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Ulcerative Colitis
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Posted 3/10/2011 9:05 PM (GMT 0)
New here so please be patient with me wink   I was diagnosed last August with UC, more so on the left side.  Was put on Asacol (2 400mg) four times a day and it was wonderful after getting past the first week of feeling sick and headaches.  Gradually decreased the dosage down to 2 pills a day and then about 1 1/2 weeks ago started flaring with the stomach cramps and D.  I have increased the dosage back up to 6 a day.  I still have some stomach cramps but not alot of D, mostly regular.  I still go to the bathroom alot.  I have lost 40 lbs in about 8 months and can't seem to gain any weight.  (Imagine that)

Does anyone else have this problem with weight loss and have you found anything that helps?  High Fiber Diet, High Protein ???  It gets somewhat depressing ~

Posted 3/10/2011 9:18 PM (GMT 0)
I am sorry you're feeling down. When your colitis is active, it is very hard to keep weight on. I lost 20 pounds when I was flaring up badly but now I need to lose a few pounds, I would be thankful to be a bit thinner. I know you always want what you can't have so I just hope I can lose a few by eating healthy and exercise.

My advice to you would be to get in touch with your GI and let him/her know your symptoms. You may need to take a higher dose of Asacol or try some rectal meds to get it completely under control. When it is controlled, you should be able to keep the weight on.
Posted 3/10/2011 9:30 PM (GMT 0)
Thanks so much for your response.  It seems like no matter what I eat, it just doesn't stay with me very long..  My family is starting to constantly ask what I've had to eat.  I think part of my problem is that I've trained myself to only eat about 1/2 of what I used to because of the fear of what would happen afterward confused   After reading some other posts of what other people were taking dosage wise, it seems like I might not be taking enough...  I do get alittle depressed about it as I've never taken any medication before and I'm 46 years old.  Could be alot worse I guess.  Thanks again and take care!!
Posted 3/10/2011 10:15 PM (GMT 0)
Hi and welcome! I'm sorry for your problems.

You have a good point - to me, that seems like a very small dose of Asacol. I've been taking 16 of them a day for about 9 years now. That's a HUGE dose, I know, but... just for a point of comparison. (My son takes 8 per day.)

I think, when first diagnosed, it's hard to get one's head around the idea of taking pills. I don't think about it anymore. I figure, there's something chemically imbalanced in me, and the pills correct that. (That's my mental image, anyway.) There are bound to be medications in my life, so ... I just don't let it get to me.

My son had that issue about taking the pills when he was diagnosed (at age 13) and.... I think he's gotten over it by now. Asacol is one of the safest meds one can take for UC, (except for those that have allergies or sensitivities) so...I'm glad I can take it.

I would encourage you to call your GI and ask about increasing the dose; your comment about food "not staying with you very long" sounds as if you have some inflammation in there, and if you can help get rid of that, you'll be able to take in more food with less worry.

When you call your GI, you might want to ask about Rowasa retention enemas.... they are very effective for many people.

Again, welcome!
Posted 3/11/2011 1:08 AM (GMT 0)
janeen, I do the same thing when I am flaring. I avoid eating because I am scared of the repercussions. I hope you can get it under control quickly so you can keep weight on and begin to feel better. I hate taking pills too, but in my case, it's better than the alternative.
Posted 3/11/2011 2:02 AM (GMT 0)
Janeen, two pills a day is so minuscule and six is for maintaining remission, not getting there. Good luck on attaining remission
Posted 3/11/2011 3:00 AM (GMT 0)
I definitely think you need to be on a higher dose of Asacol and add in rectal meds. Once you get into remission, stay at a higher dose of Asacol and keep using the enemas. Studies show that people who use enemas twice weekly in addition to oral meds stay in remission longer than those who only use oral meds. I had a severe pancolitis flare and I've been in remission for almost two years, and I give a lot of credit to rectal meds for that.
Posted 3/11/2011 2:12 PM (GMT 0)
Thank you all for your responses.. I really appreciate it :)  I am calling today to increase my dosage back up to 8 a day and ask about the enemas.  I'm tired of getting up several times a night :(  Another question I have for you is, have you guys tried Probiotics and if so, did it work for you?  Thanks so much and have a wonderful day ~
Posted 3/11/2011 2:22 PM (GMT 0)
Probiotics work very well for me, but they don't work for everyone. I take VSL#3 DS (prescription strength, and my insurance helps pay for it) and helps me a lot. If you do a search in the upper right hand corner, for VSL or for Probiotics, you'll find lots of discussions about this topic! Also check out - there are a few articles in the sticky thread at the top of the forum.

