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why can't I achieve remission like some of you?

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Ulcerative Colitis
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Posted 11/9/2010 4:35 PM (GMT 0)
Why can't I achieve normal stool like some of you? I'm on asacol and canasa and yes the bleeding my be almost gone, but I never have a normal stool, still have some urgency, lots of gas and I had been checked in the past where one doc said I was healed but I was still have long, skinny stools. Maybe yeast I'm thinking? I don't know any more.
Posted 11/9/2010 5:59 PM (GMT 0)
I think that is one of the great mysteries of UC; why some folks can maintain/achieve remission, while others, who do everything right, cannot. I wish I had an answer for you. It's kind of the same with me; I did everything right but ultimately lost my colon due to the inability to gain remission. For the last 2 years of my UC I constantly questioned why others responded to meds but why my body no longer did. I wish I had a better answer for you; it certainly isn't because you haven't tried.

Sue
Posted 11/9/2010 6:19 PM (GMT 0)
I'm not trying to be flippant, but it's just one of those things that makes UC suck. I honestly wish that everyone could achieve remission like I have. So have you tried Rowasa? Maybe getting a truly topical med higher into your colon will help. What dose of Asacol are you on? Do you ever notice whole Asacol in your poop? Maybe you need to switch to one of the other forms of mesalamine, such as Lialda or Apriso.
Posted 11/9/2010 6:33 PM (GMT 0)
It's sort of like acne. I'm extremely predisposed. Ever since I was about 12, I've had acne. Even today, at 48 going on 49, I have acne. I expect it might go away when I start going through menopause, but until then...

As for my IBD, its from an imbalance of bacteria in my colon that was caused by external factors. So I'm not predisposed. Hence it should be easier for me to get into remission than those who are predisposed. Fecal transplantation, which balances out the fecal flora, gave me normal stools. However, further antibiotics caused my stools to get smaller and thinner like yours.

I also have issues with my liver not being able to digest certain foods, in particular fructose and other "ose's." I do believe the extra digestive juices cause my immune system to start attacking itself in an effort to get rid of all the extra juice. I've been better at cutting out sugars from my diet, and that has also helped greatly in giving me normal stools.
Posted 11/9/2010 6:34 PM (GMT 0)
I am the same way. It's very difficult to deal with. I've tried a lot of meds too. I'm on 6mp and allupurinol. I've also tried Lialda, Colazal, antibiotics, Cortifoam, prednisone and Rowasa... It's just one of those questions that will probably not be answered in my lifetime.
Posted 11/9/2010 7:14 PM (GMT 0)
This is a question that many of us wished there was an answer! Uc is so very individualistic that it's hard to pinpoint just ONE thing that could help us all. I gave up trying to be normal or at least have normal bm's. Uc is what it is.....a disease of unknown variables.
Posted 11/9/2010 7:18 PM (GMT 0)
Yes it sucks, and one persons cure doesn't work for another. Not knowing the exact cause is the biggest thing, so you are left guessing why. I just can't believe they can't find what is the exact cause of UC or other so called auto-immune diseases.
Posted 11/9/2010 8:28 PM (GMT 0)
I thought I'd be one of those persons that would sail into remission. I consider myself in remission with blips along with the way and when it's perfect, it's perfect. I call that my remission, my status quo. Some people can forget they have UC. I can't.
Posted 11/9/2010 8:32 PM (GMT 0)
Thank you so much for your responses. I'm hoping to start colazol, I do see pills in my poop. I'll keep you posted :)
Posted 11/9/2010 8:57 PM (GMT 0)
Do you have pancolitis, though? For some reason I'm thinking you do, but might have you confused with someone else. If you do have pancolitis, I'd really caution you about taking Colazal, as it doesn't start dissolving until it's partway through the colon, leaving the part closest to the small intestine untreated.
Posted 11/9/2010 9:03 PM (GMT 0)
I just use to have it by the cecum and left side now I have it a little bit more everywhere. I just want a big, dry poop, not these skinny flat things
Posted 11/9/2010 9:08 PM (GMT 0)

suebear said...
I think that is one of the great mysteries of UC; why some folks can maintain/achieve remission, while others, who do everything right, cannot. I wish I had an answer for you. It's kind of the same with me; I did everything right but ultimately lost my colon due to the inability to gain remission. For the last 2 years of my UC I constantly questioned why others responded to meds but why my body no longer did. I wish I had a better answer for you; it certainly isn't because you haven't tried.

