ulcerative colitis

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pj's
New Member


Date Joined Feb 2008
Total Posts : 2
   Posted 2/7/2008 1:26 PM (GMT -6)   
this is my first posting, so please bear with me.  I had my first flare 5/06, lasted couple of days, didn't see doc, thought it was hemorrhoids.  Next flare, 10/06, lasted 2 wks. Family doc sent me to gastro, by that time the bleeding & mucus had stopped so when I had colonoscopy 11/06, gastro only saw small area that looked healed in rectum.  He said I had proctitus.  Then, 1/07, big new flare.  Gastro put me on cortiform (enema) for 6/wks w/ no results.  Next  25mg hydrocortisone acetate (hemorrhoid suppositories) 4/wks w/ no results.  Tried Prednisone for about 6/wks, no results (oh, I did grow a pumpkin head).  Next tried Rowasa (mesalamine emema) 4/wks, no results.  Gastro couldn't figure out why nothing was helping (he probably thought I was a nut). 7/07 he did a proctosigmoidoscopy (flexiscope?) in his office.  I was full of ulcers as far as he could see, only about 12/inches, that was all the pain I could take.  At that point he diagnosed me with ulcerative colitis.  8/07 started Lialda (mesalamine oral) 4 1.2g tabs in am.(check kidneys every 6/mos)  Within about a month noticed decrease in blood, mucus and afternoon trips to toilet.  I do NOT have pain, constipation, or diarrhea but my stools are soft (ribbons) and sometimes fall apart in the toilet and are always laced with blood & mucus.  (thats not to say i never have had stomach pains, since the time i was about 10, (48now) about once a year i have such a bad stomach ache that i would faint, then start vomiting, and follow with diarrhea and nausea.  I have mentioned to docs, they never seemed concerned about it-maybe too much of a good thing!)  In the meantime, since about the time I started the Lialda, I noticed lots of pain and stiffness in my hands and feet especially in the am.  other occasional stiffness in hips/waist, neck throughout the day.  Told gastro, he said not the Lialda.  Told family doc, she sent me to rheumatologist.  Rheumy did lots of bloodwork: ANA-positive (expected because of UC), Vit. D - low 19.5, leukopenia - low 1.0 (or 1000), and SM/RNP -positive (marker for lupus).  Started 50,000u Vit D once a week for 6/wks, now 1000 day.  Rheumy also started me on Placquenil now because looks to be lupus and takes 2-3/mos to start working(had to see eye doc before starting & every 6/mos thereafter).  Rheumy did say sometimes UC causes other aches & pains.  Rheumy will repeat bloodwork 3/08 to confirm lupus.  (I eat regular diet, walk 1-2miles per day-not easy, I stress over everything-type A, achy, tired, don't sleep well-use lunesta, most have no idea because I am truly happy and put on a happy face).  So, 2008 hit and I've been bleeding for over 1 year.  Called gastro, asked if I should try prednisone(again) on top of the Lialda, he said no (rather his nurse did, she just relayed the msg).  I have appt in may.  My big questions:  Are there others out there that have flares that last this long?  What is happening to my intestines, are they falling apart??? Am I on my way to getting a fistula or something else?  Would I know right away if I had one?  Is it okay for my gastro to think it is okay to keep bleeding???
UC 7/2007
possible Lupus 12/2007
Lialda 4 1.2g tabs am
Placquenil 200mg twice a day
1000u Vit D, multi-vitamin,
B-complex, fish oil, acidophilus


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/7/2008 4:35 PM (GMT -6)   
Pj's welcome to HealingWell. If we have to have this DD, at least we can find support here. It sounds like you're getting a double whammy of auto-immune diseases. Often if you have one of them, another will show up at some point.

I began having blood in August of 2001, and had my first colonoscopy in November. I had pain, bleeding, mucus and frequency from August 2001 until April 2006. That's an unusually long time, most people don't flare for that long, but it does happen to some of us.

Arthritis-type joint pain is indeed one of the well known little "extras" that may accompany UC. In my case, the joint pain came about 10 years before the UC appeared.

Your intestines aren't falling apart, just the mucus membrane that lines them is staying irritated and keeps bleeding and making mucus because of the irritation. When you get into remission, your colon will be able to begin healing itself and the bleeding and mucus will stop. Fistulas aren't usually seen in UC, they're more a feature of Crohn's. In UC only the top layer of the intestinal lining is involved, the rest of the intestinal wall stays intact. It really isn't okay that you're still bleeding, but the medications take a bit of time to become effective and really show results. Even when the inflammation starts to go away, the colon still has to heal before the blood and mucus will stop.

It sounds like the Lialda is helping, give it a little more time to work. If it doesn't get you all the way to remission, your doctor may want to talk about adding additional medications like Imuran or 6-MP. Prednisone is not for long-term use, as it has some pretty horrific side effects over time.

Feel free to vent and ask your questions here. You'll find we all do that from time to time.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


pj's
New Member


Date Joined Feb 2008
Total Posts : 2
   Posted 2/7/2008 7:05 PM (GMT -6)   
Judy, thanks for taking the time to give me a little peace of mind.  It brought tears to my eyes just knowing someone would take the time to share their personal experience and and let me know I'm not alone in this experience.  thanx!!
UC 7/2007
possible Lupus 12/2007
Lialda 4 1.2g tabs am
Placquenil 200mg twice a day
1000u Vit D, multi-vitamin,
B-complex, fish oil, acidophilus


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/7/2008 8:15 PM (GMT -6)   
Pj's that's the reason for this board. We're here to share and support.

If you find out you do have lupus, you may want to check out the lupus forum here at HealingWell in addition to this one.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 2/7/2008 9:59 PM (GMT -6)   
I'd recommend you add Natren's Bifido Factor to the acidophilus you're currently taking. Acidophilus concentrates more on upper GI, bifidus on the colon.
Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 

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