I hope increasing the Asacol and adding the Rowasa really helps and you can get a good night's sleep soon!
Posted 3/11/2011 3:28 PM (GMT 0)
If it's left sided UC, you may also want to ask your GI about Colazal (or its generic form).

I was on Asacol for years, and recently switched to Colazal. I usually have a prolonged flare during the winter months, but have been symptom-free on Colazal this year.

Eph
Posted 3/12/2011 3:20 AM (GMT 0)
I as well am new to this. I was diagnosed with UC in Jan. I am taking Asacol, 12 400mg pills a day. I don't have insurance so the care I recieve is not so great. I haven't been explained too much of anything. I was just told I "need" to be taking this much medicine to stay in remission. I just read the side effects and saw that Asacol can cause renal failure. I wasn't notified of this and am now considering stopping the medicine... Anyone know any more information before I make an irrational decision!? I have two small babies and know that when I was sick, I wasn't able to do much for them. So, the thought of stopping the medicine just to get sick again, worries me. However, dying worries me even more.
I am still taking predisone at this point. I will be done with it on Monday. I have gained about 35 lbs since Dec 28. I am hoping that will go down and wondering if Asacol has made anyone retain water? My Dr. says the Asacol won't do this, it's just the steroid, but I've read that edema is a side effect of Asacol...?
Also, since I've been taking Asacol I have been losing a tremendous amount of hair! Anyone else have this problem?
I'd appreciate ANY feedback! Need all the info I can get.
Posted 3/12/2011 4:31 AM (GMT 0)
Wandajl, Hi & Welcome :)

I didn't gain weight from Asacol but I did gain from prednsione. I also lost hair for a while but eventually the hair loss stopped and now I don't lose much.

I am not sure about renal failure. I don't know if it is common but I don't see people on this board dealing with it. Maybe someone will chime in with more info. I think when you're off prednione and in a stable remission you will probably be able to reduce the dose of Asacol to 6 a day. They say if you stay on it, you have lower chance of having another flare up. I am not sure if there are strong facts to support this.
Posted 3/12/2011 7:25 AM (GMT 0)
Wandajl.welcome!

Some people cannot take 5ASA meds and renal failure is the consequence. It's not high on the list of side effects for everyone...but few have had it happen.

My plan is to avoid prednisone forever...so oral Asacol and rectal Salofalk has been what's kept my UC flares treated and maintained during remission.

Don't blame the Asacol for your hairloss...it's the pred and flare.

quincy
Posted 3/12/2011 3:48 PM (GMT 0)
Welcome ~ it is scary with all the side effects.  I am so glad that I found this website, everyone is so helpful and it is easier to talk about things with those that have the same problems.  I am back to taking 8 pills a day (Asacol) and I am not going to reduce it anytime soon.  I have not had hair loss at all or weight gain so I suppose it is affects people differently.  Asacol is the only thing I take.  Am thinking about trying Probiotics.  Hope things getter better for you :)  Take care of yourself ~
Posted 3/12/2011 3:58 PM (GMT 0)
Prednisone caused me crazy hair loss, swelling and weight gain. Mesalamines have not.
Posted 3/14/2011 7:31 PM (GMT 0)
i also take asacol but i take the hd. i have really done well with it but i do not eat anything raw at all. well, i lie about ever 4-5 weeks i have a awesome salad and enjoy every bite. i also take a vitamin d and feel it is really the best thing that ever happen to me. you need to see if you are vitamin d low most of us are but no one tells you to have a blood test to see. also you need to get off the fiber....these changes take a couple of weeks to notice but really have helped me.
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