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

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Rebel_runner
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Date Joined Dec 2016
Total Posts : 34
   Posted 12/10/2016 5:14 AM (GMT -6)   
Is it true that the only thing the hospital can do for someone with UC is rehydrate them? I asked doc yesterday how would I know when things are serious enough to go to emergency room, and he said that all they would do was give an IV with fluids; that THAT is all the hospital can do for someone who is having flare-up issues...my husband has UC, and as his caregiver, I never know when things are outside the perimeters of "to be expected during a flare-up" and require immediate attention.

TroubledTurds
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Date Joined Jan 2004
Total Posts : 8334
   Posted 12/10/2016 6:25 AM (GMT -6)   
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 -
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 !

3timechamp
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Date Joined Oct 2009
Total Posts : 882
   Posted 12/10/2016 6:33 AM (GMT -6)   
Sometimes u have to go. I f your extremely weak from dehydration bc of the big D then u go to hospital when it doesn't look like the D will stop anytime soon

Rebel_runner
Regular Member


Date Joined Dec 2016
Total Posts : 34
   Posted 12/10/2016 6:39 AM (GMT -6)   
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"...

iPoop
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Date Joined Aug 2012
Total Posts : 12516
   Posted 12/10/2016 6:46 AM (GMT -6)   
The emergency room can treat severe dehydration (attach an IV), pain (administer pain meds and put you on IV steroids), anemia (arrange an iron infusion), and can admit you to the hospital. However, the ER isn't familiar with specific chronic illnesses like UC and will refer you to your gasteroenterologist for many uc specific complaints.

What medications is your husband currently taking for his uc? Did your recent gasteroenterologist visit change his medications?

When were flaring we're miserable.
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Lialda, 10mgs pred (tapering)

When you're in the bathroom as much as me, you're comfortable: feet elevated, hot cup of tea, on the cellphone with a sleeping parrot on shoulder.

Post Edited (iPoop) : 12/10/2016 5:50:16 AM (GMT-7)


Rebel_runner
Regular Member


Date Joined Dec 2016
Total Posts : 34
   Posted 12/10/2016 6:57 AM (GMT -6)   
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.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 967
   Posted 12/10/2016 7:18 AM (GMT -6)   
Yes, spouses and close family members get a crash course on how terrible this disease is and unfortunately how well informed (or not) your GI /medical community is. Your GI is wrong and your hubby sounds like he needed to be there a long time a go. UC can easily get out of control and cause skin/liver/joint issues and uncontrolled inflammation especially causing him no bowel control (like me) is even more difficult to get under control the longer the flare.

The hospital can immediately get him started on a biologic like humira, remicade etc, do transfusions, give antibodies, pain control, run tests etc. and get him stable. Depending on where you live, they may provide support groups, nursing care etc etc. It should be a place to get him out of crisis and it sounds like he's there.

What diet is he on? Did his GI run bw? I'd assume potassium, iron, vitamins d is low and WBC is very high.

Hope Humira hits the spot quickly for him. Best wishes
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
Flaring 3 years. Currently dealing with fistulas including rectal/vag and vulvodynia caused by IBD
started Humira Sept 1, 2016. 80mg weekly

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1565
   Posted 12/10/2016 7:22 AM (GMT -6)   
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.
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

Rebel_runner
Regular Member


Date Joined Dec 2016
Total Posts : 34
   Posted 12/10/2016 7:40 AM (GMT -6)   
The only lab work he had done yesterday was a TB Gold test, hep test, valley fever test, as well as a stool sample test. Not sure if anemia shows up in the stool test or not? Currently, his feet/ankles are very swollen, which seemed to come on after the trip to the doctor. Is it being anemic that prompts the blood transfusion, or? All I know is that the color of his face is a ghostly white color, and has been for some time now....

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1565
   Posted 12/10/2016 8:15 AM (GMT -6)   
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.
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12516
   Posted 12/10/2016 8:52 AM (GMT -6)   
It's a personal choice on whether to go or not. What does your husband feel about it? Does he think it's a good idea? He's experiencing the symptoms directly. I understand that as a good spouse you're worried, and rightly so.

Is he in any pain and if so, how much on a scale of 1 to 10 (ten being the most)?

How many bms a day is he having?

Is he weak or dizzy?

If your husband hasn't been moving around much in months and has foot swelling then I'd begin worrying about the possibility of clots and DVTs, we're much higher odds of having them especially during flares. www.mayoclinic.org/diseases-conditions/deep-vein-thrombosis/basics/symptoms/con-20031922

IV steroids could help.

It'd be good to get a CBC blood test and check his levels regarding anemia, wbc, etc.

I was often ghost white when flaring badly (20 bms a day).

Keep him well hydrated, it's important when we have frequent diarrhea. I'd drink a glass of water after every bm trip.
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Lialda, 10mgs pred (tapering)

When you're in the bathroom as much as me, you're comfortable: feet elevated, hot cup of tea, on the cellphone with a sleeping parrot on shoulder.

Post Edited (iPoop) : 12/10/2016 8:02:55 AM (GMT-7)


Rebel_runner
Regular Member


Date Joined Dec 2016
Total Posts : 34
   Posted 12/10/2016 9:29 AM (GMT -6)   
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...

Rebel_runner
Regular Member


Date Joined Dec 2016
Total Posts : 34
   Posted 12/10/2016 9:38 AM (GMT -6)   
I'm not sure what his pain scale is, but thank you for pointing that out; I'm going to ask him to rate it so I can hopefully get a better grasp on what he's feeling.

He is VERY weak and dizzy, which is obviously worse if he has to do any sort of bending over.

Potential clots are something that had never crossed our minds, so thank you VERY much for bringing that to my attention. I will encourage him to consider that when he is laying in bed, in hopes that he will try and walk around the house a bit, just to keep things moving and flowing.

