When do you go to the hospital?

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Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1121
   Posted 4/8/2011 7:05 AM (GMT -7)   
I've been in a bad flare since March 12. My normal weight for the past couple years was 125-130. I'm now down to 109! I have constant hunger pains and I think the UC is inching up my colon.
 
My GI isn't doing much ...just prescribed me Canasa 2x daily.  Mu intergative doc is trying me on LDN 4.5 mg and Budesonide suppositories 0.5mg 2x daily.
 
Felt horrible this morning. Sleep was inturrupted last night with frequent bathroom runs.  It's almost been a month!
 
So what makes you decide it's time to give up and go to the hospital?
 
41 year old female, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm -mild
As of 2/2/2011 up to 15cm - mild to moderate - ulerative procitis
Apriso 4 pills AM/ Canasa 2x daily
Started LDN 3.0mg on 3/16/2011, increased to 4.5mg on 3/23/2011
Folic Acid 1 mg daily / Probotics /Energy Multi-Plex / Vital-Zymes Complete / BSP-201
Microgestin (birth control), Magnesium for leg cra

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 3823
   Posted 4/8/2011 7:17 AM (GMT -7)   
First find another GI if yours has not intervened after seeing weight loss of 15-20 pounds in 3 weeks, you need strong intervention.
You are the only person who can determine if you need emergency care that a hospital provides, not us.

Why do you have hunger pains? What are you eating or not eating? Are you thinking hospital to get nutrition?

What do your last blood tests say? Anemic? Inflammation high? (obviously it is with sleep interruption BM's)

Please keep drinking lots of water to prevent dehydration until you figure out what to do. And eat as much protein as you can handle, easiest to digest and supports your body.

If it were me (and I've never been that close to this decision) I'd call my GI and say I'm feeling so bad I'm thinking about the hospital. If that doesn't spur a response you really have the wrong GI.
In remission April 2010 after 10 years of UC with no remission ever
Jan 2010 began SpecCarbDiet (modified to remove dairy, fruit & juices,)
Gluten-free=bleeding stopped in 3 days, 95% remission in 5.5 months on SCD
SCDiet: Gluten/grain-free, starch-free, low carb, honey as sweetener
(9)Balsalazide+(6)Citrucel, mesalamine enema as needed
Spinach daily, (1) VSL#3 nightly

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1121
   Posted 4/8/2011 7:49 AM (GMT -7)   
Thanks for he guidelines! It really gives me something to chew on!
 
I think I have hunger pains because of malnutrician. I'm trying to eat samller meals but more frequently through the day. I feel better if I keep food in my stomache.
 
I got liquid D so none of what I eat stay long enough to fuel the body.  I'm in so much pain and experience cold chills on the toilet that my toes curl and tears stream down my face. Doing meditation on the toilet helps get me through it.
 
Eating a gluten free, non-dairy diet right now and trying to eat protien and up my carbs. It's a big change for me as I used to eat out alot!
 
 
41 year old female, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm -mild
As of 2/2/2011 up to 15cm - mild to moderate - ulerative procitis
Apriso 4 pills AM/ Canasa 2x daily
Started LDN 3.0mg on 3/16/2011, increased to 4.5mg on 3/23/2011
Folic Acid 1 mg daily / Probotics /Energy Multi-Plex / Vital-Zymes Complete / BSP-201
Microgestin (birth control), Magnesium for leg cra

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10483
   Posted 4/8/2011 10:25 AM (GMT -7)   
If you're in that much pain, I would call my GI and tell them how serious it is. I don't understand how they cann brush you off when you've lost over 15 pounds and you're in extreme pain. I wouldn't go to the hospital if I could make it through the night but that's just me. I've heard of people going to the hospital for less symptoms than you decscribe so it's really up to you. Do you have a GP you can call if necessary? Or as ima said, definitely find a new GI today! The problem is that some GIs take a while to get an appointment and it's hard to make decisions without knowing your full history. You need to get moving on getting your records transfered so you can get in to see someone before you're feeling worse and it sounds like you're already feeling pretty bad. How many times a day are you going? I never eat when I am flared up badly because the more I eat, the more i am on the toilet but I usually have no appetite. I could eat one small meal and pay for it 10x on the toilet. I am so sorry you're feeling terrible. I hope you can get in to see someone today. They may give you prednisone which is never ideal but it may be theonly thing that will get you out of this quickly if you're already on Apriso, Canasa, steroid enemas and LDN.
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa | Currently: stable - Asacol (3200mg) + Canasa (nightly) + 6mp + Allopurinol + Prednisone + Ponstel + Klonopin + Ambien

quincy
Elite Member


Date Joined May 2003
Total Posts : 25832
   Posted 4/8/2011 10:32 AM (GMT -7)   
I think call the GI back and request to go on Rowasa. How often are you going daily?

