I average crapting my pants 2 times per week

Hey agwuc,
pls tell us more about this Mabervine. Is it a drug? probiotic? What?

Haha! I randomly stroll back over to the UC board after weeks of sticking to the ostomy board, and the first thing I see at the top of the list is another post about SomeDude crapping his pants again. Ah, some things never change.

And Puffed Rice, don't bother talking to this guy about rectals - it's an argument you will never win. ;-P

Nice to see you're still up and at 'em SomeDude. I don't know how in the world I made it through seventeen years of UC without ever crapping my pants (though I did have my fair share of bloody mucous farts)... I agree with Rice though that you should try some meds like Lomotil to slow things down if you haven't already - I've heard they work wonders and would totally use them myself if I was in your shoes. I also second (or third or fourth) the getting up earlier - mine was always worst in the AM too; sometimes I'd have to go five or six times before leaving for work. Have you tried doing hella kegels to strengthen your "holding" power? I always did have a pretty strong pelvic floor. ;-)

I feel for you dude.

Remind me what your reaction was to Imuran? It didn't work i take it?

Ok, so I'm going to repeat my treatment regiment again lol. 

When I was diagnosed, I was put on ASACOL 4600mg per day and 4g Mesalamine Enema. I took those for about a month with no apperant improvement.

 

After noticing that my condition didn't improve, I went to my original GI. (the one who diagnosed me with U.C. wasn't the original).

 

My original GI said.. No no no...the other one didn't have the right approach. I said: Well, what is the right approach. She said: We're going to put you in the hospital for 4 days and we're going to give you 60mg per day Predinsone I.V. This is the gold standard to stopping the flare, THEN we go on the 5ASA regiment. I said: cool.

 

So, after those 4 days, my flare ended. Or so it seemed. I was then put on 40mg per day oral predinsone with 5mg taper per week.

 

Now, at that point, I was still on 5ASA 4600 mg with the 4G enema AND predinsone (or predinsolone how some people like to spell it lol )

 

I thought everything was hunky dorry until at 20 mg predinsone, I started flaring again.

 

I complained to the GI, she said, we're going to put you on IMURAN. She of course gave me a loading dose to see if I could digest that pill. The test took about..I don't remember 1 month or so. The results came back positive and she put me 100mg of Imuran. At that point I was still flaring and my taper of predinsone ended.

 

I went back to my GI and she said. Let's do another 4 day in the hospital. I said: cool.

 

So another 4 days of 60mg predinozonlone (spelling error on purpose cause it's funny) I.V. in the hospital and then 40mg of predinsone taper @ 5mg per week + 5ASA asacol + enema. Remember, I was still on the ASA all this time at max dose, 4600mg.

 

So, let's summarise so far: I'm on Imuran 100mg + 4600 Asacol + 4G enema + predinsone. At this point I'm okish.

 

Things go ok for a while until I reach 10mg. Now, blood starts up again. W.T.F

 

This time, I said, for sure I ain't getting back on predinosonolne, because I ain't feeling good on it. 

 

So what am I to do: I suck it up cause I'm a soldier and go on without the predinsone.

 

At this point, I was on Imuran for more than a month + 4600 asacol but stopped the enemas cause they were really annoying and I couldn't see any benefits after all this time.

 

Seeing that I wasn't getting any better, I started changing my diet. I went on the SCD diet. I went gluten free and dairy free, etc.

 

So now I'm on diet mods, imuran, asacol and supplements.

 

Things don't change much...

 

I then find jini patel IBD remission diet. I buy her protein shakes and DRINK ONLY THAT FOR 1 MONTH AND 1 WEEK. SO LET'S BE CLEAR NOW. NO SOLID FOOD FOR 1 MONTH AND 1 WEEK. I lose about 15 pounds, I feel like crap, I'm pale and miserable.

 

After that ordeal of liquid diet, I couldn't take it anymore and stopped. No improvement whatsoover. I went back to SCD.

 

All in all I was on asacol + imuran + diet + liquid diet(1 month and 1 week) for 3 months +

 

I went back to my GI  and said, this can't continue like this. She agreed and said, let's get on Remicade.

 

This is when stuff started going for the better. When I started Remicade, things were looking positive, my bleeding decreased drastically, I gained some pounds back, I was feeling better. No more weird shaking from predimosolone.

 

In the mean time, I got a prescription for LDN.

 

So I was now on ASACOL, LDN, diet, remicade. I had stopped imuran a little while back. I just didn't feel anything positive about it.

 

Remicade was semi working;  I always had to increase the dose and decrease the time intervals between injections. I CAN'T ATTAIN FULL REMISSION NO MATTER WHAT LOL.

 

At this time, I was getting bored of 5ASA, I would always inspect my stool and see the pills in there, barely openned. I even picked one up and looked inside (yes, I did pick it from the stool) and it was barely openned. So I said f... this.

 

So, I am now on LDN + diet + remicade 10mg/kg and supplements.

 

I had a colonoscopy in August and my inflammation decrease to half. So that was positive news, because I was ready to take the colon out. I alredy had the information session with the surgeon in Montreal.

