so frustrating...

Hello. I posted a few times here back in September, I was in the middle of a pretty nasty flare, looking for advice, etc. Well, the flare just got worse and I ended up in the hospital for the first week of October (and on my birthday too! hmph.). I was severly dehydrated (couldn't even keep water down) and had been losing alot of blood the last few days of Sept, so I went to the emergency room Oct. 1st. Was immediately taken in, put on an IV, given nausea meds, and pain meds. Heart rate was 140. Drank those nasty contrast drinks, got a catscan, showed full inflammation with no blockage. Admitted shortly after. By the time I got upstairs my heartrate had gone up tp 160. It was pretty scary. So for the next six days I was on fluids, IV steroids, then started Asacol and switched to oral pred the day before discharge. Clear liquids for 4 days, then low-res which didn't stay down and earned me an extra day (they wanted to make sure I could eat before I left). Full liquids for a day, then retry of low-residue. Kept it down and finally got to go home. Given a script for Asacol HD (2400 mg a day!! is it me or is this ALOT??) and a pred taper.

The first few days out of the hospital were pretty hard, my legs were very weak from being in bed so long!! Also I had lost 17 pounds (from 120 to 103 in a month). Hardly any bleeding, still a bit crampy and gassy but the bleeding is always my biggest worry. No nausea at all (yay!). Got my weight up to 106.4. Still have bad D, but down to 4-6 times/day from 15-20. Slowly went back to work. I was feeling much better, just very tired, lightheaded and weak still. After about a week, I had to work more due to my boss going away on business (I am a nanny). Also, Friday was my last day on the Prednisone.

Now I have been bleeding again. Not every time, but probably 2 out of the 4-6 times I go a day, for the last 5 or 6 days. I know I am anemic already (trying to get enough iron but supplements are so hard on my tum), and my weight is back down to 105, despite eating a regular amount of calories. There are still positives, like I usually only have BMs in the mornings and nighttime, not during the day. Before it was all the time. And I still don't have nausea. I just want the bleeding to stop. So bad.

Right now I am taking:

Asacol HD 800mg 3x/day

Align probiotic

Flax Seed Oil

George's Aloe Vera "water" (8oz bottle/day) OR Aloe Vera gelcaps (2-3/day)

Bee Propolis (started yesterday)

I also have a supply of slippery elm, goldenseal, and licorice root.

Low-Residue Diet since getting out of the hospital. I think I might try liquids for a few days because I'm not sure I've been making the best food choices. I know some say food doesn't effect UC but I don't think that is true for everyone. I don't think ANYTHING is true for everyone with this disease!

I'm getting so frustrated, because I thought I'd be better than I am by now. If anyone has any opinions on what I'm doing, or any advice on how to stop the bleeding (without going back on pred) please share your wisdom. What has worked best for you? I can deal with all the other symptoms until they decide to go away, but not the bleeding.

Thanks!

Thanks songlady, it definitely made me feel better that it isn't an extreme dose I'm on. I just wasnt sure what was average or whatever. I was on Asacol 14 years ago and remember taking several smaller pills, but of course I do not remember the mg amount.

I haven't stuck to just liquids yet but I've made sure to keep to soft foods and I also make sure I chew thoroughly (sp?), and eat small amounts at a time.

A little update since yesterday morning: 3 poops and only a little blood once!! Huge improvement from the last few days. Not sure if its the bee propolis or not, thats the only new thing I've added besides psyllium husk powder (only took that monday and today). Or if it could be the Align kicking in (on 5th or 6th consecutive day). Whatever it is I hope it keeps improving and it isnt just a "break" like I sometimes get. False hope SUCKS!!

Sounds to me like the Asacol isn't adequately managing your inflammation. Please discuss other options with your doctor - soon. You shouldn't have to get so sick you have to be hospitalized to get help. And simply giving you more of a medication that doesn't seem to be helping won't do much either.

I agree that you need to get much more aggressive in your treatment. Upping your Asacol and using rectal meds is a good place to start along with sharing your current status with your GI. Don't be fooled by the lack of blood. Blood is merely one symptom in group of several. Lack of blood does not necessarily indicate and improvement in your condition so don't let that one improvement convince you that you are getting better. You may be, but you may not be. UC is unpredictable at best.

Sue

The blood might not stop completely, mine never did until Remicade.
You are doing so much better, don't let it bother you!

I took as much as 12x400mg of asacol = 4800/day.
Better living through chemistry! I know it's hard to accept that we need these chemicals, but we do.

Can you put the footnote in your message of what you are taking? Edit your profile in the "Control Panel" and you can keep it updated there.