New to Forum - Looking for Encouraging Stories!

Hi all,

I posted here once before with a specific question but I thought I would post again by way of introduction. I am currently a first year law student from the Boston area, 23 years old, and I've been dealing with colitis flares for about three years now. At first, I tried Cortifoam, which initially worked great and put me in remission for almost a year. At the time, I believe my colitis was only about 10 cm in affected area. When I flared again last May after my remission, I had another scope done and the colitis had spread to about 20 cm. My gastro put me on Asacol (3 pills 3 times a day) and hydrocortisone enemas for a month, to be tapered off gradually. They worked nicely, but my colitis returned after being off them for three weeks, so they must have just been masking my symptoms, not really keeping me in remission. When I tried to go back on them, they didn't work at all! This was back in October of this year. Knowing that my dr had mentioned oral steroids might be the next step, and wanting to avoid them at all cost, I came on this forum and saw lots of talk about the spinach/sunflower seed diet, so I tried that for a month. It definitely helped my symptoms - it made it so that the enemas gave me relief again. But same story: when I tried to wean myself off of them, even with the dietary changes, my symptoms came right back. By this point, it was November, and I figured I would just use the enemas until my law school finals were over because I quite frankly couldn't deal with the stress of doctor's visits and prescription changes until that big hurdle had passed. Unfortunately, I must be particularly sensitive to steroids, because using the enemas gave me some of the side effects normally seen with the higher dosages, aka I gained 15 pounds in a few months and most of it seems to be in my face - ugh! It has done a real number on my self-esteem and I can't wait to get off these, though they have kept my symptoms totally under control for several months.

Anyway, I saw my doctor again last week and we agreed that oral steroids may be a risky choice for me given that I reacted to the enemas - it is likely I would react more severely to a higher dosage. She mentioned 6mp as an option, but I am very reluctant to go on strong drugs like that unless it's absolutely necessary. In the meantime, we decided I am going to try weaning myself off the steroids again this week, but this time I am going to try to move onto mesalamine enemas to hopefully keep a remission going. I am still on Asacol but don't know if it really does anything. Tried to switch to Colazol last week at the dr's suggestion but it made me run to the bathroom every few hours so the dr had me switch back to Asacol.

Moral of the story is, I have been feeling pretty down about things lately, especially since I don't know anyone else dealing with this condition. I feel like eventually I will be forced to take a medication I'm not comfortable with just to get relief. I hate feeling like I am only 23 and already running out of options since I know I will be dealing with this for the rest of my life. Has anyone had good experiences with the mesalamine enemas? Do you know if they help even if your colitis is higher up in the colon than they technically reach? I wouldn't mind even if some of my symptoms returned, I just want to get to a point where I can stall it in a manageable state and it doesn't progress to an unbearable level. I'm seeing an IBD specialist next week to see if she has any new ideas for things to try if these enemas fail me.

Sidenote: I am also conducting my own experiment where I stopped taking my birth control pill a week ago for the first time in three years. When my colitis symptoms first started, I had only mild bleeding for at least two years. Things didn't rapidly go downhill toward my first flare until a few weeks after starting the Pill. At the time, since I had had bleeding before the Pill, I assumed it was just unfortunate timing. But the more I have read over the years, the more I have found stories of people saying the Pill has made their colitis worse (or better in some cases). It may be worth noting that I also have polycystic ovarian syndrome, so my female hormones are naturally low (so if there is a link between estrogen/progesterone and colitis flares, it would make sense in my case). Anyway, I stopped the Pill for now to see if that also helps me maintain a remission. Fingers are crossed!

Sorry this is so long, but I've been looking for somewhere to vent about all this :)

I have had colitis for 10 years now I am 34. I am on the max of all meds including prednisolone and probiotics.
I take imuran, mesalazine granules, prednisolone, probiotics and enemas when really bad with blood and mucus.
I have never really been in remission for long periods of time eg. years at a time.

i find fatty, junk food and sugary foods and alcohol make my colitis worse.
I also have had alot of problems with my periods for a few years. I have had many tests and was told to go off all contraceptive meds to see if i got better. I am not on anything and my periods have gone back to normal. So i think maybe the pill does cause problems. Thats just my thought though.
But I have always gotten pregnant easily i have 3 kids.

