New to UC...trying to remain positive

I guess I would ask the GI why s/he recommends Imuran over asacol. The oral meds plus rectal mesalamine is the safest and simplest way to treat UC. Since you are tolerating the Asacol right now I don't understand why your DR wants you to use something else. Do you?

welcome to the forum :)

I second Gary's question.

And: why does your doc want to put you on imuran. That sounds absurd to me since you are tolerating the asacol and the pred. Although reading your post again you do mention stomach cramps still even on pred. So that could be it. Be careful of the turrmeric and green tea extract while they can be very helpful they can make you lose weight. So if you are skinny you should watch out. Try them though coz everyone reacts to these things differently.

Good luck, and keep us posted

Your story is very similar to mine with the UC rearing its ugly head following our wedding.

If i were you id ask a little about the pred taper.  To me it sounds like he might be looking at tapering you a little fast.  I was on 40mg for a week and reduced 5mg each week taking more than two months ( i didnt have the pain your experiencing though)

It could also be worth asking about rectal meds, if you havent already.

These may help when you taper off the pred and really ask more about why he's looking at the Imuran before trying rectal meds. 

My GI was going to look at this if none of the other meds worked and it really freaked me out because we were looking to start a family ASAP.  Thankfully the combination of both rectal and oral meds is working.  It did take time though and the enemas arent pleasant but once the inflamation reduces they are easier to hold and in my opinion worth it.

Try and keep positive and dont be affraid to question your GI and/or get a second opinion - The more info you have the better.

all the best

Post Edited (Labyrinth) : 12/5/2012 1:47:44 AM (GMT-7)

I don't understand why your doc wants to put you on Imuran when you haven't even "had a chance" to fail Asacol, so to speak.

I would, however, add mesalamine enemas, as there's a better chance you'll reach and stay in remission if you're using them.

Thank you for all the replies!! I love having other opinions! Especially because I DO NOT like being on so many meds. I am willing to do what needs to be done but I am always concerned about being over prescribed meds by doctors.

First off, I am on Asacol but I had to ask to be changed to something else. One month of Asacol cost me over $500 and that just is not in my budget. So as soon as I run out of the Asacol he will have me on Lialda (which is $60 a month in comparison for me).

I have been trying to research as much as possible as I can about the disease and asking my GI as many questions as possible. The Imuran surprised me, especially as it is a immune suppressant. I am curious if it will help my severe allergies though while I am on it. My body also grows polyps/fungus in my nasal cavities because I am so stinking allergic to everything outside. I have had 2 surgeries for that business in the past. My GI assured me I would be ok on it and that it is the prednisone that is more apt to having me catch everything. I believe he planned on telling me to take Imuran BEFORE I told him about still having stomach cramps. I will without a doubt be questioning him on this the next time we meet.

He told me that Imuran would end up being my "long term drug," for at "least the next 2 years." I assume that means I will taper off of Asacol/Lialda. I go back for more bloodwork for the Imuran on the 26th of this month. I will ask about enemas then. He has yet to mention them.

I will say I never feel like he rushes me out of the room and he will listen to me. But he is a big meds guy and hasn't mentioned change of diet or any natural changes I can take.

My mom is on Iflora probiotics, Zoloft, Source Naturals Turmeric 1000, Colostrum, Fiber supplement (she just throws it in her daily coffee), Vitafusion Multivitamin, and then depending she will throw other stuff in there (vitamin C, ect). She also takes Vitafusion's Melatonin but that isn't for her stomach.

That's all I can remember that she takes. I know sometimes she take Olive Leaf and Sibu Beauty Cellular Support as well but I am not sure if she does both daily.

Her main change was the Zoloft though. Without a doubt. She has always taken natural supplements. The Zoloft is what "fixed her." She has not altered her diet in any way since her remission.

Labrynth - I'm glad you understand! It's a rough way to begin a marriage. We aren't looking to start a family for at least a few more years but it also scared me knowing that if an accident were to happen I would be on so many pills.

Conquer UC - I am hoping the Green Tea helps with the weight gain. :) Really I want help with the bloat. I can count calories and deal with the cravings but the bloat is just so uncomfortable. I am normally a lean girl naturally (I eat healthy for the most part), and the Prednisone has me very self conscious of my belly and my feet. Plus moody. Moody and feeling fat is just the pits. I will say today the Green Tea made my stomach a little eh. So I might be switching it for cranberry capsules instead. I'll give it another day or two to decide. I've never felt so in tune with my gut.

journey2health - I feel like this doc is a little med happy. I did read somewhere that a longer taper for prednisone is sometimes better to cut out inflammation early to really send you into remission for a long time then change leaving inflammation. No idea if that's true but it is the only reason I am still taking the full 40mg of the Prednisone. As far as the Imuran...I need to keep researching that pill. Normally I question everything and I was really just thrown off when he brought it up. All I could think was...ug. Another pill.

