Going against Doc's orders

Hi all,

Looking for advice. I currently take Lialda - 4 pills a day.

At the beginning of the summer, my husband and I were traveling quite a bit and the stress that my body felt from the planes, long drives, altered eating schedules, time zones, and lack of bathroom access (trying to keep calm to not go into a panic and have urgency) was becoming unbearable (for BOTH of us). Unfortunately, right before we left for the first trip, I had a BIG accident =( Fortunately, my husband and I handled it together and he was a sweetie so I wasn't embarrassed in front of any one else, but it really shook me up. I had thought up to that point that as urgent as my urgency was, I could make it to bathrooms in time.

Once on our travels, I began having terrible nausea. I even wondered if I had become pregnant (no). Husband and I both wanted better quality of life. We had been very disappointed in my current GA so we went to a new one. This one was a wonderful listener, and a compassionate, gentle DR. I felt compelled to follow his orders. He understood that I didn't want to do Prednisone at ALL, or Remicade, and told me about Imuran. He ordered the test for Imuran, but when he found out I hadn't tried the Pred yet - he said he really must have me at least try it before giving me a more serious drug like Imuran. I thought that was logical and he put me on a 6 week Pred taper.

Well, I filled the script but I have yet to take it. I put off taking it for a week because didn't want to start while on my menstrual cycle, then put if off because didn't want to start while we were on a driving trip, then began to feel better (not remission - just better) and now have gotten myself too worked up about it to take it. I really don't want the side effects or a fake remission... I've read so many bad things about the drug.

I was supposed to follow up with dr. after doing the drug, but haven't yet since I haven't taken it. I keep thinking I might still take it, but right now I'm managing much better than the beginning of the summer (having a routine and a quiet morning makes a world of difference to me).

Should I still follow through on the pred or is it wise to stay away from it while I'm doing better? Advice? My husband just wants me better so he is pushing me to try the pred. I don't know that he understands that it's not a permanent fix from what I've read.

A concern for me is husband and I will want to try to get pregnant in about a year, give or take a few months. Both GA and GP say the best thing I can do for a future baby is get better... in that case, I wonder if being "kind of better" is not good enough and I need to take the pred?

Very confusing and difficult figuring out this UC. I want to be drug free but it hardly seems like an option. The only thing that truly makes me feel well is NO FOOD! And that freaks my husband out even more b/c I am an eating disorder recover-ee (I used to think that that was what caused the UC, but all the dr's say that's impossible... ).

Looking for advice b/c husband has his opinion, friends don't know anything about UC-life, and the DR will prob. not be happy with me....!

Thanks

Short term pred use is fairly safe for most people. It is one of the mainstays of U.C. treatment, although most of us do hate the side effects. It can be extremely effective though, especially if you haven't overused steroids, or in your case you have never used them.

Have you tried rowasa enemas? Doing them overnight can really help, even if you have pancolitis.

I second the enemas of imgardner Don't ever feel pressured by your doctors - you pay them to work for you. It is ultimately up to you. I would never go on prednisone again because I have osteopenia from it, but short term use may not be terrible.

Before I took pred for the first time I had the same fears has you have expressed. I managed to avoid the drug for years but after the birth of my first son I had a terrible postpartum flare. I was not at liberty to up the dose of some of my other meds as I was nursing and the research was cautionary about higher doses of mesalamine. I decided I felt more comfortable taking pred as there was alot of research about its relative safety for nursing infants (I also contacted Dr Thomas Hale, expert on medications and breastfeeding). I went on a very short taper....starting at 40 for 7 days and moving to 20 for 7 and then off. It worked exceptionally well for me. I went into full remission for over a year and a half, my longest remission to date. I flared again after the birth of my second son and again I used the same short, fast taper as before. I am still currently in remission and my second baby will turn one in a few weeks.

My tapers were fast enough that I never experienced any side effects from pred and so far it still works well for me. Fearing that it could stop working at some point I asked for others experiences on this forum when I first took it and got mixed reviews. However, there were several people for whom pred had worked to induce periodic remission for ten years plus. Pred is a powerful drug that can be both terrible and amazing. For me it is still amazing and I will not hesitate to use it in the future if I need it (however, I will try other things before I resort to pred so as to not inadvertently reduce my sensitivity to it). You will have to try it to see how it will effect you - I would say be cautious but not dismissive. Good luck jo

Hi all - I don't get on the forum often, so forgive me for taking so long to respond. I have never tried any enemas... I'm not even sure what they are or how they work, but I'm sure I can find out with some research. How exactly do they help?

