I have now destroyed son #2

Not a great night.
Indigestion he thinks too much OJ.
Soaking night sweats.
Stool about the same, mush I guess.
Now knees and hips starting to fill with fluid.
Probably too much saline and I guess steroids.

I also told him to demand to see colon pictures, and take picture and send to me.
Doc just came in so we will see where this goes.
OM

I saw colon pictures of which I cant seem to paste on here.
Looks like disaster area, cobble stone pattern everywhere.
Cobblestone might be crohns colitis.
I cant even find anything that looks this bad on internet.
gi talking about sending home soon.
gi concerned about knee swelling afraid of clots.
OM

Biopsy indicates UC.
Must have had a massive immune response to wreck colon so bad, this fast.
My other sons colon pics look like noting compared to this.
OM

OM,

Mine came on rapidly like your son's UC. I lost about 50 lbs in 2 months, my organs started to act up too. I at some point ended up with c.diff, but I'm not sure when I got it because my first GI was an idiot and never tested me for c.diff.

This was in 2005 so Remicade was just being approved for UC, I ended up in the hospital for 3 weeks and was given Cyclosporine because I was so sick and then they started me on 6-mp. They said either Cyclosporine or surgery because I was so sick, they thought Remicade might take too long to work.

OM, yikes, this is horrible.

My son had sudden onset pancolitis, too. His colon was so bad at age 13 that his GI told us to take him out of school and have him tutored while he was on high doses of preed and also Asacol. That was 9 years ago (age 13.)

He gave up Asacol about 5 years ago on his own, and has been scoped twice since then, the latest one year ago. Both times the GIs said that if they had not seen the photos -(the pedi GI 5 years ago and adult GI one year ago) they would not have believed it was the same colon: completely clean, no scarring.

Keep hope, OM!

You know, I learned a trick when I was on super high dose IV Pred when I first landed in the hospital... It's a little goofy, but Coconut water mixed with a little orange juice or whatever juice flavour you like worked wonders for hydration.

Pred makes me super thirsty - but like you say you retain a lot of fluids. I found the coconut water kept me satisfied, quenched my thirst and prevented me from drinking excessive amounts of water.

Anyway - something you could mention to him if he get's thirsty and does not want to continue the saline. My mom always brought me a ton of it in cans when I flared and took Pred.

-------
@songlady - I'm glad to hear of your sons recovery... that is a great story.

If it helps any, for my first scope I got to really bad prior to my appointment. My GI said go check into the hospital tonight because she was on duty the next day and she could do an emergency scope that way. Many GI's take turns working the ER's for emergencies. I was put out for the scope, but I awoke and asked what was going on... she said she could only go a few inches in with the scope because the inflammation was to bad and she didn't want to risk a perforation both physically from the equipment or just the pressurization by the procedure. She said she did manage to grab a small biopsy in the first part of my colon or distal colon I guess, but really needed to get up higher and hopefully around the first corner in the future.

I was up in the hospital room and she came around later and explained to me that when inflammation is that bad, they really need to get it under control as fast as possible. The idea (at least for me) was that if they could reduce the inflammation over a few weeks, they could get in, have a look throughout and do a proper biopsy from multiple places.

She said to me that they try not to use standard IBD meds other than steroids - (or a combo of steroids and antibiotics when Crohn's is visually suspected). That way they don't influence the 'disease appearance' to much. Then when they re-scope they can better visually determine if it is Ulcerative-Colitis or Crohn's or something else and then take proper samples for the lab.

So maybe this is his GI's plan as well.

She also said to me that visually it was Crohn's based on all the scopes she has seen. So I assume your son's GI made a similar guess that was confirmed by his biopsy.

Anyway - maybe he wants another look up higher, hence the steroids only approach initially as in my case.

Post Edited (Canada Mark) : 4/15/2016 8:42:44 PM (GMT-6)

Don't worry about it Mark it was just a random thought I had.
Sulfa drugs are pretty much listed for mild to moderate disease,if you in the hospital
then severe disease.
Quick recap:
Scope 1/2 way up, too dangerous to go more,pan colitis.
Psuedomembranes due to c diff, was initial diagnosis. Vanco and flagyl.
C diff-Negative by DNA amplification, stool culture negative for pathogens.
Stop vanco start solumederol, stay on flagyl. Flagyl mostly for anti-inflammatory effect.
Boy it is just so hard to believe, the destruction the immune system can create.

Now the question still remains, why after 37 years did this hit. He had backed off on smoking also.
Combination of stress from running 2 restaurants, being run down, getting the flu.
Did the flu ramp the immune system? Living at 7500 feet.
I did find out his oxygen saturation, 98%.

Another clue perhaps, it happens to both of us when we try and quite smoking.

Severe apothous ulcers in the mouth,so sever you cant hardly eat or talk.

Start smoking again and they go away.

In my own case, I had a lot of job stress at the time.

OM

Post Edited (Old Mike) : 4/16/2016 5:53:29 AM (GMT-6)

well, that looks nasty. I can imagine his utter discomfort from the ulcers in his mouth. Hope they're being treated as well for comfort-sake.

One thing you can't necessarily be sure is how long things were simmering, for it can go on for a while before even recognising any symptoms and before overload hits or before infection took over and his immune system was totally run down.

Was he on antibiotics for chest infection caused by the flu?

I'd sum it up as an all of the above and you'll probably never get to the sole reason. It's a relief he went to the hospital when he did.

q

I fully imagine how horrible time your son and you must have been undergoing, however, imo, with such dangerous symptoms you were describing, the IBD diagnosis should still be a sigh of relief. I don't agree that "this crap is with you for life", in the same way no one believed that hepatitis C could be curable one day. I wish your son a very quick and complete recovery!
btw the story of songlady's son is really great and optimistic :)

No idea when follow up is at this time.
The reason I am so Pi$$ed at this is I watched my other son fail IV cyclosporine and concurrent
solumedrol,and he was on it a week. This son only been on it like 3 1/2 days, and just solumedrol.
The may be able to assess some healing by ESR and CRP or other numbers I don't have.
The only thing I can go by is transit time and stool quality.
So far transit time slowed, but stool quality is just mush with blood.
Trying to get a full picture of blood work is like pulling teeth.
I did get one other question answered that it is CMV negative colitis.
If he gets to some formed stool, then I can agree that there might be some healing going
on. On the plus side he is steroid naïve so that helps.
OM

Post Edited (Old Mike) : 4/17/2016 5:24:57 AM (GMT-6)

Wow Solomon you gave it a good shot even FMT.
Thanks for the story.

OM

First son was 21 at onset, how I remember it well he was first scoped on his 21st birthday.
I was thinking to myself, he should be out at a bar, not being scoped.
This son, 36, I was 32.

I am going to text him early that if he sees a doc this am, I want a call.

OM

Post Edited (Old Mike) : 4/17/2016 6:04:06 AM (GMT-6)