Go to hospital or not?

[Uffie]

Last night I decided that I needed hospital help. I have lost a lot of weight recently (45.6kg frm 57.5kg im 5ft4). I found that Elemental 028 Extra was actually causing me lots of abdominal pain plus pretty much going straight through me. It also seemed to aggravate the pain in my bum.

I stopped using it on wednesday, but found that i am not really getting nutrition i need and i'm worried that i will deteriorate more. I am not interested in food. I have cereal just because i'm on prednisolone, i have just got a juicer and i'm using that carefully, i usually have a very small bowl of soup too. I'm sure BM's exceed what goes in my mouth.

As i'm so weak and in pain I sleep nearly all day. I wake to find my mouth completely dried out and Although i'm drinking at least 1.5ltr i feel dehydrated a lot.

My colon also feels firmer and swollen when i rub my tummy. I have hemrrhoids (one thrombosed) and a couple of ulcerated anal skin tags. I'm using lidocaine and mometasone fuorate externally. I have anugesic suppositories too, but yesterday i was so sore i couldn't insert one (it was a bad bum day for me). Also, i'm on codeine 60mg 4 times a day but i think it is becoming less effective for both pain relief and reducing BMs.

So i thought i'd go to hospital and ask for help. I had visions that they'd hook me up to liquids and find someway of feeding me which would stay in my body and give my bum a rest from BM's (like TPN). Give me some pain relief for abdomen and bum.

However, i expect it doesn't work like that and i don't want to find myself in hospital over the weekend feeling worse or no better than being in comfort of my own home.

I have my first consultation at Bradford Royal Infirmary on tuesday morning and ideally i'd like to survive until then.

I don't want to find that if i leave it, get worse, then go in over the weekend to be sent home or given poor treatment due to lack of weekend gastro's working.

How can I decide what to do? Have u admitted yourself to hospital (uk) and wished you hadnt or that you got there and wished you hadnt waited so long.

I'm so confused. If i go to hosp i'll obviously inconvenience my other half but he doesn't mind if it means i get some help, but he knows me, and if things go downhill i'll be calling him to take me home.

 

[Jennifer]

Well here in the US they would give you an IV with fluids which you really need along with something for the pain. Even that itself will make you feel a little better. They may do a rectal exam and may try running some tests like blood work, small bowel series and maybe some others.

Have you tried Enteral nutrition? That may help as well. Dunno if the hospital would get that started or not though. No harm in asking.

I've never regretted going to the ER for GI issues.

 

[Trysha]

Perhaps you should get some help if you feel so bad.
Why don't you go to the Bradford Royal Infirmary emergency and ask for some help., this way you could have a measure of continuity of care at the place you have a Tuesday appointment.
It does rather sound as if you are dehydrated ----do you have crohns or ulcerative colitis? You may need help sooner than later with a flare like this.
Codeine is not a good drug to be using for IBD.
Feel better soon
Hugs and best wishes
Trysha

 

[Uffie]

I have large bowel crohn's near the appendiceal orifice.

I'm hoping that consultation on tuesday will review my current state. But for the timebeing i couldn't survive without codeine. I tried reducing the occasional dose a few days ago but my pain and BMs just got worse.

I really don't like hospitals. I went in for abscess drainage a few weeks ago and i nearly walked out cos i'd been nil by mouth but kept getting put back. My body goes wild when u stop feeding it. It really doesn't like it.

I've not had enteral nutrition before but i don't have problems drinking the liquid diet until it hits my stomach, which it would do under enteral nutrition too. So wouldn't help really. Had blood test on tuesday and they showed me to be a little bit anaemic and high inflammatory markers (no surprise there).

I think i might see how i get on this morning and my fiancé will call my GP urgently first thing for advice.

Thanks

 

[skippy111]

I agree with Trysha,
you sound like you are dehydrated and something may be going on if your BM output is more than you are eating...

Sleeping all day is a sign of fatigue and posssible general weakness...

