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Ulcerative Colitis
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Posted 4/24/2008 12:58 AM (GMT 0)
I am new to this site and I find it very helpful.  My husband was diagnosed over a year ago and he has been in a flare since that time.  He is only "normal" when on prednisone.  They will not put him back on it.  He is taking 100 mg 6mp, Asacal 4 twice a day, and chlordiazepoxide 2x a day. He is going to the bathroom about 6 to 10 times a day w/blood. Nothing is working.  Is this normal or should we think about seeing someone else?
Posted 4/24/2008 1:16 AM (GMT 0)
Is that his full dose of 6mp? Or is he still in the initial 2 weeks? It takes a while for that stuff wo kick in.

There is also an alternate to 6MP called Imuran. It might be worth looking into that maybe?
Posted 4/24/2008 1:24 AM (GMT 0)
yes that is his full dose. He started out at 50 for over a month, and then it was upped
Posted 4/24/2008 1:33 AM (GMT 0)
I take 12 Asacol a day
Posted 4/24/2008 1:34 AM (GMT 0)
Sounds like its not working. Imuran is a little different because the liver is what converts the compound into 6MP. Its a different process, but it seems to work when direct 6MP dosent. I tried both of these recently and they both gave me pancreatitis, so I'm not able to tolerate them. If Imuran dosen't work, I'm pretty sure that Remicade is the next step.

Has he tried working on his diet at all?
Posted 4/24/2008 1:39 AM (GMT 0)
The problem with that is I asked the doc about his diet and should he be changing his diet and he said no diet wont help. I would like to know what he should or shouldnt eat. He eats what ever he wants because the doc told him he could. He did tell him caffeen was not good for him to have. That was about it.
Posted 4/24/2008 2:30 AM (GMT 0)
my GI also told me I can eat whatever I want. I can eat just about anything, although I am picky....I have 3 cups of tea a day and as my husband knows "don't mess with my caffeine" I definitely need those 3 cups. When my UC is bothering me, there is really no consistency as to what food could have caused it. I think it's just the fact that I've consumed any food PERIOD........When I was flaring though, my GI said that I should stay away from uncooked fruits and vegetables, just while flaring because it could be rough on the colon, I wasn't real good about that and I still didn't really notice a difference. I've kept a food diary before and it was just so inconclusive. I could have spaghetti sauce maybe 10 times, possibly 3 of the times it would bother me. Does that mean I shouldn't eat it anymore? I really didn't find any certain foods that bothered me all the time. I don't eat spicy food because I don't like the taste, so don't know if that would have bothered me. This disease is so unspecific. No two people react the same way with it.......It's pretty hard to figure out. But if someone finds something that works for them, I think that's great and that's the way for them to go. Doesn't mean it's going to work for others...................
Posted 4/24/2008 2:56 AM (GMT 0)

Welcome to HealingWell, Waterdog. I'm sorry your husband is having such a difficult time right now.

Food makes a difference when in a flare, because some foods are just naturally more irritating to the colon. Most of us avoid high fiber, gas-forming, fatty and spicy foods when in flare. Some people are bothered by caffeine, dairy or gluten-containing foods while others are not. There's no scientific evidence that food causes or eases flares, but some people do find that it has an effect for them. We each have to figure out what works for us. Those with UC do have higher incidence of lactose and gluten intolerance, so avoid dairy and gluten-containing foods all the time.

You might try keeping a diet diary for a while. If you start seeing that every time he eats a certain thing he gets worse, then he can think about whether he wants to eliminate that from his diet.

And his doctor is exactly right that Prednisone is not appropriate for long-term use. It can have some horrendous side effects long-term - osteoporosis, necrosis of bone in certain joints, cataracts, diabetes, and more. Talk to his doctor about increasing his medication. Also it may help to get him on Rowasa, which is mesalamine in enema form. I believe that's also a fairly low dose of 6-MP.

If you don't feel confidence in the GI who is treating him, than a second opinion is certainly in order.

Posted 4/24/2008 3:12 AM (GMT 0)
He has prescribed the enemas, but my husband says they are to painful. He said they burn to bad. Does the enemas make a big difference in improving your bm problems? He is very private and only myself and my parents even know he has UC. He does not want any one to know, which I find is a problem when you have to make excuses for not going or doing certain things.
Posted 4/24/2008 11:36 AM (GMT 0)
6mp can take from 3 months to a year before an improvement is seen, exactly how long has he been on it? If the enema burns, has he been checked to rule out a fissure or a hemmie?
Posted 4/24/2008 10:19 PM (GMT 0)
Wow, thats a long time to have to wait if it doesnt work. He has been on it since January. He is going for a scope tomorrow, will that show if he has a fissure or hemmie? By the way what are they?
He is not doing well. He is in a major flare at the moment and the prep is terrible for him. At least he is not bleeding this afternoon. He has been bleeding for about 2 weeks now since he has been of the prednisone for that long.
Posted 4/25/2008 11:27 AM (GMT 0)
Yes, it's a long time to wait but it takes a while to adjust the dosage. I started seeing results in about 7 weeks but I didn't actually get the full benefit until I was on it and the dose adjusted to 100mgs about 6 months later. I take the 100mgs on Mon and Thurs and 50mgs rest of the days.

