Not sure what to do.

They're having trouble stabilizing him. Doctor said things aren't good. He's bleeding internally but can't do a scope to see where exactly the bleeding because he isn't stabilized. A surgeon came in and talked to us about having to remove his colon, which I'm assuming can't happen until he stabilizes as well. But I don't know. Trying to remain hopeful, thanks for the well wishes everyone.

What hospital is he at? I really think he should be transferred to an IBD center. If you are in NY Mt. Sinia is the place to go.

The PPI are good because steroids can cause reflux. He should stop em with the steroid taper. He needs to get off the steroids as fast as possible becuse of cardiac arrest. They have to get him on a therapy that works.

Probiotics will not do anything for him right now. In fact I would not give them to him until he is more stable.

He should have another stool test for infections.

He needs to be on either remicade or start cyclosporine and than use that as a bridge to vedolizumab.

If he goes for surgery, it is going to be a difficult operation becuse of the state of his colon. Make sure he has an expert colorectal surgeon.

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21 year old female
Diagnosed with severe UC on 4/27/15
Diagnosis switched to Crohn's 6/16
Remicade 10 mg/kg
Imuran 50 mg
librax and zofran as needed

Please excuse typos. Usually post from my phone.

thanks for the positive update - glad things are improving -

our brains are pretty resilient - kinda like the energizer bunny - they just seem to keep going quite well in spite of all the abuse inflicted on them -

hang in there -

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dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with

Just wanted to thank you all for helping me through this and giving me all the advice when I thought this was just a bad flare. I wanted to let you all know, despite how scary this is, that this being from colitis alone is extremely rare and unlikely, it's possibly and probably not entirely colitis. The GI just told us this. So I'm hoping no one fears this is a future for them, it's not. The GI said the flare didn't even look severe (they did a scope).

I had septic shock once and it makes you incredibly weak. My lungs were basically non functioning and I had a tube as well. It took a really long time to recover from all of it, but i did. I am sorry you're going through this. It's probably harder to watch someone than to live through it yourself. I was in a barely conscious state most of the time. They said my situation was caused by a bacterial/fungal pneumonia but there was never any bacteria or fungus found in lung or blood cultures. Never got any answers. They said the drugs can make you more susceptible. In my case, I was on heavy drugs, for him, I can't see it being the case if he was only on mesalamine. Prednisone alone can weaken the immune system enough to allow these things to progress, but interestingly, steroids are often used in conjunction with antibiotics to heal these infections. I ended up having surgery, but I ran through every medical option first. I am thankful I am better. Taking all those drugs is a huge hassle and compromising your immune system can have dire effects. I know you both want to get out of there and you want him to be healthy asap, but the best thing you can do is be patient. Even when he feels well, it's best to do everything very slowly. I had a seizure from moving around too soon. You think you're well again, but you're still very fragile.

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Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Anything new Ami52092? I hope things have improved. Wishing you the best...

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Moderator Ulcerative Colitis
John, 38, UC in histological remission
Rx: Remicade @5mgs/kg/8wks
I used to be very picky about public restrooms now "anywhere but in my pants" is just peachy.

Ami52092 said...
His brain damage is too severe and is irriversible. They still don't know exactly what caused this, getting conflicting stories. Now apparently he didn't have sepsis. They think it was something with his Colitis though. How the hell does this happen? I just don't know... he isn't gonna make it, that's the bleak truth. His brain will collapse if left on life support anyway.

He's only 24... Had so many opportunities in life. Had so much left to do. I don't understand this at all. Ulcerative colitis doesn't put people in this position, so how? Why?

I'm so sorry that this is going on. I don't have words to say, I can't say anything that will make you feel better. Just wanted to say that I am praying for him, family and you to get through this tough time. I know that it must be so painful. ((Hugs))
Please keep us updated.

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21 year old female
Diagnosed with severe UC on 4/27/15
Diagnosis switched to Crohn's 6/16
Remicade 10 mg/kg
Imuran 50 mg
librax and zofran as needed

Please excuse typos. Usually post from my phone.

This has been an incredibly sad situation and happened so quickly.

I hope you and his parents will continue to look for answers because it is such an extraordinarily bad outcome involving UC. And if it was due to his not being able to afford RX medication then our healthcare system failed him or his doctor who should have RX'ed him something he could afford.

I will be thinking of him and you.

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Diet=gluten-free modified Paleo+potatoes+low dairy, low fruit, no seafood (IBS),low fiber diet
In remission April 2010 after 10 years of UC after no remission ever
gluten-free (bleeding stopped), dairy-free (less IBS) started remission path+food diary
daily: 4 g curcumin pills (no piperine) and 1 Ginkgold tablet
rarely: VSL#3, mesalamine enema, Canasa supp

omgosh I have no words except to say that I am so so sorry that this is happening. So sorry.

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UC diagnosed in 2010 but had prob. in 2009
2 Lialda/day Rowasa nightly, periodic anucort supp, Cortifoam as needed(needed more than I would like)
VSL#3, slippery elm
Metamucil capsules
Trying Gluten free (why not!)

Very sad, I am stunned by what you are all going through. It is tragic. I agree, I don't understand how UC resulted in this tragedy. I will be keeping you in my thoughts.

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Female, 49, Vancouver BC
Pancolitis: Currently in remission

Jan-Mar2009: Asacol HD. Resulted in severe joint pain and no discernible benefit.
May26/2016 - : Mezavant 4800 mg

omg...very sad how devastating this has become.
q

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*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Post Edited (quincy) : 7/11/2016 8:43:20 AM (GMT-6)

Gosh.... all so horrible. Thinking of you.

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Age 60. Diagnosed UP 1983, UC 1986
Lialda, 4 pills a day
Metamucil - 2 doses/day
VSL#3DS daily, Multivitamin, vit. D3
6 MP, 75 mg