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3252
   Posted 4/8/2011 10:48 AM (GMT -7)   
Years ago I was put int the hospital with less than you're going through right now..... but then a few times I've toughed it out, also.

Whatever, I agree with the others - you do need to call your GI and get his/her attention!

It sounds as if you can't really afford to let this get much worse, so.... please do call and see what the doc can do for you.
Co-Moderator, UC Forum
Age 55. Diagnosed UP 1983, UC 1986
Asacol - 16 pills/day,
Rowasa and Canasa occasionally
Metamucil - 2 doses/day
VSL#3DS 2 x daily, Multivitamin, Calcium and D
homemade yogurt each day
doing well!
Son, 17, dx pancolitis 2007, in remission

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1121
   Posted 4/9/2011 3:52 PM (GMT -7)   
I'm going to ask my GI for a referral to Mayo Clinic for a second opinion. I can't continue to live like this. It been a month since I got worst and it's been since Jan 2010 I've been in a flare!
41 year old female, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm -mild
As of 2/2/2011 up to 15cm - mild to moderate - ulerative procitis
Apriso 4 pills AM/ Canasa 2x daily
Started LDN 3.0mg on 3/16/2011, increased to 4.5mg on 3/23/2011
Folic Acid 1 mg daily / Probotics /Energy Multi-Plex / Vital-Zymes Complete / BSP-201
Microgestin (birth control), Magnesium for leg cra

nightside of eden
Veteran Member


Date Joined Sep 2009
Total Posts : 523
   Posted 4/9/2011 9:11 PM (GMT -7)   
honestly, I would go on rowasa because of the proctitis, and talk about starting prednisone, and possibly remicade......i think it is good your doc isn't talking the intense route, but if your losing that much weight you need a more intensive therapy in my opinion....

Ernee
Regular Member


Date Joined Apr 2011
Total Posts : 134
   Posted 4/10/2011 12:00 AM (GMT -7)   
I am experiencing the same situation. Been having a flare for almost 2 months now and lost 12lbs. I feel weak and also missed many schools days but im going to continue and try to go in remission with my diet. I dont want to be put on any stronger medication. Last time I went to the doc because of a flare, he gave me prednisone and I couldnt focus in school because of it which resulted in not so good grades.

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 4/10/2011 1:08 AM (GMT -7)   
You should find another GI. I would go to the hospital if I was seriously dehydrated, anemic, or suffering from megacolon.

superdoo615
Regular Member


Date Joined Feb 2011
Total Posts : 52
   Posted 4/10/2011 7:38 AM (GMT -7)   
I agree with everyone here .. I have been to the hospital for the same maybe just a little less than what you are describing and I ended up being there overnight cause I was very dehydrated and had developed an infection. (Im not saying thats your case.. it just happened to me) You know your body best so if you feel in anyway that you should go.. you probably should
-------------------------------------
Dx. June 2009
Current treatment:
Lialda x3 - Align (probiotic) - prednisone - percocet (as needed) - imodium - v2 e cig

Have taken:
Asacol - pentasa - levaquin - metronidazole - canasa - 6mp - effexor

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 712
   Posted 4/10/2011 9:13 AM (GMT -7)   
I would probably go to the hospital. For me, the deciding factor for going to the ER was always when I felt like I couldn't keep up with my hydration because I was going the bathroom so much.

Still, it seems like every time I would go to the ER for UC, they would basically pump me up with IV steroids and painkillers and then send my back home where my symptoms would return the next day once I was back on oral meds. You really need to get your GI to help you. For my last flare, after two separate trips to the ER for symptoms very similar to what you have, my GI finally decided to do an emergency colonoscopy to see what was going on, even though she kept saying that she didn't think I looked that sick. I was a very athletic and health-conscious person, which probably had something to do with that. However, once the colonoscopy was underway, she found severe inflammation and she couldn't even scope that far for fear of perforating my colon. I was immediately admitted to the hospital next door for two weeks. I was going the bathroom at least 25 times a day and went from 130 pounds to about 105 in two weeks. I had a lot of bleeding and could barely walk... even collapsed in my room one night because my weakened leg muscles could no longer support my weight. Pretty traumatic considering I had been climbing mountains two weeks before that. I looked like a skeleton and it seemed that there was no end in site for the weight loss. A week of high doses of IV steroids did nothing at that point and the docs recommended trying Remicade. If that didn't work after 5-7 days... it would be emergency surgery as I was declining so fast. I couldn't believe it had come to that. What had started as a pesky little flare had ended up escalating into a nightmare. I ended up getting the Remicade infusion which healed my colon enough to leave the hospital, but the severe side effects of that med had me opt for surgery a month later. I am so happy after the surgery and feel better than I have in years, so all ended up fine in the end.