Sue

Well said, suebear... I have tried everything conventional and alternative under the sun to no avail too.  The funny part is I had a ten year total and med free remission when I wasn't trying anything.  This disease is so "evil" and powerful sometimes that it is confounding and that's just the way it is- one has to keep trying though and as best as one can. try and minimize the stress of getitng frustrated, since stress doesn't help (even though it is not a cause).  Sometimes I feel like throttling someone for posting that they go into remission after nibbling spinach and sunflower seeds for a few days or something- but it is the nature of the beast that some peoples' IBD is weak and fickle while others have developed a momentum and power that just keeps coming and coming like a terminator.  To Therearemiracles- here's hoping you find a magic bullet though- obviously for some they exist.

Post Edited (Probiotic) : 11/9/2010 3:57:21 PM (GMT-7)

Posted 11/9/2010 9:12 PM (GMT 0)
Why don't you try Lialda or Apriso, then? It sounds like you have pancolotis more than left-sided, and by going on Colazal you could be leaving a lot of inflammed area untreated. I just don't want to see you get any worse. Maybe think about Apriso...it starts dissolving at a lower gut pH than Asacol, and those of us with UC are speculated to have lower gut pH. I was seeing Asacol in my poop, too, but have never found Apriso.
Posted 11/9/2010 9:28 PM (GMT 0)
Hi I did try Apriso but my hair started falling out! :(
Posted 11/9/2010 9:29 PM (GMT 0)
Until I came to this forum I didn't know "remission" was possible and was what I should be aiming for. I spent almost 10 years with symptoms getting worse but drugs didn't help and doctors (I had several along the way) didn't explain much to me. I tried many RX drugs, diets, acupuncture, hypnotherapy and supplements over the years and never had positive results and never had any cessation of symptoms, never a remission.

Until I started reading this forum I never really thought about how other UC people were doing. The only UC people I met briefly were 2 people that had the surgery, both were very happy and functional, but that solution was not one I wanted for myself.

Now that I know others CAN achieve remission with drugs am I envious of them? Not really.
For whatever reason my UC has been a very hard riddle to solve. It has taken tremendous effort, concentration and discipline to achieve the 95% remission I have today. Wish it had been easier and sooner.

I know from reading here that diet mod. and SCD doesn't work for others. Heck it didn't work for me the 1st time I tried.

Don't give up hope. Keep taking meds as long as they don't hurt your health in other ways. Keep trying other suggestions as long as they (ditto). If you decide to choose surgery you'll very likely be happy you did (from what I read).
Just do the best you can.

I never had a personal deadline that was set for surgery if nothing else worked so when things were bad in the past I would just try and do the best I could each day. It would take an emergency/crisis for me to make the surgery choice. That's my choice but I am happy others have found health and freedom if they did choose surgery.
Posted 11/9/2010 11:13 PM (GMT 0)
Have the doctors tried stronger drugs? Some people on here are unresponsive to Asacol and similar meds, but have terrific success gaining remission with a short bout of steroids or other 'more potent' drugs ... then using Asacol to maintain remission.
Posted 11/10/2010 12:14 AM (GMT 0)

Zippy123 said...
Yes it sucks, and one persons cure doesn't work for another. Not knowing the exact cause is the biggest thing, so you are left guessing why. I just can't believe they can't find what is the exact cause of UC or other so called auto-immune diseases.

They can't find what the exact cause is, because there are many causes, not just one.
Posted 11/10/2010 12:56 AM (GMT 0)
Of course you have tried eliminating all forms of sugar and processed carbs ?
Posted 11/10/2010 10:06 AM (GMT 0)
Mine never bulked up till I started consistently using the Konsyl fiber.
Posted 11/10/2010 2:08 PM (GMT 0)
I'm going to give Lialda not colazol a try since the ulcers are throughout my colon and not just on the left side anymore. Apriso made my hair fall out. Thanks Fruitgirl, it's silly to not try a drug that doesn't work in the whole colon. Do you just switch from one drug to the other the next day?

Thanks for your responses

Posted 11/10/2010 3:55 PM (GMT 0)
wondering if you have ever tried a fiber supplement? they really bulk things up nicely.
Posted 11/10/2010 4:04 PM (GMT 0)
Yes, when I went from Asacol to Apriso, I just finished up the bottle of Asacol I had, and started the Apriso the next day.
Posted 11/10/2010 4:08 PM (GMT 0)
Thanks Fruitgirl, I'm just waiting to hear from my doc that the switch is ok. I read that asacol had Lactose in it, Lialda does not, I'm wondering if this would cause my gas since I'm basically lactose allergic
Posted 11/10/2010 4:11 PM (GMT 0)
I also would highly recommend psyllium fiber. It has made a huge difference for us. Helped immediately with urgency, frequency and stool formation . Also, are you on any type of probiotics ?
Posted 11/10/2010 4:14 PM (GMT 0)
It could be the lactose...who knows!

Also, are you willing to try an enema instead of a suppository? If the suppositories help, I bet the enemas would help even more, since they treat such a larger area of the colon.
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