I would certainly try the Rowasa/mesalamine enemas. I would think prolonged use of steroid enemas would cause thinning of the rectal lining which would just exasperate your symptoms/problems.

I have a feeling that the mesalamine enemas will help you a lot. I think it's pretty odd that you were given steroid enemas instead of them at first, actually. I have pancolitis (meaning the whole colon is affected) and I firmly believe that the mesalamine enemas help a LOT at treating the part of the colon they do reach. When I was diagnosed, my GI started me on Asacol alone at first. After a week, I noticed a VERY small improvement, and he added the enemas (he didn't prescribe them at first b/c I was in such a severe flare he didn't think I could hold them long enough to help). I noticed a BIG improvement very quickly. Now, I know they don't reach the whole colon, but I know they do a fantastic job at treating the portion they do reach.

I'm also using the enemas twice weekly to maintain remission. There are several studies that show that patients who use enemas twice weekly, in addition to oral meds, stay in remission longer than those who only use oral meds. I have not run across any studies that show no benefit to enemas.

As for success stories, I was in a pretty severe flare when I was diagnosed (15-20+ extremely urgent BMs/day plus big weight loss), and I've been in a rock-solid remission for over a year and a half now.

The popular one is VSL 3.

Try to get a prescription for it if you can, because it is expensive.

http://www.vsl3.com/

Please note: I'm in no way affiliated with the makers of VSL 3. If you know of some other ones, then please let us know.

And I have an encouraging story:

I'm in full remission. My protocol is: diet, supplements (including probiotics), and fecal transplantation.

Post Edited (subdued) : 1/11/2011 4:32:21 PM (GMT-7)

Hmm. I kept flaring every few months or so. I was put on azathioprine (it metabolizes to 6mp in the body) and I've been feeling pretty good since. The only side effect I've had is fatigue and it's easily managed with a good multi vitamin. Also I've been completely asymptomatic for nearly a year now. So you may not want to be as scared of the 6mp as you are.

i stopped predinsone oct 1st 2010. My family who sees me only on occasion are my best gauge for telling me if i look like myself. By Christmas they were saying I looked much better! By Mid March they were saying i looked normal again! Due to eating more (hunger) while on steroids I still have a bit to work off my belly, but my face seems back to normal. Glad you saw results with mesalamine enemas, that's what worked for me too ( along with spinach/sunflower) after a year long flare and a steroid dependency. Hold strong, sounds like you are heading in the right direction for sure!

I was diagnosed with UC at age 15 or 16 (so long ago I can't remember...I think I had just turned 16). I had gone into puberty late (turning 15 when I go my first period). And I had a sudden growth spurt....grew four inches, went from flat chested to C cup in three months. Less than a year later I spent a month in the hospital after losing 30 lbs and six pints of blood in a two week period.

Anyway back then in 1961, the meds were limited. I ended up on prednisone, heavy duty for a couple of years (moon face and all the other side effects).

I swore back then and to this day (although few doctors act like they agree....) that it was connected to my female hormones. I went through adulthood with UC at times terrible, but never in total remission until I hit menopause. NOW, at 65, I am almost in complete remission. I believe that probiotics have helped a lot ( I take VSL#3).

I don't know if this is up lifting or not. I do not have children because I feared passing this on. But I never took birth control pills because I so feared yet another drug. Now when I was young, there were not the heavy duty drugs there are now. I took Azulfadine since my late twenties but before that I could not tell you. They gave me all kinds of disgusting drugs. In the end the only thing that ever worked was steroids.

Fifty years later, I can say the only long term effects of the steroids seems to be that my joints are somewhat bumpy looking, and I developed crow's feet much earlier than my peers ( I think the moon face stretch my skin so much it caused early lines, sort of like stretch marks).

I wish you well. Hang in there. I am so happy that now there are so many more options and a place (here) to talk to others. When I was young, I was very lonely in dealing with this. I never knew anyone who had (or at least who said they had IBD. Finally in my forties I worked with a guy who told me his sister had Crone's disease.
I hope the research continues, the drug treatments improve so people do not have to wait as long as I did for a sense of normalcy.