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Regular Member

Date Joined Mar 2009
Total Posts : 50
   Posted 3/31/2009 11:18 AM (GMT -6)   
Hi Everyone,

I am new to the forum and just wanted to introduce myself.

I am a 41 year old mom who was first diagnosed with proctitis 13.5 years ago while I was pregnant (just months after quitting smoking). At the time, I remember clearly being relieved when I was told I had proctitis and not cancer. For the next 12 years I suffered through occasional flare ups which were easily controlled by Salofalk suppositories. When things started to go bad, I would realize that nothing was moving, I would use 6-10 suppositories and day and feel better within a week. I never felt as sick as I was when I was originally diagnosed.

In September 2006 I quite smoking (for the last time!). Two months later I started to loose weight, couldn't pass a bm, and suffered with constant nausea and cramping. I did not go to see the specialist. Instead I got my family doctor to give me salofalk enemas and I used them for 2 weeks along with the suppositories during the day. I got things back under control quickly. I lost about 12 pounds, missed a couple of days of work, but figured I had just had a particularly bad flare up.

Because I have been monitoring this myself for so long, when I started to feel no right in November 2008, I didn't really get too concerned. I increased my suppositories again and then would forget about it. I have done this often over the past 13 years. As soon as I felt ok, I would forget that I had any disease at all. This time the suppositories didn't seem to be helping again. I got some new enemas and started to use them occasionally. For the next couple of months, my condition didn't seem to improve or get worse.

In February 2009, things got out of control. I realized that I was making huge changes to my life to manage my illness. I was no longer eating in the morning so that I would have to worry about bathroom time while I was at work. I was booking appointments so that I could get home in the middle of the day to sit in the bathroom. I also couldn't hold the enemas in at night and I spent a lot of time curled up in a ball. My pain went through the roof and suddenly I was passing nothing but blood and mucus and diarrhea. I couldn't work anymore. I wanted to throw up all the time. I went to see my doctor.

4 Days later I was in for an emergency colonoscopy with my old gastro doc. We discussed the options before the procedure and the plan was cautious but appropriate. After the scope things changed. He very nearly put me right in the hospital. My entire colon was involved and it was in very bad shape. He put me on antibiotics and prednisone immediately.

2 Days later, as the blood continued, my prednisone was doubled. I continued to go to the bathroom 10 times a day, continued to pass mostly mucus and blood with a little diarrhea. And then suddenly I blocked. Nothing came out for 6 days. I was bloated, cramping and in terrible pain. I got to go for my second colonoscopy in 2 weeks. This time he said that he saw a little improvement in the right side and across the top but that I am not out of the woods yet and we are still working at saving my colon. My diet is down to a handful of options, I am to stay in bed for another 4 to 6 weeks and I have lost 18 pounds. The left side is not healing quite so fast. I am blocked now. I actually passed a tiny bit of diarrhea yesterday (the first in 7 days). Otherwise, I haven't gone except to release the enema remnants the next day.

I am having some side effects from the prednisone - joint pain, hair growth, my skin is dry and red, my hair is dry, I only sleep 3-5 hours when I take two sleeping pills. I have pain and cramping in my lower back and abdomen every day and occasionally feel like I would like to 'go' but I can't. I do occasionally experience some very loud rumbling. I have indigestion every time I eat anything.

I have had the last three weeks to do lots of reading, to contact two friends who also have UC so that I might benefit from their experiences, and to accept this diagnosis. I am getting there. I have a very supportive family and great friends who are so helpful.

I am eager to participate in this forum. I hope that I can share and be helpful while benefiting from all that you have to share.

Thanks for reading my story. I am sure it isn't too unusual.

Nice to meet you!
Female, 41
1996 diagnosed proctitis (during pregnancy, just months after I quit smoking)
Mar 3, 2009 diagnosed ulcerative colitis - it got my entire colon - severe

Fighting my first major flare up of UC (but I think my first UC flare up was at the end of 2006, 2 months after I quit smoking again)
60 mg prednisone (started at 30 but was doubled immediately) Mar 5/09
salofalk enemas = 5-aminosalicylic acid (mesalamine) added March 24/09 after second colonoscopy showed not enough progress ( previously managed proctitis with same stuff as suppository and then enema in 06)

Veteran Member

Date Joined May 2008
Total Posts : 574
   Posted 3/31/2009 11:42 AM (GMT -6)   
Hi and wellcome ito am fighting to save my colon at the moment and am also on 60mg pred (with every side effect going) rectal meds and mesalazine.But everyone here is so helpfull and friendly and always just there for you i hope that you feel better soon hang in there read lots of books and try and pamper yourself a bit
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started pentasa supps 1gm 26/6/08
 Asacol 800mg x2 twice daily
  Domperidone 10mg as needed
  co codamol 30/500 x2 when needed
  Asacol foam 2g nightly 19/3/09
  Prednisone 60mg 19/3/09 tappering after2wks

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 3/31/2009 11:55 AM (GMT -6)   
Hi, so sorry to hear about your suffering. I hope you find some helpful advice and support here, I know I do! So hard to relax, when you amped on prednisone and cannot sleep. I agree, pamper yourself. But try to not watch CNN, I do that a lot and my husband pointed out that it might be making my sadness worse...
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; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, tried to taper but now back up to 20-30 after several really bad days. Waiting for insurance decison on Humira...soon... 

Veteran Member

Date Joined Aug 2008
Total Posts : 5947
   Posted 3/31/2009 7:16 PM (GMT -6)   
     Hi Alli and welcome.   Sorry to hear you are suffering so much.  Has your doctor suggested Imuran or 6MP?  I've been on 6MP for over five years now.  It really hasn't kept me out of flares but I believe it has kept the UC from traveling further into my colon.  I was diagnosed in 1998 and my UC is confined to my rectum.  Right now I am in remission.  I had a bad bout last year around this time and was hospitalized for ten days last May.  Things will get better.  Try to stay calm (very hard to do while on prednisone, I know) and focus on getting well.  What do you take as a sleep aid?  I was taking Ambien CR but sometimes it wouldn't work either.  Do you take anything for pain?
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/ see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

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