How bad is the pain from UC?

Hello everyone. I wish to know from other sufferers of UC how bad their abdominal pain gets because, though I have abdominal pain and UC, there are strange circumstances surrounding my story...

I first noticed the blood in the stools when I 12, and it appeared to be perhaps 1/20th of a cup (I'm not good with measurements, sorry). Since then, I noticed that the bleeding, both frequency and amount, gradually increased, but I had absolutely no pain at all. I'm 25 now, so this was 13 years ago. By the time I was about 15, the amount of bleeding reached its peak where it remains today with me bleeding almost everyday, sometimes its very mild and in rarer cases it can be as much as a cup of blood loss every bowel movement. Also, large blood clots, sometimes almost the size of my fist, are also in the stool. Sometimes, I have as much as three of these large blood clots in just one bowel movement.

Despite all this bleeding, I have had absolutely no pain whatsoever. In fact, I didn't plan on ever seeking treatment because it didn't bother me at all. It wasn't until my mother discovered the blood in my stools when I was 17 that she insisted I go get it checked out and was subsequentially diagnosed with UC. I was prescribed asacol, which I didn't take for more than three months. Because I didn't feel bothered by the disease, and I had absolutely no pain at all, I didn't seek anymore treatment until February of 2013.

I went to the hospital in February of 2013 because I was feeling just a little fatigued from the blood loss. And this was nothing new because I have had periods of being mildly fatigued and chronic anemia since I was 15. But it was so mild that I never worried about it. But I thought maybe I should try and take care of the bleeding so I would have a little more energy (though I didn't really need more energy). And when I went to the hospital then, I still had absolutely no pain whatsoever. Not a single glimmer of pain at all...

Then... I was prescribed prednisone (however you spell that). And within a week of taking it, not only did it not reduce my bleeding at all, I suddenly found myself with extreme, not severe, EXTREME, DEATHLY, abdominal pain on levels like I have never experienced before. It literally and constantly felt like some one was stabbing me and ripping out my insides. The pain was so bad I couldn't move or eat. I went three whole days without eating because I was in so much pain. I went to the emergency room via ambulance for the first time in my entire life because I thought I was going to die.

In the hospital, they just kept giving me more steroids and after about a month in the hospital, with no progress and the worst pain of my life, I realized that it must be the steroids causing me pain. The doctors convinced me at first that it was the UC causing me pain, then I actually thought about it myself and realized that it wasn't. So, I started refusing to take the steroids and after several months in September 2013, I was pain free again despite still passing the same amount of blood. I felt so much better, I took up doing the INSANITY work out twice a day like I had been before I started having pain.

It turns out that I had an allergic reaction to the steroids (or some additive inside them). When I was finally pain free again I thought I wouldn't have to worry about it anymore. Well, in January of this year (2014), I started having this completely debilitating pain again. And so far now, I've been hospitalized 5 times this year JUST because of the pain alone. Yes, I was low on blood and they gave me transfusions, but I would have never gotten those transfusions if I didn't have the pain. So, the blood loss was not my main concern, the pain was. Since I never had any pain whatsoever before I started taking steroids, and since I was taking steroids for so long and at such high doses while having an allergic reaction the whole time, the only rational explanation, I think, is that the steroids must have caused permanent damage to my system some how and that's why the pain is coming back.

I had to leave the hospital a few times against medical advice because it had gotten to the point where both the doctors and I were just screaming at each other because they just wanted to give me more steroids and nothing else. They told me there's no evidence that I was in pain and refused to give me anything for pain even though I was screaming and crying and couldn't move or eat because I was in so much pain... One Hospital did have me on a whole bunch of fentanyle at one point in time, about 150 mcg per hour and the pain was so bad that even that did not bring me any relief.

I'm still in pain now, its more controlled with the help of Hydrocodone 4 times a day, but sometimes I still get spikes of that not even the Hydrocodone can relieve.

The scale of pain that I get is unreal... UNREAL. Its 100 times worse than being stabbed in the finger all the way to the bone (I did accidentally do that myself while carving once). Its all in my lower abdominal area, mostly on the left side and in the middle. The doctors are acting like there's no way I could be in this much pain. And though the usual response I get is "UC is normally painful", even though it wasn't normally painful in my case, they're acting like its normally not as painful as I say I am experiencing.

So, I really would like to know from anyone else who is suffering from UC as well and has pain with it. How painful does it get for you? Is the pain so bad that you can't take care of yourself? Does the pain get so bad that you can't move or eat anything? Does the pain get so bad that you're constantly crying and screaming out loud because you're in pure agony? Is it that painful everyday, all day, to where you have to take heavy amounts of pain medicine all day just so you can sit up and feed yourself? That's how painful it gets for me...

