Do I stay or do I go?

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SarahAnne

SarahAnne

Joined
May 24, 2011
Messages
602
To go or not to go to the hospital....isn't it horrible when we get to that point and still have to debate?

Right now, I'm not having any pain because I haven't eaten anything. I had a small banana earlier this morning to take my prednisone, and the hour and a half pain following that has put an end to my food cravings for right now. I feel a little hungry, but not so hungry that I'm willing to risk eating when my gut is calm. I have a stricture that is causing an obstruction. My GI dilated the stricture in Feb. '11 when I had my colonoscopy. The opening of my bowel had shrunk to the size of an ink pen. I was on Humira, went back to doctor in April and I had lost even more weight. I told him the Humira wasn't working anymore, we switched to Remicade but with no loading dose :confused2:

Felt great for 2 wks, okay for 2 more, then I was in pain and vomiting everything again. I've had a second remi dose and pretty much felt no relief after a couple of weeks. I have an appointment with my GI a week from this Monday. He ordered an abdominal ultrasound which I've had, and blood work which I haven't been given the orders for yet. Lots of liver workup, I know that much.

My problem is that right now, I am having periods of intense cramping and pain after I eat. And then the vomiting. I haven't kept very much down in weeks. I am a small girl (5'1" and thin), but I weigh 85lbs right now. All of my bones are jutting out at weird angles. I pretty much look like someone who is intentionally starving herself. My husband is desperate for me to go to the hospital, as I have no energy right now, even on 30mg of pred and taking B12. My problem is that when I am in pain and I need pain meds, I have to wait (for x-rays and bloodwork last time over 4 hours), I can't stand that they look at me and think I am in there trying to get drugs. But honestly, if they won't give me something for the pain, what's the point in going? I feel better at my house.

Also, anytime I go to the ER I get admitted to the hospital. EVERY SINGLE TIME. I want to feel better, but I'm not looking for a 4 day stay with bad meals and horrid roommates.

I know it sounds stupid, but how bad do you let it get? I probably won't die before I can call my doc on Monday, but my hubby gets pretty forceful and I can't hide much of the pain from him. I just don't want another hospital stay already this year!!:ymad:
 
When I'm seriously debating if I should go to the ER, then it's really time to go to the ER.

I, also, have been admitted every time I've gone to the ER the past two years, but I came home feeling better each time too.

This is just me, but you need to tell your hubby that it's time to head to the hospital. I really understand your pain - dealing with a partial blockage on and off for the past year and a half - and understand not wanting to go in, but if you're asking us, then you know the answer. Talking about needing pain meds means you're bad enough to need them. Not being able to eat without severe pain, that's not the way it should be. Definitely something really wrong in there.

Go and keep us up to date. I'll be thinking about you!
 
Silver's right. If you're debating with the idea enough to ask for internet advice, you should go.

You're in obvious distress, and someone saying "just wait it out" isn't going to end that, so it's probably just best that you go in.

And hospital stays aren't that bad! You can pretend you're on a space station or something, and you're roomates are aliens and the food is dehydrated crap. IDK. Read lots. Think positively!

Go get 'em. :hug:
 
Thanks everyone. I know I need to go, I keep coming up with reasons why I should just wait until Monday and call my GI. The stupidest reason is that my daughter has been a hellion today, and I fear for my husband's sanity if I get admitted to the big house.

It's 8pm now and I like the night nurses at our hospital a lot better anyway. I am going to try to eat something very light and see how it goes. If I throw up anymore, anything I will definitely go to the ER. I can't keep that up. I am still having BM's, well nothing formed, diarrhea and mucus. It looked food related today, although yesterday it was a lot of yellow and green D. That worries me, infection wise, but I haven't been running a fever. I mostly just feel exhausted, and just try to breathe through the cramping pains when they come. My only concern in going to the ER is that they never listen when I tell them that I have Crohn's and I already know what's wrong. I seriously hate waiting up there in pain telling everyone the same thing and having no one listen.
 
