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When do you decide its time for the hospital?

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Crohn's Disease
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Posted Today 7:15 PM (GMT 0)
Feeling at wits end and looking for some guidance. As mentioned last week, my daughter is progressively getting worse again. its like a 6 month cycle, or maybe my imagination. Blood back in stool regularly, vomiting too. (crohns both in bowel & esophagus )She is dropping weight, down 8 lbs in the last month. Down to eating very little as the BMs are as high as 15 a day, getting up 3-5 times a night. Still like a trooper she goes to school (even telling the teacher she has to head to the bathroom to throw up) and tries to have a social life.

She started Humira a week ago. Way too early to show effects yet. Our doctor at the last visit said surgery is the next conversation we have if Humira doesn't work. Surgery is the one thing we are trying to put off as long as possible and hopefully can avoid. I have a call into her GI, who is out until Monday to give her a status update. I am concerned about her weight loss, and of course the blood. I also fear hospital will equal surgery. I don't know what the hospital can do for us, and I know as soon as we go we will want to just go back home but I feel like I am doing nothing to get her better.

When do you decide it is worth the trip to the hospital?
Posted Today 8:00 PM (GMT 0)
Personally, I would take her to the hospital. I see she is on prednisone. They probably will have to up her pred dose to get her stable.  I have always hated being on pred but several times I had to go to the hospital to get stable.

Going to the hospital does not mean surgery. I don't think you should wait to go to the hospital.  A couple of times I waited to talk to my GI and all he said was go to the hospital. Just my opinion.

Greg

Posted Today 9:04 PM (GMT 0)
What has she been eating?
Posted Today 9:27 PM (GMT 0)
I am sorry your daughter is not responding to the Humira yet.

Has she been tested to determine her vitamin D level? Is she taking a probiotic or two? I take 2 types of probiotics, Align in the morning on an empty stomach and Garden of Life Primal Defense Ultra at night before bed. I also take a slippery elm during the day. These have made such a difference for me. Before my current regime, I was so sick and although the biologics did help initially, after a year or two on each, I no longer responded to them and was running out of options until I discovered what worked for me...

I would also like to suggest you go to crohnsdad.com and read what he did for his daughter. He was a firm believer in LDN, diet and supplements. He helped manage his daughters illness using those products. Unfortunately, he passed away from a heart attack but his website lives on to help others with children who suffer from this horrible disease.

Some other things I would offer is rectal meds such as mesalamine enemas, fish oil, Boswellia, the SCD, paleo diets, liquid diets and MM  .

Best of luck! Sending prayers your way!

Posted Today 9:40 PM (GMT 0)
The advantage of the hospital, is they can give your daughter IV steroids and IV nutrition (in case she is dehydrating) while she waits for the humira to hopefully kick in. It's really hard to know when it is time to be hospitalized unless you have something obvious like a bowel obstruction. Two years ago, I really felt so awful that I felt like I couldn't take it anymore. I drove myself to the doctor's office in the middle of a snowstorm and told him I felt too weak and ill to even drive home. The hospital was across the street from his office, and I was immediately admitted. In my case, it wasn't my Crohn's out of control (although that's what I thought at the time) but instead I had a bad c.difficile infection that was undiagnosed. If she is having bad D, make sure to get stool cultures to rule out infections.
Posted 11/30/2013 12:40 AM (GMT 0)
it doesn't sound like a bowle obstruction because even a partial one is so painful you can't eat or drink anything cus theres no place for it to go. when she throws up what color is it? when i was in the hospital they told me if it was green(disgusting i know)then that was a sign of an obstuction. any how i think you should go to the hospital anyway just in case. you dont want things to get out of control. i kinda went throgh the same thing when i was first diagnosed and my crohns was out of control i could barly eat and had a tough time getting any food down and my weight went from 170 to 120 pounds. thats when all the different meds started and all that jazz. since then you could say the steroids and humira have kept me afloat but not high and dry. you just need to somehow buy some time for the humira to hopefully kick in. good luck and hope she feels better. :-)
Posted 11/30/2013 9:28 PM (GMT 0)
I don't think its an obstruction. Mostly bile or whatever she just ate comes up. She is already as high as she can go on steroids so what we experienced before I don't know what they can do besides IV and about a week hospital rest. Thats my dilemma. She doesn't want to go and started crying as soon as we started talking about it. Hospital is only good for the first day or two and then it becomes a depressing pit we can't get out of. Emotionally I don't think either of us it up for this so soon. Humira to kick in after a week is a dream I know but sometimes you feel like dreams are all that get you through a day.

As far as food its barely nothing. Mostly shakes, apple sauce, nutragrain bars, if she eats 1 complete meal its a miracle. At least the weight loss makes sense.
Posted 11/30/2013 9:38 PM (GMT 0)
SupportiveMom, send me an email at [email protected]. I have seen this road your daughter is on and maybe can help.
Posted 11/30/2013 9:46 PM (GMT 0)
I don't know what to suggest at this point, other than what's been suggested.

How much Prednisone is she taking right now? She should be on 40mgs for a few weeks, and then start descending 5mgs a week, until done.

This should get her into remission, and buy time for the Humira to work.

IV steroids could be an option as well, but you may need to get her to a research hospital.

Hopefully things settle down with the pred soon. Try not to worry, which I know is almost impossible. There are other anti-tnf's available, and coming available. She's still very young, and there will be many new treatments coming. 

Posted 11/30/2013 10:04 PM (GMT 0)
Hospital stays don't always equal surgery. Hopefully they are wanting to give the Humira some time to work anyway. If she's really suffering (and it sounds like she is) it wouldn't hurt to get some IV fluids, something for the pain and nausea. I've had several stays like this, they also pump you full of IV steroids and antibiotics. It really can help get you back on your feet. My last hospital stay like that was in 2011, I was also bleeding, throwing up, and couldn't walk from Erythma Nodosum. A few days helped stop the bleeding, throwing up and I was able to walk when I left. Made a huge difference.

I'm amazed that she can go to school like that, what a strong young lady you have! I hope she feels better!
Posted 12/1/2013 3:32 PM (GMT 0)
So we have decided to stay home...for now. She has spent the last few days on bed resting. Hopefully it makes a difference. I know hospital doesn't equal surgery but right now besides IV and bowel rest that is all i see making the trip doing. Thanks everyone.
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