ULCERATIVE COLITIS

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Daniel Stuart Morton
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/1/2009 9:46 AM (GMT -6)   
I am 62 years old and was diagnosed with U/C  6years ago, I was in remission from 2006 until  Jan 2009, for the last 7 months I have had constant Diarreah (cant spell that word) without any blood. My bathroom visits vary from 3-10 times a day. I do not get many cramps but have lost about 30lbs since Jan 2009.
The only medication I am on is ASACOL that I take two tablets( 800 mg each) 3 times a day.  I also take 4 Calcium tablets with vitimin D every day that has dramatically improved my bone density.
I have found foods with spice in ( that I love) really agrivates my condition and my bathroom visits excualate! 
I also found Beer to have a similar effect. as well as Bread, oats, and wheat products
My Doctor wants me to start on Remicade next week and I am concerned. I read some of the comments on this subject, and I do not feel I am ill enough? or am I in denial?

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/1/2009 10:07 AM (GMT -6)   
Well, there are differing opinions on this from GI's. Some GI's feel that by bringing in the big guns first and healing the ulcers is a more beneficial approach, while others feel like they should try the traditional approach of step up with meds. The thing with Remi is that like all meds, what works for some doesn't for others. So I think that's where the hitch is. Some might be able to get remission by using the step up meds like Asacol, others (like me) may not find remission until they go to the big guns. I made the decision to go on the big guns pretty quickly (about 8 months after I was dx'd) because I was in such a flare and really sick. I needed a life again, so I was willing to try it. I've been in remission ever since. Knock on wood? lol.

Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 7/1/2009 10:21 AM (GMT -6)   
I think you really have to look at the scope results. I thought I was "okay" but not great but my scope was horrible. My doctor said he was sorry like three times.
Jessica 27/F
Remicade, Entocort 3/day, Rowasa ,
Apriso/4 pills
Citalopram 20 MG
Align


Daniel Stuart Morton
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/1/2009 10:31 AM (GMT -6)   
Thanks.  You make a good point Jessica!  My last scope 8 weeks ago showed I had U/C throughout my colon, wereby 2 years ago it was contained within a 14 inch length
Carol, You have had 29 treatments? How often?
Thanks

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/1/2009 10:45 AM (GMT -6)   
Yes, and quality of life is important too. I was told even if I'm feeling good that a colonoscopy is in order every few years at least just to make sure there aren't any other areas of inflammation that are starting in my colon. Amazingly enough, my GI told me that I had a moderate case of left sided UC, but it was enough to make me very sick. I have been on the Remi for about four years now; every eight weeks. I'm being scheduled for a colonoscopy and after that my doc and I will talk about moving down to another med or staying on Remi. At this point, I feel so well, I'm kind of nervous about changing meds if that's what my doc wants. Of course, I'll be my own advocate.... 

Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/1/2009 11:27 AM (GMT -6)   
If I were you, this is what I'd do before trying Remicade:
1. Start a rectal med, maybe Rowasa (a mesalamine enema) and use it every day for at least a month. Then, if you get into remission, try to taper. I'm using it twice a week now.
2. Take a probiotic
3. Consider using prednisone SHORT TERM to get into remission.
4. Stay away from the foods that bother you! :)

Really, it doesn't sound like you're in *that* severe of a flare yet, and I think you have other options to try. The biggest reason I suggest this is it sounds like Asacol worked so well for years.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/1/2009 11:33 AM (GMT -6)   
Another thought, but unrelated to your UC.

You might want to change you screen name, as it appears you've used your full legal name. There are some crazies out there....
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/1/2009 11:33 AM (GMT -6)   
I think most importantly you should ask your doc what the reasoning is for him wanting to start you on Remi. We can give you advice on what's worked for us, but you really need to talk to your GI, and then settle on a medication regimen.

Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 7/1/2009 1:34 PM (GMT -6)   
Also, have you been tested for celiac since you think wheat is bothering you? You may ask your GI to check you to make sure you don't have it. Good luck.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
 


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 7/1/2009 3:51 PM (GMT -6)   
Do try enemas before you start remicade. Quincy has suggested me retention enemas which i will push for when i meet my GI... i would suggest you the same. Try enema + asacol combination and also make some diet changes....identify foods that cause problem and stay away from them.
Hope your health improves soon!
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 77 mcg in June'09 :-(


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 7/1/2009 9:27 PM (GMT -6)   
My new GI put me on Imuran first. I have had UC 15 years and he told me he didnt want to try biologics yet.... I would ask your doc to try some other things such as Immuno suppressants first....
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:No longer on Pred as of 6/15/09, 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections monthly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"

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