I hope you realize by now that prednisone can mask your fever, if you have one. I'm not telling you what to do, but you must be in a great amount of pain to be concentrating on it, and debating this much.
Please don't let it get to the extreme and take care of yourself...Your hubbys sanity will be just fine! LOL

take care :)
 
SarahAnne said:
I probably won't die...
Click to expand...

Probably isn't a word you want to use in that sentence. People DO die from Crohn's because of the havoc it creates. Lots of people say that maybe they aren't that bad cause a lot of the times you can't see what's happening on the inside and our outside looks fine. Except for the fact that you can visibly see the damage its doing to the outside of your body. You've lost a ton of weight visibly, you're tired all the time, you're in pain every time you eat so you resort to not eating, you vomit when you do eat. Crohn's is deadly when not treated properly hence your current obstruction. Its not something you decide to not have treated simply because you don't want to be admitted to the hospital cause you don't like roommates or think that the doctors wont listen or assume that your husband cant watch a child. You have a loving husband who's telling you to go and a child who needs you to go. Don't wait till you throw up again. GO.
 
I DO need to go to the hospital and I WILL, my question of when is a little of something else too....

I hope I didn't upset anyone with my post, I wasn't really trying to be flippant. I know people die from this disease and it's horrible. I know it sounds like I'm not taking my symptoms seriously either but I really am.

I have been dealing with this stricture for at least 3 yrs now. It is at the site of my "former" terminal ileum, where I had my resection 15 yrs ago. The GI has been dilating it yearly at my colonoscopies, but this past year it only lasted 2 months before I was almost narrowed to a complete obstruction. To complicate matters, last year I had to interrupt my Crohn's meds to have 4 procedures for a kidney stone. Even though my GI hasn't mentioned surgery yet, I fear it is coming and soon.

I told my hubby if I went into the hospital now, I would be admitted. And if I'm admitted, I probably won't come out until after surgery. My first surgery was a scary rush when I was 19, and I had no idea what was going on. I don't want that feeling of being completely helpless again. I told my husband that I will call GI on Monday and basically tell his nurse I'm dying and need to be seen now, she knows how bad I am and she knows I'm not a complainer. At least this way, I can prepare for going in, at least a little bit. Sometimes I still feel like that scared kid at 19 who knew nothing and I absolutely hate it.

I've kept down soft foods (baby food, Fruit Medley!), I can hear it squirting and squelching through my stricture now. I'm going to try for small amounts of soft foods on Sunday and call my GI first thing Monday. I've already promised to hubby if I get any worse I go, no questions. He's packed me up and tricked me into going against my will before, I have no doubt he'd do it again if he thought it had gotten to that point.

And thank you all. I do appreciate your concern.
 
My suggestion is the error on the side of caution. Your life and well-being are too important.
 
Just to reiterate what Tracey and all the others have said, I'm on Pred and was shocked to discover from CT scan results that my Crohn's is still really active because I was feeling a lot better. I think we all understand your reluctance to go into hospital, but we're just worried about you and that delaying might do untold damage.
Thoughts are with you and let us know how you get on.
 
I wasn't trying to be mean Sarah but it does upset me when people stay at home when they know they need treatment and decide to wait a few days to a few weeks to a couple months. It just blows my mind and I don't want to see anyone else on this forum pass away when things might have been different if they had gotten treated sooner. I really do hope that you'll be ok.
 
Sarahanne, I'm guessing you've been admitted to hospital by now? If not, that is where you should be.

You WILL be having emergency surgery again if you keep waiting! Dont ask me how I know this. Ask Stan my stoma. Who saved my life, as I was perforated and almost dead last year.

Hope you are in hospital getting the help you need!