I would deffinately call the Dr asap.

 

[Samboi]

As soon as you start considering whether you need to go to the hospital - it usually means it is time to go there.
You actually sound very unwell.
I had similar issues at the start of the year - ended up being so unwell that it has taken months to recover.
When you start feeling that physical weakness, coupled with the pain and dehydration - it's time to head to the hospital. You could do serious damage to your organs. Don't downplay what your body is telling you.

 

[Uffie]

How have you found the care to be once in hospital? I know each hospital is different. I don't know if any of you have been to bradford royal infirmary.

I worry that i wont get to a toilet in time, that i'll pick up viruses from other patients or from their visitors. I worry that although i may get fluids that i wont be able to eat any of the food. There is very little that i can tolerate and little that can tempt me to eat. As i say i can't fall back on the liquid diet as that makes me worse.

I'm going to see how i feel in the morning and then if i don't feel better or if i feel worse i'll go to bradford a&e to see if they can help.

Thanks v much for the info so far

 

[Jennifer]

I've not had enteral nutrition before but i don't have problems drinking the liquid diet until it hits my stomach, which it would do under enteral nutrition too. So wouldn't help really.

It might help. It goes in slowly through a tube down your nose and is controlled by a machine like an IV is controlled. May be worth a shot.

 

[Uffie]

I went to A&E this morning. Although it's been a long day with a lot of waiting, at the moment i'm really glad i came.

I'm on fluid drip and iv steroids, i've got some bum numbing product i can use as often as i need. All the nurses/doctors have been really nice and understanding. It seems i made the right choice.

I wont get to see a gastro until monday but i should get some relief in the mean time.

It looks like TPN might be an option to try to help get me into remission. I have heard good things about this. I'll look into it a bit more though.

Downside at moment is that i have run out of drips and my machine has been beeping fir nearly an hour. Nurse is aware, dunno why she hasnt come yet. I'll press buzzer again i think.

Thanks v much for your advice guys

 

[skippy111]

Uffie, I am so glad you decided to go..

Yeah those damned Iv machines will dive you batty ... the nurses will let them beep and beep and beep... lol

I found the silence button on my machine real fast because it took the nurse a while to get off her ass ..

just watch the nurses very carefully, when they work with your IV that they dont leave any needles or anything behind, on the bed. That happened to the guy who was in the other bed in my room.. he pointed it out to me and I told him not to touch it and just ring the call bell.. when the nurse came in I just pointed to the needle and didnt say anything more.. she appologised to both of us lol

 

[Jennifer]

Ya I had to silence my IV too a lot. They do get really busy. Glad you're getting some much needed help though and hopefully rest soon once you figure out how to turn off the noise.

 

[Trysha]

Hi Uffie,
Glad to see you are in the right place and receiving supportive treatment
Soon you will be on your feet again.
They do let those IV poles make a lot of noise could be they are really busy.
Ask them to show you the switch off button!
Feel better soon
Hugs and best wishes
Trysha

 

[Uffie]

Glad i went in but in some ways i feel worse.

They found two abscesses which are fistula, they are an infection so now i'm having antibiotics and waiting for the surgery to heal.

My crohn's is very bad and they are thinking of putting me on infliximab but they want to perform various scans first. They'd like to do colonoscopy but they know i can't handle it yet.

Although hospitals aren't nice i'm in the right place. The care is slow as everyone is so busy but they are good and nice. Not sure about hygiene, not seen much cleaning going on.

I'm having to have a new cannula put in everyday which is a painful experience in itself. I've been having iv steroids and some vitamins.

I'm hoping to see IBD nurse today and some docs and get some questions answered that i have.

Probably going to stay offline apart from research for a bit. Need to rest up!

Xxx

 

[skippy111]

you get some rest Uffie and I hope you get some answers and feeel better

 

[littlemissh]

Hope you feel better soon, iv steroids can work really quickly sometimes so hopefully they will for you too.