Do the symptoms EVER go away completely?

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bamap
Regular Member


Date Joined Jul 2007
Total Posts : 26
   Posted 10/4/2008 3:35 PM (GMT -6)   
Hi All.
I was dx w/ ulcerative colitis last year (left sided colitis approx 1/3 of the colon). At that time, I was also diagnosed with a systemic auto-immune disorder and have been on prednisone for over a year now (started at 40mg, now at 10mg/day). I'm also taking Imuran (100mg/day), Canassa, Colazal. Even with all of this, I STILL pass bloody mucous every day - sometimes several times a day. I don't have cramping or diahrea and otherwise not too affected. BM's are pretty normal, my diet is good and weight is stable.

Is this a typical symptom that I should just learn to live with? Or is this indicative of active inflammation that needs further attention? Is it unrealistic to think I'll ever be normal again (whatever that is)? The 'chronicness' off all of this has taken it's toll on me physically and emotionally. I'm sure many of you can relate.

Any advice is greatly appreciated!

Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 10/4/2008 4:04 PM (GMT -6)   
Yes, this is a very frustrating disease. When I was in the worst part of my flare, which I am in my first flare ever, there were times that I really didn't care if I died. I have always been a positive person, my cup half full always. Not caring if I died wasn't anger for me or depression, it just was. It was a feeling of knowing God would take care of everything.

I was just officially diagnosised this past August. I don't know if life will ever be as it was before, but I have a feeling it won't be. But it's okay because we have life! I look at my husband, children, and grandchildren and am thankful to be here on this good earth.

Forgive me of my rambling, but no sweetie, you are not being unrealistic at all. Keep moving forward!

Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
 
 


SocalJohn
Regular Member


Date Joined Oct 2008
Total Posts : 160
   Posted 10/4/2008 5:54 PM (GMT -6)   
I hate to say it, but it just all depends. I have read people on here that never go completley back to normal, and others who go in to complete remission. I wish you the best of luck on going back to normal. For me, I spent 3 wonderful years in remission. I know your all gonna laugh, but being able to poop is something people take very much for granted. I lived my life normally for 3 years. Now in a flare. Hopefully I can get back there again.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 10/4/2008 6:03 PM (GMT -6)   
     Reading a lot of these posts and trying to see how each of us are similar in when our symptoms appear.  Seems like a lot of us start flares at change of seasons....spring or fall.  Wonder why that is and if this really is allergy related.  There is a lot of asthma on my mother's side of the family.  My youngest daughter developed a slight case of asthma in college but doesn't seem to suffer with it every year.  I've been in this flare since April and on prednisone for the most part.  I know it does terrible things to the body, but hey, if I can get some good quality of life instead of suffering all day, going to the bathroom six to eight times, bleeding, cramping and urgency, I am willing to stay on a small dosage for the rest of my life.  I can say this because I am already 62 yrs old.  My heart really goes out to you young people.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4180
   Posted 10/4/2008 7:47 PM (GMT -6)   
I'm sorry to hear you haven't been able to get into a full remission yet. No, I don't think this is not a symptom that you should just learn to live with. If you have been passing bloody mucous for over a year, I personally would go back to your GI and talk about your options, or if he or she isn't helping then find a new doctor. There are other meds you can try in addition to what you're taking now or in place of (Rowasa enemas, steroid enemas, Remicade, Humira, etc.). A lot of people have found relief of symptoms by adding in natural supplements too. I hope you feel better soon.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/5/2008 7:18 AM (GMT -6)   
I agree with Sara. You shouldn't have to learn to live with bloody mucous several times a day. What color is the blood? If it's a bright red, it can be from hemmeroids or rectal inflammation which can be remedied thru rectal meds. If you are still on Canasa then you can either try a liquid retention enema such as Rowasa or even steroid suppositories or enema. The mucous can be from the inflammation as well or it can be from eating something your body doesn't like. Mucous in the colon is much like the mucous in our noses. It's a defense mechanism to rid your body of unwanted things. Call your doc up and see if there is something else that can be done for you.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/5/2008 12:08 PM (GMT -6)   
Full remission is possible - although in some cases it can take a long time. I agree with Red and Sara. If your current doctor isn't helping you get there, it's time for a new doc.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next infusion: 10/07/08
Last Prednisone dose:  7/15/08
 
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mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 10/5/2008 12:19 PM (GMT -6)   
In 14 years I have never been symptom free. I have had some nice remission time but it is usually short lived. Most of the time I judge my state on how severe my symptoms are, not on how good my remission is....
33 yr old male. UC for 14 years. 5mg pred (tapering off), 12 pills Asacol per day, Dicyclomine (for cramps), 0.5 - 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!)  "I poop in the woods because I can"


bamap
Regular Member


Date Joined Jul 2007
Total Posts : 26
   Posted 10/5/2008 1:32 PM (GMT -6)   
Thank you to everyone who responded. I suspected much of what was said. My drs are very attentive and on top of things. I just had another colonoscopy and endoscopy - both showing problems. My meds were increased and ALL symptoms disappeared (yippee). Then, after about 4 weeks, I start seeing the dreaded blood/mucous again with the rumbling. Why? Meds the same, diet the same, etc. My case is complicated by the other issues I have and deciphering if one is causing the other and vice versa is daunting. Luckily, treatment is pretty much the same, but the more I increase the meds, the more I'm convinced they're making me worse overall. Am I crazy?

Thanks again! Best wishes to all with this horrible disease!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 10/5/2008 2:07 PM (GMT -6)   
     No, you're not crazy, this disease is.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


wvueer
New Member


Date Joined Sep 2008
Total Posts : 7
   Posted 10/5/2008 7:32 PM (GMT -6)   
Keep a positive attitude.  I know it is hard. There were days that all I did was cry.  I found that taking Celexa helped me to get through my whole ordeal.  Also talk to your doctor about an anxiety pill to help with the nerves.  God bless and hopefully someday you will be symptom free!
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