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Crohn's Disease Forum » General IBD Discussion » When to go to hospital for a flare up and malnutrition+dehydration?


04-10-2016, 06:39 PM   #1
Crohnie09
 
Join Date: Apr 2016
When to go to hospital for a flare up and malnutrition+dehydration?

I'm in a bit of a dilemma right now :/ been on enteral nutrition with fortisips for 4-5 weeks now to treat a flare up thats been going on for 3 months now, supposed to be drinking at least 8 per day, yet only getting through 2-4, usually only 3 because of pain, nausea, distended abdomen etc.. Anyway, I go from going to the toilet once a week at the most, to going 6 times a day (nothing compared to some, but in comparison to usually going once a week!!). My liquid diet hasn't been working obviously because I haven't been able to do it properly and drink the right amount. On top of that, i haven't been drinking water either, so I'm pretty dehydrated right now, my urine is badically orange. I feel like this has been going on for a long time now, and it's really taking its toll on me mentally and I can't cope with all the anxiety and constant feeling of depression it's brought on. I'm assuming I'm a bit malnourished from having lost 4-5kg when I was already underweight (my weight would now be around 45kg if not less, at 170cm tall), and obviously dehydrated, but I honestly have no clue what to do. I just want to curl into a ball and cry right now. I'm in a constant state of confusion, i feel like everything has become a daydream. I know this sounds stupid but I don't know anyone else with crohns, so does anyone here have any suggestions?

It's very tempting to go to hospital because it's too hard to handle all of this from home however, I feel like it's my own fault that I haven't gotten any better given that I have not been drinking anywhere near enough fortisips. I don't want to go to the hospital and have my GI be mad at me because I wasn't doing the liquid diet properly. But you see, I've just started to get over a very bad chest infection (still having a lot of chest pain etc. but ever so slightly better) that required 2 rounds of antibiotics. So I wasn't overly well and nutrition seemed like the least of my problems. That on top of all my Crohn's issues has made for a total disaster right now. I know if I go to the hospital I'll probably need TPN or a nasogastric tube, as I have in the past when I couldn't tolerate oral nutrition, but I don't know, I just feel like they'll look at me like I'm an idiot because a) I didn't drink enough fortisips for them to actually help me, even though I did have a good reason for it and b) because I haven't actually vomited during this flare, it's just the nausea and stomach distention, pain and bowel movement issues that have stopped me from having the right amount of nutrition and fluids.

As I've said, I know I haven't made the situation any better for myself, but when you're sick as a dog the last thing on your mind is eating and drinking. Like when you feel nauseous and in pain etc. the last thing that you want to think about is food and drink. Plus, stress is my biggest trigger for my Crohn's, and right now I'm under a great deal of stress.
04-10-2016, 07:15 PM   #2
ronroush7
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Maybe you need something other than doing fortsips. As people have said in other threads, if there is any question about going to the ER, maybe you should go. People should be understanding.
04-10-2016, 07:23 PM   #3
Crohnie09
 
Join Date: Apr 2016
Maybe you need something other than doing fortsips. As people have said in other threads, if there is any question about going to the ER, maybe you should go. People should be understanding.
I was on Budesonide for around 5 days, but had to stop it due to severe anxiety, paranoia etc. which landed me in the ER because I felt like I was losing my mind.

I can't take pred as that stuff messes me up big time, I end up psychotic. I'm currently on mtx (have switched between oral and injection many times over the past 3 years) injections, which were only changed to injections this week, and also on infliximab. Yeah that's what I've found in the past, if contemplating going then it usually means you should go. I've just been putting it off as I turn 18 in 4 days and have lots of celebrations planned which will likely have to be cancelled anyway. I get admitted to hospital for 2-3 weeks every time I go to the ER, and I just don't want to be spending my birthday in there again I'm going to try calling my GI again, but I really don't like talking to him on the phone :/
04-10-2016, 07:32 PM   #4
ronroush7
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I hope your doctor can find the right mixture of medicines for you. Try to see your doctor or go to the ER soon


04-10-2016, 07:37 PM   #5
Crohnie09
 
Join Date: Apr 2016
I hope your doctor can find the right mixture of medicines for you. Try to see your doctor or go to the ER soon
Thank you! Gosh, I hope so too!
04-10-2016, 07:56 PM   #6
my little penguin
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EEN ( formula only no food ) can induce remission similar to steriods
Takes 6-8 weeks but no side effects
They use it a lot in kids

Ds drank peptamen Jr orally for 9 weeks

Good luck
Hope your Gi has answers
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04-10-2016, 08:01 PM   #7
Crohnie09
 
Join Date: Apr 2016
EEN ( formula only no food ) can induce remission similar to steriods
Takes 6-8 weeks but no side effects
They use it a lot in kids

Ds drank peptamen Jr orally for 9 weeks

Good luck
Hope your Gi has answers
Thank you I've been on EEN for the past 5-6 weeks and u fortunately it hasn't worked at all, even though it usually induce remission when I've done it in the past. The thing is, like I said, I haven't been drinking the right amount of it, due to being unwell and having an infection, so I suppose that's the reason it's not working. It's been a bit of a vicious circle, because on one hand, if I drink the correct amount my Crohn's will improve probably in the long run, but I'm not able to stomach anywhere near that amount, only 1/4 of it at the moment it's so confusing haha
04-10-2016, 08:05 PM   #8
my little penguin
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Are you using an ng tube?
A lot of kids place it at night get the right amount of calories while they sleep then pull it in the morning
Tagging clash and maya142
04-10-2016, 08:10 PM   #9
Crohnie09
 
Join Date: Apr 2016
Are you using an ng tube?
A lot of kids place it at night get the right amount of calories while they sleep then pull it in the morning
Tagging clash and maya142
I'm not using one at the moment as I like the taste of the fortisips, it's just the fact that I'm so uncomfortably full and nauseous and in pain from drinking them. I end up in the bathroom within half hour of drinking one same goes with drinking water.