Joma- that's encouraging! For me, the Dr. prescribed 7 days at 40, 7 days at 20, but it lasts 6 weeks going down each week. Did you really just stop after 2 weeks? I didn't know that was possible. I thought everyone had to come off verrry slowly. ?

I am interested in diet modification ... I will look into the diet, which I've heard referenced on this forum. I have been really hesitant about diets b/c of my past with ED. I try to eat very balanced, but since the UC has gotten bad, I have taken out a lot of the raw veggies and fruits (eat them much more sparingly) and the whole wheat except for rare occasions. I think that has been helpful... I'm just a little scared about no-carbs as that sounds very much like an extreme diet to me.

The only thing that truly makes me feel well is NO FOOD!

It probably isn't all food that gives you problems. And I agree with you that a comprehensive diet is a lot of work so maybe start out with something simple. Many people are sensitive to gluten. Just avoid wheat, rye, and barley for a week or two and see if there is any improvement. Problems with gluten are very common.

If this does not work you can start your own Elimination Diet by adding one food at a time to see if it causes problems.

I also think you should give the combo of oral mesalamine (so in your case, Lialda) and mesalamine enemas a shot. The reason rectal meds are helpful is b/c the oral meds don't do a very good job at treating the most distal part of the colon and rectum and the enemas are VERY good at treating it. My GI said that enemas are much more effective at treating UC than oral meds, and that it's too bad it's impossible to treat the entire colon with an enema! :)

I've been in remission for over two years now using Apriso (similar to Lialda) daily and mesalamine enemas 2 x a week. I used the enemas daily until I achieved remission and had been in remission for a good month, then dropped to every other night for a few weeks, then to twice weekly, which is my maintenance dose. I found research studies that found patients who use enemas 2 x a week in conjuction with oral meds stay in remission longer than those who only use oral meds.

Enemas are by prescription only. Specifically ask for mesalamine enemas (Rowasa is the brand name) because there are also steroid enemas. I suppose you could use the steroid ones to help kick you into remission, but I wouldn't try them w/o giving the mesalamine ones a whirl first.

Some docs don't mention them b/c they think patients won't use them. My doc didn't mention them to me; I brought it up at my appointment the week after I was diagnosed because quincy told me to ask about them! He'd only prescribed Asacol at first, because he thought I was far too ill to hold an enema. But, he said he'd be more than happy to let me try the enemas, and they made a world of difference right away.

There are also some docs who argue that they "don't work" for people with pancolitis (like me) because they don't reach the whole colon. Well, they DO work very well at treating the part they can reach, and the oral meds treat the part they can't.

've already stopped choosing anything with wheat in it and I notice I have a much calmer stomach if I eat white bread or something similar instead of wheat.

White bread has gluten because it's made from flour. All bread including donuts, cookies, cakes, crackers, etc has gluten in it (unless it says "gluten-free). Anything made with wheat, rye and barley has gluten including beer. Go to google and get a list of foods that contain gluten if you are trying to be gluten-free.

Good luck. It made a huge improvement in my symptoms.

I wouldn't be worried about not following the doctor's orders... if you really don't want the side effects of the Pred, then you shouldn't have that as your only choice at this point. If your GI doctor doesn't see your point of view or listen to your concerns and try to come to a suitable compromise with you then maybe you should shop for a new GI doctor. I know that is a pain but unfortunately sometimes you have to keep looking until you find the right fit for you. My GI did recommend and (strongly at that) the enemas.. I didn't try them because as soon as I started taking the Lialda and stopped stressing over the "mystery illness" of undiagnosed UC.. my symptoms got "better" pretty quick.. then I added in the Aloe vera juice and saw a huge difference.
No matter what, you are in charge of your health.. it's ok to disagree with a doctor, they don't know everything and certainly don't know everything about UC unfortunately
Good Luck to ya!