miserable, but not sick (rant)

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madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 1/20/2009 6:29 PM (GMT -6)   
That is how my GI classifies my UC.  The biopsy (in March) showed moderate to severe uc, but my GI was not impressed as it went up only 15 inches which according to him is enough to make me feel miserable, but it does not make me sick.  I don't lose much weight, I don't faint.  My heartbeat and blood pressure remain low and I have never needed a blood transfusion or iv fluid.  I had "low blood counts" -whatever that means- amidst a flare and a hospitalization for a perianal abcsess, but I was only told to "take it easy for awhile".
 
And because I am not "sick" he keeps me on the same meds even though they are not working well anymore.  
 
For the last year and a half I have been stuck in a flare of varying degrees of miserable-ness.  I get better for a few weeks or a month then I get bad again.  I go into see the GI every two - three months with the same old story and he just gives me the same old response. 
 
My UC symptoms have been revving up the last month and I now have blood and mucus over ten times a day (including at least three times at  night), every time I pass something whether it be bm, blood or mucus, it is a sickening painful event.  I feel raw, sore and tired.  Everyone here on this board knows what I mean.  I am in midst of substantial flare.  Rowasa which is usually really wonderful is not helping much because I cannot keep it in for more than one hour and a half. 
 
I have had this GI since 2005 and I have never called him.  I have always sucked it up and waited until my regularly scheduled appt. even if I was flaring significantly.  I thought that if I didn't call for every little thing, he would understand that if I did call, it was because I was feeling really badly.
 
So I called him today.  Or rather I called his nurse.  I told her I thought I should try something stronger such as a steriod foam enema.  She is a sympathetic lady and I like her, but she was definetely in a hurry and I didn't get a chance, I don't think, to really communicate how awful I was feeling.  She talked to doc and called me back with  the instructions from my GI to keep taking all the current meds, but to take them more often and to "just try harder to keep the rowasa in". 
 
Since he wouldn't deign to speak with me personally, I don't know if he even considered my request to try something stronger.  I don't want a lot of side effects, however, after a year and a half of flaring almost continuously, I am ready and desperate to try just about anything, but according to my GI, I am not really sick, but apparently just being a big old baby, about my pesky colitis. 
 
I don't think I have ever felt as frustrated and sad about this dd than I do today.  I just feel locked in by UC and that there is no escape and I have never felt that before.  And I abhor my GI for his contribution to  making me feel this way. 
 
Sorry for the rant, but I am just that upset.  No one else would understand.
 
 
UC diagnosed 10/05, first symptoms 1983
asacol 12/daily and rowasa as needed 
Trying out Culturelle Probiotic
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16736
   Posted 1/20/2009 9:13 PM (GMT -6)   
You should see a differnt GI. You pay good money and you deserve to have your concerns addressed. No one should be on the can 10x a day. My GI is young and hip, she is very understanding and would do anything to help me get better. Your GI doesn't sound very progressive. I would move on asap.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 1/21/2009 9:58 AM (GMT -6)   
You are right s-girl.  That is what I should do.  Thanks for responding to my rather garbled post.  I rarely let myself feel depressed over my uc, but I really let go last evening. :)

UC diagnosed 10/05, first symptoms 1983
asacol 12/daily and rowasa as needed 
Trying out Culturelle Probiotic
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 1/21/2009 10:56 AM (GMT -6)   
Definatly find another doctor...geez what an ass
Imuran 150 mgs/day
Prednisone 15 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag and Iron supps


megger
Regular Member


Date Joined Oct 2008
Total Posts : 62
   Posted 1/21/2009 12:27 PM (GMT -6)   
madabs,

I have only been diagnosed since Ocotber 08, but I am experiencing much the same problem. I have been moderately flaring since I tapered off pred in November, but because my bloodwork comes back "normal" so I must be fine right? I only have a General Surgeon right now and am waiting for my referral to a GI follows through. He doesn't want to try me on any other meds... I hope you can get in to see another GI, because I can't wait until I FINALLY get to see one!

Good luck!
Meghan
 
23 years old
Moderate-Severe Pancolitis
Diagnosed October 2008
12 Asacol (3 pills 4 times a day)
Entocort enemas nightly since Dec 2008
Daily Multi-Vitamins
Daily Fibre intake - 1 tbsp Metamucil
Protec Probiotics - I pill at bedtime


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/21/2009 12:29 PM (GMT -6)   
Holy Hell!!! I would consider your GI an ass too! It doesn't matter where the UC is, it's there! It hurts! You're having trouble!!! I agreee that another GI is needed. Surely there's someone else you can see that will be more supportive of your needs and issues. My GI and nurse are amazing. They listen to my concerns and take what I feel into consideration. You definitely need something different to get your flare under control, and though steroids are hard on you, they sure do the trick!

I wish you the best of luck, and UC is very controlling and a big cramp in our style. : ) I just hate that you've been silently suffering for so long.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/21/2009 1:36 PM (GMT -6)   
I'm surprised how many people take this kind of treatment or simply just don't get any results or satisfaction, yet they hang in there with the same doctor. Find another doctor, by all means. Get positive referrals from IBDers in your area, if you can.

You are your own best health care advocate. If you feel uncomfortable with your doctor's manner or remarks, are dissatisfied with your care, aren't getting responses or action in a timely manner, it's up to you to make your voice heard or to find care somewhere else. If you don't stand up for yourself, chances are no one else will.


Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 

Post Edited (princesa) : 1/21/2009 11:39:01 AM (GMT-7)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/21/2009 7:21 PM (GMT -6)   
I often communicate with my docs through their nurses, and get good response. I guess if I didn't, it would bother me, but it seems a lot of doctors manage their patients' calls this way. You have to be assertive, even if it's just with the nurse! GI nurses should be able to understand what you are talking about.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 1/22/2009 7:51 AM (GMT -6)   

Thanks folks - for the sympathy and a few kicks in the butt (princesa!!!).  I am generally a tough old broad, but this particular disease turns me into a weenie in many areas of my life. 

I am definitely getting a new GI, but since it will take a while to find one and even longer then to get an appointment, I am stuck with my current GI for now unless I can think of something else to do.  I keep getting worse.


UC diagnosed 10/05, first symptoms 1983
asacol 12/daily and rowasa as needed 
Trying out Culturelle Probiotic
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/22/2009 10:16 AM (GMT -6)   
Sorry if I came on too strong. I hate to see people suffer in silence and so many seem resigned to take whatever their doc dishes out. Hope you find a better one soon. When you call to make your appointment with the new doc, be sure to tell them your symptoms are getting worse and ask to be called if there are any cancellations so you can get in asap.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 1/22/2009 10:58 AM (GMT -6)   
Not at all princessa.  Your post was blunt, but very true and appreciated by me!  I meant to put one of those winky-smile icons next to your name when I typed it but forgot.
UC diagnosed 10/05, first symptoms 1983
asacol 12/daily and rowasa as needed 
Trying out Culturelle Probiotic
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh

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