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Ulcerative Colitis
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Posted 6/22/2017 8:55 PM (GMT -5)
Fantastic.

After a crazy night of pain and low grade fever, my GI nurse sent me to the ER. They admitted me and here I lie. Two weeks ago it was just my usual left side on the CT scan....today they said I have pancolitis.

I'm so worried and disheartened. I was supposed to take my family on a vacation tomorrow that we've been waiting 6 months for. I was doing better than I've done since I got diagnosed then blam.

They are checking for c.diff again....the funny thing is my belly hurts but I havent been able to have a BM for them to test since I got here at 10am. Irony.
Posted 6/22/2017 10:36 PM (GMT -5)
So sorry to hear of your situation, esp. impacting a family vacay.
You tags indicate you are on no RX med, is that correct?
Are you allergic or bad results from RX?

Hope you get some help from medical people but a GI will have more answers so hope yours will visit or call in.
Posted 6/22/2017 11:17 PM (GMT -5)
that sucks there 26 :-(

so i'm assuming you ran into a naturopath ?? just curious. how did you wind up there and off meds ?

and you had a c-scope today ?

hope you get healed up soon and can reschedule that vaca !
Posted 6/22/2017 11:36 PM (GMT -5)
I haven't updated it. In the last few weeks I've been back on Prednisone and Rowasa. I've been preparing to start remicade, but then the GI couldn't see me for a few months and the flare that I failed immuran with cleared up. I was seriously feeling for awhile like the me before I was diagnosed. I was approved for remicade through my insurance yesterday, but now they are waiting to check out these temp increases.
Posted 6/22/2017 11:42 PM (GMT -5)
Troubled- I was failing immuran and pred but with a mild flare up. My GI told me to discontinue them as I ran out, but then my family had the flu and I missed an appointment. They couldn't schedule me again until June (this was December) so I was seeing a functional medicine doctor too as looking for probiotic and diet suggestions which my GI won't even discuss. It was interesting to see the biome analysis. I have almost no variety in my gut.

I actually started feeling really good. I was excited to see my GI and see what to do going forward to stay that way.

I had alot of stressors in May. I thought I was handling them well but maybe not.

I'm a hot freaking mess.
Posted 6/23/2017 5:22 AM (GMT -5)
Sorry to hear you're in the hisputal but i hope it brings you some quick relief! Think you'll get on remicade quicker due to being admitted at the hospital?
Posted 6/23/2017 6:18 AM (GMT -5)
I'm sorry things have taken this turn for you, OP.....I will be praying that you have a swift change in circumstances !

In regards to the micro biome analysis, I've been researching this idea as I also suspect an imbalance of some sort. But I suggest putting too much stock in the accuracy (at least at this point) might be a bad idea. Unless you know of a better and more consistent company than these two?

https://www.sciencenews.org/blog/gory-details/here’s-poop-getting-your-gut-microbiome-analyzed

2009-mild proctitis, easily cured w/ steroid enemas
2016- proctitis/colitis
2017- dx chronic UC, in flare since Dec 2016

Tried but failed for current flare:
Asacol enema & oral pentasa (med induced lupus).
Hydrocortisone enema (constipation).
Dietary miracle cures, too many to list.

Brand new RX yet to start:
Uceris

Post Edited (MarjieKay) : 6/23/2017 5:21:01 AM (GMT-6)

Posted 6/23/2017 6:38 AM (GMT -5)
It's kind of like what came first the chicken or the egg? Nearly everyone with UC has a messed up microbiome in their gut. Is that a cause of UC or just a symptom of having UC? I vote for the later of those two.
Posted 6/23/2017 7:50 AM (GMT -5)
Thank you.

I was dubious but hopeful. I had in my mind I was gonna be the person who'd be okay, like so many success stories, but I'm now the person crying in the hospital for them to cut it out because I can't take the pain anymore.
Pain meds aren't doing jack and i just threw up from the pain of a BM...I'm so hungry my stomach hurts but scared to even eat this nasty jello. I just wanna say sedate me or something.


Apparently insurance won't cover remicade in the hospital they said. Last I heard whenever they discharge me they'll arrange for me to go straight for my infusion. I'm scared but miserable enough to not even care.
Posted 6/23/2017 12:49 PM (GMT -5)
Hugs Amanda....were you able to have stool testing done?

q
Posted 6/23/2017 2:06 PM (GMT -5)
Wow that sucks they won't let you have remicade in hospital. How stupid is this getting with insurance and medical stuff! They care more about their $$$ and rules than the patient. That is seriously F**cked up!

So sorry you're so miserable and had your vacation messed up.
Posted 6/24/2017 6:42 AM (GMT -5)
Did that c.diff test come back yet?

I'd find a new GI who can see you more often, 6 months is malpractice.
Posted 6/24/2017 6:53 AM (GMT -5)
C.diff is negative thank goodness. So I'm just on a ton of solumedrol/pred IV till they can get me to a point to release me and start me on Remicade.

I do want to switch...the GI I see now is close to work, but I live an hour away and I'm in the hospital at another location, same system. The guy who came to see me yesterday seemed nice and my PCP had already put in a refferal for them but my appt. Is July and i just need to start this Remicade and feel better soon.i was gonna ask today if i could start out here or of we would delay everything. It's all carillion system.
Posted 6/25/2017 4:35 PM (GMT -5)
So sorry for all that is going on with you!!!

Maybe your PCP could call the new Gi and ask for an expedited appointment for you. My GI did this recently for me to get me in quickly to a IBD specialist. What could have been at least an 8 week wait was only 2 days.

I'm still kind of a newbie here but wanted to mention that at my specialist appointment he was pleased to know that I have been taking Nortriptyline. In fact he mentioned upping the dose. I told him I have had great success with pain management since being on this med and he wasn't surprised. I've been flaring for months now but the pain part of current flare has been managed fairly well. Past flares I would have been curled up in the fetal position for a good portion of a day. I take 25mg at bedtime each night.

I hope you find relief soon. Take care
Posted 6/26/2017 11:20 AM (GMT -5)

FlowersGal said...
Wow that sucks they won't let you have remicade in hospital. How stupid is this getting with insurance and medical stuff! They care more about their $$$ and rules than the patient. That is seriously F**cked up!

So sorry you're so miserable and had your vacation messed up.

Problem is.....good conscience and the "right thing to do" doesn't pay the bills or make money....
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