:hug:
Misty
 
Called my GI's office on Sunday, not expecting to get anyone, just wanting to leave a message letting them know I was bad and needed to be seen ASAP Monday. I was fine yesterday morning, really tired but I only ate some applesauce to take my pred. I haven't eaten very much so I haven't had any D or cramping. Packed my hospital bags last night (I'm not stupid, I am going). I told my hubby I would go to the GI and let him admit me to hospital, it's quicker and easier that way. No waiting in ER having unnecessary things done. I was prepared to go to the ER if I had an emergency.

Answering service still on at GI's office, they should get message and call me back first thing, but I am still calling them every half hour. Hubby stayed home from work today to watch kids; mom is going to appointment with me. Going to tell the nurse that the GI will see me today, in his office, or at the ER later. I know I'll get in, he will always work someone in. That's probably why I wait 2 hours every time I go. :devil:

Anyway, just wanted to update everyone. I post an update after I see my GI, don't know if he will have any answers for me at the appointment or if he will want to admit and run more tests.

I'm off now to try to eat a bit and take my pred. Thank you all so much for your concern again, I'm so glad I found this forum. It's nice to know that even though we don't really know each other, we can help support each other, especially when most people don't understand what's going on inside our wacky bodies. I hope all of you are feeling great today, if not, I'm sending a hug your way.:ghug:
:Karl:
 
Looks like its a little after 2:30 where you are now. I hope you get some answers soon! *accepts hug and gives hug*
 
Ugh. Finally admitted to the hospital. I'm getting a PICC line put in tomorrow morning, and TPN after that. I guess I'm going on a liquid diet as well. I have a CT scan, I think it is ordered for tomorrow morning as well. GI said he could feel lots of adhesions. I tried to go to the lab before my appointment and have my bloodwork done, but I was too dehydrated and I almost passed out. They're going to try to get the bloodwork tomorrow too I guess. I'm not sure what else is going on. I'm just really tired, and when I got to the room the girl in here immediately raised a stink about having a private room. I am the nicest, quietest roommate ever. Good riddance to her, I hate people who act like they are in a damn hotel with room service instead of the hospital. At least the nurses always love me, because I'm nice and quiet.
 
Oh Sarah I am so glad you are there and they are getting you hooked up already!
:ghug::ghug:
And hey...it serves you to be nice and quiet heh...now you have a private room too ! hehe

Get some rest sweetie and let us know how you are please !

hugs,
T~
 
Thanks guys! Roommates aren't the worst thing in the world, I just tend to get stuck with really crazy ones. When i was admitted back in Feb. I had the roommate from hell. The hospital was very busy and she buzzed the nurse every 10 minutes for air freshener for her potty chair. I was waiting for pain meds for 5 hours. After listening to her chew out the tech when he explained why she couldn't have air freshener (people on oxygen, allergies, etc.), I lost it. I had just gotten my dilaudid and I chewed that lady out. I don't remember what I said (I was on a drug induced rant, it was amazing!), mostly it was about how horrible and ungrateful she was and how hard the nurses work and don't get paid to put up with her whining. I remember she called me a bitch and I yelled at her until she cried. The nurses gave me high fives and moved me into my own room. It was awesome. I'm by myself now which is great. I really don't mind roommates, I just hate listening to people complain. No one is hear because they feel fantastic, suck it up and stop making everyone else miserable!

I did get the blood drawn, all 87 vials of it, without passing out. He really is testing everything....I'm not having any pain now but I am a little concerned for later. I don't know if he wrote anything for pain, he gave me phenergen for nausea. I don't have an IV yet so anything would be just a shot. If I get bad enough i'll ask for something. i'm ok now, but it always gets bad in the evenings.

I'll keep everyone updated when I know more! Thanks for the well wishes.
 
Bless you SarahAnne

:ghug: :ghug: :ghug:

I'm glad you've been admitted and they sound like they have a good plan in place for you. Will be thinking of you and keeping an eye out for updates, but make sure you rest.

(Ps. that drug induced rant sounds amazing!) :D
 
You will feel better with some fluid and nutrition. Then you can deal with what happens next.
Wishing you a speedy recovery.
 