I am not saying this will happen to you... it likely won't. Still, I learned through all this to not mess with UC. It is unpredictable and it is best to not try to guess what is going on. If you don't go to the hospital, get in to see your GI again very soon and be persistent. If they don't help you, see someone else. You know how bad you are feeling and you need to make them understand that and take you seriously.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Post Edited (Blueheron) : 4/10/2011 11:27:23 AM (GMT-6)


journey2health
Veteran Member


Date Joined Oct 2009
Total Posts : 2687
   Posted 4/10/2011 10:21 AM (GMT -7)   
Dehydration, severe diarrhea and anemia would send me to the hospital.
In remission--pancolitis. 8 Asacol, alternate Rowasa and Canasa daily, Psyllium husk, Probiotic -RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules, turmeric and yogurt, Vitamins. Avoid greasy, fried, spicy, citrus, dairy (except yogurt), red meat, caffeine, alcohol. Bipolar/anxiety/depression: lamictal, Lexapro; Sleep-zinc magnesium B6- klonopin or zyprexa if still can't sleep

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1121
   Posted 4/10/2011 10:37 AM (GMT -7)   
Wow...Blueheron...what a story. That's what I hope not to happen. I have a friend with Crohn's who works in the medical field and says the ER is no place to go...it full of interns and all they care about is getting you in and out...no long term solution there.

I'm going to try and plan ahead by going to Mayo Clinic. I was told they specialize in IBD and have a team of dedicated doctors who will review all your history and do a complete "work up" in one day. I even heard there are some blood test to indicate the effectiveness of some treatments. I'm hoping I can get there before I get too bad to travel. If my GI won't refer me then I know someone who will. I'll fire her if she doesn't!

So how have you been after surgery? are you able to exercise? I heard the colon is what carries our cooling system. Also I know some people still have times where they spend days on the toilet from time to time. seems like surgery to me is just like trading in one problem for another!
41 year old female, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm -mild
As of 2/2/2011 up to 15cm - mild to moderate - ulerative procitis
Apriso 4 pills AM/ Canasa 2x daily
Started LDN 3.0mg on 3/16/2011, increased to 4.5mg on 3/23/2011
Folic Acid 1 mg daily / Probotics /Energy Multi-Plex / Vital-Zymes Complete / BSP-201
Microgestin (birth control), Magnesium for leg cra

AZYooper
Veteran Member


Date Joined Mar 2010
Total Posts : 1170
   Posted 4/10/2011 10:57 AM (GMT -7)   
The key in getting into Mayo fast is the referral information they receive. If you are not getting along with your GI, maybe getting your primary involved would be a good idea. You could also call your primary about getting some basic blood work to check on your current condition.

Mayo reviews your records then sets appointments based on what they receive.You need to "sell" them on the seriousness to get in fast.

I think that it is a very good idea to go there. They specialize in difficult cases and setting up a plan. Everything is very efficient. My dad has been there and so has a good friend. They are very fast if your condition is serious. You sit down with a group of specialists and get a review at the end.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 712
   Posted 4/10/2011 12:20 PM (GMT -7)   
Peace&Harmony,

I had a couple complications with my incision after surgery, so it took me four months to heal instead of the normal two. Still, my ileostomy worked perfectly from the beginning so that is all I ever cared about. I knew incision complications would eventually work themselves out.

I chose a permanent ileostomy, even though I would have been a candidate for the J-pouch. Didn't want to deal with the possible complications or multiple surgeries of the j-pouch option. Also thought an ileostomy would be more compatible with my lifestyle and job... and it has been. There are no frequency or urgency issues with my ileostomy.

I have had no major skin issues, only one appliance leak (right after surgery due to wound drainage getting under the appliance wafter) and my stoma is the perfect length and functions beautifully (I went to a top CR surgeon so I thank him for this). I am so happy with the results. I don't spend any time in the bathroom except to empty about 5-6 times a day... but these trips are faster than any bms I had with UC. Not to mention there is no urgency. Sometimes if I notice the pouch is getting full and the time isn't convenient for emptying, I can still wait an hour. Plus, I can plan trips to the bathroom. For instance, if I know I have to do a two-hour presentation at work, I will just empty beforehand. I still wear all my old clothes including my skinny jeans. No one could tell I have an ileostomy unless I told them. My stoma was marked in the perfect spot.

As far as activities, it took me a little while to get back into things because of the incision complications, but now that I am healed and 5 months post-op, I am getting back into everything. I went snowboarding last weekend, have been hiking like crazy, today I am packing for an overnight backpacking trip. By the end of summer, my surgeon said I can rock climb and trail run again. There will be changes to these activities to deal with the pouch (emptying on long rock climbs for instance) but I am not one to let stuff like that stop me. I figure out a way. I work as a park ranger where I lead 2+ hour hikes and nature programs for the public. I have had no issues dealing with my ileostomy at work.

