Downward Spiral/Worsening Symptoms

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kaykay29
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 8/15/2008 8:30 PM (GMT -6)   
Hi, wondering if there is anyone else out there who has had UC for an extended period of time like me (30 yrs).  It seems like after this long of a time it is hard to find a physician who is aggressive in treatment.  I actually had my last Dr. tell me "I don't know what to do with you, I've never had anyone have UC this long without surgery."  Let me clarify that surgery has never been proposed to me in the past, so it is not like I've ever refused it or anything.  I changed Drs a couple of years ago but it seems like I am in the same "trap" with the new one.  I got in to see him a couple of months ago with symptoms of left sided pain, frequent diarrhea and a couple of brand new ones I have never had before - - -leaking of liquid stool (no warning) and ongoing rectal pain (comes on with a knife-like pain, hard to sit, lasts for hours).  He told me to start a liquid probiotic and scheduled me for my annual colonoscopy in Oct.  Now I continue to have the same sx with inability to eat much of anything (although weight is miraculously steady).  The leaking of stool is a real problem but these Drs don't seem to get the impact that has on your daily life.  I feel mentally drained from just managing my illness on a daily basis (I have to work).  I am constantly either in the bathroom or planning my next trip.  Thank God I have a sit-down job.  Is there any hope?  I am thinking a colostomy looks good at this point.  FYI - I have an HMO and live in a rural area so its not like I have tons of options.

Dx UC 1979 at age 14 - (I know, some kind of record)
Was Mildly Chronic (flares every couple of years) until last 2 years now Chronically Acute
Can only get about a month symptom free between flares now
Asacol, Canasa, Rowasa, Cortifoam (on Sulfasalazine for 28 years previously also Pred)
GI Doc recently told me I have "lead pipe syndrome" which is advanced scarring of colon
No surgery - multiple colonoscopies reveal uc "from rectum to appendix"
My Best Friend is My Shih Tzu/My worst enemy is uc


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 8/15/2008 8:41 PM (GMT -6)   
Whew! I have only had UC for 2 years. I gotta give it to you...you are quite a trooper! 30 years!

Hang in there. We all have the hershey squirts from time to time. I basically line up panti liners end to end so I am covered stem to stern (front to back) just in case.

I do think there is hope. Perhaps this isn't the right doctor for you. It sounds like no one has suggested other medications besides the typical 5asa types. I am certainly no expert, but it seems like you need someone who is more willing to review all the possibilities with you. Since you have an HMO, can your primary care physician refer you to someone else?

Also, can you get a referral for a counselor? If you can, why don't you go talk to a counselor if you can about all the decisions you are facing. Sometimes if you talk to a neutral party, you can make the decision much easier because the emotion is taken of it.
Age: 48
location: Seattle, Wa
currently in small flare, tail end of colon
Diagnosed with UC in June 2006
Medications: Asacol 3 pills 3 x/day, Cortifoam at bedtime, Canansa in the morning
No. of colonoscopies: 1
Originally diagnosed with moderate UC, pancolitis


kaykay29
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 8/15/2008 8:46 PM (GMT -6)   
Thanks, yeah I do think a counselor might help. No one in my immediate circle seems to understand the stresses of a chronic illness. (I guess you really can't understand it unless it happens to you.) My HMO is actually "owned" by the clinic where my Dr's are located so my only option would be to try another Doc in the same practice. I really like my Dr (although accessibility has been an issue) - - - maybe I just need to be a little more assertive in making him understand that my quality of life right now is really affected by this.
Dx UC 1979 at age 14 - (I know, some kind of record)
Was Mildly Chronic (flares every couple of years) until last 2 years now Chronically Acute
Can only get about a month symptom free between flares now
Asacol, Canasa, Rowasa, Cortifoam (on Sulfasalazine for 28 years previously also Pred)
GI Doc recently told me I have "lead pipe syndrome" which is advanced scarring of colon
No surgery - multiple colonoscopies reveal uc "from rectum to appendix"
My Best Friend is My Shih Tzu/My worst enemy is uc


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/15/2008 9:08 PM (GMT -6)   

30 years with UC!!!!  Yuck!  Yes, I think you need to be more assertive.  Being agitated usually helped me get attention although I have to say my GI was very available and sympathethic.  It really doesn't matter how long you have had the disease the treatment is the same and he needs to be more aggressive. Just because you have had it for 30 years doesn't make it any different to treat??

 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


kaykay29
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 8/15/2008 9:15 PM (GMT -6)   
Thanks Suebear. FYI - - my daughter had the j pouch surgery in 2003 and is also doing well. Her case of uc was extremely refractory (responded to nothing as far as medications, infusions, etc.) and she had her surgery just 2 years after being dx due to the severity/extensiveness of her illness. My Mom also has UC although it is mild and she has been symptom-free for 5-10 years at a time. We obviously have a strong family component.
Dx UC 1979 at age 14 - (I know, some kind of record)
Was Mildly Chronic (flares every couple of years) until last 2 years now Chronically Acute
Can only get about a month symptom free between flares now
Asacol, Canasa, Rowasa, Cortifoam (on Sulfasalazine for 28 years previously also Pred)
GI Doc recently told me I have "lead pipe syndrome" which is advanced scarring of colon
No surgery - multiple colonoscopies reveal uc "from rectum to appendix"
My Best Friend is My Shih Tzu/My worst enemy is uc


kaykay29
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 9/8/2008 1:49 AM (GMT -6)   
My appt w/ my GI is finally today!  (I was on the "wait list" but that didn't help.)  I have kept a daily journal w/ my symptoms & I'm not leaving that office until we have some kind of a plan in place.   

Dx UC 1979 at age 14 - (I know, some kind of record)
Was Mildly Chronic (flares every couple of years) until last 2 years now Chronically Acute
Can only get about a month symptom free between flares now
Asacol, Canasa, Rowasa, Cortifoam (on Sulfasalazine for 28 years previously also Pred)
GI Doc recently told me I have "lead pipe syndrome" which is advanced scarring of colon
No surgery - multiple colonoscopies reveal uc "from rectum to appendix"
My Best Friend is My Shih Tzu/My worst enemy is uc


quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 9/8/2008 2:54 AM (GMT -6)   
Wow, all in the family! It's great you got an appointment this fast!! keep us posted as to the new plan.

If I had consistent symptoms as you with the loss of flexibility in my colon from constant inflammation...I'd definitely consider surgery before any of the big meds...

You're a trooper...but it might be a better for you at this time so that your options regarding take-down, etc are possibly better.

quincy


*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

Post Edited (quincy) : 9/8/2008 2:06:17 AM (GMT-6)

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