As far as frequency of bm's: he told his doctor yesterday that sometimes it is 50x/day.

We are both learning just how terrible UC can be. When he was first diagnosed 8 years ago, the only symptoms he was having was bloody stool, so to him, it didn't seem like it was a big deal...boy, is he ever finding out that yes, it IS a big deal....

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12516
   Posted 12/10/2016 9:44 AM (GMT -6)   
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.
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Lialda, 10mgs pred (tapering)

When you're in the bathroom as much as me, you're comfortable: feet elevated, hot cup of tea, on the cellphone with a sleeping parrot on shoulder.

Post Edited (iPoop) : 12/10/2016 8:49:34 AM (GMT-7)


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5090
   Posted 12/10/2016 10:09 AM (GMT -6)   
You'll be much better off at the better doctor, it seems like your husband's is too difficult for the local GI to handle.

Buy your husband some depends and wetnaps. I'd just let it happen naturally and just clean up when you can.

I've been in your husbands position before, the local GIs couldn't handle my condition and I suffered which required a hospitalization for 10 days and I didn't get any better so I demanded a transfer to a university hospital which was better equipped to care for me. I got a new IBD GI and never looked back.

I think that your husband should start on Remicade before he tries Humira, it seems that UC patients do much better on it.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara and Sulfasalazine

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1565
   Posted 12/10/2016 10:22 AM (GMT -6)   
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.
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

Rebel_runner
Regular Member


Date Joined Dec 2016
Total Posts : 34
   Posted 12/10/2016 10:28 AM (GMT -6)   
The more I research things the local GI said, the more I believe he is the wrong doctor to go to. He went so far as to discourage my husband from coming to his office for instructions, etc. on his first dose of Humira, yet I read on Humira's website where you are supposed to get your first dose under the supervision of a doctor. I 200% agree that between Imodium, Depends and baby wipes, we NEED to make the trip to the preferred doctor. It's a 2.5 hour drive, but I think we can figure out some way to make it down there without having a complete mess in my vehicle.

Rebel_runner
Regular Member


Date Joined Dec 2016
Total Posts : 34
   Posted 12/10/2016 10:33 AM (GMT -6)   
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!

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5090
   Posted 12/10/2016 10:55 AM (GMT -6)   
Put down some plastic and a towel if you're worried.

Once you find the right doctor and the right medicine than your husband will most likely go into remission and live the life that he did before he got sick, flares suck.

Be careful with the Imodium, your husband might have c.diff so you don't want to give him too high a dose.

Try to bring your husband's medical records with you if they do not already have them on file.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara and Sulfasalazine

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4104
   Posted 12/10/2016 3:07 PM (GMT -6)   
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
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8334
   Posted 12/10/2016 3:41 PM (GMT -6)   
there is a lot the ER/hospital CAN do, but it's all about the docs/staff who treat you - and the availability of a GI who knows UC (not all do it seems)
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 !

CCinPA
Veteran Member


Date Joined Dec 2014
Total Posts : 976
   Posted 12/10/2016 4:02 PM (GMT -6)   
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!
57 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis
Current meds: Entyvio 7/22/16, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). omeprazole. OTC: Loratadine 1/day, multivitamin 1/day. Past: Apriso, Colazal, Lialda, Uceris, prednisone, azathioprine- had to discontinue due to elevated liver enzymes. Stopped the homemade nopal water and will use it if I flare.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10532
   Posted 12/10/2016 7:27 PM (GMT -6)   
You can get some really substandard GIs, so even though a 2.5 hour drive is a massive pain up the arse, it would be worth it for better quality care. I could go 2 miles up the road to my local hospital for my IBD, but I drive an hour to a much better one instead.

Some people on this board are really down on going down to the ER, but don't be put off by them if your husband is seriously ill and in pain. It's rare, but UC can have life-threatening implications if a toxic colon turns into toxic megacolon. You've mentioned fevers already, which in my experience is usually a sign of more serious disease (assuming, of course, the fevers don't have another cause such as an infection).

At any rate, a few years ago I went to A&E several times for flare-ups/pain so bad I literally couldn't function. It was never a waste of time for me. I was usually admitted, given fluids and painkillers, and put on IV steroids. It was also a handy fast track to tests; not that I ever went in for that reason but I was usually given at least one test, such as a CT scan or flex sig, while I was in there. One time I had a blood transfusion for severe anaemia.

Whenever I went to A&E they would take my temperature and do a blood test, the results of which took about an hour to come back. I'm not sure if they do the same in the US for IBD patients who go to the ER. At any rate, if your husband's inflammatory markers are high enough that should be grounds for admittance.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

platinumpixie
Veteran Member


Date Joined Oct 2014
Total Posts : 730
   Posted 12/10/2016 8:33 PM (GMT -6)   
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.
43 yo; dx 2001 left sided UC
asacol max dose for several years
prednisone and rowasa when flaring
remicade since 2009; zofran, canasa
Factor V Leiden-blood clots x3
gabapentin, cymbalta for neuropathy in feet most likely from humira. Insurance denied lyrica so now on low dose methadone

Post Edited (platinumpixie) : 12/10/2016 7:44:44 PM (GMT-7)


otheym432
Regular Member


Date Joined May 2016
Total Posts : 55
   Posted 12/11/2016 1:30 AM (GMT -6)   
Depends entirely on the er. My local hospital is terrible. Last time I was in during a terrible flare up, I was severly dehydrated and anemic. All they would do was give me fluids and morphine.

I left and drove an hour to the hospital where my gi doctor is. They admitted me immediately. Gave me steroids, fluids, and iron infusion. My gi came in and saw me the next day.

If you can afford the visit it is at least worth a shot if you think you are in a dire situation, but it is a crap shoot.
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