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Gotta keep trying the liquids. If that doesnt work they need to put you on ET. Write down everything you are eating and drinking, and your pain level, that way you can see what is happening and report to GI.

Sorry mate.
 
Thanks hun. Will do.
Going to start from Wednesday when they kicked me out of hospital.

Good news. I was chatting to my next door neighbor today. She is a nice enough lady but always been a bit standofish with us. Mentioned I had not been very well and out came my story. Well it turns out she is someone of standing at the hospital. She has given me her name and said if ever I am in the surgical assessment unit again to get the staff to bleep her and she will come and shout at someone!

A bit of a break at last!

Might try some more broth tomorrow. Can't face anything else today. Have had a few fresubins as well.
 
Another horrendous night.
Alex was up poorly as well so that didn't help, bless him. Sore throat and chest infection but of course when I took him to tthe docs his chest is clear so they wont give him anything.
Anyway. I feel so shaky and weak today it feels like i am going to pass out. I made myself have 2 fresubins this morning but i know its not enough. Am sweating and shaky and my legs feel like rubber. My ears are ringing and i just don't feel right but ii really don't want to go back to hospital.
Am waiting for a rreturn call from my ibd nurse as I saw my gp this morning and he has said i cannot go on the way I am with only having fresubins. Could not agree more. So trying to get an appointment with a gi finally to see if they ccan get me something else sorted.
I think the only option left for me now is enteral nutrition so I will do some research on that.
Fed up with feeling so weak all the time.
 
No its not Toothy hun.

Plus am still on Prednisolone as well so that's making me feel horrid. Can't drop below 20mg now. Been on it for a month. Each time I taper my stumpy flares really bad again.
Can't bloody win!
Had some more broth but now am in sso much pain don't know what to do.
I am starting to think maybe it is all in my head and i need to just pull myself together.
I don't know anymore.
 
The not eating and drinking enough is doing a number on you. Lets hope they get you into the GI ASAP!
 
Not heard today so will bbe tomorrow now before I hear back.
Everything hurts!
Going to take some codeine and see if that takes the edge off. Feeling sick as well now so have taken an anti sickness tablet.
So tired though. Everything is an effort.
 
Thank you hun. You doing ok?

Can barely stand now due to pain. Just don't understand why this is happening. I think if I knew whyni wwould be able to deal with it better. Sounds stupid but that's the way i work!
 
I feel your pain Shazz
Hope things will move faster and that you will be seen by a GI who knows what he/she is talking about.
Hugs and best wishes
Trysha
 
My goodness:( Sure wish threatening you well would work. Sounds like you need it bad:( Sorry to hear all this Shazz. Hopefully they'll get you in soon.

Gavin ended up having an all nighter at work fixing airplanes in another state last night. So, I know about not sleeping much. Never sleep well in an empty house. Plus, been having trouble with the toilet running off and on in the bathroom in our room. Husband calls it the ghost toilet:)

Take care today and am sending you lots of hugs. Lisa Xxxxxxxxxxxxxxxxxxxxxxxxxxx
 
Hi shazz sorry to hear your still having such a rough time, what about your husband getting an appt with whoever is supposed to be overseeing your care and demanding something more be done, this seems to be the way the nhs works now unless you shout your palmed off, I've had the same problems in the past but am lucky to have a sister who is a barrister and isn't fobbed off by anyone! Take care.
 
Am having problems just getting an appointment!
Once I have an appointmemt I will go in guns blazing but its just getting it thats the problem.
It is ggood to have someone else on your side though and I do. My hubby and best friend are good advocates for me. Just need to get a foot in the door.

Had another horrid night. The pain finally eased off around 3.30am so got a few hours sleep at least. But am so shaky and weak and feel like crap. I know that's not going to change until I can eat but i am afraid to even try now.

Hope you are doing better now hun.
Xxxxxxxxxxxxx
 
The pred can be causing alot of the shakiness, etc as well as the lack of food. Why since you've been in hospital they havent automatically given you a follow up appt is beyond me!?
 
This i ddo kknow!
Its because when ii got admitted as an eemergency, I got put under the general surgical team. As soon as they ddiscovered they couldn't cut anything out of me they lost interest. Did the bbasic minimum of care and sent me home again. Its how it works.
Have reduced the pred to 15 today. Figure I am better off of it.
 
I am still fairly new to this but have they done a CTA on you yet? It is a CT Angiogram and for you it should be done on your abdomen. My GI had them run it because of my intense pain. However, mine wasnt just with eating, like yours is. What you are describing sounds like something called "mesenteric enteritis". My spelling may be off but the main symptom is extreme pain after eating. It is lack of blood flow to your intestines, causing extreme pain after eating while digestion occurs. It can be seen very easily with a CTA, which is a very easy test. It probably isnt that but since your bloodwork and scope are fine I thought I would mention it because when I read your story this is what comes to mind. Good luck and I hope you get relief soon.
 
