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Posted 9/10/2009 2:31 AM (GMT 0)
Hey everyone!

Never been here before but dont know where else to turn.  I am a medical assistant for a Colon & Rectal Surgeon (ironically)  I was diagnosed with UC in 2003 and it has gotten progressively worse over the past six years.  I have been on every medication that is out there except the biologics.  You name it, Ive tried it.  Nothing works, no remission at all.  The meds that I take seem to get me just to feeling better but then I flare and it is usually worse than the previous time and its back to Prednisone (which I hate!!)

My GI now tells me it is time for Remicade, which I have been putting off for about a year now because it scars me to death!  He tells me that I have a 50/50 chance of it working for me.  Not great odds if you ask me...so the other option is of course the ileoanal pull through. This scares me too!  I think I'm ready to go ahead with the Remicade! 

I am (or used to be) a very active woman, a wife, mother of 3, triathlete, hiker, camper; basically a lover of life in general.  I no longer can do anything I like to do!  I havent entered a race in a year, havent camped or hiked for longer!  I miss my life!  My poor kids and husband dont know what to do for me. When Im in a flare I spend at least half the day in the restroom.  Luckily I work in the field and my boss understands but Im over it!

I guess my question, now that Im done rambling, is WHAT SHOULD I KNOW?     Remicade's side effects are just plain scary.    I know you folks cant tell me what to do but having some insight from those who have "been there" might help!

Looking forward to hearing from yall!

Shannon
Posted 9/10/2009 2:41 AM (GMT 0)

Hey, Shannon, I can't give you any info on Remicade, since I'm still at the point of putting off Imuran, but after reading your post and the difficulties you've had the past couple of years, I wanted to say I know what you're talking about with all the losses.  You're still hanging in there, though, and with all you've got on your plate, I'm impressed!

Oh, one thing I did was put a book in my bathroom and I read a 900 pager since April during all my bathroom trips.

Posted 9/10/2009 2:42 AM (GMT 0)
     Has your GI doctor prescribed 6MP yet?  I've been on it for seven years.  It doesn't keep me out of flares...but I do have remissions.  I am not a candidate for Remicade having been exposed to the TB virus back in the 60's.  I am a former lab tech.

     If I were you, I would ask about Imuran or 6MP before starting Remicade.  I did have to take it along with the prednisone because it takes about three month before "kicking in".

     I am now in remission..yippeeeee....started to see vast improvement about three weeks ago.  I have started going to a chiropractor too.  So, don't know whether his treatments have anything to do with my remission...but they sure didn't hurt!  I am off the prednisone, down to six Colazals, 50 mgm of 6MP, no  more Cort enemas or Canasa.

Posted 9/10/2009 2:43 AM (GMT 0)
I've gotten a lot of reading done! I'm up to a novel a week! Plus the mag subscriptions that I get!
I would rather read less though...
Posted 9/10/2009 2:47 AM (GMT 0)
I don't know what I would do if I were in your position but I would probably give Remicade or Humira a try and if I didn't have luck, I would try to get a jpouch. There is one lady who comes here with a jpouch who has a very similar lifestyle, hikes, camps, lots of activities and she is so thankful to be off the meds and done with UC forever. I think her name is suebear. I notice a lot of people who have surgery are very happy with their life after.
Posted 9/10/2009 2:48 AM (GMT 0)
Christine,

I've done 6MP as well.  Dropped my WBC so low and suppressed my bone marrow that I couldnt take it.  While on it I got shingles twice and what they told me could have been swine flu but I was never officially tested for it. 

During the 6MP I was also severely anemic to the point that I needed IV iron infusions.  YUCK!