All of this is telling me that my pain is not associated directly with my UC, and I've tried telling my doctors this but they won't listen to me. If you guys don't experience this much pain with UC, then I'll have one more way of telling my doctors what's truly going on with me so I can finally get the treatment I need.

I wish to know how much pain they have, if its as bad as mine or not, because like you, I never had any pain with mine before either, but my doctors won't listen to me and they don't believe me. They act like there's no way I could be in as much pain as I am, so that really makes me wonder, though people say they have bad pain with UC, is that pain completely debilitating to where they can't even eat or have trouble getting themselves to the bathroom? Does it feel like some one is ripping out all of their insides?

As for shingles, I had chicken pocks when I was little, but the pain I felt was like large amounts of gas, bloating, and cramping all in my lower abdomen. I didn't have any "burning sensations" like people describe shingles pain to be.

I feel like I need to have a complete collectomy ASAP because this pain is destroying my life. I've had to put my college education on hold because I can't guarantee I'll be able to make it to classes. If I lose my college education because of this I could never forgive myself, it means everything to me. But no one wants to do that for me. All they want to do is give me steroids and send me home...

Wow.

First, to answer your question, UC can definitely cause extreme pain. I get severe pain only when I'm in the middle of a very bad flare (only one time for me). During that flare, I was hospitalized and got pain meds the whole time.

Once or twice, the pain was at a level nine out of 10 but most the time, the worst was around seven or eight. I've never cut my finger to the bone but I'm going to guess my pain was not as bad as that. More like my worst labor pains.


I was on prednisone for seven months after that flare and it definitely caused me joint pain. But that was achy and stiff pain, not acute.

Can I ask how you were diagnosed with UC? Based on what clinical evidence? When was the last time you had a colonoscopy and what were the results? It's kind of amazing that you had no pain despite the unbelievable amount of blood you would see in the toilet bowl. I have no idea what it could be but I question the UC diagnosis.

UC pain is hands up the worst pain i've ever experienced in my life. i'm pretty sure i could give birth to 20 children- in a row!- and not feel the same pain i have felt from UC. i equate it to a pig roasting on an open fire while having 1,000 razor blades cut you from the inside.

there have been times where i can't talk and i'm just humming random songs to distract myself from the pain. obviously, all of these times have landed me in the hospital and on steroids. the pain has gotten different the longer i flare but it still makes me question how on earth a higher power could give someone this disease.

so yes, i can relate with you 100%.

I had blinding pain when my gut would spasm on the toilet when I was flaring. The walls would close in and I am amazed I didn't pass out. Breathe, breathe, it will pass in a minute, it always does...
Man, I dreaded going to the toilet when I was flaring.

I was told it feels like labor, but I never had a baby.

Ive had some terrible terrible pains from UC.

But from your post id be more concerned with your blood issues.
Maybe when you got a transfusion you picked up something that caused the pain.

If the steroids did some permanent damage, I dont think you'd have had the pain free time after you got off of them. And if you got IV steroids... then those werent processed through your digestive tract.

Have you ever thrown up or been constipated during this pain? I know strictures can cause great bowel pain. With the food being stuck and all.

Dilaudid is heaven-sent. Ive never been questioned at the ER or by my GI or when I was admitted as to wether my pain was legitimate... they all knew I was in pain. I cried a lot. And was curled in a ball a lot.

Im sorry you are having to deal with all this.

Your amount of pain sounds "over the top" to me... but like someone said... pain is relevant... hard to quantify. What might be painful to me, may not be yo you.
so is YOUR pain out of the ordinary? I dont know. But the pain you are describing sounds terrible. Makes me wonder if you are having a neurological issue that you are feeling exaggerated pain? Or maybe something very seriously bad and wrong is going on... but colonoscopies and xrays and ct scans should show that...

Untreated ulcers left for years, bleeding into your colon... well maybr the ulcers have spread into further layers of the tissue that normally arent affected since it was left untreated for so long.

Hope you get answers soon.

I went undiagnosed for many, many years because the diarrhea was mild and I had no pain or blood. When I was finally diagnosed, I had diarrhea 24/7 for several months, but still no pain or blood. It wasn't until my bad flare 2 years ago that I finally did experience any pain at all, but there still has never been any visible blood. I will to you that I could barely move because the pain was excruciating! I feel for you. :(