After the big project was completed (even if it meant working nights and weekends and extending workdays at both ends to accommodate those times when the disease just couldn't be bargained with) After the conference where I had to give the panel presentation. After the board meeting

I did a lot of compromising with myself and my family in order to play the role. Of course there reached a point of crash and burn for me. After 25 years and many dances close to the precipice, I awoke to the realization that I just might kill myself if I continued along this path. And I made a commitment to change. Two years of psycho-therpay and a lot of self-analysis and hard work (I can always be counted upon to work hard) and I think I can once again see all those still inherent qualities as strengths again, no longer weaknesses. I'm using my strengths now consciously and in so doing, now I can say that I am self-reliable. I have learned to live with my reality and use my strengths to work hard at making me as healthy as I can be with this dd. To do that I've had to learn how to say no, loudly and clearly. There are no end of people with ways to spend my precious energy.

I rarely beat myself up anymore when I am sick. That used to be the worst of it. I couldn't use the word sick, so I described it as lazy when I would crash. I wonder if you are sometimes hard on yourself? I hope not. You're coping with so much stress right now. I can't imagine what it must be like, the not having a diagnosis.

You are just at the beginning of living with illness Sarita. I know you are feeling overwhelmed, impatient, angry with the system and maybe even with yourself. I sincerely hope that you can use all your incredible qualities to support yourself throughout this difficult process, even when to support yourself means giving up control (temporarily), extending your hand and accepting the help that I'm sure is out there.

Can you just tell your doc at the Mayo, "I am sick. I need your help. I will work with you, I will be a partner, but I need you to help me sort out this mystery."

Just for a little while let your doctors carry the load. It will always be there for you to stack back on your shoulders, but everyone deserves a rest now and then.

You are such a source of knowledge and common sense for the members of this board, Sarita. But we are honoured to help you carry the load too.
Belleenstein:

30+ years living with Crohn's.

Post Edited (belleenstein) : 7/8/2008 1:56:20 PM (GMT-6)


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 7/8/2008 11:28 AM (GMT -7)   
Hello Sarita, I was thinking about you the other day... Sorry things are not going so well sweetie, but I'm sending good
thoughts your way... Hope you feel more like yourself soon. LOL
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 7/8/2008 12:38 PM (GMT -7)   
Sarita,

It just never ends, does it? I hope you get an answer THIS time! Please take care & don't let it get to you.
<<<HUG>>>

Sincerely,
Matthew

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 7/8/2008 12:57 PM (GMT -7)   
Holy crap Belleenstein, your post just made me bawl my brains out. That doesn't happen very often. I am going to process this a little bit...but you are a very wise woman. Thank you. Thank you, everyone. You guys are amazing.
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 7/8/2008 5:22 PM (GMT -7)   
Sarita,

Thinking of you and hope you get some answers soon...you deserve them. I hope you're diagnosis and treatment plans are just on the horizon and you'll start to feel better soon.

Bev

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 7/8/2008 6:09 PM (GMT -7)   
Maybe that's just what you needed Sarita. I hope it was a good cleansing bawl. Nothing like a nose-dripping, eyes-streaming, throat-aching red-blotched, puffy-lidded cry to shake out the chaff. Work hard at being a patient tomorrow Sarita. Tell your doctors how you feel not what you think and you will be ok.
Belleenstein:

30+ years living with Crohn's.


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 7/9/2008 9:54 AM (GMT -7)   

Amazingly, I was not looked at as if I had three heads.

The doctor here was superb.  What a kind person.  He is doing some other tests - breath test, SIBO, motility study.  But instead of doing another scope, he's going to get the actual samples from my last one and have another pathologist look at them.  Then I'll go back to infectious disease (he says malaria is likely to be causing my fevers).  The biggest thing was that he said he was probably going to put me on Entocort, which no one has tried before.

I am seeing a nutritionist tomorrow as well to try to get some weight on.  Will keep everyone updated.  And belleenstein, I'm still thinking about your post :)


Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 7/9/2008 11:40 AM (GMT -7)   
Isn't amazing how far a little kindness can lift your spirits. Really, I think kindness and empathy can be the most powerful weapons in a physician's arsenal. Too bad they are so sparingly used, what with the need for professional distance and all.

Hugs from the heart.
Belleenstein:

30+ years living with Crohn's.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/9/2008 4:23 PM (GMT -7)   
"Bedside manner" used to be a VERY HIGH PRIORITY at Mayo Clinic. They INSISTED upon it in their doctors. I noticed the last few years that maybe there isn't quite that much emphasis on it there as there used to be. Or maybe I've just gotten crankier thru the years! I've noticed w/my husband's orthopedic surgeon and w/my current Mayo gastro that there isn't that outstanding empathy and personal "touch" that all the Mayo docs I've encountered in the past had. I flat out didn't like my husband's orthopod but then I don't do well w/the orthopedic personality to begin with altho I loved my grandmother's Mayo orthopod. My current gastro is okay. He's one of their most respected researchers. I tend to think he might do very well w/male patients but ...... like I say maybe I'm just getting crochety in my old age and it is just me.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 7/9/2008 5:42 PM (GMT -7)   
C2, maybe.. No, discretion is the better part of valor.. I think she still has THAT broom.. <G>

Matthew

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 7/9/2008 6:34 PM (GMT -7)   
Hey Sarita,
When we didn't hear from you, I wanted to believe that you were newly married, off on some fablulous honeymoon, and feeling wonderful. I can make a new psych term.."transference denial!" It's just that I like you so much... I wanted to imagine all good things. I'm so glad you are at Mayo...you need a new set of docs, maybe looking at things from another perspective...I hope you get well and get some answers soon!
I was doing fantastic for a few months, but I've gotten sick again. It's almost harder this time around...I was so enjoying my healthy busy life, it's hard to fall down again. I'm isolating myself too, I'm just tired of talking about illness! Sending you lots of hugs and hope!! Your pal, Gumby
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 7/11/2008 9:52 AM (GMT -7)   
Sarita
You are in my prayers. I am just a year in to this disease that has totally changed my life, and I am a heath care provider as well. I am alone, so I tend to withdraw when I am feeling bad. THe other hours of the day I go to work. It is almost impossible to let someone else take care of me  (probably just as well right now, because there is no-one else!) but I am trying to learn how.
I hope that you feel better soon.
 

ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 7/11/2008 5:19 PM (GMT -7)   
Sarita, I hope this doctor is able to fix what has been ailing you. Could it be possible that malaria is the cause of all your medical problems? (malaria?? Have you traveled to far away places?) I hope you're feeling well soon.
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Ileocolectomy 4/08.

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