Ended up back in the ER yesterday, am kind of scared

I had been doing so great for the past few weeks. I've been feeling better than I have ever felt in my life. I've eliminated a bunch of stress, have been working out every day, eating healthy, gained a lot of my weight back, changed to a less stressful and better program at school, and this disease has really strengthened my relationship with my family and close friends.

A couple days ago my symptoms started to return with a little blood and mucus. The next day was fairly normal, but then things started to go bad. Huge increase in mucus, then just mucus, then blood and mucus. I ended up back in the emergency room yesterday because the pain was so intense, it was almost as bad as when I was in the hospital. I was throwing up and had about 6 BMs yesterday compared to my usual 2-4 even with consuming over 5000 calories a day. The main changes I can think of are:

• Remicade infusion #3 was due yesterday
  
• Switch from taking prednisone 20mg every 8 hours to 60mg all in the morning
  
• Started taking less VSL#3 because I have spent over $500 dollars on it so far and am waiting for NORD to approve my coverage. I went down from the active dose to the maintenance dose.
  
• I stopped sleeping on my left side, maybe the Rowasa wasn't reaching my sigmoid?
  
• And finally what I think really did it, I got lazy with my diet and started eating out with friends. I mean, I was getting gluten free options at restaurants but I don't think some of the food was good for me.
  

I usually don't take pain medication, I don't want to put that stuff in my body. I've seen friends get addicted to it and I don't think it helps my condition at all. To deal with pain, I usually meditate and exercise to get my mind off the pain. This time the pain was so bad I had to go to the ER. I didn't want to take pain medication when I got there, I started meditating and working out in the emergency room and honestly, I think it freaked out the nurses and my parents because I was obviously in horrible pain at the same time. I took some pain medication just to make my parents happy.

When I was in the hospital I didn't know where the pain was coming from, my entire stomach hurt. This time, I can feel the pain on my left side, which means it is my sigmoid, right? I was discharged from the ER last night and prescribed some more pain meds just in case. I went home and slept for almost 12 hours which was great because I have only been sleeping 2-4 hours a night for months. I haven't been using hydrocortisone enemas but used one for a few hours last night, trying to target the area above my rectum where I think the pain is coming from.

I'm planning on taking it easy today until my remicade infusion in a few hours. I'm not eating much to be safe and have gone back up to the active dose of VSL#3. I haven't been in that much pain today minus waking up in the middle of the night in intense pain where I eventually just fell back asleep, but there was a lot of blood in my last BM (it was my first BM after the hydrocortisone and my last BM before that was solid with just a little mucus)

My apologies for the lengthy post once again, but I'd appreciate any advice. Thanks guys!

26 year old male diagnosed with ulcerative proctitis mid 2014, pancolitis after a colonoscopy in 12/2014.
Mid 2014: Initial flare, minor no pain, just blood: Remission with Apriso and Rowasa, switch to Colazal after insurance issues.
12/2014 Second flare, pretty severe: Remission by mixing Apriso and Colazal and Rowasa.
Continued with Colazal and Rowasa and was in remission until very severe flare mid July 2015 where I lost almost 30 pounds.
7/20/2015: 60 mg prednisone started
8/6/2015: Remicade infusion #1
8/18/2015: Remicade infusion #2 (Next is scheduled 9/16/2015), plan to start 6mp after prednisone taper
8/21/2015: Sigmoidoscopy performed, GI said there was no hope for me and I needed immediate surgery.
8/21/2015-9/11/2015: After Remicade infusions, massive dietary changes, switch from Colazal to Lialda, and active dose of VSL#3, I started to get better and gained back about 15 pounds.
9/12/2015: Symptoms begin to return with mucus and tiny amount of blood.
9/15/2015: Back to the emergency room because of pain, I don't take pain medication but did this time to make my parents happy.
9/16/2016 (today): Remicade infusion #3 scheduled.
Currently taking 4 daily Lialda, SCD diet, 60mg prednisone, vitamin D, Canasa morning, Rowasa evening, VSL#3, turmeric, SF seed butter and spinach, eating 4000-5000 calories a day and have gained back 10 pounds.