Thank you for your suggestion.
Like you said my bloods are all ok. As always. Think my crp was raised but only to 50.
Xxxxxxx
 
hi shazz!

I don't know how you are staying sane :( You've been through the ringer. Big big hugs from me and Sadie!!!
 
Me neither!
Don't know how much more I can take though.

Big hugs back Xxxxxxxxxxxxx

Have noticed that whenever I drink something I feel really sleepy after. Had a fresubin and a cup of tea this morning and fell asleep on the sofa for 20 minutes. Weird!
 
Last edited:
Did a quick check of the ingredients of my meds and out of 9 medications I take every day 7 have lactose in some form or another in them.
This might not be the route cause but I am pretty sure its not helping!
Prednisolone, citalopram, codeine and loperamide to name a few!
 
They should easily be able to check if you are lactose intolerant next time you have an appt with the Dr or the GI.
 
Yeah I thing I am cause whenever I drink milk I get really bad stomach cramps and d and feel sick.
Will see what they say though
 
Would be nice wouldn't it!
Don't hold out too much hope though.
Still no call back from IBD nurse. Phoned again today.
 
Shazz, I am lactose intolerant. Everyday I take a supplement just in case I happen to have lactose in something I consume. If you do find out that you are, let me know and I'll let you know what I take. It seems to help me. Hopefully they've got it where you live too:) Xxxxxxxxxxxxxxx
 
After another horrid day of being unable to do anything my bags have started playing me up.

Lots of itching and the tickle I don't like. Have changed it and there is a bit of redness and bleeding around the stoma site. Ozzie is also sticking out a lot. He is about 2 inches and is now very prominent on my stomach.

Time to try some new bags I think. Don't need the pelican bags that pushed him out anymore.

Something else to deal with tomorrow.

Off to bed now.
Night all Xxxxxxxxxxxxx
 
Didn't sleep well again.

I don't know what to do with me either! It seems like if it could go wrong it will.

Going back to bed in a bit once my mum has taken Alex to school. I feel so lazy not being able to do anything but sleep.
Will phone the stoma team today as well.
 
Nearly passed out today. Just walked from the front room to my bedroom, about 15 feet, and came over all funny!
It was very reminiscent of my blood clots. Heart racing, sweaty, dizzy and vision tunneling but it went away after about 10 minutes of being propped up on the bed with the fan blowing cool air on me.
Way weird!
My inr has been royally screwed by the hospital last week. They dropped it to 1.9 for the scope and i am having a real hard time getting it back up to my therapeutic range again. A week after leaving the hospital and being on 4mg warfarin and its still 1.9! It needs to be 2.5-3.0. Its way to tthick as it is and I am worried that with not being able to move around as much I am giving myself more bloody clots.

Stoma team have not got back to me and neither has the ibd nurse again! Am I persona non grata?

Anyway just wanted to rant and vent away to you lot cause i know yyou get it.

Kids will be home from school in a bit and i need to do the whole 'I am fine nothing is wrong with me' bit for them. Its bloody exhausting being me sometimes!
 
Ahh I could scream in frustration for you! Hope you get an appt soon and demand answers/treatment take care.
 
Shazz, this is too much. What the hell is going on over there? No care at the hospital, no followup from anyone, and now not even your IBD nurse calling back? This whole thing is out of whack.

That's it. You are moving to the US and Misty should come with you.
 
I'm happy to come with Shazz as soon as I'm medically insured. Gawd knows I paid enough in taxes there over the years.
Honestly Shazz, you gotta scream for help now.
 
I have been but nobody is listening!

Not going to get anywhere now cause its the jubilee weekend so everything will shut down till Wednesday. Fed up with it here really. Fed up with just being a statistic and a number and being ignored because all my observations are always fine.

Getting to tired to fight back now though. Just can't be bothered to do it when all i get is thrown out and told to get on with it.

Now I am feeling sorry for myself and i hate doing that.

Grrrrrrrrrrrrr
 
Gotta love those sore throats! My husband's been dealing with that stuff going around and a few days ago I got that sore throat too. Been doing my best to get what vitamin C I can to fight it. Seems when we have one thing going, gotta have it all:( Right?
 
The pain and nausea are at a whole new level this morning.
Plus a new pain in my lower back. Whenever I take a deep breath in it hurts like help. Just below my ribs on the right hand side. Not had this before so will see what happens here.