Posted 9/10/2009 3:10 AM (GMT 0)
     WOW...well, when I originally started on the 6MP the doctor had me on 50 mgm.  With the latest flare...starting in May, my doctor increased the 6MP to 100 mgm and had me on 40 mgm of prednisone.  Saying I felt like **** is an understatement.  My white count dropped to 1.6!!!  Scared the beJesus out of me.  Being a former lab tech I KNEW that was bad...no antibodies.  My bilirubin was 2.1 too..but that could be from the prednisone.  Doc took me off the 6MP immediately and I stayed off of it for three weeks.  My white count went back up to 5.0..normal.  Lucky me I guess.   about a month ago he put me back on 50 mgm of the 6MP.  I go for a blood test the 21st, liver panel  My GI doctor is sending me to another GI specialist at the Univ of PA hospital on the 24th.  Now that I am in remission, this will be a consult with another opinion on treatment should I flare again.  I should mention that I only had a seven month remission, from Nov thru May.  I usually flare only once a year and they last anywhere from one to three months. 
Posted 9/10/2009 1:04 PM (GMT 0)
Like you I am a backpacker, long distance hiker (100-200) miles, cyclist, walker, and gym fanatic. UC took all of that away from me in a 2 year flare. I opted for jpouch surgery 8 years ago and am very happy to report that I can do all of my activities again without worry. I just returned from a 100 mile hike in the Sierras and one more time blessed my surgeon for giving me my life back. If or when you run out of options surgery can be life-giving. I wished I hadn't given up two years of my life waiting for remission to occur.

Sue
Posted 9/10/2009 1:21 PM (GMT 0)
Suebear,
Sounds like we might have been separated at birth! I am down to Remicade or surgery. My boss, a colorectal surgeon, tells me I'm looking at things all wrong and that I should be looking at my treatment as a path rather than a fork in the road. I've been doing the either/or approach but I think now I have decided to go with the Remicade see if it works (at leat until my pre-existing clause in my disabilitly plan expires) and then head to surgery.

My husband and some friends had been planning to hike Macchu Picchu in 2010 but that has been put on hold for now. We wanted to do Europe as well but ???? Who knows. I hate that I am the one holding things up but they are all very supportive.

Waiting on the GI to call and get me scheduled for my first Remicade treatment today...
Posted 9/10/2009 1:37 PM (GMT 0)
Welcome to HealingWell, DairyAiRN. I can tell you that I was diagnosed in 2001 and flared until March 2006 when I received my second Remicade infusion. I was going 25-30 times a day; the combination of Colazal, Entocort, Azathioprine and Imodium got me down to "only" 15 a day.

I recently had my first inkling of problems since starting Remi. I had a tiny bit of rectal inflammation which was likely triggered by Keflex and was taken care of by two weeks of hydrocortisone suppositories. I do everything I did before UC, and it's wonderful to have my life back.

I've had no side effects other than mild tiredness the day after my infusion, and no increase in infections.

I wish you the same wonderful results I've had, and maybe if the Remi ever stops working there'll be something new to help us.

Just one thing: do be sure you get a TB skin test before starting on Remi.
Posted 9/10/2009 2:01 PM (GMT 0)
Judilyn

You dont know how good that makes me feel!  I heard horror stories about the side effects and getting lupus, lymphoma, never feeling quite right, the Remi not working after so many years. 

Unfortunately being in this field I've probably seen too much and know too much!  Sometimes it's not that great being so well informed! skull

Thanks for all the help here!  I feel like I've gotten more "real life" advice and that is what I think I really needed!!

Posted 9/10/2009 2:27 PM (GMT 0)
I'm glad you're finding the site helpful. It was a life saver for me back when I had to take my laptop into the bathroom just to be able to complete a post without stopping to go.
Posted 9/10/2009 2:33 PM (GMT 0)
"take my laptop into the bathroom just to be able to complete a post without stopping to go."

I do this all the time!!

Posted 9/10/2009 2:59 PM (GMT 0)
How is life with a J-pouch?  I was told that you still go about 6ish times a day?

When I flare I go about 3-4 times a day?  Is there still urgency?  Is it really an improvement?

Posted 9/10/2009 3:16 PM (GMT 0)
Life with a j-pouch is great. Yes, frequency is higher but most times I empty my pouch it's because I have to pee. There is no pain or urgency; emptying a pouch is as quick as urinating. For me this is improvement over refractive UC. I have predictability in my life, take no medications, and keep commitments. Those were things I could not count on with UC.

Sue
Posted 9/10/2009 3:25 PM (GMT 0)
Sue, that's what made me want the pouch over the Remicade...NORMALCY!!!! I dont know that one has that with having infusions every 8 weeks and having to schedule your life around your infusions but my boss/surgeon talked me into trying the Remicade because if that doesnt work at least I have one last option...surgery.
Posted 9/10/2009 3:30 PM (GMT 0)
I think exhausting all medical options is good advice. Patients need to be certain that they have given medicine their best shot and feel certain that there is no hope for remission. I exhausted all medical and alternative treatments in the 2 year flare which made the surgical decision easier to arrive at. I hope you find success with Remicade and can at least have a bit more predictability in your life.

