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

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NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 10532
   Posted 12/11/2016 6:56 AM (GMT -6)   
platinumpixie said...
Btw- Hubbie needs remicade not humira.


This.

He may also need extra Remicade to get what sounds like severe/fulminant disease under control. Folks with very severe disease have tons of TNF (an inflammatory protein) in their body, which standard doses of Remicade aren't enough to neutralise. Some folks need double doses and to have the infusions brought much closer together (e.g. once every 4 weeks instead of once every 8 weeks).

Rebel_runner
Regular Member


Date Joined Dec 2016
Total Posts : 34
   Posted 12/11/2016 7:06 AM (GMT -6)   
I just spoke with my husband, and asked him how many times he had been in the bathroom throughout the night, and he said about 100. I then asked him if he had a BM every single time, and he said that he had a little, but not as much as the previous night. I forgot to mention that his mouth is filled with canker sores as well...I am trying to express my concerns to him about more serious damage happening, and I am being met with resistance (aka denial). I feel completely handcuffed, because whenever I try and talk about the potential seriousness of things, he'll immediately get stressed, which sends his stomach into action, which obviously ends the conversation. I know that if I were to talk to the preferred GI, and HE were to say that my husband needs to go to the hospital, he would immediately go, so my only option seems to be to call him tomorrow and tell him what is happening. Talk about feeling powerless to help a bad situation....

CCinPA
Veteran Member


Date Joined Dec 2014
Total Posts : 976
   Posted 12/11/2016 7:47 AM (GMT -6)   
If he passes out, call an ambulance. He sounds like he is in bad shape.
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.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12516
   Posted 12/11/2016 7:51 AM (GMT -6)   
Generally anything over 10 bms a day is considered fulminant/severe and could land us in the hospital. Often we have tenesmus where we feel like we have to poop and nothing or barely comes out and that's from rectal inflammation. Based on what you describe here, he sounds very undertreated and stubborn. The reality is he might find himself in emergency surgery if he let's it go unchecked.
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.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5090
   Posted 12/11/2016 7:57 AM (GMT -6)   
platinumpixie said...

Btw- Hubbie needs remicade not humira.


I agree, definitely Remicade.
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

platinumpixie
Veteran Member


Date Joined Oct 2014
Total Posts : 730
   Posted 12/11/2016 8:26 AM (GMT -6)   
I totally agree with ipoop, if your husband continues in denial and resistance, he will end up in emergency surgery with no choices any more other than a colon resection. I can't impress upon you just how sick he is. May I ask how old is he? He's in a scenario where a cascade of bad events could happen if left untreated. What is his reason for not wanting to go to the ER?
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

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 967
   Posted 12/11/2016 9:04 AM (GMT -6)   
Holy smokes! My worst was 40 times a day and my hospital/docs did everything they could to get me out of crisis. In my case it was IVIG that saved me.

I'd absolutely call and ambulance. Swollen feet, cankers, dehydration and a very sore butt is not good. He hasn't slept or eaten. One of the benefits of being a wife is veto power! I'm sure he's cognitively delayed and unable to make any decisions. This sounds very scary and life threatening. Take away some of your fear by making the decision to get him treatment. You'll feel better knowing he's in the right place.

I've had this disease for 15 years. Every time I've gone to ER I've been admitted and treated with more than fluids.

I'm sorry your hubby is so ill. I hope you find the strength to get him to the hospital.

Take care of yourself.
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

Rebel_runner
Regular Member


Date Joined Dec 2016
Total Posts : 34
   Posted 12/11/2016 10:21 AM (GMT -6)   
Stubborn is definitely an accurate description, which means, unfortunately, I do not have the veto power that most wives probably have. I have tried everything I know to help him...researched countless hours on the internet...talked to his doctor....but when I talk to him about things, all roads seem to lead to him saying that the stress is making his stomach upset, and so I have no choice but to shut up. I'm ready to give up, and yet, can't give up. Considering the state of powerlessness he is putting me in, and this disease has put me in, I don't feel I should waste anymore of your time trying to get advice, because clearly nothing I do matters, in the end. I feel bad for anyone having to deal with this miserable disease, and I also feel for the people who are trying to help care for them and feel as powerless as I do...it all sucks, just in different ways. I truly do appreciate all of the information everyone has provided, because it has enlightened me in alot of areas that I hadn't even THOUGHT of. Now if only I could apply the knowledge, and turn it into action.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5090
   Posted 12/11/2016 11:16 AM (GMT -6)   
Are there any other family members or friends that can help you convince your husband?

