Is this all normal for Crohns/Colitis??

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ohio84
Regular Member


Date Joined Feb 2008
Total Posts : 35
   Posted 2/28/2008 8:05 AM (GMT -7)   
Hi.  My 17 yr old daughter started flaring at the end of Dec. Her flares are always bloody dir.  She was dx in 2003 with Crohns/Colitis. This is her 2nd flare since dx. Tried 40M Pred (didn't seem to help) Put her in the hospital for 4 days on IV steroids (didn't help).  Started Remicade in the hospital, seemed like a miracle drug the first week and then down hill the second week. Last weekend she was up every hour in the bathroom.  She had her 2nd Remicade two days ago.  Since then she is still up in the night about every 2 hours in the bathroom. Not always with a bowel movement but always blood/gas. Her sed rate a month ago was 10, in the hospital it was 35 and two days ago it was 45. She has had blood every day for two months.  Her tummy is also hurting alot and she was kind of nausous this a.m. Besides the Remicade she also takes Fish Oil, Nexium, Prednisone 30M, Multi Vitamin, Allegra.  My questions are:
 
Is this all normal for a flare up?
Is there still hope for the Remicade?
Is there other people out there who bleeds everyday for this long?
 
It is just really hard to see you child suffering and you cannot do anything about it and you don't know what it is going to take to finally get better.
 

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 2/28/2008 8:54 AM (GMT -7)   
First off I am so sorry your daughter is having such a tough time. During my first flare I did bleed almost daily for several months. I eventually ended up on Imuran. I have never been on Remicade so I can't comment on it. What does her GI say? Has she ever been on anti-spasmatics? Those slow the colon down so you don't get those urges to go all the time. We have lots of members who have had success w/ them.

You may also considering, if you haven't already, posting this on the Chrons board so you get more answers. Keep us posted and I'm sorry I can't be more help!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


ohio84
Regular Member


Date Joined Feb 2008
Total Posts : 35
   Posted 2/28/2008 9:01 AM (GMT -7)   

Tabitha,

 

Thanks for your reply.  I will also post to the crohns board.  I just thought I would try this board first because it seems like her symptons are more like colitis.

I have never heard of anti-spasmatics.  Is it over the counter or by prescription?

 

Thanks, Robin


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/28/2008 10:01 AM (GMT -7)   
I bled everyday for over 2 years. I had a severe flare that I just never was able to manage.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/28/2008 4:26 PM (GMT -7)   
I bled almost every day for the first four years, and it's definitely no fun. Remicade sometimes takes a while to take effect; that's why they usually do the first three doses closer together. I'd say there's still hope, but if she doesn't see improvement by the fourth infusion it's probably time to explore other options. There are some drugs available for treating Crohn's that aren't yet approved for UC, so ask over there about what is available.

Welcome to HealingWell, by the way. I'm sorry your daughter is having to go through this.
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


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 2/28/2008 5:14 PM (GMT -7)   
Anti-spasmatics are by prescription. There are several different ones. I think it would be worth it to ask the GI about them.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 2/28/2008 8:35 PM (GMT -7)   
when i last flared(about 7 weeks ago), I was up every 2 hours. I didn't sleep well for a a month, so it is quite normal for me during a flare.
Pharmacy Student, Class of 2009.  Diagnosed 8/99.  Suffered for almost 10 years.  I am currently on the Specific Carbohydrate Diet and am nearing remission.  I feel fantastic!    I have lost so many years to this disease.  I decided to become a pharmacist to understand these drugs, and to help fellow sufferers of IBD.  My goal is to open up a pharmacy and take care of my patients(particularly explaining what the drugs do to you), compound special medications, and have a great practice. HAVE YOU CONSIDERED THE SCD DIET? IT HAS PUT ME IN REMISSION AND I PLAN ON GETTING OFF THE ASACOL SOON TOO!
Meds 3200 mg Asacol, 2.5 mg Prednisone


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 2/28/2008 9:26 PM (GMT -7)   
I bled everyday for several months when first diagnosed and before diagnosis. I was up about every 20 minutes throughout the night for several weeks. I don't have any experience with Remicade. Hope your daughter gets better soon. Sorry you both are going through this.
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv
 
For a minute there, I lost myself, I lost myself...


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/28/2008 10:10 PM (GMT -7)   
I was on Remicade for months before I saw a big improvement. I think the reason was that the ulcer I had was soo bad, so even though it was healing on the Remicade, it was still open and causing problems. I probably would have given up on it but I had a colonoscopy right before I started it and then 3 months later, and my 1 inch deep ulcer was down to 1/4 inch! Eventually I started having more normal bms finally. The anti-spasmodic I take is Lomotil. Sometimes I am so grateful for it but I try not to use it too often. I do bleed a lot, it has gotten better since I have been taking Proctofoam but bleeding has always been a problem for me. Last blood test I had, I think my sed rate was 60? One thing I noticed is your daughter is taking fish oil. It's supposed to be great for inflammation, but I got more diarrhea while taking it. Has she tried not taking the fish oil to see if it helps? I hope she finds some relief. I was diagnosed when I was 15, it has been a long road so far and I hope your daughter has better results than I have. At least there are some better meds out now.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08

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