Sue
Posted 9/10/2009 5:28 PM (GMT 0)
I've been on Remi for four year now; I've had no side effects and the same as you and SueBear, I've led a very active lifestyle. When I was dx'd with UC, I was so very sick, and none of the other meds touched the pain I was in. I was sick and tired and I was so dissapointed that life had virtually stopped for me; that is I could no longer do the hiking, biking, etc. that I loved to do. The day after I had my first Remi treatment I noticed a difference. Four years later my colon is healed from ulcers. Not to say that the UC is gone; I'm just in remission. The only way you can totally be free of UC is to have the colon removed. I'm happy with my decision to do the Remi; maybe one day I'll consider j-pouch and SueBear has given me the courage to do so. She is definitely proof of a successful j-poucher! Also, my doc is changing the intervals of Remi treatments from every eight weeks to twelve, and then hopefully I'll move down to maintenance meds. I am also at the 1 hour level for infusion; so my total time for infusion now is about 2 hours max. I just figure it's part of a schedule and it doesn't interfere at all with my life. Just something I have to do! ;-)

Posted 9/10/2009 8:52 PM (GMT 0)
Glad the Remi has helped you, Carol.

I am really glad I found this board! I was walking around aimlessly with no idea of what I was going to do but I think I'm more prepared to make a decision now!

Thanks!!!!!!
Posted 9/10/2009 9:15 PM (GMT 0)
Hi all,
I too, am a long time sufferer... diagnosed way back in 1991. I had a terrible time over the years; and was close to surgery at several points.. I never did try remicaide; that was my next step several years ago and.... then REMISSION. no ryhme nor reason that I can figure, but I was perfectly healthy for almost three years (50mg/ 6mp as maintenance). I was extremely active, and enjoyed hiking, biking, and the gym. I now have relapsed , and too am scrambling for answers. I am on 40 of prednisone, and upped the 6MP to 100 mgs. I am still bleeding pretty abadly, esp. in the AM, and feel AWFUL from the pred. I think that at this point the steroids make me sicker than the illness!! I will give it a few more days and then will see my DR... perhaps remicaide is next. It amazes me how many of us are out here.... hang in there, you are not alone!
tree
Posted 9/11/2009 4:30 PM (GMT 0)
     Tree...the flare you are suffering with now sounds exactly like the flare I had starting in May.  Same meds too!!!  The doctor started me at 40 mgm of prednisone and increased the 6MP to 100 mgm.  I, too, felt TERRIBLE.  Get your white count checked if you haven't already.  Mine dropped to 1.6 and the doctor had to stop the 6MP for three weeks.  When my white count went up to 5.0 he started me back on the 6MP but only at 50 mgm.

     I also started going to a chiropractor last month.  Don't know whether he had anything to do with it or not, but I am now in remission for the last two weeks.  Could be a combination of treatments, but hey...I am going to continue with the chiropractic treatments too.  Off the Cort enemas and Canasa AND prednisone!!!!!

Posted 9/11/2009 6:25 PM (GMT 0)
I am feeling great on Remicade. Now I just have to grow a stronger bladder, because it was never put to the test when I had to poo so much!
Posted 9/11/2009 9:25 PM (GMT 0)
Christine, Thanks for the reminder about checking my white count. I had become so confident and had being doing do well on th 6MP for maintenance, that I slacked off on the lab work. I cannot wait to turn this one around, agggh!
Posted 9/11/2009 11:20 PM (GMT 0)

suebear said...
Life with a j-pouch is great. Yes, frequency is higher but most times I empty my pouch it's because I have to pee. There is no pain or urgency; emptying a pouch is as quick as urinating. For me this is improvement over refractive UC. I have predictability in my life, take no medications, and keep commitments. Those were things I could not count on with UC.

Sue

Sue-
Please tell me how long it was before it became "great"? I'm one of those who had been in remission for the past 10 years due to diet (no wheat, light milk and some raw foods/veggies/honey with enzymes to help with digestion.) In fact, my gastrointerologist kept taking notes I was doing so well. Unfortunately I developed dysplasia in 2005 which did not go away, so I underwent the surgery in March. The second part was completed mid May, and I'm still so sore and uncomfortable from going so often and with so much explosive gas that I wish I would have waited. So tell me it does get better and more "normal" with a j pouch...
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