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frequent urgent bowel movement ulcerative colitis
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wnivsh posted:
Howdy,

Have had UC for about 8 years and my biggest problem is the urgent bowel movements. It has gotten to the point that it pretty much controls my life. Luckily my job is such that it isn't a problem there but vacations, trips out of the house, even little things like going for a run are almost to the point of no go's. It's incredibly frustrating. I've been taking pretty large doses of prednisone for about 5 years. The Asacol and the Remicaide didn't work at all for me and the prednisone barely helps. I've tried everything from the metimucil to cactus juice to aloe vera with no success. So question time:

Am I missing anything? My doctors have always told me to avoid surgery and I'd rather not, but what else can I try or do. Making sure there is a bathroom near me at all times is making living life difficult. Is there some kind of medication I'm missing? I've figured out some of the foods I have to avoid, but it's still a problem. I'm sure I'm not the only one dealing with this but maybe someone has stumbled on something that worked for them that I'm missing.
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mindyj1971 responded:
Hello wnivsh! So sorry for what you are going through. I went through the same thing! I was scared to death to leave the house and I still had accidents here at the house. It got to the point where I was wearing Depends if I had to go to the grocery store:( We are all different...and unfortunately my Crohn's settled in my rectum making it extremely painful every time I went...which was up to 30 times a day. I have had 5 surgeries (was diagnosed in 2008) and just had my colon and rectum removed in December of 2010. It certainly was not what I had wanted my outcome to be, but I have a life now! No more pain and no more worrying about leaving the bathroom for 5 minutes.

The only thing that ever helped me even a little was taking Immodium...but I took tons of it. That was before I was diagnosed and didn't know what was wrong with me. It was a scary time...but the immodium did help. I was taking 3 or 4 tablets at a time and taking them probably every 4-6 hours.

By the time I was diagnosed, I already had a fistula and a blockage, so a resection happened within 6 months of being diagnosed. I wish I had some answers for you....just wanted you to know that I don't regret having the surgery. My quality of life is sooooo much better now. I can play with my kids again and go places. I still have really bad days where I get really tired and I have been on prednisone for over a year, so things are not perfect. But they are better. I hope that you find your answers!

Hugs
Mindy
 
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arbob5 responded:
I was dx with UC in Nov. of 2008. I know where you're coming from...I was afraid to leave the house because I never knew when I would need a bathroom quickly! That went on for about a year or more, and then my doc introduced me to Lialda. That helped tremendously. Also, prednisone. I'm tapering that now, down really low, and so far so good. Also, I think what really helped me turn the corner was probiotics. I am on Dr. Swanson's Ultimate Formula Probiotics and I swear by them. I know they don't help some people, but they certainly have made the difference for me, along with the Lialda. It certainly wouldn't hurt for you to try them. Go to swansonsvitamins.com to order them. Money back guarantee if they don't work for you. Also, if you prefer, you could try Align probiotics, which are available at Wal Mart or wherever you shop. They only helped me a little, but then again, they do help a lot of other people quite a bit. They are more expensive than Dr. Swanson's tho.

This is just a tip for you to try. I was hesitant at first, but I've been in remission for a few months and it feels wonderful. I know that could turn around at any time, but for now, I'm thoroughly enjoying my "freedom".

Keep us informed. We really do care on this site.
 
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mattdamonishot replied to arbob5's response:
You are definitely not alone. I have accidents at least once or twice a week. I am on depends all the time now so that eases my stress a little bit. I am finally tapering my Presnidone now and am on Remicade and it seems to be working for me. except the urgency but again i can live with it as long as I am wearign depends. Hopefully once I am in remission I won't have to wear them anymore.

Keep us posted and know you are not alone!!!!!
 
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miserable_sob responded:
Long ago I was somewhat in the same shoes you were. Except my condition sucked so much, a lot of my time was spent in the hospital and I injected Cortisone after Prednisone and all other worthless drugs failed. I would have tried something more desperate than aka an alternative that MD's don't want to screw with. The internet wasn't around then, so I wasn't aware of what I know now http://www.medicinenet.com/script/main/art.asp?articlekey=122870 Now I'm stuck with a J Pouch for the rest of my life and only wish I was dead now.
 
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wnivsh responded:
Still figuring this out and not sure if I'm replying right, but I appreciate all the help. The immodium was something that I've used for trips, but I was under the impression that it wasn't a good thing to take that often? Did you have any problems with the long term?

I guess I've been really lucky. I've never had any pain and I've never had to go to the hospital. Just had to deal with the side effects of the drugs and the urgency. It sounds like there are whole lots out there that have it much worse. Makes me feel a little bad for asking for help, but I think an exchange of information is good for everyone.

