Remicade levels low and antibodies present

Solids are good but maybe there's some lingering inflammation as you're still having increased frequency. Rectal inflammation is funny in that you almost feel constipated and strain a lot.

Not sure imuran's causing fatigue *shrug* who knows.

When you find yourself wishing you were doing a prep so you can poop everything out, something is very wrong. :/

I’m so sorry you are going through all of this Sara! It sound very confusing and I know that when things get complicated and my iron is low, I have an even harder time dealing with my stress levels.

Thanks guys. My iron is still in the low side of normal. Rosie...I apologize for suggesting you try to get out for a walk to help your fatigue because now I know what real fatigue is like and a walk isnt gonna help and may not even feel possible. Lol!

Yeah, I know they can take a while to kick in. But the Remi only worked 2 months, so I don't have high hopes. And half of me would rather just have surgery than increase my risks for cancer!! The HPV increases my risk for anal cancer. I really wish I had never gotten that. And if immunosupressants are going to keep making the warts come back and wart treatments may keep making my UC flare, that seems like a neverending cycle of hell. Ok, I'll try to stop going down the rabbit hole now.

I've been on pred for almost 1.5 years now continuously and before that once or twice every year since 2013 for 6-8 wks a pop. And now I can even go below 50 mg!!! At least this summer, all I had to do was stay around 10 mg. And I'm having pain in my right foot for a week now and am scared I have a stress fracture. But all Ive been doing is going on 1 or 2 mile walks! I went on one 2 mile run. I need to make an appt with the sports medicine doctor, I guess. Surely it can't be a fracture because I've been so inactive, but it sure fits the symptoms... I've never had one before in my life and I used to be a big runner. But pred may have ruined my bones.

So yeah, I'm feeling over all of this. My quality of life has pretty much sucked the past month.

Thank you! I wish they could, too! I felt normal for a few days after the first loading dose but maybe it was just the 50 mg pred finally kicking in after 3 weeks? I don't know. I feel ok right now, not terrible. It's just concerning I can't seem to taper pred at all right now. Hoping this fatigue goes away, too, as it is getting me a bit down. Switched the Imuran to nighttime last night. Have mild nausea but not bad and I have zofran to take. And that may be from all the straining on the toilet, too. Sometimes that makes me feel a bit nauseous. Could be a lot worse. Was freaking out this morning. I keep looking up cancer stats...lol.

My doctor wrote today that my CBC was normal. It showed I still had a slightly high WBC, but it must not be noteworthy/significant enough to him. So I guess that's good.

Fleet enemas are over the counter but not sure that will solve your problem. You have tenesmus, the frequent urgency and straining caused by rectal inflammation. A normal, uninflamed rectum is meant as a storage area, collecting and holding small bits of stool that arrive slowly and intermittently from higher in the intestine over the course of roughly 24 hours, we evacuate it when it is convenient. When empty, the intestine resembles a sock laying flat in a drawer, with opposing walls touching each other. When small bits of stool arrive, it expands and fills that space, and exerts pressure on the walls. When your rectum is inflamed it is sore, raw, and bleeds. When that swollen tissue is expanded and pressure is exerted it hurts like hell, our muscles spasm as a reaction (to get that irritant out of here as fast as is possible) and we experience urgency and frequent bms. The rectum is no longer a storage area as intended which collects stool over 24 hours, rather the stool bits are on the highway to hell (*rock guitar riff*) and get outta there fast. Thus our misery.

I'm getting my DEXA scan moved up, too. That office lady was wrong that insurance only covers it every 2 years. My insurance just told me it is covered once a year at 100% for preventative care since I'm at higher risk.

Oh really? It was originally scheduled for January, but I was so worried that I moved it up. I won't be off pred by Dec. 20 (the date I rescheduled it for). It sounds like I can get a free scan through insurance every calendar year. The boot store was out of boots. Have to go back tomorrow or Friday when they get another shipment in.

Hopefully I dont gain another 20 lbs now. Very stressed out.

Ok, thank you.

Thanks, Rosie! I've got my walking boot now. I'm eager to get my bone density test Dec. 20 and assess the damage and make a better game plan. And hoping the Humira works and soon so I can get off the prednisone. I have my second loading dose tomorrow. I feel pretty good, still have "compacted" poop, for lack of a better term, lol. On the constipated side.

Are you taking iron supplements or just eating more of it? My crazy fatigue went away a day or two after switching the Imuran to night. I am still tired, but I didn't sleep great this week.

Oh wonderful! See — all those “normal” non UC-er people just don’t know all the fun they’re missing!!! 🤪🤪 lol!

Congratulations on the poop! I would celebrate , those are the best days

I’m taking iron supplements, lots of them! And watch my diet, plan to reduce my coffee to a few days a week, and I will talk to my doctor in a few weeks about infusions. But I’m thinking that with this ongoing blood and stool sample testing (which includes hemoglobin and ferritin), I can keep track, have goals, and supplement like crazy.