HealingWell
Search Close Search
☰

Bad flare. In hospital.

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 23 4
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/3/2016 11:08 AM (GMT -5)
Sara,

During the discussion with your GI what did he say that he hoping to discover with the C-scope? You are obviously flaring or you have c.diff. Can't he just treat your symptoms?

My GI always told me to come back for a scope after I recovered from a severe flare.

I'm not trying to encourage you to become an obstinate patient but I think medical professions need to give good justifications for medical decisions and leave it up to their patients to make the best informed decision for them. There are risks with a colonoscopy and your colon being so inflamed, I wouldn't be surprised if they weren't able to do a full colonoscopy due to the inflammation.
Posted 10/3/2016 11:21 AM (GMT -5)
Hi Keith,

It's pretty normal in my experience for them to want to take a look, and I've had scopes performed by fourd different doctors since 2007. I've never seen this guy before either so he has never scoped me, and my last scope was March 2015 while in remission. Im wondering why your doctor would want to scope you when you have no symptoms? Just for your check-up cancer screening?

If it comes back as c. diff, he said he will cancel the scope, but that is likely not what I have.

And dont worry, Im not worried about being seen as an obstinate patient...haha. I complain and dump doctors quickly if they do something I consider rude or negligent.

How is life with the j-pouch? Pretty normal or do you still have a lot of symptoms?
Posted 10/3/2016 11:42 AM (GMT -5)
I also have/had pancolitis, it wasn't going to move any further in my colon. My GI didn't want to scope me while the UC was very active were the flare sent me to the hospital. He would say to let things get stable and recover from the flare and then come back for a scope.

I like my j-pouch, it is much easier living with pouchitis than it was with UC. Most people don't have chronic pouchitis but I do; my pouchitis does respond really well to treatment, much better than my UC ever did.
Posted 10/3/2016 12:46 PM (GMT -5)
Sara14,

I hear you. you are going through a lot of the same as I did. I think we were diagnosed around the same time too. the last big flare I had even the steroids couldn't make it go away and I couldn't even get off the Pred before flaring again. I gave in and started Remicade. Best choice of my life, I actually have my life again. I've been on Remicade for 3 years now and only flared once when my GI took away my Imuran to see If I could stay in remission. Since then no flare! hope the scope goes well and they find the solution to make your flare go away.
Posted 10/3/2016 5:29 PM (GMT -5)
Glad to hear that, Keith. Your GI's logic makes sense. I think the other way makes sense too though.

Cyn555 -- Glad to hear the Remicade helped you so much. That is reassuring.

Im currently trying to choke down NuLytely. This is a lot nastier than I remembered...
Posted 10/3/2016 7:07 PM (GMT -5)
Hey Sarah that sounds awful I'm so sorry.

I see you do a plant based vegan diet, have you tried David Klein's Raw Vegan Healing Diet? I used it to get out off prednisone a couple years back. I still relapse like everyone, but it was quite a miracle to get me off pred.

Hope to see you well soon!
Posted 10/3/2016 7:10 PM (GMT -5)
Thanks. I havent tried it but will look into it. Thanks! Id be up for trying that! I think Im pretty close to being cleared out now, thank god...ha.
Posted 10/3/2016 7:17 PM (GMT -5)
Sure! definitely inform your doc, if you follow it to a T it will help your colitis, but you lose a ton of weight, it can be scary.
Posted 10/3/2016 7:20 PM (GMT -5)
Ok thank you. Im pretty light to start with (110 lbs), but I will definitely look it up. Raw vegan diets have intrigued me for a while. Although I do love cooked foods too!
Posted 10/4/2016 8:12 AM (GMT -5)
The gastro dr forgot to tell the nurses I wasnt supposed to drink anything today. So I had to ask them. They also didnt know I wasnt supposed to eat anything red or purple yeaterday until I told them that is what I was supposed to do in the past for prepa.. Basically I've been telling them everything since I've done this before. They gave me IV steroids the past two days and I asked if Im getting them today because you arent supposed to just stop those and the nurse said she went and asked but I dont think this nurse knows what she is doing. She said Im not getting them this morning and then a few min later said she would ask someone... Dont think it would be a good idea to suddenly take away high-dose steroids... ugh.
Posted 10/4/2016 11:44 AM (GMT -5)
That's horrible! Obviously the left hand doesn't know what the right is doing. Gotta watch them like a hawk! Sounds like you're doing a good job. Insist they contact your M.D. or specialist with regard to the Pred IV. You are right, they need to taper your dose before they stop it. Sheesh how frustrating!
Posted 10/4/2016 11:47 AM (GMT -5)
Sheesh......sounds like some may need retraining? Good thing you're keeping them on track.

