Feeling hopeless

It's been a month now, a month being out of work and just laying in bed. A month with the same abdominal pains, 20-30 bathroom visits with mainly constipation, lack of appetite, fatigued and tiredness, night sweats and not sleeping through the night.

I've been on entocort for three weeks and it's been a week since my first remicade dosage and I still feel awful. My fatigue is so bad that I feel like I'm gonna faint when I'm walking around, like my legs are shaking and my heart is racing. All I can do is lay down. I have an appointment with my GI doctor again next Friday but there's not much they can do except wait for the meds to start working so I doubt that appointment will do anything to help me get better. As soon as something touches my stomach, I'm in the bathroom. I've sat here for weeks now sucking it up but I'm gonna have a break down, I'm pretty much venting to you guys, to people that understand, but is there any advice that can at least help my days get better? Right now each day is passing with no improvement and I'm on remicade which is the top dog of medications so idk what to do. Sorry for the rant, any advice to help with my symptoms is much appreciated

Have you been checked for anemia? Guessing you have but just wanted to ask based on your reported fatigue. I'm drawing a blank on the name of the RX that people take in addition to Remicade in order to get things working faster (not mesalamine based I think).

In the past I've felt as bad as you do now, cried and ranted and then continued to get up every day.
It takes a lot of mental strength to get through the bad times.

Post Edited (imagardener2) : 7/12/2015 5:13:14 AM (GMT-6)

everytime I go just a little bit of liquidy D comes out (I wouldn't say I have diarrhea when I go though), mucusy stuff, little blood, little balls of hard poop sometimes. Basically whatever squeaks around the big problem in there. I'm on a probiotic, about 4 days in on that, plus I'm on entocort which is a steroid that localized in the colon.

You should try a steroid enema. It works farther down than Entocort pills reach and it also covers a much larger area. In fact, Entocort pills are actually a bad option for UC because they release too far up. Uceris is much better than Entocort because it releases in a better area than Entocort for UC. I would do both Uceris and a steroid enema. What probiotic are you using? You should be taking one with at least 50 billion CFU's per day.

I had terrible constipation with my most recent flare and it sucked. Blood and mucus, tiny amounts of poo, and tons of bathroom trips. I second Gary's recommendation to try steroid enemas- that will cover rectal inflammation to a higher point than suppositories will. I also drank a ton of ginger tea and that helped with some of the cramping/urgency/nausea. Hang in there. It will get better.

I remember being in a horrible flare like that and the fatigue was debilitating. I would definitely phone your doctor because your hemaglobin could be very low. I needed blood transfusions on a few different occasions. When it's so bad you can't get out of bed, then it's likely severe anemia. Hope the Remi kicks in soon.

Can you get a flat x-ray to see how full of stool you are? Most urgent care clinics can do this. If you are full of stool, you may want to hit the Miralax (it's not a stimulant) and stool softeners with lots of water. You may also want to use Preparation H suppositories to help with any internal hemorrhoids that are there now from straining or will appear if you finally get moving again. Constipation is the pits. It sounds like your body wants to get rid of what's in there. I swell when I'm inflamed, so I end up with serious constipation and just a bit gets around it. Eating and drinking seems to turn on my colon and I'd always feel like I needed to go within minutes of swallowing. If you're really backed up, you may find you have a bit of diarrhea 12-24 hours after taking the Miralax and softeners. That doesn't mean you're in the clear. Sometimes the liquid is the stuff further up that the drugs are hitting and are working away around the harding stool that remains. You see this in young kids with encopresis.

Is it just your CRP that's high? Are you WBC's high, too? When I lost the ability to go from swelling and with my WBC's high, I ended up on Cipro & Flagyl for a few weeks. It was hell. Those antibiotics are hard on the body. I was able to go within 1-2 days after starting, though.

It could be constipation making you fatigued because fatigue is one of my symptoms when C sets in and I immediately work on resolving it. In my case not eating high fiber helps my gut not get constipated and adding healthy oils (coconut, olive) helps a lot (these oils are anti-inflammatory).

Drinking more water helps but never resolved C for me. It's a multiple-part process.

Prednisone didn't do much for me except increase my appetite which was needed, the side effects weren't worth it though. I was on it for months when I was first diagnosed.

I guess my question is, if I can get this really hard piece of stool lose and out, wouldn't everything else start to regulate again, considering I AM on remicade. In other words, will a laxative push it out, kinda like a one time deal? Maybe more? Just to get things moving again? I feel like my problem right now lies within hard stool , is it worth trying a laxative?

I am sorry you're feeling so bad. I agree that everything you describe sounds normal for a severe flare up. It sounds like tenesmus - it's the worst and I know it too well. I would definitely say prednisone but it sounds like you've had bad experiences with it in the past. The best thing you can hope for is Remicade #2. If that gets you going in the right direction, great!!! If not, you should see if your GI can increase the dose (not sure if they would do that before you finish loading). I did not respond to remicade at all. It was the most awful feeling ever. The medications for this illness are so limited.

The inflammatiin is causing the constipation, but the fact you are having loose stool as well,...your inflammation is probably the whole rectum and possibly just beyond.

tenesmus is most likely inflammation driven, so that's what you need to treat. It will cut back on the frequency and tenesmus asnyou heal....so that means rectal meds. I'd suggest a steroid foam such as cortifoam.

Don't do a laxative since your butt is active enough. An antispasmodic could also help even out the spasms.

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