No IV yet, several tries but I'm too dehydrated. I can't have any meds until they get a line in, but I'm not in any pain. All I had were liquids last night. I'm scheduled for a PICC line sometime this morning, and then a CT after that. I think I heard the nurse say the PICC line was going to stay at least 5 days; not sure if I'm supposed to be in hospital the whole time? I'm sure my GI will tell me a little more when he comes by tonight. So far I'm still without a roommate since Little Miss Whiny Pants changed rooms. Awesome! And I have the bed by the door (closest to the bathroom-double score). I totally hate being in the hospital, I already miss my husband and kids, but I know I need to be here. I am in good spirits and trying to stay that way. We'll see how I feel after I get the PICC put in.:ylol2:

Thanks everyone for your well wishes and concern. I appreciate it so much.:hug:
 
Oh SarahAnne, sad to hear you're in hospital, but glad to hear you're being looked after.

I think most of us know how difficult the decision to go to hospital is, and can relate to your conundrum. I was in hospital last week, and ended up coming back through the A&E yesterday because I was unable to keep the liquids for my liquid diet down. I'm not completely thrilled to be here, but I do feel much more comfortable, and I figure if I start having trouble again, I have quick recourse to get sorted out--even if that means surgery.

I'm a bit surprised they would only keep the PICC line in for five days. I guess that will depend on how long they reckon you need intravenous nutrition, and what the long-term treatment plan is for you. I've had a number of them in my day leading up to surgeries, and never had one for less than a month. At least they are more comfortable than a standard cannula in the crook of the arm. The one I got yesterday is quite annoying!

I wish you a speedy recovery!
 
I would love to be your roommate and would get you your pain meds if the nurses don't have time. Whenever I am in hospital I do a lot of work with other patients because nurses just don't have time for sushing, cooing and rubbing. We could exchange jokes about the noises we make (the embarrasing ones), read gossip magazines or good books, computer (facebook???) and try to make the best of it. Anyway, I hope you get well soon, out of the hospital and NEVER wait so long anymore before going there.
 
Carrie said:
I'm a bit surprised they would only keep the PICC line in for five days. I guess that will depend on how long they reckon you need intravenous nutrition, and what the long-term treatment plan is for you. I've had a number of them in my day leading up to surgeries, and never had one for less than a month. At least they are more comfortable than a standard cannula in the crook of the arm. The one I got yesterday is quite annoying!

I wish you a speedy recovery!
Click to expand...

LOL! Yay for PICC lines! I'm just glad I don't have to be stuck anymore. I'm pretty sure the thing is staying in a lot longer than 5 days, I overheard my GI talking in the hallway to the nurses, so I was trying to listen in. My GI, however, is Polish and has a very thick accent, so I can't be sure of what he said. He'll be back tonight and hopefully I'll know what's going on then. I'm just hanging out now, pretty sure the doc is waiting on test results.
 
I'm getting a little irritated with my GI; he came by last night to check on me. He still hadn't gotten the results of the CT, but asked me if I wanted to try to eat (I was NPO). I was really confused, the reason that I'm here is because I've lost weight because I've been vomiting everything up. I told him I'd try and he changed my diet orders. He told me he doesn't think the stricture is causing me to throw up because of where it is located. He didn't give a reason that he thinks I am getting sick, he ordered some meds to help increase my appetite. It's not that I'm not hungry, holy cow I'm starving!, but it's almost like he thinks the vomiting is psychological or something.

I ate some mashed potatoes and now I feel really bloated and full. I'm sure he'll be back tonight after he sees patients. I'm really curious as to what he thinks is wrong with me. I don't enjoy vomiting or losing weight, and if my stricture isn't forcing stuff back up, what is? I'm getting fluids and TPN right now so I should start putting on weight and feeling better, even if I can't get solid food to stay down.
 
SarahAnne, after not eating for a while, you will of course feel bloated when you eat potatoes. I think its good they want you to eat soft foods at least.