You also have to realize he is not in his right mind while on Prednisone, it can really mess with your brain. Nasty stuff.

I had elective Colectomy surgery and it was tough, I can't imagine emergency surgery. Some times with emergency surgery you might end up with a perment ostomy and not a jpouch.
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

CCinPA
Veteran Member


Date Joined Dec 2014
Total Posts : 976
   Posted 12/11/2016 12:11 PM (GMT -6)   
You're not wasting our time. So sorry that he is beyond stubborn. ks is right ... prednisone really messes with the ability to think rationally. Hopefully he will be ok until you can call the other dr tomorrow. If he gets worse though just call an ambulance. Please keep us posted on how he is doing. Scary stuff.

Feel free to come here just for support for yourself if you need it.

Will keep you both in my thoughts
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.

platinumpixie
Veteran Member


Date Joined Oct 2014
Total Posts : 730
   Posted 12/11/2016 1:32 PM (GMT -6)   
I trust by now that you know stress is not your husband's problem. He's in a UC crisis and is jeopardizing his life. He has been beyond poorly mismanaged and inspite of his stubbornness, you can be educated to call "b******t" when he says nonsense. Call an ambulance whenever you think it's necessary even to take him to your local ER. Once there, have them transfer him to large teaching hospital for proper care. You aren't wasting our time at all. Good luck, rebel. Put that name to good use ☺️.
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

3timechamp
Veteran Member


Date Joined Oct 2009
Total Posts : 882
   Posted 12/12/2016 8:09 PM (GMT -6)   
Ive had UC for 31 yrs,i had a flare just last year where it scared me to death bc i was so dehydrated and wife and kids went to work and school.Had to call an ambulance,i found out then that Cortenemas were the magic meds for my UC.Spent 24 hrs in Emergency room where i came back to life[joke] with help of IV fluids,and Dr gave me Cortenema sample.If u have UC and are ready to faint bc of dehydration get your ass to nearest ER.

Blacjaguar
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 6/13/2018 9:38 PM (GMT -6)   
Soooooo update?? confused

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4188
   Posted 6/14/2018 10:47 AM (GMT -6)   
No, your doctor was totally wrong. They can give you pain meds and they can admit you to the hospital if they think your symptoms are severe enough. I've been admitted and then they can treat your pain, put you on IV steroids, give you fluids, and get you in for a scope quickly.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018.
Current meds: Delzicol, 6, 2xday; Rowasa nightly; singular and Allegra for allergies; Xanax. Have tried Bentyl, Donnatal, and Levsin; dont help.

MarkWithIBD
Regular Member


Date Joined Jun 2018
Total Posts : 26
   Posted 6/14/2018 12:03 PM (GMT -6)   
Last time I went to the ER they gave me IV fluids, pain killers, and then they contacted the on call GI doctor to get more treatment options. Then they put me on 120mg of IV prednisone!! I never take more than 40mg so I was sky high. I needed iron but where I live the ER does not give iron, they tell you to ask your GP to refer you to an ambulatory clinic. They will give you a blood transfusion though, if your hemoglobin is low enough. Last time I had IV blood they said their cut off for giving blood was a hemoglobin of 70, and mine was 65.

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 344
   Posted 6/14/2018 12:04 PM (GMT -6)   
This is a thread from 2016
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Tapering Pred. 7.5mg/2.5mg now

Blacjaguar
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 6/14/2018 12:20 PM (GMT -6)   
I bumped it when asking about the husband. I found the thread really useful yesterday but I'm worried about the poor guy!!! cry
Dx Proctitis w/ 1st pregnancy, May 2012. Dx UC, March 2013. Tx: mes enemas nightly. Worse post breast feeding, June 2013. Tx: mes enemas & pred 40mg to quick taper. Flare w/ 2nd pregnancy, start Sept 2013, end in 2016. Tx: Delzicol 2 caps x 3, mes enemas and Uceris daily
--Now: Started flare April 2018. Tx: mes enemas, Delzicol 2 caps x 3, quick pred taper from 40mg, VSL#3, Turmeric/Bromelain, CB
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