Hospitals er

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Is it me or does the hospitals emergency rooms not know nothing about crohns? They automatically think your in there for drugs. Or act like they have no idea about what crohns disease is. Its very frustrating. Anyone have the same problems?
 
Mine knows me by and has a bed ready...at least it seems that way.
 
Mine has been hit and miss. A few times I have had a nurse with a family member with crohns and that always helps. Some are a little clueless. Others seem to take it very seriously. Most of the time I find them very helpful and try to move things fast.
 
My experiences have generally been good. I have went to the ER 5 times with Crohn's (2 of which were obstructions - one of which was 2 days after being released from resection surgery).

Have never had the assumption made that I was there for pain meds.
 
Its just one certain hospital around me. Its like they don't know anything about crohns. Its just frustraiting
 
How irritating. I've been known to have screenshots on my phone of websites describing certain symptoms so I can show them when I get there. For example, I have a screenshot for my dentist that describes the mouth sores and inflamed gums so that mayyyyybe he will learn something new and I won't leave as frustrated, feeling as if I paid for nothing.
 
They pretty much say there is nothing we can do call your doc. When my GI told me to go there lol. I'm really thinking of making the Cleveland clinic my hospital. To deal with my crohns
 
Mine knows me by and has a bed ready...at least it seems that way.

That's pretty much how it is for me too.

They don't advise on long-term treatment plans, that's not their job and requires a consultant with expertise.

They've never suggested I was there for drugs - they pretty much see me, admit me.

Last time I went, the sign said the waiting time was four hours. They saw me immediately, and within the next hour or so I'd been given a bed, been seen by a doctor, then a surgeon, had an x-ray, been given pain relief and had an NG placed to drain bile from my stomach.

They deal with emergencies. They should know about the emergency situations Crohn's can cause.
 
brad - what do you go to the ER for? I.e. what symptoms do you go there with, what problems caused those symptoms?
 
I get partial obstructions/strictures so I've gone to the hospital a billion times in agonizing pain...what really helped me to get fast relief was my doctor writing a note in my file explaining my condition and to give me pain meds immediately. It's been awesome, the last time I went they had me hooked up so fast I wanted to kiss them :)

It's important to note that my doctor works in the hospital and I always go to that emergency room. They probably wouldn't care if it was just some random doctor telling them to treat me with morphine.
 
When you go for dehydration, have they found objective signs of dehydration, e.g. low blood pressure, increased heart rate or breathing? Did they give you IV fluids or any painkillers at the ER?

If they did, there's really not much more you can expect from them. They'll be able to recognise if your pain is due to a medical emergency, like a blockage or perforation. If your show no symptoms of something like that, it's not their job to diagnose the cause of pain. If you show no objective signs of dehydration, they can't treat for it (and there'd be no need to).

If you need to go to the ER sometimes because you're not sure if you're in an emergency situation or not, or just want reassurance that you're not, that's a valid reason for going. If you need strong pain relief, that's a valid reason for going, so take no notice of anyone there who suggests otherwise (as long as you're not going every week for these reasons - e.g. you can go to the ER once just for pain relief until you can see your specialist, but if you're needing stronger pain relief regularly, your specialist should be addressing that).

But ER doctors don't need to know about Crohn's, they just need to be able to recognise its emergency complications. When I went with a blocked bowel, the doctor I saw wasn't a specialist, he wasn't a gastroenterologist, but he could recognise that I had a bowel blockage, and then he got a specialist surgeon to come to see me - it didn't matter that the emergency doctor didn't know much about Crohn's himself.

Of course this still doesn't justify them treating you like you're just there for pain meds, but if your records show you go there regularly and request pain relief, when you're not in an emergency situation, I guess some might start to question it. When you go, do you specifically ask for pain relief, and do you request a specific medication, or do you wait for them to bring it up?
 
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I never ask for pain med and every time I went in for being dehydrated I was.most the time if I'm just having bad stomach pain I don't go unless its to where I can't take it anymore.

Another thing about this hospital was about a month ago I was having so much blood coming out. And they checked seen I was bleeding and still sent me home and said call my GI
 
It sounds like you have perfectly valid reasons for going - though your GI should be addressing the pain and dehydration if they're happening regularly; it sounds like your GI may be at fault if he's sending you to the ER. Of course he has to tell you to go there when you're dehydrated and he's right to make sure you know to do that and not just try to hold out til your next appointment with him, but he should be addressing the problem as a chronic, long-standing issue as well.
 
If it were me in that exact position I would
consider looking into the possibility of changing where I go,
looking at my food intake to see if I can make it easier on myself as certain foods etc are known and proven to cause a worse time for us sufferers (but the foods vary from person to person)
and finally the dehydration thing is a knock-on effect from the food intake needing adjustment and being part of the problem and leading to you having diarrhea.

Key to managing this condition is to learn as much as you can (and most of it can be from other sufferers as if they've been through it, try to learn from their extra suffering so you don't have to learn the hard way by learning the same lessons already learnt)

I hope you dont feel like this post comes across as unsympathetic in any way as I just want to be as straight as I can in a helpful, usable way.