Its not unusual for them to try different things if they arent sure yet what is going on. Surely once he's seen all the results he will be able to help more. Hang in there!
 
At least you are in the right place if the food does, indeed, make you ill and you're getting nutrition via TPN regardless.

I had a mini-meltdown myself today because I was in hospital last week due to weight loss/small bowel obstruction, and came back Monday because I couldn't even keep my prescribed liquid diet down. Yesterday they gave me the go-ahead for liquids, but didn't bother to prescribe the supplement drinks to give me the calories! Suffice to say I was feeling a bit crazy from lack of calories/'roid rage and got that sorted out pretty quickly this afternoon.

I hope they can pinpoint what's giving you trouble soon so you can get on the road to recovery.
 
Hi SarahAnne, I think you're doctor wants you to try to keep eating, so you don't lose the ability to eat. A friend of mine with ulcerative colitis was on TPN for a year and the muscles in the esophagus and stomach stopped working (it would no longer pull the food down because he hadn't used them). He had to undergo a very unpleasant therapy to regain the usage of his esophageal muscles; the doctor told him if he had Crohn's that might not have been possible.

Of course, no one wants to throw up every time they eat, but even if you just manage a few spoonfuls it will keep those muscles in shape. I don't think he'll take away the TPN since you are at so low a body weight. He might want to see if these muscles are still able to work, so he wants to see what happens when you eat.

When I was in your condition, I was able to bring food up easily enough but had trouble swallowing and keeping it down. It is very unpleasant to eat and be so uncomfortable; I can totally sympathize. But it's for your own survival-that how I tried to look at it.

You've been so brave! Just keep hanging on SarahAnne-keep fighting! Soon you'll get your results and the right treatment, and each day will slowly get better.
 
Hey SarahAnne, hope you managed to keep the mash down, it is good to hear you've managed to eat something, but also glad you have fluids and TPN going in now too. Hope your GI comes back with those results soon.
 
Hi Sarah,

Hope the potatoes are treating you well. Glad you are getting irritated, that means you are feeling a bit better! Hopefully, it is just the beginning of feeling better.

I am sure the doc had a good reason for you to try eating. They sometimes forget to tell us, the patients, what the reason is behind actions even though we are the ones taking the risks! I found with my GI to just ask if he doesn't tell me the motive for something.

Hope your results are back soon with good news.

Kristel
 
Just saw GI again; my bloodwork was okay (nothing unusual), and he said the CT scan showed that I did NOT have an obstruction. I got some meds earlier today (don't remember the name - Magase?), it's supposed to help with my appetite and he wants me to stay on that. He asked about anti-depressants, I told him I was on Zoloft 50mg. He said he's going to bump me to 75mg. For some reason that really pissed me off! He almost made me feel like I am imagining being in so much pain, and that I'm making myself sick. I told my mom I would stick it out, keep trying to eat while I'm here (I've had to get phenergen and dilaudid a couple of times because of the pain), and take the meds. I'm also going to get all of my records when I get out of the hospital and see another doc for a second opinion.

I feel like crying my eyes out. I KNOW something is wrong with me and I feel like my GI is just dismissing my problems.
 
Oh honey I know how it feels. Just keep being strong and keep trying to eat as best you can. Hopefully they'll get down to the problem. It's possible that your crohns moved to your stomache causing your pain and vometting. I hope you feel better soon
 
Oh SarahAnne :ghug: I'm sorry it feels as though your GI isn't listening to you. Given the circumstances I think I might be a little upset also at being told to raise my anti-depressants too. Glad there's no obstruction, but I know in some way that's little comfort when you know something is wrong and you need to find the cause. So what's the plan now after giving you the meds to encourage eating and increasing your Zoloft, just wait and see for a few days? Keep trying to eat if you can to keep the movmement going, but if you're in pain make sure they know hun.
 
