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Back in hospital

valleysangel92

Moderator
Staff member
Hi all


I've been having a lot of pain this week that's become progressively more severe and finally ended up at the doctors this morning.

I got sent to my local hospital, who promptly told me they couldn't help and sent me to the one in the city. After bloods etc I've been admitted for IV fluids and pain relief plus possibly steroids depending on what gastro says in the morning.
 

Cat-a-Tonic

Super Moderator
I'm glad you're being cared for, but of course that sucks that you're back in the hospital. Hopefully they can come up with a good plan for you in the morning! In the meantime, I hope you're able to get some rest and feel at least a little bit better.
 

valleysangel92

Moderator
Staff member
Thankyou Cat, I'm impressed that I got a proper bed leas than an hour after they decided I was staying.. Just had some of that magic juice other wise known as morphine so much more comfy. Will be sure to update when I know any more :)
 
That sucks but hopefully they can give you some pain meds and maybe steroids so it is more tolerable. Keep up updated.
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
Sorry you're in the hospital. But, thankful to hear they've got ya where they hopefully can get things turning around for ya. Sending you a lot of hugs girl!!!!!!
 

valleysangel92

Moderator
Staff member
Thanks everyone, feeling a little more comfy. Have had 2 lots of morphine and paracetamol and 2 codine, been told to have the codine /paracetamol at the drugs round then ask for morphine inbetween. I'm absolutely shattered though, been up literally all night, first they couldn't get my pain controlled then some birds decided that 3am was time to get up and sang outside for pike 3 hours lol.

Generally this hospital is pretty good at making sure patients get chance to nap in the day though, they'll turn off lights and shut the blinds and not bother you unless you call them, so I should get a chance to catch up a bit now the pains settled.

Hoping to see some doctors in the next few hours. Still only on clear fluids, so thinking they might ask for scans etc but still sort of hoping they will let me home!

I will let you all know what they say, thankyou all for the support. Apologies if I'm rambling lol.
 

valleysangel92

Moderator
Staff member
Hello all,

I saw a consultant earlier, it wasn't my consultant but it was someone who works with him and they have been in contact.

I'm going to be staying in the hospital, at least until Monday /tuedsy. The plan is to get a pill cam done before I leave, so that we know where we are going.

They have a hunch that I have crohns in my small bowel, but they want to get a good look at it to be sure.

If the hunch is right then we will proceed with upping my meds etc, if not we will see what else could be happening.

I have been advised to stick to soft easy to eat foods, with the possibility of starting a modulen diet over the weekend. I should be getting moved to the gastro ward tomorrow where they will be able to put the correct diet etc in place.
 

valleysangel92

Moderator
Staff member
Hi all,

Just an update to say that my pill cam has been arranged for Tuesday morning. I'll be prepping tomorrow, the original plan was to use Kleenprep, but that stuff makes me hideously sick, so the consultant is considering moviprep or another alternative and they will discusss it with me tomorrow morning.

If they find inflammation with the pill cam then they are considering using a gastroscopy to get some samples (provided the area is in reach).

Hopefully after all this they will have a firm treatment plan. I am really hoping they will get all the tests done and dusted by the end of the week, I would love to be home by the weekend.

I will let you all know how things are going. Pill cam's are still quite a novelty in the UK so I'm really lucky to get offered one. There aren't many hospitals that use them and restrictions are tight on who's allowed them due to cost. Hopefully in the next few years they will become more widely available as they are much less invasive and dont require sedatives etc .
 
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Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
Good luck with that pillcam and the prep to with it. Still cheering you on in the hopes of some permanent maintenance meds coming your way. Lots of hugs being sent your way. :)
 
Pill cam's are still quite a novelty in the UK so I'm really lucky to get offered one. There aren't many hospitals that use them and restrictions are tight on who's allowed them due to cost. Hopefully in the next few years they will become more widely available as they are much less envasive and dont require sedatives etc .
I so understand the "system of things" concerning this area. Yes, Thank God this is a positive for you. I sure hope this will help you.
 

valleysangel92

Moderator
Staff member
Hi all

I had the capsule endoscopy yesterday, it was easy, the only difficulty was moving around with all the kit and the drip stand lol.

The consultant came to see me earlier and said that they are going to ask the dietitian to come and see me to set me up on a modulen diet. After that, and provided my pain is controlled, they are happy for me to get home.

I will get the results of the pill cam as an out patient. The consultant I've been under this week isn't my regular consultant (he's at another hospital this week), in fact he's my old consultant who I had a few issues with before. I'm hoping that my outpatient follow up will be with my regular consultant so that my treatment plan doesn't get too messed up and I can continue with care that I feel comfortable with.
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
Glad you are finally headed home and are sure you're jumping for joy too!!! Fingers crossed that your regular consultant will be there to take care of you and that you'll finally be able to get back to normal. Continuing to send lots of hugs your way.
 

valleysangel92

Moderator
Staff member
The dietitian won't be here until at least tomorrow afternoon, and that was after some persuasion from the nurses but hopefully they will stick to their word and I can be free
 
Glad that they have a plan that gets you home soon! Hopefully the pill cam gives them the information they need to approve the right treatment for you :thumleft:
 

valleysangel92

Moderator
Staff member
Well something is definitely going on.. I held my weight really well most of last year, I dropped half a stone at the start of the year, and i managed to get most of that back on. They've just weighed me, and I'm at 53KG (116lbs or 8st 3), when I was weighed at my last clinic appointment, I was 56KG (123lbs or 8st 8) . My appointment was only 2 weeks ago, and the week before I was admitted I couldn't satisfy my hunger, so my guess is that things aren't getting absorbed properly.
 

valleysangel92

Moderator
Staff member
Well, I finally got seen by the dietitian, unfortunately it was too late in the day for me to be able to go home as the doctors wanted to be able to see me and chat about what she said and check that the modulen doesn't make me sick, so I'll have to wait until tomorrow now. I am usually pretty good in hospital, if things are happening then I have no problem staying and being helped, but one thing that does frustrate me is when discharge keeps getting delayed because of one professional or another taking a long time to come ( they had first asked the dietitian to come talk to me last Friday, so its taken a week).

