Is this what a flare is like? So much pain :(.

Hello everyone,

I'm pretty much typing this in my bed curled up a bit after having a painful bathroom episode heh.

I've been lurking on/off on the forums over the years but haven't really posted on here. At the age of 23 or so I was diagnosed mild ulcerative proctitis (I'm 29 right now). Over the years, my bathroom habits haven't ever been the same as before the diagnosis. My one GI doc used to think I had IBS with UP.

I ended up changing from that doc to another one that was much more compassionate and seemed knowledgeable about the disease and have been working with him to get things back to normal. I never really had bad flares, I'd say mild flares here and there and we've tried prednisone for my last mild flare with minimal success. That somehow cleared itself up (likely cause I went back to smoking, sadly).

2 weeks ago I started having the worst flare, if this is what it is, that I've ever experienced. Wouldn't wish this pain on anyone. Constant painful cramps. More blood than usual, mucus, and pain when going. It got worse - more cramping, more blood until I shifted from a dose of Entocort the doc had me on to Prednisone. His recommendation was that I should get on Remicade, but I wanted to try steroids before going to biologicals, hoping for the best.

I've noticed some mild improvement since switching to the pred. The cramping throughout the day isn't as bad but I still get some blood (although not as much). I find myself having tenesmus and painful attempts to go, followed only with some pink mucus and sometimes a bit of blood. I was checked for anemia and fortunately don't have that yet.

Right now, I'm experiencing these random bouts of intense pain where I get bad cramping, then need to rush to the bathroom and strain so hard to go I'm almost in tears. I do end up forming some stools but it's so darn painful the whole time. To top it off, I strain so hard that I have some prolapse related to the pushing. After these episodes I'm feeling better but still so exhausted and worn out from the whole ordeal and sweating like crazy. This really sucks :(.

I have my first Remicade infusion scheduled for Wednesday. I was scheduled for August 11th but they managed to push it up due to the pain.

Are these symptoms of a really bad flare? God, I can't wait to get on remicade and truly hope it works and works fast. I can see the appeal of surgery after dealing with this.

They have me on rowasa enemas but they don't seem to be doing a whole lot. I wish they'd prescribe me canada since i can hold those better but they tell me the rowasa are more effective.

I've been on the rowasa for about a week and a half. I try to use them nightly although the last 2 nights i've not been able to hold it in longer than an hour. I generally hold it throughout the night but don't notice a substantial improvement the next day.

I will have to try maybe half like you're saying and see if I have more success that way.

I do it while on my left side, left leg extended, right bent and stay that way for 30 minutes.

I do have antispasmodics - Dicyclomine (Think it's bentyl?) . Also have Tramadol for pain although I don't notice a huge difference with it.

Doc prescribed me Phenergan (sp?) for anti nausea. Didn't do anything except knock me out after an hour.

That is exactly what I felt like during severe flares. The pain was horrible. Even when I was in what I considered remission (no urgency but still lots of blood in my normal BMs) I still had a ache in my colon at all times. I hated it.

I had a severe flare last fall that had pain symptoms similar to what you are describing. It landed me in the hospital. I took 1 infusion of Remicade, but it gave me joint pain a week later. The pain was worse than anything I had ever experienced with UC-- which as you can imagine, knowing the pain you are in, pretty much made me unable to function. This is a known but rare risk of Remicade. Fortunately it went away when the drug left my system. I went for surgery last November and I feel amazing now. One of the first things I noticed when I woke up from surgery was that the colon pain I had for over 6 years was gone. Sure there was post-surgical pain, but I knew that was normal and would go away. Surgery was one of the best decisions I ever made. I hope your pain resolves soon. I am so sorry you are going through it... I know how horrendous it is.

Thought I would give an update as to my status. I'm doing better, but not 100% yet. I started my first Remicade treatment last wednesday and was feeling a good deal better by the night and next day. I'm not sure though if it's the Remicade or if the 10th day of Prednisone at 40 mg finally 'kicked in'.

I've been able to eat more and am getting adjusted to foods more easily. I'd say I'm maybe 50-60% better than I was, but not 100% yet. Symptoms are still strange and hard for me to figure out. Would like to hear others opinions or thoughts on some of these things:

1.) I'm finding myself eating and not having to go much at all. I still have some urgency here and there but it's typically gas, some mucus and some blood (although no where near as much as it was a few weeks ago).

2.) Today was the first time I went where I had a solid stool and no blood! Well, at least at first. I started getting some cramping while going, with it radiating around my lower back and around front from left to right. Kind of like the cramps I had a few weeks back although not as intense - kind of a burning feeling. After this, more stool came out but this was less formed and tinted red some. It's almost like parts of my colon are healed up and parts aren't? Kind of odd since I figured the prednisone is a full system thing (although maybe part of my colon healed up quicker than other parts).

I'm hoping the experience of pain in higher parts of my colon isn't indicative of having Crohns. When my doc did my last colonoscopy he saw a gap between affected areas, but said that this isn't necessarily an indication of Crohns since many times medications will treat topically certain areas and miss others (i.e. Canasa hitting the bottom and lialda hitting the top).

Anyways, hoping the Remicade does the trick. I'm trying to keep my head up high. Really darn hard to not just light up a cigarette and feel better. My nurse said that she has some patients that have been going 9+ years on Remicade. I can only hope! I figure if the biologics don't work, I'll consider going the E-cigarette route.