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Ulcerative Colitis
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Posted 8/15/2010 3:45 AM (GMT 0)
Evening folks,

I am a late 20s guy with a job in the Midwest whose father over the last seven months, who lives in the east, has developed what has been diagnosed as UC. Over the last month or so, his condition has deteriorated to the point where he has been in the hospital for about a week now. He had 45 BMs in the last 24 hours (approx. 3x/hr most of the day, every two hours or so while sleeping), and is suffering from dehydration and suspected kidney failure as a result of his inability to retain water. He has a catheter in secondary to the kidney suspicions that, along with the IV hookup, makes the runs to the bathroom especially excruciating. I post this from his basement between days at the hospital. There does not appear to be any improvement.

I was totally unfamiliar with this disease before the beginning of the year symptom onset. I have no idea how anybody could live with what he is going through now. He gets IV steroids, oral steroids, suppositories, and the like, and is still just BMin' like crazy.

What advice do people who have endured/watch people endure such symptoms have for those going through it now? I feel like the doctors fail to appreciate/differentiate his individual symptoms and instead treat him very generically with, what I am sure, are symptoms that have helped in the past. Any help? Thanks.

CS15
Posted 8/15/2010 3:57 AM (GMT 0)
I am so sorry to hear of your dad's condition. UC is a horrible disease and many of us feel that doctors don't really appreciate what extreme UC on a daily basis is like. I never knew it could be fatal until my family doctor told me and then later I read of a man who died reading another forum. It really shocked me.

I don't have any answers except to hope you can contact specialists if his current hospital is not familiar with his extreme condition. Mayo Clinic could be a choice since he is in the east.

If it comes to a choice between removing his colon and keeping him alive the choice should be clear but that's a decision a specialist needs to discuss with him as soon as possible. I hope for the best for him. Find a good doctor who treats him like a person. Best wishes to him and you.
Posted 8/15/2010 4:02 AM (GMT 0)
imagardener, covered it well.

As a sufferer (and someone who has spent time in the hospital) I want to let you know how sorry I am to hear about your dad's situation. I know how helpless my husband felt at times watching me suffer.
I hope that even as I type that he will experience relief soon.
Posted 8/15/2010 4:11 AM (GMT 0)
oh my that is awful. I don't know what is going on, but it sounds like he may need surgery. I wonder if he is having adverse reaction to something like the suppositories, or something else he is taking. Some people have adverse reactions to the drugs for UC and can not use them, but I don't know if I heard of it getting so bad as his.
Posted 8/15/2010 7:24 AM (GMT 0)
I can't even imagine going through what your father's having. It's heartbreaking to hear.

Was your father on any antibiotics before these symptoms started? Does he have other health issues other than what's happening at this point?
What meds was he on when he was diagnosed?

Welcome to the forum....I hope your father gets the help he needs. I too would think that he may need surgery if the meds don't kick in and his kidneys are being affected.

How exactly are you getting the information about your dad?

Please keep us updated.
quincy
Posted 8/15/2010 1:26 PM (GMT 0)
Hopefully someone is talking with the family about surgery, especially if his current condition is not improving?

Sue
Posted 8/15/2010 2:18 PM (GMT 0)
Very sorry to here. Sounds like fulminant colitis, so time may be of the essence. Do whatever you can to have him looked at by experienced specialists ASAP. Something needs to be done and quickly since he is not responding to IV steroids. Cyclosporin is one option in these types of cases that you may wish to discuss with the specialists. Emergency colectomy is another.

Best of luck and keep us posted.
Posted 8/15/2010 4:00 PM (GMT 0)
Thanks for the kind words all. I am posting this from his hospital room during a BM. Finally the doctors are appearing to show some signs of concern after seeing the chart of his BMs for the last two days that I made. Nearly 100.