Thanks everyone. Yeah, so far his plan for me is to keep getting TPN and fluids because I'm severely malnourished. I have been able to keep down small amounts of food without vomiting, but it has made my guts cramp - I'm allowed phenergen and dilaudid, so I've been asking for it about 2 hours after I eat, when I start getting the pains. He hasn't discussed a release date, I have a feeling I might be in here a while yet, trying to gain weight. I'm glad that I'm not obstructed, maybe just eating so little for so long has made my bowels unwilling to co-operate. I guess we'll see. I'm just thankful that there is no talk of surgery yet. Going to take it one day at a time here; I'll pretend I'm at the spa on vacation....:rof:
 
It's a shame that the doctor does not seem to be taking your pain seriously, but I am glad to hear that they have a plan for you to gain weight and get you healthy from that stand point. Hopefully once your body regains some nutrients and you start gaining weight, you'll start to feel better, and fingers crossed whatever is going crazy in your guts will start to heal and eating will become easier once again.
 
ive had many times where i would question whether or not to go. but after asking for advice on here, the best advice ive ever gotten is - if you have to ask then you should deff be going. i mean whats the worst that could happen, you spend a few hours in the er? as much as i hate going, if im asking whether i should or not i always go even if it seems minor.
 
Hey SarahAnne, just wondered how you were getting on as we haven't heard from you for a couple of days. How are you feeling? Thinking of you x
 
Got home late last night after almost a full week stay. I feel loads better. And I'll totally admit when I am wrong. Long story short, it was a MAGNESIUM deficiency. We only have it in trace amounts anyway, but it affects the muscles. My muscles just stopped working, basically. Plus, I was severely malnourished and severely dehydrated. I gained about 10 lbs in fluids alone. The TPN I was getting was a 70/30 dextrose/fat mix. When I started eating soft foods I felt uncomfortable but I wasn't vomiting anymore. I thought that it was because of the phenergen. They were giving me an appetite stimulant called MegAce and I started to really be hungry and I just couldn't understand it. I got some Magnesium IV before I left, doc said too much in the system causes diarrhea. I had a normal BM this morning and almost cried with joy. I have to really watch my levels, 30-40% of magnesium is absorbed in the small intestines and people with Crohn's naturally stay away from a lot of foods that are high in it (Bran, etc.).

GI finally caught it because it kept showing up in my bloodwork, even though my potassium kept going up after I was eating regular foods. I am still on an appetite stimulant cause I need to gain a ton of weight, but my GI tract is actually in good shape. No obstruction, and so little inflammation that he took me off the prednisone. He said he could feel a lot of adhesions, but nothing problematic right now. My next remicade dose is July 18th and I actually feel like I can make it until then. Yay!!

I guess the moral of my story is get your bloodwork done. I never would have guessed. Hope this helps someone else out there!!
 
Excellent news!!! Keep eatin girl! So glad they have it figured out and you are feeling better!!
 
Do I stay or do I go

Yuck. I sure have been in your shoes many many times. I am sorry to hear it. If you do wait to go and are exhausted, try to take shots of gatoraid every half hour. The dehydration might other wise make things worse. I hope you feel better and don't have to be admitted. The only good part is the pain control but calling for it and waiting through shift changes can become agonizing.
 
Yeah SarahAnne! Glad that they found out the problem and that you have been doing better! Glad you were able to head home.

Kristel
 
I am so happy to read this update :) glad they figured out what it was and hope you can keep up the good work with the weight gain xx
 
Sara I just read through your post, and Im so sorry your going through all of this. You are where I was all of last year. It was absolute HELL!! At times you wonder how you will make it out alive. BUT Hang in there my friend, I hope your home and feeling better. I know that when I was in serious flare, I had infection and they couldnt get it under control for a while. I had to be on a really high dose of Pred plus Remi and IV antibiotics before things finally calmed down. And then months later we slowwwwllllyyyyy decreased the Pred....my flare is not serious anymore...but definately have tims where Im perfect and other times where I mini-flare. It only lasts a couple of days, and then Im back to being pretty good. Wishing you the best of luck
 

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