It actually took some persuading for her to give me the go-ahead to have it, as she kept going on about how difficult it is and trying to get me to have ensure again (which she should know doesn't agree with me, the amount of sugar makes me feel ill). The consultant had already told me that he's ok with me having small amounts of safe foods, as long as the modulen is my main food source, as he trusts me to be sensible with it and not go overboard and not do it all the time and he says patients often find it much easier to stick to it for the required time if they are allowed a little leeway. He only wanted the dietitian to chat with me to explain how to build it all up etc and what I can flavour it with and how to store the mixed drinks, so I wasn't expecting her to try and over-ride him and talk me out of going on it!

I will be checking with the doctor tomorrow that my care will be getting handed back to my regular team, and will make sure they know I have an appointment really soon so they don't panic too much about follow up ( the waiting lists are horrific ). The dietitian will be calling me on Monday to check how I am doing, and my IBD nurse will be back Monday too so I'll be able to drop her an E-mail and let her know whats been happening.

I've also been told that although my white blood cells are within the normal range, they are at the lower side of it, so it seems like even the super low dose of 6mp could be causing me problems (I've only been back on it 2 weeks and my bloods have dropped pretty far in that time so they think its quite likely that they will continue to drop.)
 
Ugh, I hate the negativity that we get from health professionals at times about going on a liquid diet or having them even as supplements at times! When they say it's hard and basically "why would you want to?" I think they have no idea how hard it is to be sick all the time and have very few options to try to get healthier - of course we want to do what we can!!!

I think you'll do fine on it! And yes little treats help you stick to a liquid diet - the study done in children at CHOP said they got the same results with a 90% liquid diet and 10% of calories coming from 'normal' food. Also I always have the drinks while reading or watching television at the start at least - it might sound silly but it made me come to associate it with something pleasurable and I really think it helped. And of course if you start feeling better physically that's a great motivation.

Any news on the pill cam results? Hope you're home very soon.
 

valleysangel92

Moderator
Staff member
The consultant was really positive about it, saying he thinks it will finally get me off the steroids, it should help me gain some weight, get my nutrient levels stable and get my pain levels down. So to me that's a chance that's more than worth taking. It's a consultant I don't always get on with, but on this occasion I completely see where he's coming from and totally appreciate him giving me this option. If nothing else it will give me some time to get stronger even if I do still end up on biologics. The dietitian just came with the wrong frame of mind I think, she obviously didn't realise how short on options I am now.

Thankyou, I was feeling so sure about it until the dietitian but I think the consultants opinion is what I should go with. The dietitian also questioned allowing me to have some normal food, which again is really the consultants choice. I think having it while doing something I enjoy sounds good. I'm hoping that when I have some strength back I'll be able to go for walks in the crisp spring air in the mountains, and the modulen is the perfect portable food for that :).


So far no news on that, there's something like 50,000 pictures to be analysed. They said it might not be reported on till Tuesday, but thankfully they aren't making me wait until they're back to go home.
 

UnXmas

Banned
When I'm supposed to wait to see doctors before discharge and they're not prompt about it, and especially when I know all that they'll have to say can be said on the phone, I just leave. It's not prison. I always leave before pharmacy sends my meds up as well, because that always takes about a day. I don't want to endure any more time in hospital than I have to, so I don't stick around when I know doctors have judged me medically fit for discharge.
 

valleysangel92

Moderator
Staff member
Well unfortunately I can't leave before they send my meds up because I have new ones that I don't have at home and I'll end up suffering if I don't. Hopefully it won't take too much longer now.
 
Oh pharmacy can take ages can't it? When I had surgery last summer, we all agreed at about 8am that I should go home that day but my meds weren't sent up to the ward until 8pm! And likewise I couldn't leave without them as I needed my pain meds. I think if I'd been an elderly patient they'd have had to keep me in...I was actually so tired I said maybe I should stay given that I'd waited all day and I was falling asleep but they needed the bed. It was a bit of a surprise when they suddenly produced a month's worth of anti-coagulant to inject myself with too without having told me that I'd need to or how to inject. My nurse was rather taken back that no one had instructed me but I said I wasn't waiting around to be shown because it was already late enough. But you don't always know and sometimes you need to meet the people in hospital because that's your best chance to get that help and advice you need. Sorry that you didn't have a useful time with the dietician. It's a shame that you had to wait around for someone to not really understand your situation and be discouraging. And kind of crazy that a dietician of all people shouldn't be encouraging about this! I think the Modulen is well worth trying though - for the nutritional benefits and for the potential to get disease activity under control and with all that possibility to gain from the treatment why wouldn't you be motivated? :dusty:

I hope that you are feeling healthier soon and you can get out in the mountains. Sounds so beautiful!:rosette1:
 

valleysangel92

Moderator
Staff member
I'm home :) got some modulen to start building the levels up slowly over a few days, will have to try and get some more from my GP as soon as I can (although they are unlikely to prescribe it before they get the letter from the dietitians) .

I've got some pain meds etc to tide me over and I'll be seeing my IBD nurse on the 8th of April
 
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