The steroids had helped in the past but don't seem to be enough right now. I've poked around and seen probiotics mentioned. I almost sneaked him in a few yogurts (he's on a liquid diet anyways) just to see. Easier chance of getting away with that than convincing some doctor to try something called probiotics, right? Thoughts?
Posted 8/15/2010 4:19 PM (GMT 0)
My heart goes out to both of you. I suffered with ulcerative proctitis for twelve years before my surgery.
First of all, insist your dad have a port a pot placed next to his bed. He shouldn't have to get up and try to make it to the bathroom. Two years ago I was in a similar situation and the nurse said it was no problem obtaining the port a pot.
What treatment/meds is being given to your dad? Find out as much info as possible. I made sure I was told exactly what meds and why they were given to me. Maybe in addition to speaking with the GI doctor you could talk to a colorectal surgeon to find out what your dad's options are. If surgery is needed, make sure the surgeon has a lot of experience in the type of surgery to be performed.
I am 64 yrs old and developed ulcerative proctitis at the age of 52. The colorectal surgeon that performed my surgery is chief of colorectal surgery at the Univ of Pa Hospital in Philly. He would not do a j-pouch on me because of my age and maybe because of my extended prednisone use. His name is Dr. Robert Fry and believe me, he is excellent.
Good luck and keep us posted. I will keep your dad in my prayers.
Posted 8/15/2010 4:48 PM (GMT 0)
Regarding probiotics: your dad is in a crisis. Starting probiotics now would be like putting a bandaid on a gushing artery.
I am a BIG believer in probiotics, eat homemade yogurt every day as well as supplementing with VSL#3. But they can't help your dad at the point he is at right now.

When the colon gets so inflamed that it cannot keep anything in it is when the uncontrollable BM's come in. I've been there in the past but never to the hospital stage. When he gets stabilized (out of the hospital) and can retain food and fluids and is out of danger that's the time to even think about probiotics. They are not a cure, just a help. Don't give him anything without his doctors knowing about it.

Your being there is the best thing possible to help him, taking notes of what meds are being given to him. Making phone calls to specialists (surgeons) to find out what is possible. Doesn't mean he'll have to have surgery but knowing what is possible helps.
Many many people have been saved by surgery. Knowing that it was a possibility gave me peace of mind until I managed to get my UC under control.

Are you the only family member on site? Has your dad given you the legal power to make decisions if he is out of it?
It is a big responsibility but he and you need to discuss it. Hopefully there are more people to help make decisions.

Call Christine's doctor if possible. People on this forum talk the truth because they've been there. Good luck.
Posted 8/15/2010 6:09 PM (GMT 0)
Thanks ImaG. Luckily I'm an attorney and I have all the legal stuff under control. I'm just being a factfinder and keeping track of all of the information right now. Trying to get enough familiarity to be able to converse with the important people. I appreciate the suggestions and am paying close attention. Thanks.
Posted 8/15/2010 8:11 PM (GMT 0)
Don't stop until you get a response from the doctors. As others have said, he might need surgery if the meds aren't working. :-(

If there's no improvement...something needs to be done SOON.

Good luck.
Posted 8/15/2010 8:15 PM (GMT 0)
I do hope they've done samples to make sure nothing else is going on.

Yogurt might not be in your dad's best interests...milk products can cause discomfort. I get it especially from yogurt, even the activia and other probiotic ones.

Please keep us updated. I'm glad you're at the hospital and one who seeks answers.

q
Posted 8/15/2010 11:21 PM (GMT 0)
You might want to ask if Remicade can be used in emergency cases such as this. It is safer than cyclosporin, but I don't think it is a quick acting.

High doses of VSL#3 (probiotic) have induced remission, so if the doctors think a probiotic is safe, this one has some good clinical trials that show it works for a sizeable group of people who are flaring.
Posted 8/16/2010 2:43 PM (GMT 0)
Suspected colon perforation, surgery today, may take the whole thing if it's not salvageable. Nasty disease, folks.
Posted 8/16/2010 2:55 PM (GMT 0)
Here's to wishing your father the best. I can't imagine how frightening this must have been. But there is life after a colon and after suitable recovery he should be able to do everything he did prior to surgery.

Sue
Posted 8/16/2010 3:36 PM (GMT 0)
Definitely is a nasty disease (I'm having a horrible time now myself); best of luck to your Father!
Posted 8/16/2010 4:36 PM (GMT 0)
Oh wow...It's definitely best to get his colon out...actually, all of it if he has UC.

Please keep us updated as to how he's doing. And please tell him our thoughts are with him during this frightening time. We wish him a good recovery.

q
Posted 8/16/2010 4:56 PM (GMT 0)
Oh, gosh, I'm just back from vacation and have been reading about your dad. What a horrible thing!
At this point - well, I guess he's probably headed for surgery by now. Any kind of surgery is difficult on one's body, so I hope he does well. He and you are in my thoughts during this time!

Please keep us posted as to how he does. It's great that you re there to become informed and be his advocate.
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