The one thing with exercise (and always) with an ileostomy is that you have to stay hydrated. That may be the cooling off thing you were referring to. Without the colon, water isn't reabsorbed into one's body (a lot of it ends up lost in their ostomy pouch) so one has to drink more. Eventually the small intestine compensates to some degree, but it never becomes as efficient as the colon so one always has to drink more. This just takes some self-discipline and has not been a big deal for me. I just drink a bunch and always have water in hand.

The main thing is that I feel wonderful. I am no longer sick and anemic, in pain or taking medications and dealing with their side effects... which were very bad for me. I was unlucky in that the joint pain from Remicade was worse than UC for me.

Still, I am thankful everyday that the Remicade, even with its horrible side effects, got me out of the hospital and allowed me to see a top surgeon at a later date when I wasn't in such bad shape. I know that emergency surgeries don't always have spectacular results because the body is so weak and they are often done by general surgeons. The general surgeon that would have done my emergency surgery seemed very knowledgeable and super nice (he checked in with me everyday during my hospital stay just in case I had questions). However, the top CR surgeon that my GI really hoped I could see worked out of a different hospital. Problem was, I was too weak to transfer to that hospital. So fortunately, the Remicade worked to at least buy me some time and allow me to see that surgeon. He turned out to be amazing... one of the best doctors I have ever worked with.

You are doing a great job at researching options ahead of time. I barely had time to do that, though once I found out my predicament, I was on the computer 24/7 researching from my hospital room so I could make educated decisions... I posted on forums, I called people I knew who had this type of surgery, or friends of friends who knew people who had surgery. I called friends who had experiences, both good and bad, with Remicade. I wanted to be as educated as possible and in the end it paid off. I am so happy with all the decisions I made and have no regrets.

I think you are wise to go to Mayo Clinic. They will be able to give you all the support you need. If it did come to surgery... you could be confident that you were working with a great team of doctors and surgeons... or if you have luck with the medications, they could guide you in a good direction with drug options as well.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Post Edited (Blueheron) : 4/10/2011 12:26:23 PM (GMT-6)


MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 387
   Posted 4/10/2011 2:00 PM (GMT -7)   
I take my daughter to the hospital when she can't keep anything down. She gets dehydrated really quickly.  I figure if she is throwing up, then her meds are not going to do her any good and she needs them in an IV.  This last time at the ER, pain was the primary reason to take her.  She's never had pain with her UC and it was really scary.  She spent 4 days in the hospital...sure wish I could give her IV's at home! :)  Would sure save us a lot of money!
Hope your flare ends soon
12 yr old daughter diagnosed UC 12/08
1st shot Methotrexate 3/20/11

too many flares to count :(
C-Diff 6/10
previously on 6MP, Asacol, Lialda, Rowasa,

Previously on 2 Lialda and Rowasa enema...developed pancreatitis

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1121
   Posted 4/11/2011 6:45 PM (GMT -7)   
Thanks Blueheron for your story. It's great to hear you're very upbeat and positive attitude. I'm the same way...I don't want to allow this condition to cause me to take a back seat. Your story is very inspirational!

On another note I think the Budesonide suppositories are kicking in. I upped my dose to 3x daily and I feel "normal" all day! I still like to go to Mayo just for the workup. This treatment may work this time but may not work later on....so this is how it goes with UC!
41 year old female, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm -mild
As of 2/2/2011 up to 15cm - mild to moderate - ulerative procitis
Apriso 4 pills AM/ Canasa 2x daily
Started LDN 3.0mg on 3/16/2011, increased to 4.5mg on 3/23/2011
Folic Acid 1 mg daily / Probotics /Energy Multi-Plex / Vital-Zymes Complete / BSP-201
Microgestin (birth control), Magnesium for leg cra

sobroken
Regular Member


Date Joined Sep 2010
Total Posts : 184
   Posted 4/12/2011 11:53 AM (GMT -7)   
Our hospital here has a walk in clinic every night. That's where I went and the Doc there sent me to the ER.
If you have something similar it may be the way to go. It's a lot faster and then they can determine if it's necessary.
40 year old female
quit smoking Dec 2009. First flare Feb 2010.
Hospitalized for 9 days and diagnosed with pancolitis April 2010.
have taken buscopan, metronidazole, prednisone, ciproflox,and mesalazine.
Currently taking mesalaminex2 day,Salofalk enema(rowasa)x2 week, Salofalk suppositories(Canasa)x1 day and pantoprazole magnesium.
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