Post Edited (godwarrior) : 9/16/2015 8:45:09 AM (GMT-6)

I am sorry. I don't know what advice I can really give. I think it's crazy to be suffering the way you are on 60mg of prednisone. You shouldn't have any symptoms at this point. It seems like it's refractory. I think you should consult with a surgeon, at least get a perspective on that side of things. You don't have to have surgery but you will be more informed. They are going to have to try cyclosporine if the 3rd infusion of remicade is ineffective. On 60mg, diet shouldn't matter. Rectal meds probably wouldn't do much either. When I was on 40mg, I didn't even take UC meds, it was pointless because my UC was 100% gone. I had one solid movement in the AM. As I tapered down I added everything back in. It was good for me to see whether the other meds were helping or hurting. Turns out they were doing nothing.

I've been talking to a surgeon throughout this whole thing and the last time I talked to him (about a week and a half ago) he thought surgery wasn't necessary at this point and that the remicade was working. The ER doc also thinks I might have Crohn's and I'm going to ask my GI to order a cat scan today.. I really don't want to have surgery, I was doing so great the past few weeks. I think the other meds are helping because they have helped in the past. I was having solid BMs that looked better than my pre-uc days up until a few days ago..

Is it possible you have c. Diff or another pathogenic cause.
If you are eating out and the food is handled by someone with very poor hygiene you can get c. Diff ( it is spread fecal oral or contracted by eliminated healthy microbes in the gut)
Ask your doctor to order a stool test stat.

My GI thinks prednisone doesn't really have that much affect on me because I was on 120mg of solumedrol with no signs of improvement when I was in the hospital. Perhaps I have a tolerance to steroids because I've been on and off of them all my life because of asthma. I really think it's my diet. I have been prone to inflammatory conditions all my life. I have asthma, I get folliculitus easily, have bad acne, and have ulcerative pancolitis. Since I changed my diet I have been feeling so much better. I can think clearer, my acne has been clearing up, and my colitis symptoms have improved drastically.

Ahh, I didn't think of C. Diff as a possibility, thanks Dikid. I'll ask my GI at my infusion today to order a test.

My wbc was normal with c. Diff. I still think you should get a stool test.
Remicade can work right away but it could also take more time it is really individual. Mayo clinic has a test that is called infxr and it tests for antibodies. They can also test to see if you are absorbing the medicine properly. I just got blood for the labs today it can take awhile as it has to be sent to mayoclinic and they only perform the testing about three times a week. Maybe look into that ( it's best to test right before your infusion when you have the least amount of the medication in your serum.
I would drop to forty mg. if you need something else maybe add cortifoam or other rectal meds

It may be helpful to ask your doctor for anti-anxiety drugs (if not daily, then something link Ativan or Klonopin that will work quickly and can be taken as needed) and an anti-spasmodic. Also, do you have any pain therapists near you?
I've had several abdominal surgeries (unrelated to UC) and also have polycystic ovarian syndrome, so my doctor suggested the anti-spasmodics because he was concerned that we would be unable to distinguish UC pain from PCOS or adhesions. The anxiety drugs may be a good idea because if you're like me, when you have a sudden onset of pain and blood, you feel panicked which of course, only makes the pain worse.

I think the symptoms actually were from taking all of your prednisone at the same time in the morning. I always had to split into two doses until I got down to 5 mg per day. Otherwise I'd feel really horrible - feverish, weak, nauseous, jittery with pain- by 3:00 PM.

I think you should split the prednisone into at least two doses per day and possibly three.

Personally, I don't think the food is the problem. You went from feeling really good to going to the ER in a very short time period. And I don't think food affects people like that unless they're celiac or have serious allergies .

But, bigger picture, if you're on 60 mg of Pred per day and your third Remi infusion and you're not feeling great (which you were until this episode), something is wrong. Definitely time to explore non-UC possibilities like c. Diff., blockage, diverticulitis, appendix, etc. Just because you have UC doesn't mean that this is specifically UC related.