Irregularity and Rant

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bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 11/6/2008 10:25 AM (GMT -6)   
I am so close to remission (as in no blood), but my BMs are unpredictable. For a few days in a row I'll have very little stool, and then on a random day I'll have multiple BMs/diarrhea. I've kept track of the foods I've eaten and I haven't found a correlation. I also still have mucous. In my last remission with just Asacol, I only had 2-3 BMs at the same time every day; even when flaring, I would have to use the bathroom during certain times. This is so annoying! My GI is talking about increasing the Remicade dosage, which I'm not too excited about (I didn't even want to use Remi in the beginning)! Anyone else have this problem? Any advice?
 
Sometimes I think I should have just gone ahead with surgery (I was scheduled for surgery in September and canceled it due to a good c-scope). Three surgeons told me I'm going to need it sooner or later, and who knows how long Remi will work or what the long-term effects could be? And I'm just feeling sad and bummed out. I know things could be much worse but I also know that I'll never be "normal" again. And I hate not knowing what's going to happen and how to plan out my life and the fact that I had to give up stuff b/c of this disease. shakehead
 
Thanks for listening!
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/6/2008 10:54 AM (GMT -6)   
I had 10 good UC years followed by 2 bad UC years that ultimately led to surgery. I still regret the two years of my life lost because of UC. Although surgery shouldn't be taken lightly, the past 8 years post surgery I have been blessed with excellent health. I have not given up anything since surgery except for medication. I can keep commitments, travel at will, and hike to my heart's content. Not even my good UC years can compare to my post UC years.

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


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 11/6/2008 1:32 PM (GMT -6)   
ComedyDork - I hate to be a pain since you probably already know about this, but if you're next step is surgery then I have to say it.  Please try the spinach and sunflower diet.  I cannot believe the way my life has changed since I started it.  I never thought I would feel this good.  If you want to know more about it, I would be happy to tell you what I did (and of course you can read the other threads about it).  If you don't, I'll drop it.  It just sounds like you're at a crossroads.  Good luck with whatever direction you take. :-)

Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Asacol 1200 MG 2X daily, Iron 325 MG 2X daily, Zoloft 50 MG daily, Multivitamin.
Diet/Exercise:  Spinach/sunflower and low-residue.  Yoga, walking, cardio.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema.
Status:  Heading to remission???
 
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 11/7/2008 2:01 PM (GMT -6)   
Suebear, everytime I read your story, I really want to go get surgery! But I know it's a tough road and there's a chance (although small) that I could be worse off with surgery.

Katie, I'm glad spinach/sunflower has worked for you but I'm already on the last line of drugs--I don't think diet is going to make a huge difference and once I go back to living on campus, there is no way I'll be able to eat spinach everyday.
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil
 


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 11/7/2008 2:12 PM (GMT -6)   
Before I leave it alone, I just want to say that my symptoms were very severe and Remicade was my only other option because none of my meds have worked so far. I never thought the spinach thing would work, because I'd tried many other diets with no success (even SCD). I'm still totally shocked that it worked. Okay, I'll shut up about it now. ;-)
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Asacol 1200 MG 2X daily, Iron 325 MG 2X daily, Zoloft 50 MG daily, Multivitamin.
Diet/Exercise:  Spinach/sunflower and low-residue.  Yoga, walking, cardio.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema.
Status:  Heading to remission???
 
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/7/2008 2:47 PM (GMT -6)   
I understand. But if you look at the success rate the chances are very good that you would fall into that category. Ultimately you need to decide how much longer you are willing to compromise your life for UC. I do hope that you can acheive remission with the meds and enjoy your college years!

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


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 11/8/2008 6:28 AM (GMT -6)   
Hey Comedy Dork... I understand you 100%! I'm the same as you- no regularity at all. Yesterday I had 1 bm all day.... the day before that I had 7 bm's, all with extreme urgency. Yeah, I had eaten a fair amount of "junk", but still... Today I'm at 2 so far, both pretty big ones. No D, but urgency like you woudn't believe. I even had to pull over the other day & go outside, on the way to work. I too had surgery scheduled, twice! And cancelled both times, not due to any scope results but my own reservations. I didn't/don't feel that my symptoms are bad enough to merit surgery. Although in many ways I wish I had just done it, as I'd be on the other side by now, & well on my way to healing. As it is, I'm just on my way to my next high-dose Remicade infusion. I don't know what # infusion this one is, but it's up there. I have no doubt that surgery is by far the "cure" for UC, but it's a very tough call to make voluntarily...
You mention you hate not knowing what's going to happen- I think you do know what's going to happen. It's one of two things- either you get into enough of a remission with meds or you get surgery. What you (& I) don't know is how much time we'll give it before we have to make a choice. Or if we ever do make that choice. I suppose one could go on living with UC forever.  I won't bring up the diet issue- while it is nice that some things appear to work for some people, having to eat/not eat certain foods every day for the rest of my life is worse than pooping outside in my book! Don't beat yourself up over it though- surgery will always be an option, & since you've already done a lot of the legwork, it would be fairly easy to schedule it quickly. Just take it day by day...I'm telling ya, I'm right there with you! confused
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 

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