My taper is as follows:

40mg for 4 weeks
30mg for 2 weeks
25mg for 2 weeks
15mg for 2 weeks
then I'll move down in 5mg increments.

That should be right. I don't have my paperwork right beside me but I know the whole thing will take 3 months.

Thank you again for all the replies! Ya'll have me questioning things! I want that. This is my body still and maybe it sucks at times but I still like feeling like I have control.

Welcome to the forum KTQ, and you too georgiapeach.

Yea, UC sucks. I'm sorry you are feeling so bad, and so overwhelmed.

But you have to find what works for you.

Ask your doc plenty of questions, although based on his comments about your getting "bigger" clothes, I'm not sure he has the empathy needed?

You should just know that different things and meds work for different people.

The traditional meds, including prednisone failed me, and when my GI gave me a choice of remicade or surgery, I balked at both and had to find my own way.  For me that was a combination of certain supplements like probiotics, slippery elm powder, L-glutamine, diet modification, and a little known medication called LDN, low dose naltrexone, which is inexpensive, has virtually no side effects, and most doctors won't prescribe ( but well worthwhile if you go around the system to get it) even though it has a proven track record of putting UC and Crohns patients into remission.

I would urge you to look into every alternative.

There are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

 

I really think I'd look into finding a new GI. It seems completely irresponsible for him to be pushing you towards Imuran already. It has much more serious potential side effects than mesalamine-based drugs (Asacol, Apriso, Lialda) and there's no way to yet know if you are going to be able to manage your UC with only mesalamine. I was in a pretty horrible flare when I was diagnosed and have been in an extremely solid remission for 3.5 years now only on mesalamine.

But I still encourage you to ask about mesalamine enemas.

Hi all I've just been reading all your comments and I decided to join, I have been diagnosed with UC since September 1996 and up until 2 years ago I had tiny flare-ups but nothing bad I was basically in remission, then 2 yrs ago I had an operation and they gave me ultra strong antibiotics and I haven't been right since. I try to keep positive but it is hard sometimes and today I walked into a health food store and met this lovely woman serving there she asked whether there was a reason I was enquiring about probiotics so I told her and she said I've got that I've probably had it since I was in school (she was 57) she said that milk and diary did not agree with her, that she's gone gluten free and no longer eats read meat and takes probiotics every day.

I agreed as this is what I am trying to do now I've read lots of books on raw food diets and fruit diets and have decided that for my quatity of life I have top try everything. So even though the doctors say there is no connection between what you eat and UC I don't believe thats true, if I have a mouthful of milk then I know whats caused the symptoms the next day.

The doctors have almost given up now as my meds seem to have stopped being as affective and they have been talking about surgery but I don't want that.

So I'm going to change my diet and see if that works.

This forum has been great!

I am going to be questioning my doctor a lot on my upcoming visit on the 26th. It seems like their are varying opinions online about the length of time I am on prednisone and also about the Imuran. After that visit I will decide on finding a second opinion.

I am on 50mg of Imuran right now and can't feel any side effects yet. But, I agree that this feels like overkill to me.

I do have good news! With watching my diet AND starting workouts this week, I have not gained any weight and have maintained/lost almost a pound. As a vain woman, this makes me feel great. For one, it is nice to FEEL like I am in control. Not the doctor, not the meds, but me. Screw my docotr and his "buy bigger pants" comment. Prednisone has made me feel a little achy (plus getting a Charlie Horse the other night..ouch) so I am upping my potassium and making sure I get plenty of calcium. I also feel like I am dying during my workouts (only 15 minutes long but it is better than nothing). But I FEEL better. My husband is absolutely sick to death of me talking about sodium and carb content in food though. haha

Question, I am now a little constipated. I go once a day but it is not an enjoyable experience. I figure it is a side effect of a pill I am on but I have NO idea what pill it would be. Asacol, prednisone, Imuran?? I take the 50 billion probiotic twice a day. Plus the Green tree extract (which has helped with the bloat). I have been eating 3-4 servings of fruit a day (mainly apples, bananas, grapes and pears) and drinking probably 70 ounces of water a day. I am thinking of adding Benefiber to my diet and seeing how that goes.

With the Prednisone I have been able to eat pretty much anything. But I have been very careful regardless. I am sticking with turkey and chicken for my meat. I am eating dairy but not in large quantities. I keep my sugar low as that seems to cause some problems. I also have avoided caffeine. I am going to try steak today...We will see how that goes. :)

Sleep is still very difficult, even with the Xanax the doctor gave me. In fact, I feel like the Melatonin I take works better. I have to take 2 Xanax (.50mg) plus 3mg of Melatonin to sleep all night. The other night I woke up at 4 am and took 3mg more of Melatonin and that helped after about an hour. During the work week, I am pretty much SOL though.

Ktqt, if you are in a flare, constipation can be a sign that your rectum is inflamed. It holds back and makes it difficult to go and it's uncomfortable, feels very strained, then its painful when the stool is moving through, then you get relief after it moves through.

Is this what's happening? Rectal meds often address this issue.