 

So now, here we are. I feel ok, but obviously far from normal at least by my standards.

 

I probably missed some steps and forgot to say something, but I rarely write novels on here. lol  

 

Crapping my pants is more of an annoyance than anything else because I go to work on polyester track pants which are super easy to clean and dry in like 20 minutes.

So, if I crap in them, I go back home, I take a shower I lighty rinse the pants and leave them in the bath tub. I take some other pants and then go back to work.

I couldn't go in surgery when I saw improvement. That is not logical to me....so there we are.

I completely disagree that my regimen (regiment is a military unit) is "too easy."  Sure, I might be in remission randomly, but I bet that if I quit taking my meds, I'd flare.  Remember that this board, by in large, represents people who are having trouble controlling their UC.  UCers "like me" don't need to be here.  I stick around to give hope to those who are newly diagnosed and freaking out -- to show them that they might be ok and not go through the kind of crap you do.

As for Apriso, yes, it has a much lower daily max dose than the other mesalamine meds.  However, it supposedly dissolves more effectively, making that 1.5 g more available.  Who knows what the "real" truth is.  I did my research and chose Apriso because I wanted once-daily dosing and because I was finding whole Asacol in my poo.  Apriso dissolves at a lower pH than Asacol, and UCers are thought to have more acidic guts. 

Here are some stats showing the effectiveness of mesalamine drugs:

In a study using Lialda® for maintenance therapy, 459 patients with ulcerative colitis in remission were randomized to receive 2.4g once-daily or 1.2g twice-daily for 12 months³. By the end of the study, there was no significant difference in clinical remission (89% with once-daily vs. 93% with twice-daily), or clinical and endoscopic remission (64% vs. 68%). Serious adverse events were rare in both groups and mostly related to ulcerative colitis exacerbation.

Two maintenance studies on Apriso® have been performed. In a randomized clinical trial of 300 ulcerative colitis patients in remission, Apriso® 1.5g daily was compared to placebo over a 6 month period⁴. Remission rates at the end of the study were 79% in the Apriso® group and 58% in placebo (P⁵. Once again, 6-month remission rates were significantly different between groups (78% v. 59%, P

In the largest randomized clinical trial done in IBD patients, 1027 ulcerative colitis patients in remission and on Asacol® were randomized to receive that same Asacol® dose (1.6g to 2.4g) with either once-daily or twice-daily dosing for 12 months⁶. By the end of the study, 85% of each group was still in remission. The times to relapse and the rate of serious adverse events were similar between groups.

From:

http://www.vhjoe.org/index.php/vhjoe/article/view/16/13

Awesome post somedude, once again I feel I'm not alone! You described what happened to me twice last week. I tuck my long coat under me and the other time I forget what I used, but it's like the worst smellest poo every when I go in my car. If I take a diflucan, slippery elm or marshmellow root anything jelly like, I crap in the car! Sorry you're going through this, but you're not alone!

I know my protocol beats your protocol. But that doesn't mean I'm in remission "randomly." Look at the numbers above: 79% of patients on Apriso were in remission at the end of a 12 month study -- who knows what that number would have jumped to with the addition of mesalamine enemas.

I do think that the longer one is in remission, the more likely (s)he is to stay in remission -- part of this is because the mucosa becomes more completely "healed" as time goes on. But I still think that staying on maintenance meds is key, to keep inflammation from popping back up.

But my remission was gained due to mesalamine + pred use, not randomness (unless it's "random" that mesalamine + pred worked for me and not for you).

And you're confusing me....do you still think my remission is random or not?

"It's also possible you have a mild form of the disease whereas I have a severe form and first level meds don't work well."

That's where I'll agree with you.  Maybe "form that responds to mesalamine" would be more appropriate as my flare was quite severe (upwards of 20 BM's a day, drastic weight loss, low fever, rapid pulse, pancolitis).  I also think that UC is just an umbrella term -- that we all actually don't have the same disease and that's why we respond so differently to treatments. 

There's only one way to know if it's the drugs or "luck" keeping me in remission, and as you pointed out, it'd be stupid to even try that.

 

Have you tried getting up earlier? I never saw you answer that.

Mesalamine enemas did jack for me. Hydrocort only ones that worked. I actually eventually quit everything except for the remi. Nothing changed for over 12 years and I just progressively got worse. No justification to take the same stuff that made no change in my condition.

No, I'm taking 4 Apriso once daily.

I get that it's not fair. But there's a crapton of stuff in life that's not fair.

Oh right...4 apriso. sorry. I'll take 4.Shiiiit, I'd take 8 if it keep me in remission. lol

There's a guy at work, he just retired recently. He has diabetes and U.C. He has one of the machines attached to his belt with wire in his stomach, I guess for insulin. He was giving me advice on UC. He's like: I take 16 pills of Asacol per day. I go ...you must be joking. I show him the red pills which indicated 800mg on them, and he's like...yup that's what I take.

so 16 pills multiplied by 800mg : 12,800mg of asacol per day. lol This is what he was claiming he was taking.

I never knew if what he said was true or not but apparently his GI approved that. wow