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Ulcerative Colitis
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Posted 4/8/2015 8:39 AM (GMT 0)
I just got out of the hospital yesterday after a week and a half stay there. It was the second time in a row after I’d been there for a week, then released, then collapsed and had to be readmitted for a week and a half again.

Basically I’m having the worst flare up I’d ever had since the UC first showed up 4 years ago. I’d never had this kind of pain ever and the bleeding just won’t stop.

The meds I’d been on stopped working a couple of months ago for some reason. In the hospital, during the first admission they just put me on Prednisone 60 mg per day and after a week the bleeding decreased and they released me. At home the pain and bleeding started up again and after a few days I ran a high fever (my previous med apparently not only stopped working but stopped my production of white blood cells, according to the doctors) and collapsed on the street and got taken back to the hospital for the second time. During the second admission, instead of giving me the Prednisone orally they just gave me steroids via IV (I’m not sure about the name or amount but they told me it was the maximum and that it was basically the same thing). So after about a week and a half the bleeding mostly seemed to have subsided and they got my blood levels regulated with blood transfusions and a lot of KCL too (the flare also caused hypokalemia). Yesterday, after the transfusion, my hemoglobin was up to 9.8 and potassium above 4 and so they decided to released me. They had switched me from the IV to the oral Prednisone (60 mg) the day before yesterday and that was when I started bleeding a bit again.

Anyway… the thing is… today I’m back home and this morning I’ve been bleeding like a faucet. It’s not that it’s diarrhea with blood in it anymore at this point… it’s just a ton of fresh, red blood that comes pouring out of me every time I go to the bathroom (which has been several times so far). I suppose some of it is probably related to the stress of being home and unmonitored… but I’m not sure how to shut that stress off and the fact itself of bleeding out again isn’t exactly helping…

I asked them again and again if this is the most they could do to stop the flare up and they said yes. The one thing I can think of is getting the steroids anally but they said that the hospital simply didn’t have the enemas for it in supply and they were unable to order it because of whatever reason.

Um….. does anybody here happen to know of anything… more that I could do to stop this flare? At the hospital they said all I could do was take 60 mg of Pred per day and just wait for it to start working… and my GP doesn’t know anything… and the gastro clinic that I normally go to are on vacation until the start of next week… so… not quite sure what to do here and kind of afraid of bleeding to death… literally.

Post Edited (Lilypad321) : 4/8/2015 2:46:09 AM (GMT-6)

Posted 4/8/2015 10:48 AM (GMT 0)
I am so sorry you are going through such a tough time. Does your gastro clinic have an on call dr for emergencies? You certainly sound like you qualify as one. Could your regular GP prescribe steroid enemas for you until you can get to talk with your GI? If you continue to bleed so badly you are going to need to get back to the hospital again. Where are you located? Is there a different hospital you could go to?

What meds do you use for UC? You can't just be on prednisone. I've heard that remicade is pretty powerful at getting a terrible flare under control. If you have already been all on all of the UC meds including biologics have you considered surgery?

I wish I had some suggestions that could help you. All I can think of is to try to get rest and drink plenty of fluids, but that's not going to be enough. All I can do is wish you well. Hopefully someone else here will have some suggestions for you.

Take care of yourself and get back to a hospital if you continue to get worse.
Posted 4/8/2015 1:06 PM (GMT 0)
I agree with CCinPA recc's. Get an on-call GI doc immediately, get some steroid enemas (plus some mesalamine enemas too) and use them at alternate times of the day. This can help bleeding stop but the oral pred is needed for your level right now.

And yes you need to be on an oral UC med plus prednisone. That's where a GI doc with your history needs to step in but you also need to be fully aware of your choices to be a full partner in what med comes next.

If you are collapsing in the street and being taken to ER you are badly under-treated. Get a new GI as soon as you are stable enough. Can you ask your primary doctor for a referral?

best wishes for a better day.
Posted 4/8/2015 1:12 PM (GMT 0)
Do you take any probiotics? I read your other posts and believe the antibiotics you were on made you worse. Many with UC do better taking mega dose probiotics of 50 billion CFU's or more, sometimes much, much more. VSL#3 is the most common one used. Mega dose probiotics can be expensive but they help in many. I also believe your diet needs to be looked at. Everyone is different but I have found that many UC'rs are low on the digestive enzyme DAO, which helps with eating dietary histamines. You can either eat a low histamine diet or I take DAO I buy from Swanson before meals. If you do have a histamine intolerance your UC symptoms will get much worse any time you eat high histamine foods. I assume the hospital tested you for C-Diff? You might want to get tested for that again to make sure you don't have it. What country are you in? So far your doctors seem very incompetent and stupid with capital I's and S's. You can't use steroids only as a treatment plan because the minute you taper down or off of them you will be right back where you started without a maintenance plan and being on steroids long term will wreck your body far worse than living with UC.
Posted 4/8/2015 1:31 PM (GMT 0)
Just awful...try IVIG.
Posted 4/8/2015 1:41 PM (GMT 0)
I hope you get better soon!!
Posted 4/8/2015 11:13 PM (GMT 0)
What UC meds are you on? Is there another GI you could call? I had to switch GIs after the one I had couldn't get me an appointment for over a month (he was an idiot too) and it was the best decision I ever made.
Posted 4/8/2015 11:43 PM (GMT 0)
i also think that enemas would be essential to stop the bleeding. But there's no need to panic, uc can sometimes be very bad and then unexpectadly improve on its own. You'll surely get over it soon and life will get back to normal :)
Posted 4/10/2015 8:03 AM (GMT 0)
have you tried the probiotic val #3? you can get it from costco, or other stores or online. and it has helped a TON of people on this site! it helped me go into remission!
Posted 4/10/2015 10:57 AM (GMT 0)
It's really irresponsible that you were discharged before the hospital observed you on oral prednisone to confirm you would remain stable after they removed the IV meds. Is this a community hospital, and is there a teaching hospital anywhere near you? I would do what you can to be admitted to a teaching hospital the next time it's necessary. When I was hospitalized I lived one mile from a community hospital, but my parents drove me an hour to the ER of the large teaching hospital where my GI practices.

Steroid enemas would be a good addition for you right now. Are you on Remicade or something like it...?

I am not saying this to add to your stress, but if 60 mg prednisone isn't enough to keep you stable at home, statistically speaking you may need surgery in the future (a large proportion of patients who become unresponsive to steroids eventually end up having surgery). It might ease your mind to make an appointment for a consultation with a surgeon to learn about your options and become comfortable with someone who could perform the surgery. There is no commitment associated with a consultation and no one will expect you to have surgery immediately just because you have a consult.
Posted 4/10/2015 8:14 PM (GMT 0)
I had the exact same thing with the blood. It was really scary. Please be very careful with that and have your hemoglobin monitored regularly.

If you feel like your current GI is at a loss, perhaps it's time to find a new one. I had a GI who had me on 60mg of Prednisone every time I saw him and that's just not the answer. I apologize if I missed it in your post but have you tried any biologics such as Remicade?

I agree with Liz above that you should consult with a colorectal surgeon just in case. Never hurts to be armed with knowledge. I'm just speaking from experience that losing that much blood is bad news.
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