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Ulcerative Colitis
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Posted 9/8/2011 2:16 PM (GMT 0)
May 2011 I fell apart!  turned 45, hubby lost job, started menopause and started feeling really really bad.  Thought my appendix was rupturing, but after CT, misdiagnosis of Diverticulitis with antibiotics, and finally colonoscopy discovered UC.  Lost 15 pounds in 3 weeks.  Put on Prednisone briefly, then on 1 cap of Pentasa 4 x daily.  Have not eaten "normally" since May!  Sick of mashed potatoes and bland foods!  Have not had a day that has been symptom free.

MOnday, things worsened for some reason (stress maybe?).  went to my doc tues am and he doubled the pentasa (now 8 caps a day) and started me on VSL3 (1 pk a day).   I feel decent as long as I don't have to go.  When i go, severe tearing pain in abdomine, lots of blood and vomiting.  Nightmare!

Anybody think I could be reacting to the Pentasa or is it the UC? 

If I have been diagnosed with a Mild case then I really, truly and totally feel for those who are severe!

Posted 9/8/2011 3:44 PM (GMT 0)
I have never had vomitting from UC but I know that others have. Were you vomitting before you started the meds? If not then maybe its the meds. But if you are having severe pain then that too can lead to vomitting. Enemas have been a lifesaver for me in regards to the bleeding. I use Rowasa...currently on taking every 3rd night but when flaring its nightly.

And yes stress can do it to you in a heartbeat...literally.
Posted 9/8/2011 4:17 PM (GMT 0)
Hey 40&crashing, Welcome to Healing Well,

I am sorry you're feeling so bad. I think stress plays a big part in this illness and it sounds like you're dealing with quite a bit of it right now. Have you spoken to a professional to get some of the worries off your chest and possibly receive treatment?

Do you know where your UC is located in your colon? Did the colonoscopy show UC throughout or limited? Some people do better on other medications besides Pentasa. Pentasa is actually more prescribed for Crohn's and it releases higher up in the GI tract whereas a medication like Asacol, Lialda, Apriso or Colzal are specifically designed to release in the large intestine (colaza releases in the left side). You may want to look into getting on one of those medications. Another thing we find very helpful here are rectal medications. if you have inflammation in your rectum, these are the best for getting that area healed. There are steroid and mesalamine enemas (basically Pentasa topically applied to the rectum). How long were you on prednisone and what dose?

The tearing in the abdomen worries me and it doesn't sound like a normal symptom of UC - we deal with a lot of cramping and pain but I've never heard it described as tearing... I have never thrown up from UC but I have felt nauseated like I may throw up. If you're feeling really bad, I recommend going to the ER. Was the doctor you saw a GI specialist?
Posted 9/8/2011 4:28 PM (GMT 0)
      I would like to know who makes the decisions to catagorize whether the disease is mild, moderate or severe too.  For YEARS I had ulcerative proctitis.  The GI doctor had me on Colazal and I do think it kept the disease from spreading further up into my colon, but, my rectum was a mess shakehead .  Nothing seemed to keep me in remission and believe me, I tried them all...6MP, Remicade, then Humira.  I became prednisone dependent for two years prior to my total colectomy with end ileostomy last year, which CURED me.  However,  the diagnoses on every colonoscopy and sigmoidoscopy I had done said....mild/moderate ulcerative proctitis...go figure.
Posted 9/9/2011 11:51 AM (GMT 0)
Thank you for responding.  I started back with 20mg Predisone yesterday and felt better shortly thereafter.  So now I am taking20 mg Predisone daily along with 1000mg Pentasa x4 daily and 1- VSL3. 

When I was first on the Predisone in May, I started with 20mg/daily for only 3 days.  Began tapering on day 4.  My GI's original idea was to have me only on the VSL3 by August/September.  Do you think that maybe i came off of the predisone too soon the first time?

My GI said I had a mild case, but I feel like I am on pill overload. 

I am working hard to de-stress my life.  Hubby went back to work last week so that is a blessing.  I keep repeating... This too shall pass.  LOL

 

Posted 9/9/2011 1:26 PM (GMT 0)
     Pill overload?  I think UC sufferers are all on pill overload.  At least I was.    Before my operation, I took anywhere from 17 - 25 pills daily plus the rectal meds.    Prednisone gave me uncontrollable high blood pressure and I needed to take three different blood pressure meds.  It also gave me high blood glucose levels and my family doctor had me on a pill to lower my blood sugar rolleyes .  For my ulcerative proctitis, I took nine Colazal pills a day, prednisone, 6MP (seven years on that) and rectal meds.  Not to mention the probiotics and vitamins,  Ambien for sleep because Prednisone gave me terrible insomnia.  UGH!!!  It's a wonder I am still kicking.

     It is possible you were taken off the prednisone too soon.  I don't know the taper you were on.  My GI doctor usually started me on 40 mgm with a 5 mgm per week taper.  For the year prior to my operation though, as soon as I got down to about 15 mgm...whammo...another flare.

     I hope you are feeling better real soon!

     By the way....I now take only 1 pill a day...25 mgm of Toprol xl for blood pressure.  I take Calcium (because of osteoporosis thanks to the prednisone) and a daily vitamin. 

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