Crohns and Colitis Exchange

I have ulcerative colitis and have been on prednisone for over a year. I guess I'm one of the lucky ones, because I don't have the awful side effects from it like most do. I am tapering down now and am at 7-1/2 mg. a day and doing OK. I am also on Lialda. I started on that over a year ago at 4 a day. Because of the cost, and the fact that I was doing so well, I'm now down to 2 a day and it's working fine. I'm also on Lomotil and Dr. Swanson's Ultimate Probiotics. FINALLY, I'm almost normal. This disease is no longer running my life. I can pretty much do what I want when I want.

So, here's a rundown of what is working for me. 4 Lomotil a day, 2 Lialda a day, one probiotic a day, a multivitamin and 3 Omega 3 a day, as well 7-1/2 mg. prednisone a day. I hope to get off of the prednisone completely in a month. We'll see. My GI says the 7-1/2 of prednisone is quite tolerable, so if I should start to flare if I go to 5 mg, I'll go back up to 7-1/2. As I said, I'm so close to normal (2-3 bm's a day) and I feel quite comfortable with everything now. I hope it continues. But, and there is always that word.....but.....I know this could change at any time. That's one of the unfortunate things about this disease. You just never know. However, I'm thinking more positive now than ever before.

I guess it boils down to everyone is different, and it just takes time to find the right meds and the right dose. It has taken me and my GI 2 years to do that. I was always fairly patient about it, but there were definitely times where I would lose my "cool" and just be so darn frustrated.

Hopefully you'll find what's right for you. I'm sure you will, but it may take time. Good luck, God bless and keep us posted. we all care very much for each other on this site.

Colitis is a chronic disease, rather like Type 1 diabetes, most cases require lifelong medication. There are exceptions--true ulcerative colitis can be cured by surgery. Colitis caused by antibiotic use can abate. Otherwise, it is a case of medication, remission and flares.

As for what to eat, keep a food diary and find the foods that seem related to flares. This article on Creating a Crohn's Disease Diet plan should help some with finding the right balance for you.

Sorry about the carpet clean up. I hate the clean up on the few occasions I need to do it and we have wood floors.

Thanks for the advice. I think I have begun to feel isolated thinking I am the only one with this problem. My doctor has upped my dosage on the Lialda to 4 per day instead of the 2. If this is bad I can't even begin to imagine having ulcerative colitis. I was really beginning to feel normal until today. I suppose I need to get used to the ups and downs. Thanks for taking the time to share your words of wisdom.

No one type of colitis is worse than others really. Even within the same type there is a range. I have Crohn's, but there are plenty with many more serious complications and plenty of people who get almost no complications. The same thing goes for any IBD.

The ups and downs rot. Best thing is patience, watching out for foods that make things worse, never missing a dose of meds, keeping in touch with your GI doc, staying hydrated, and rested.

With Type 1 Diabetes, you definitely need to watch the hydration in particular.

Good luck and know you are never alone and stop by-we can offer everything from cleaning tips to bathroom stocking to ideas on how to get the right answers from your doctor and share experiences with medications and tests.

I am one of those lucky few without major complications. I have not had any flare-ups since I was diagnosed thirteen years ago. Despite this, I have had a hard time convincing any doctors to reduce my medication. (I currently take 3 Asacol tablets 2x a day.) My colonoscopies have even been clear. I don't want to completely ignore these doctors' advice, but I also don't want to take a lot of unnecessary medication. (especially since it's expensive!) I am not really sure what to do. Anyone have a similar situation?

I've had colitis for over 18 years now and take Dipentum for it. Over the years the number of pills I've had to take for it has gone up and down. For many years I've had the doctor ask me how much I need - not the doctor telling me how much I *should* be taking. I wish I could wean off the meds completely but I know that's not going to happen.

While it might not appeal to your doctor, I see no harm in trying to (very) slowly reduce the number of pills you take. Remove one pill a day and keep it like that for a month to see what happens. If you start having problems go back up to your old dose, otherwise keep slowly moving down.

You'll never be able to not take meds at all, but it may be possible to take less of them. On the other hand you may have been so lucky because the amount of meds you've been taking has kept it under control. Have you always been at 6 Asacol a day, and do you take anything else (vitamins, supplements, etc)?

When I was really young I took Mercaptopurine, mainly because my mother had a difficult time getting me to take 6 pills a day, and Mercaptopurine only requires one pill. I have also taken Lialda. I only switched because it was more convenient to take less pills, but then my insurance changed the pricing. I have never switched because any of the medications were not working and have never had any problems when switching medications. I do not take other supplements or vitamins.

Doctors have said some people never experience any flare-ups in their lives, but I do not know what sort of medication they do or do not take in that situation.