Time to go to hospital...is this true?

ya, for most folks with UC, it usually turns out to be a waste of time - but every situation is different so it's so hard to say when to go and when not -

All I know is my husband looks like death-his face is so pale that it worries me. He often feels like he is going to pass out...hasn't really been out of bed in 3 months. Took him to his gastro doc yesterday, which was a 50 mile drive of pure hell for him. He has zero control of his bowels...often runs a fever in the evening of around 102...has difficulty urinating...I asked his doctor yesterday how I would know when it is time for him to go to hospital, and he said that all they can do for him in the hospital is rehydrate him...basically, don't waste our time in going. As a person who is on the outside of UC, trying to help someone who has UC, it is very difficult to know how to help the person who is suffering, which leaves me feeling completely helpless. I have no idea of what is "to be expected", and what is outside the perimeters of "normal"...

He is currently on 30mg of Prednisone, which isn't working, so he will be switching to Humira next week. Prior to the Prednisone, he had been on Llialda and then Apriso for 8 years before that stopped working. He has been in a full-blown flare-up for the past 3 months, although it began coming on about 8 months ago...I can see and understand how truly miserable UC can make a person..I've learned how debilitating it is, and feel for anyone suffering with this terrible disease.

Did his doctor do bloodwork? If he feels like he might pass out he could be anemic and needs blood or is severely dehydrated and needs fluids. For me in a severe flare IV fluids can do wonders.

For me every time I went to the ER I was admitted. A few days with fluids, pain meds, and sometimes blood transfusion really helped me a lot.

Personally I would got to the ER. The way you describe him sounds like things are way out of balance and he needs fluids at minimum.

Anemia would be found during a CBC blood draw.

Does his doctor have an on call resident or ER number? My GI always has a GI resident on call, they will speak to you over the phone then tell you to go to the ER and call ahead to the ER for me so they know I'm coming.

He is actually working with 2 GI doctors, the preferred one of which is 140 miles away...we don't trust the local GI doctor he sees (whom he saw yesterday), but his preferred doctor says he will communicate with the local doctor via telephone (which seems to offend the local doctor)...I have no idea if the local GI has any sort of on call help or not. I'm completely frustrated and don't know WHAT to do. The preferred doctor is who we want to help my husband, but my husband can't make it more than 5 minutes without having to go to the restroom, and since the drive involves traveling on the Los Angeles freeways, it is all but impossible to pull off and find a bathroom that frequently. Perhaps I can call the preferred doctor, and he can call our local hospital and let them know we are coming...I already know the local doctor will be of no help when it comes to going to the hospital. Argh!! So frustrating to see him in there suffering and not knowing what to do...

I'd advocate for IV steroids, IV fluids, a CBC blood test for anemia, and quicker application of a biologic like humira or remicade.

Take imodium an hour before leaving to slow down the bowels, put on an incontinence product like depends and go to where the preferred doctor can see him, himself at a nearby facility.

I'd give the best odds of having the best care rather than anything substandard.

The more you say about his symptoms the more it seems the local GI is not doing all he should. I would call the preferred GI, see what he recommends or what hospital he would want you to go to. The drive will suck but I've been there too and in the end it's worth it. I've had to load up on Imodium and wear depends to get to the hospital before.

I forgot to mention above, having trouble urinating is a worrisome symptom. Both times that happened to me it was because the rectal inflammation was so bad it was spreading in my pelvis and inflaming the bladder. He needs someone who will take all these symptoms as serious and urgent. The longer the inflammation is uncontrolled the greater the risk for bladder damage.

I just would like to add a HUGE "thank you!!" for everyone's help. You've made me think of things that never crossed my mind, and have been an immense help with all of your input and suggestions!

Your local GI is mostly right, albeit sounds a bit blunt. Unless the ER judges the symptoms more life-threatening than the local doc, they will re-hydrate and release. Especially since a biologic has already been prescribed. It needs time to work.

The ER can treat dehydration, and maybe the local doc dismissed that too quickly. It also seems that not enough thinking went into transition from mesalamine to Humira. It takes a while for Humira to work, and 30mg of pred is not that high a dose. IT makes sense that the flare is out of control if there is only a moderate level of oral pred an no other medication.

