New old on the UC block

Hello everyone. I can't tell you how valuable the information is that people post here on this forum.

Was officially diagnosed with UC in July/11 Spent two weeks in the hospital with a severe flare up and I'm 52 years old. I'm pretty sure I acquired UC 22 years ago, at which time I suffered for about 8 months of a flare but never went to a doctor for it. After th e flare receeded completely on it own, I would experience bouts of bloody diarrea ever 3 months or so, but the pain was never severe and I never had the terrible sick feeling that I've had for several months now. Wee, back in April, the onset of this severe flare started gradually. So gradual that I really took too long to go see the doc. Just like a frog being put water that is slowly is heated to a boil. the stupid frog is not smart enough to jump out until it's too late. Anyhow, it seems I will not get better this time until the medications I'm taking are the correct ones and in the right quantities.

Here's what I'm doing now (besides lots os pain meds). Let me know what anyone thinks or provide suggestions:

Tried taking Mesalamine (Asacol) , but it really seems to send me backwards to that completely watery, rust diarrhea, so I quit taking it altogether. Also because of that, I'm refusing the enima vervain of melamine.

80mg prednisone. Was doing 60 but I convinced my doc that my gut feeling of 80mg would be better. Using 60mg, I was waking up at night and spending 2 hours sitting/sleeping on the toilet with many bouts of cramps and pain. I know it's aggressive, but in the long run I'm hoping 80mg will get me to where I want to be and might wind up using less overall over a period of time. I've been doing 80mg now and have noticed a huge improvement than when I was only taking 60. Also, I spread it out to be 4 times a day (20mg doses) ranging from 7:00am to 10:00pm. Does anyone else find spreading them out to help get through the entire day? I also weigh 230 lbs.

100mg Azathioprine (imuran) withe the dosage expected to double (I think). Ihave to admit, I'm scared about the side effects of this drug and am very apprehensive about using it long term. I'm wondering if there's something else I can switch to once this current flare goes into remission.

Probiotics: Florastore

I've been on leave from work for almost two months and am hoping to get back within a month while I still shave a job. I'm curious as to how long this sick feeling will last. It sure is persistent and makes me think about going the j- pouch route. I cannot see going through life dealing with this at this level of misery.

Thank you for taking the time to read this and I look forward to any thoughts anyone has to offer,

Hi notsosicklygirl,

Been on pred for about a month. Began the ups dose from 60 to 80 3 days ago. The doc said he wants me absolutely off if within a couple of months. For the mesalamine, first I tried Asacol, then apriso. Both had a negative effect. I think you're right, I should try all the variants since they seem the best way to go if one of them will work. Question: if melamine is not tolerated orally, then wouldn't it make sense that the enima version would not be good either? I'm afraid to try. I will ask my GI doc about colazal nextas well as steroid enima. Thank you for the suggestion.

I've had 3 colonoscopys. #1 scope was at age 47 (5 years ago) 2 small polyps were removed. The reason i had one performed at that age was because i knew there was something that was not right with me. Too frequent and occasional bloody diarrhea and 4-6 bowl movements a day. I guess those were all mini-flares that just went away on their own. But no indication of UC. #2 colonoscopy was performed as a routine check that's recommended when we turn 50 years old. It was performed less than two years ago and my colon appeared healthy and normal; no sign of UC. #3 scope was done in July after I was hospitalized. The report said "moderate/severe UC throughout the entire colon", hemmoraging, ulcerated, etc. (not sure why the word "moderate" was used in conjunction with severe. The images showed my colon looked like bloody ground up pork.). Also another polyp was found of the type that the doc said is not uncommon to have one quickly grow with a flare up like mine.
The doc wants to do another scope in a month or so.

So I'm just staring the azathiaprine. The doc wants me to get going on it ASAP to give it time to work so I can get off the pred. Still waiting for the blood test to comeback to determine whether I'm in the therapeutic range. Ki will look up the other posts regarding the antibiotic combos.

I've been through many stool tests, so presumedly they tested for bacteria and who knows what else. Oh yes, I am willing do do whatever dietary changes that may help. The first one was to quit drinking alcohol. I think booze is not good. Instead I've switched to papaya/banana flax oil smoothies. Papayas and flax really help the cramping, especially when choking Dow those miserable
pills :)

So I guess my plan is to inquire from my doc about rectal steroids and try all the melamine variants (5ASAs). If you can recommend anything else I could ask him about trying , please let me know.

I'm glad the 6mp is working for you. It seems everyone on this forum requires finding the right combo of medication that works only for them and this is a great place to learn from.What a weird, wicked disease. Thanks again for your informative reply.

Subdued, I agree with you that these meds are not good, but according to my GI doc they're keeping me alive right now. I am finding that diet really does make a difference. Lots and lots of papaya smoothies with flax oil and Kiefer probiotic dairy added. I also avoid anything with high fructose in it like the plague. As this current flare up resides (I should say ""if"), I will continue to work on more natural flare-up preventatives.

So, I'm down from 80 mg pred per day to 60mg for two weeks now. Now I have at least one very bloody bm per day but no big D. Nicely formed but skinny stools. Other 3 bm's are not bloody. about to decrease pred to 50 mg per day (per doc). Also taking 200mg Imuran per day going on two weeks. Apparently my blood work says i'm a good candidate for Imuran to be effective. My problem is, the calves in my legs are very sore(right side in particular). And my feet have become very swollen. (getting a bit of a moon face too and my hair quit growing, it's not falling out, but it quit growing where I normally have a very healthy head of hair). Is this feet swelling normal in persons taking such high doses odd prednisone? Also my wrist, finger and jaw joints sometimes go through short periods of being very sore, usually lasting no more than five minutes or so.

I think I'm stuck between a rock and a hard place. I'm afraid decreasing pred dosage will result in increase in bloody bm's, but not decreasing it is causing other bad stuff to happen. The doc says unlike Remicade, Imuran ias just as powerful but takes a month or two to be effective, so maybe I just have to sit tight and live with with the extra blood as I taper?