The doc will be able to see a fissure or hemmie right away since they are right in the rectum. A fissure is like a split in the tissue of the rectal walls - maybe higher, I'm not sure. Good luck to your hubby on his scope. Please let us know the outcome ok?
Posted 4/25/2008 4:20 PM (GMT 0)
I guess we have good new and bad news. His scope showed that it had not moved any further into his colon. The bad news is that he was told the meds dont seem to be working and that he is much more swollen and irritated and more ulcers than before. He did some test to see about upping his 6mp and he put him back on the prednisone. He said he was dependent on it but that he needs it. The nurses just kept telling him how bad they felt for him. I asked about taking him off of his asacal since it wasnt working and he said he would decrease it to 4 a day. He said he needed to stay on it for purposes of fighting off cancer later on. He did mention remicade again today. I told him our insurance does not cover, he said he would work with them on that.
Posted 4/25/2008 7:05 PM (GMT 0)
I was told by my doctor to switch to Pentasa from Asacol. I was taking a total of 6 pills a day and then I switched to 4g of Pentasa a day. That was not helping and then I got put on 6mp. It helped a little bit but nothing dramtically changed until I was put on Canasa. I was fed up with not knowing if my stool would be solid, bloody, or with mucus so I told my doctor to do something. I went on Canasa and everything started to work for me. Ask your doctor for what he/she thinks about treating from both ends.

good luck
Posted 4/25/2008 10:58 PM (GMT 0)
What is canasa?
Posted 4/27/2008 6:34 PM (GMT 0)
I believe Canasa is a suppository...............
Posted 4/27/2008 8:35 PM (GMT 0)
Canasa is a mesalamine suppository. Rowasa is a mesalamine enema. Asacol and Lialda are oral mesalamine. All the same drug, delivered differently.

Some of us who have not done well on Asacol have improved on Colazal, a different oral 5-ASA.
Posted 4/28/2008 4:03 AM (GMT 0)
The rectal meds (Rowasa enemas, Canasa suppositories, Cortifoam, a steroid foam enema) really do help lots of us. The Rowasa helped me stop bleeding and have less bowel movements. They can be uncomfortable to hold in, especially the first few times you use them, but it becomes easier for most of us as we begin to heal. I find Canasa easier to use...it's a lot easier to keep in. There are other 5-ASA meds your husband can try besides Asacol, such as Colazal, Pentasa, Lialda and sulfasalazine. Some have better luck when they switch to another one, or up their dosage. You can take up to 12 Asacol a day.
Posted 4/28/2008 4:48 PM (GMT 0)
Not that it will probably stop his flare but he should be on a good probiotic if he isn't already. They really are a big help in getting the gut flora in better balance and promoting overall better intestinal health. He will need to continue to take the probiotic as a supplement for it to keep working. I recommend Super Acidophilus at GNC or Garden of Life brand as those two i've tried and have had success with.
Posted 4/29/2008 12:05 AM (GMT 0)
Thanks guys. He has been on a probiotic, but only one a day. Since I started reading this site I saw were you up it when in a flare, so now he is taking 3 a day. He has tried pentasa (fetal position every time he tried to take it) Lialda highly allergic. He has not been put on the Colazal before. I will talk with his doc. Its so amazing how many different drugs you can take and how almost everyone person reacts differently to them. This disease is such a mystery.
Posted 4/29/2008 1:23 PM (GMT 0)
Hi Waterdog.. I was in the same situation as ur husband last year. I have had 2 colonoscopy. Did ur husband have any colonoscopy. I am having this problem for 2 years but thank goodness in a kind of remission for 5 months. You have come to the right place. I was kind of very stressed last year. Only then I started reaing in this forum and learnt many things. Then the fear went off. Ask ur husband also to read. Because when he reads himself that will give lot of confidence.

Initially I was prescribed with canasa b4 2 years. The blood stopped after 4 months and then I stopped using it. Then I flared up again in 3 months and it became completely worse. The mantra of UC is never stop taking medicines when u come to remission. My doc asked me avoid all milk and milk products. So I am only taking lactaid milk. No butter, cheese, milk, yogurt etc. and I stopped taking coffee. We stopped going to restaurant for the time being. Ask him to be strict on his diet. Also I made an excel sheet keeping track of all my diet, eating out, no. of stool, consistency etc. Pen down to minute details. I did this for an year. With those information I was easily able to find out which are food that is making me more worse. He will be back to remission soon.
Posted 4/30/2008 9:30 PM (GMT 0)
Yes he did have a colonoscopy. I am going to talk to his doc about the enemas. I hope they work. Thanks guys
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