Thanks everyone for responding...one last quick question. I've been on pretty high doses of prednisone for about 6 years and none of my doctors have been sure about the long term effects of this drug. Does anyone know if there is?
 
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arbob5 replied to wnivsh's response:
When you have your prescription filled, do you get a sheet of information from your pharmacist, which lists possible side effects?

Prednisone can cause a lot of side effects, but everyone is different. I've been on it for years, and I am one of the lucky one. Other than hot flashes, and sometimes I am very fidgity and have trouble sleeping, that's about it. But, I also know that it can cause many, many other side effects. If you didn't get an info sheet with your prescription, talk to your Dr. or talk to your pharmacist. They will answer your questions about side effects.
 
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miserable_sob replied to wnivsh's response:
I've used Immodium for over 20 years now. I have to be careful of it now that I have a J Pouch. If you have Colitis, you should be careful of it too. I believe it can lead to dehydration. It happened to me last Summer. Mind you that was Summer, I did some vigorous exercise before I took it that day, and went on a long road trip after that. When I got back I was dehydrated. That happened to be my 3rd case of dehydration since I got my J Pouch. I was never dehydrated once in my life, before I received my J Pouch.

Since it happened over 20 years ago, I can't remember if it was pain or just unstoppable diarrhea that lead to my hospital trips. My Ulcerative Colitis just got out of control and shrunk me down to 80 pounds once. I'm at 121 today and on the skinny side, thus 80 was pretty close to death at the time.

I wasn't on Prednisone for too long. It never helped me. Since it is a steroid though, I wouldn't be surprised if long term use does have its consequences.
 
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wnivsh replied to arbob5's response:
I'm definitely well aware of the side effects. Sleep problems, it affects my wind (i.e. breathing), I'm tired all the time...it's the long term effects I'm worried about. My last two doctors have said they didn't believe there would be any long term effects however I just don't buy it. It's too intense a drug for there not to be something. Just wondering if anyone got different info from their doctors.
 
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sheba_q replied to wnivsh's response:
I don't know why any doctor would say there aren't any long term side effects. Pred is known for messing with a persons bones, leading to osteoporosis. If you haven't already I'd suggest starting a Cal/Mag supplement.
 
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larsstarscanary responded:
I've had UC for all of my life--I'm past my prime. "Recently" I had diarrhea for four years (2006, 2007, 2008, 2009), until I discovered Lee Swanson Signature Line Ultimate Probiotic Formula. It worked for me as well as the prednisone or even better, because it stopped the diarrhea and without the awful side effects of prednisone.

I've been in remission since Thanksgiving 2009--I started taking the Lee Swanson Signature Line Ultimate Probiotic Formula the Monday before that Thanksgiving 2009. I will always take this probiotic formula--It works for me. I do have to add, though, that I continue to take Apriso.

(As far as I know, Lee Swanson is not a doctor.)
 
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arbob5 replied to larsstarscanary's response:
I totally agree that Swansons probiotics are wonderful. They certainly have helped me tremendously, and as larsstar shared, I will also continue to take them for the rest of my life.

But there are some who do not get the benefits from probiotics. Why they don't is another puzzling thing about UC and other digestive disorders. But that's true with so many difference medications.

I say give them a try. You get a money back guarantee if they don't help you, so you have nothing to lose, and everything to gain.

Keep us up to date on how you're doing, OK. We all care on this site.
 
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darkntall replied to arbob5's response:
wnivsh , Im another Crohnie who has been taking the Swanson's Ultimate Probiotics formula and other Swanson's supplements with some VERY good success! So much so that my latest blood work from my gastro came back so well that he said that I dont have to come back in for a check up till next year. And Im only taking half of my Pentasa while taking my Swanson's supplements! I will NEVER be without my Swanson probiotic formula though! Thats the cornerstone for me supplement for me! I can eat things that i usually couldnt eat since Ive been taking them. And to top it off, those Swanson's supplements have my blood pressure, cholesterol, LDL, HDL, and blood sugar readings looking so well! I also watch what i eat though and I exercise at least 2 times per week.
 
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jrosollo replied to arbob5's response:
hello! i found your response very interesting and I'm very excited to learn about these probiotics. is there any way you can tell me exactly the kind to purchase. because i went on the site and there are all kinds so i need some help please on which one i should. and i hope this is able to help me and im pretty excited to try it. I am also on the Lialda and started doing it consistently and take 4 a day. and noticed very little to no blood now. probably bleeding once a week now. and just trying to find something else to help me. thankyou so much for being so helpful and i hope you can tell me what kind to purchase. thanks
 
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An_253493 replied to jrosollo's response:
how many probiotics are you taking daily?


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