Let us know how the scope goes.

q
Posted 10/4/2016 12:04 PM (GMT -5)
Make sure they deduct your $100 per question, consulting fee from your hospital stay (at this rate you might leave with a net gain, hehe). :-)

Seriously, that stinks they're so inept. Keep an eye on them and keep them honest.
Posted 10/4/2016 5:15 PM (GMT 0)
Sara,

Are you on the standard hospital floor or a GI floor? I've stayed on both types of floors and there is a big difference in the level of care if your hospital has a GI floor with nurses who specialize in gastro stuff.
Posted 10/4/2016 1:08 PM (GMT -5)
Just got done. He said it looks like infectious colitis and not my UC!!!!!! He's putting me on Cipro and Flagyl. Took me off steroids. My question now is...wouldn't infectious colitis also respond to steroids?

Keith...this is a fairly small hospital so there isnt a whole floor devoted to GI care. I found out ome of these things were mixups...I was supposed to get two doses of 30 mg steroids yesterday and didnt for whatever reason.

Thanks everyone!
Posted 10/4/2016 1:15 PM (GMT -5)
He said I had acute sigmoiditis. He asked if I had drank any water out of a lake or anything.
Posted 10/4/2016 1:17 PM (GMT -5)
Sara,

I think that is good news, usually infections are easier to treat than UC. It did sound like an infection because it happened so rapidly. What type of bacteria caused this infection? If it is c.diff then I'd request Vanco because it works so much better at treating c.diff than Flagyl.

I'd also recommend adding Probiotics to just help out your colon. Don't take the probiotics at the same time as the antibiotics because they will kill off the probiotics, so you need to space them out as much as possible. Florastor is a good probiotic.
Posted 10/4/2016 1:19 PM (GMT -5)
Infectious colitis diagnosis....that helps for treatment.

Pred lowers immune response to healing of pathogen infections, although it can help with inflammation. What type of infectious pathogen exactly? Hope they find that out.

Will you be staying in the hospital for a bit longer?
q
Posted 10/4/2016 1:19 PM (GMT -5)
to a point, inflammation is the body's defense against infection, so maybe getting off the steroids is good. hopefully the antibiotics wipe it out.

I hope they do cultures to find out what is infecting you. I also hope the antibiotics do not screw up you gut microbes and cause a UC flare.

good luck
Posted 10/4/2016 1:19 PM (GMT -5)
C diff came back negative. Im not sure. He didnt talk to me much after the procedure. I'll have to ask. I dont think the biopsies are back yet.

Yes, Id much rather have an infection than have to go on scary drugs like Remicade or imuran!!!! Thanks!
Posted 10/4/2016 1:26 PM (GMT -5)
DbwithUC...Ive never had antibiotics make me flare (knock on wood) so hopefully I will be good. Thanks!
Posted 10/4/2016 1:29 PM (GMT -5)
DbwithUC...Ive never had antibiotics make me flare (knock on wood) so hopefully I will be good. Thanks!

Maybe it did have to do with my race. I was eating out of aid station communal food pots and using porta potties with no soap for an entire day. Maybe I picked something up.
Posted 10/4/2016 1:33 PM (GMT -5)
Sara....definitely push for the results so you know. How isn't as important as what, because its obviously something you ingested.

It might be a good idea to find out if others are suffering from the same thing....you are are a good link to find the source.

q
Posted 10/4/2016 2:02 PM (GMT -5)
Yeah, I'll get the results. Another runner actually did tell me she had GI bleeding but that hers went away after about 24 hours. She said ultras are just rough on her..that didn't sound normal to me. I have never heard of any other runners having GI bleeding after a race.

Im kind of confused why steroids wouldnt have helped even if it was infectious colitis though.

Post Edited (Sara14) : 10/4/2016 1:34:20 PM (GMT-6)

Posted 10/4/2016 2:14 PM (GMT -5)
Steroids actually surpress the immune system's response. So, high doses of steroids actually work against you in situations where you have an active infection. Your body is trying to fight the infection but those steroids are hindering/weakening it's response, in your case. Infections need antibiotics.
✚ New Topic ✚ Reply
1234