Unless the ER visit leads to admission, there will not even be IV steroids. Having the doc 140 miles away call the local hospital is likely useless - he will not have admitting privileges at a hospital so far away. If you reall want to have IV fluids and IB sterroids then ask the preferred doc to order an admission at the hospital he uses.

You do not seem to get on well or trust the closer GI. I can't judge him/her because I only have your account on an internet forum. This doc has prescribed a biologic med (which is a current standard of care) and advises that time is needed. This is true. Maybe the local doc could also be more helpful with symptoms; I can't really know the tenor of your visit. BUT, lack of trust alone is reason to switch. I would not make too much of the 1st Humira dose being at the doc's office. As Humira becomes more common, many people take their 1st dose at home.

The ER may be able to evaluate the swollen feet, because that sounds like the opposite of dehydration. Usually a good question when retaining fluids is about urination - but often with all the water leaving in D, there is very reduced urine. So low urine is not as big a warning for flaring UC patients as other people.

When people ask when to go to ER, the assumption that hospitals can do something for UC is built in. Often they can't. They can do IV steroids, although some people do not respond. They can test for c-diff, but your doc has already ordered a stool test.

As long as the amount of blood and D is within range of a bad UC flare, the ER may not admit. If there is excessive bleeding, to the point a transfusion is needed, they will admit. You can roll the dice and possibly the ER admits, and a staff GI is more to you liking the the one you see local. But if your local GI does rounds at that hospital, then that likely is who your husband is going to see in the hospital.

A hospital can also feed through an IV, and allow bowel rest by not having any food while on the IV. But this take days for the colon to respond to rest. It also requires admission because bowel rest is not done in ER.

A good option might be to see if more Humira is possible, and if 60mg of pred could be prescribed. Also, with the kind of urgency you are talking about, some rectal steroid might be useful. Unfortunately it will come out with the next BM, but over a few days he may be able to hold it longer an longer.

Also, ask for co-morbid IBS evaluation. If there is also IBS, then IBS drugs may help reduce symptoms a lot. Meanwhile you can experiment with small doses of Imodium.

good luck, UC sucks

I am shocked that your doctor didn't do a standard blood count test to check for anemia and basic blood chemistry with the high frequency that your husband is having. I would bet that he is dehydrated and low in potassium at the very least. Both of which can be dangerous. With the symptoms you describe he should go to the ER for an evaluation. At a minimum they will do blood work and get him rehydrated. He really sounds as though he should be admitted and get IV steroids.

You said he is supposed to start Humira next week. Do you already have the pens? If so, why wait?

30 mg of pred isn't going to touch a flare that bad. Had he been on a higher dose at all? You might want to think about getting a new doc that is closer to you. At a minimum he should be on 40 mg, possibly more.

Frequency 50x/day is about as severe as I have ever heard. The worst I ever had was about 20-30x/day and both times that happened I was admitted to the hospital because my blood counts were low and I was dehydrated. The first time I was there for 7 days. That was when I was first diagnosed. The 2nd time I was only there for 3 days getting IV steroids after a week of 40mg of pred didn't do anything at all.

Good luck!

Your husband needs to be admitted and managed as an inpatient. Forget your local doc, put husband in the car with depends and wipes and drive to the ER at a teaching hospital in the closest large city asap. My personal experiences when I'm unable to manage at home are that I'm admitted through the ER. I skimmed through the comments but read enough so see that he's having upwards of 50 bm's/day and constant flare for 3 months. Personally, I wouldn't wait to call the new doc. Show up at the hospital, tell them how sick your husband is and he will be cared for properly. There is much they can do for him. I've never regretted an ER visit when I'm having a flare I can't manage at home which means either I'm too nauseated to keep anything down or I can't stay out of the bathroom with diarrhea (which is really blood not poop). It's great you've posted. You are being the advocate for your husband that he can't be for himself. Keep us posted. The local doc needs to be put out to pasture. He should be embarassed to call himself a physician.

Btw- Hubbie needs remicade not humira.