So many people on this forum suffer more than they have to through lack of understanding and they are having up to 20 trips to the loo everyday due to diarrhea etc and it really doesn't have to be this way if you can understand the condition to the point where you can make adjustments to reduce the severity of symptoms.

Knowledge is power.
 
Well I have diarrhea since I had my ileostomy reversal. And pretty much have tried everything and it hasn't worked
 
Well I have diarrhea since I had my ileostomy reversal. And pretty much have tried everything and it hasn't worked

See that was my worry mate as we are all at different points on the Crohn's journey...

So is there no way you can play about with food intake and see if that makes any positive change for you?

Also others on this forum, post-surgery like yourself, are they all in the same position as you or do they do anything differently to you to make the symptoms less severe?

I can only try to put myself in your position and think what i would try and do to get some form of improvement on a difficult situation, and I honestly think I would try to find as many threads on here from other sufferers who are ileostomy reversal veterans like yourself and see in their threads if their quality of life is better than yours currently and if it is, try to find what they are possibly doing differently to you so that you can try that as well.

Again, sorry if my post(s) came across as me being harsh - just trying to offer an analytical brain to your trouble.

Keep positive.
 
Not everyone can control their symptoms with diet. And even if someone could, there are so many dietary changes that could be made, it could take months to figure out if eating a different way may help you. You could read what other people do and actually end up making yourself worse a result - I've done this myself; followed advice that others believed would help and worsened my symptoms.

Even if someone's had a similar surgical history, we can get new symptoms at any time, new complications, Crohn's can appear in a new place in the digestive tract.

We can only learn and help ourselves so much. And some people can't do as much as others: the ability to learn, distinguish good information from bad, follow diets or put other forms of self-help into practice - these things take time, money in some cases, education and other skills, and some people are just too sick to be up to doing these things. It's doctors' jobs to help us and figure out what's wrong and what to do about it.

brad: I would have a serious talk with your GI about these symptoms and plan how he's going to try to figure out what's wrong. Ask if you can have stronger pain medication at home for when it gets bad to save you having to go to the ER for it (or ask about pain meds that aren't opiates or other addictive substances, so you can avoid suspicion at the ER). Ask about dehydration treatment you can do at home for the same reason: you can get products to replace the fluids and electrolytes that are lost when you have severe diarrhoea.

Crohn's is complicated and doctors who don't specialise in it can't be expected to know all that much about it. Go to the ER if you suspect an emergency, like if you experience a sudden deterioration in symptoms, but get your GI to understand that you need a long-term plan to deal with symptoms that are leading to potentially dangerous dehydration on a regular basis. When did you have your surgery? I've read that diarrhoea is common after reversal surgery, and it's also common in people who've had significant parts of intestine removed. Even if you've only had large bowel removed, it's advisable to drink a bit more and eat a bit more salt (though since many people's diets contain too much salt, not everyone who has intestine removed needs to make a conscious effort to do this). However, having had an ileostomy and then a reversal should not, as far as I know, cause pain. Have you had scopes or other tests recently? Your GI needs to figure out what's going on.
 
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Hey brad1025,

Since you have had an ileostomy reversal was it done in the first place due to a terminal ileum resection?

What have you tried for the diarrhoea?

As to the ER, well they are there to stabilise you and move you on. They don’t do chronic medicine and won’t delve into the management of it but that said they should address your immediate problems. So at the least fluids and pain management fall under their responsibility.

Dusty. xxx
 
I started leaking after a bowel restriction. And they have tried a lot of different anti diarrhea med and none of it has worked. My doc actually has me meeting with another surgeon to see if I should just go on the bag.
 
Could you ask your GI doctor to write a note summarizing your medical history and what things the ER doctor should consider or look out for? If you can get such a letter, you could show it to the ER doctors and it might improve your ER experience.
 
The bowel movements can be a tough thing to figure out. I was three or four years post op before I started getting semi-normal ones again. For me, water intake seems to be the key thing, with minor other changes helping out a little. Here's hoping it settles down for you quickly. For the record, any of the prescription meds and all the other bulking products, etc, I tried did absolutely nothing for my movements.
 
I drink a lot of water. The bag was definitely a better way of life for me. I mean at first it was hard dealing with changing it and worrying about it leaking but once I got over that I loved it. It was nice and easy. And if I got a leak while I was out I'd usually stuff some toilet paper where it was leaking change my shirt and go back to what I was doing
 
Last time I went to ER I made them run an adonimal ultrasound, after they tried to chalk my pain up to ulcers. They found gallbladder was stuffed with stones. Had surgery to remove. Depends on the hospital and doctor. Some is good, some try to give you a Z-pack and send you home.
 
I'm sorry they're treating you that way. I always try to go to the same hospital so they have my records from previous visits, and I try to go to the one my GI is associated with. I've only had one nurse tell me I wasn't sick enough to be there and try to get me to say I wasn't being truthful about why I came in, funny enough the GI on that night admitted me immediately after doing a rectal exam. Sometimes people can't believe what they don't see. Don't let that get you down or avoid going if you need to, you know your disease and body best. Good luck.
 

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