I've used an NG in the past for around a year, I did EEN on and off for a year. I think if I end up going to the ER I'll likely be given an NG again or TPN depending on how bad my inflammation is. I've still got a few spare tubes and equipment for it at home, but I'd have to do bolus feeds with a syringe as I don't have my feeding pump anymore. So I suppose I should talk to my GI about it
04-10-2016, 08:50 PM   #10
Maya142
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I would try getting in touch with your GI. An NG tube and feeding pump may help - you may be able to tolerate the formula at a very slow rate.

My daughter inserted her NG tube every night and removed it in the morning. She needed to do continuous feeds - her stomach was such a mess, we didn't even bother trying bolus feeds.

She was eventually diagnosed with Gastroparesis - delayed gastric emptying - which explained the nausea, fullness, stomach pain and weight loss. In her case, the Gastroparesis was not related to the Crohn's (we think!) because her Crohn's was in remission at the time.

However, inflammation can cause delayed gastric emptying too.

She eventually needed an NJ tube and then a GJ tube to gain weight. She gained 23 lbs with the feeding tube and is finally doing better and feeling MUCH better!

I don't think your GI would be mad at you since you have been trying to drink the Fortisips - it's not your fault you cannot tolerated. I'd try your best to get in touch with him or her, but if you can't I wouldn't hesitate to go to the ER if you are very dehydrated, not able to drink your formula and losing weight.

My daughter got so malnourished and lost so much weight that when she was finally admitted and they started feeds, she developed "Refeeding syndrome" and her electrolytes were all over the place. Luckily, she was inpatient anyway and they were able to monitor it and she was fine, but being malnourished can quickly lead to lots of problems!

Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-10-2016, 11:20 PM   #11
Crohnie09
 
Join Date: Apr 2016
I would try getting in touch with your GI. An NG tube and feeding pump may help - you may be able to tolerate the formula at a very slow rate.

My daughter inserted her NG tube every night and removed it in the morning. She needed to do continuous feeds - her stomach was such a mess, we didn't even bother trying bolus feeds.

She was eventually diagnosed with Gastroparesis - delayed gastric emptying - which explained the nausea, fullness, stomach pain and weight loss. In her case, the Gastroparesis was not related to the Crohn's (we think!) because her Crohn's was in remission at the time.

However, inflammation can cause delayed gastric emptying too.

She eventually needed an NJ tube and then a GJ tube to gain weight. She gained 23 lbs with the feeding tube and is finally doing better and feeling MUCH better!

I don't think your GI would be mad at you since you have been trying to drink the Fortisips - it's not your fault you cannot tolerated. I'd try your best to get in touch with him or her, but if you can't I wouldn't hesitate to go to the ER if you are very dehydrated, not able to drink your formula and losing weight.

My daughter got so malnourished and lost so much weight that when she was finally admitted and they started feeds, she developed "Refeeding syndrome" and her electrolytes were all over the place. Luckily, she was inpatient anyway and they were able to monitor it and she was fine, but being malnourished can quickly lead to lots of problems!

Good luck!
Thank you

I used to have bolus feeds during the day but then continuous at night which I suppose is what will have to happen again this time, if kept something similar. Even when I finished on the EEN I was kept on overnight continuous feeds for extra nutrition, and then had to go on the EEN another 2 times so all up it was about a year that I had the NG feeds for.

I just called my GI's secretary so hopefully he returns my call. I have an appointment with him in a week anyway, but the situation is just getting worse and at this stage, everyday is getting more difficult so I think he'll likely tell me to come in to emergency. I have an MRE scheduled for May 2nd, but I also have a feeling that if I'm admitted to hospital they'll bring that forward as that's what they usually do. Gosh this illness is such a pain hey,
04-10-2016, 11:24 PM   #12
ronroush7
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I am sorry for what you are going through. Let us know how you are.

04-11-2016, 03:53 AM   #13
Crohnie09
 
Join Date: Apr 2016
I am sorry for what you are going through. Let us know how you are.
I'll let you know what happens, at this stage I'm just waiting for a call from my GI, which I doubt is going to happen tonight as he's currently in theatre. I suppose it'll just be another day of waiting unfortunately
04-11-2016, 09:37 PM   #14
Crohnie09
 
Join Date: Apr 2016
So, still no call back from my GI yet. Got next to no sleep lag night, even though I was so tired and exhausted, I just couldn't get to sleep. Having terrible hot flushes today, it feels like I'm on fire, yet no fever. Hoping I'll get a call sometime today, fingers crossed
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