Going to have a day in bed i think. With pain meds and anti sickness tablets and just sip at my lovely fresubin drinks.
 
Another usual bad night.

This morning more nausea and a lot of pain when I move. Mostly around Ozzie.
Blinding headache as well and really dizzy!

Managed to actually eat some noodles yesterday. Swallowed them ok, not too much hassle, but the stomach pain after was bad.

Not sure whether or not to go seek some medical advice about the stoma pain. Its mostly when i go from sitting to standing and is a dull ache. Occasionally a sharp pain will rip through me but nnot often. Don't know if i have the energy to go sit in a waiting room again.
 
She's not there today I don't think.
Hubby is getting frustrated cause we can't do anything. He wont go out without me and i am not up to going out walking and doing stuff we usually do.
Part of me wants to go back to a&e and get sorted. The other part of me knows they wont sort me out even if i go there so whats the point!
We are worried that something is going on in my intestines and/or stomach and its being ignored because I keep being put under the surgeons who can't cut anything out of me yet.
Don't know what to do. Going around in circles.
 
I know where I live there are different ERs. Is it possible to go to a different hospital since you are getting such horrble care at the one by you? Even if you have to drive a bit further it may be worth it.
 
The nearest one is 50 miles away.
I will see how it goes for now. If the pain gets worse I will go to a&e and try to get some answers.
 
Oh man Shazz...:hug:...I do follow each day what is happening and I feel so much for you and all you are going through. :(

:hang: mate. You are one tough lady! I just wish with all my might that you are soon able to find some lasting peace and relief.

Dusty. :heart:
 
Thanks Dusty.

I am trying to hang on but its getting harder. Especially because i know there is nothing to be done really. Well there is but i know it wont be done!
 
I know that feeling of hanging on by your fingertips and wondering just how long you can do it for...:hug:...We're all hanging there with ya hun!

Much love, :heart:
Dusty. xxx
 
I am just thinking that if i can get to the end of july, that's when my warfarin ends. But what kind if state is my body going to be in by that time if i am afraid to eat because of pain and never ending nausea?
Have already lost 2 1/2 stone since February and while I have still got some spare I will need that to get me through the other ops I need.
Going along with the get whatever I can in me now even if its not the best food I can just to get my calories up. Plus i always have my fresubins for the days when I just cannot face food of any sort.
Just had some lovely salty pretzels with a glass of vanilla soy milk. Quite nice, apart from the pain!
 
So been feeling hungry for the first time in absolutely ages!
That will be the prednisolone I think.
Am now down to 15 mg a week until Friday, then down to 10mg.
Had half a tin of oxtail soup, didn't eat the meat bits in it and some more pretzels.
Lots of pain and nausea put took 2 codeine and an anti sickness tablet as well.
Have just sat/lounged on the bed again today only getting up when I need to. Still really painful around Ozzie. Wondering if its the bags I use. Being convex bags they do put pressure on the area around Ozzie but because I have lost more weight I don't think I need them anymore.
Will have to wait till Wednesday to speak to someone.
Will soldier on as usual.
 
I am hoping that they get you off this wafarin! I would really like to know why you havent been given an appt with a GI??!!!

As for the skin around Ozzie hurting, is it inflamed at all? What does it look like? Do you use barrier rings (i'm blonde, i cant remember) And, have you been measuring Ozzie?

Dont hang in there...go kick some ass Shazzy!! Damnit I wish you were closer.
 
The skin around Ozzie is quite sore and I use barrier rings. I use the hollister mouldable ones so get a good snug fit. Had a nice shower and good clean earlier and the skin does not look too good. Put some stoma powder on it after my shower so hopefully that will help.
Still been measuring Ozzie and he has stayed the same in width but is sticking out more now from my abdomen.
Have not been able to get a call back from the IBD nurse to arrange a gi appointment but will be calling again on Wednesday. Same for the stoma care nurses.
As for ass kicking - not going to a&e they wont do anything cause bloods will be fine. Not going through emergency docs cause i will end up on surgical assessment unit and discharged cause bloods will be fine and there will be nothing to be cut out!
No where else for me to go until Wednesday when the country decides to start up again!
I hate sounding soso negative but I cant even be bothered to sugar coat it for myself anymore!
 
Its no wonder you sound negative! What has happened when you specifically requested to see a GI when you have been hospitalized?
 
Have been told you just get assigned a doctor on admission. Even when i have asked the doctor assigned to me to see a gastro doc they just look at you like your nuts!
If it gets worse i will go back to a&e and demand to see a gi. Don't hold out much hope though!
 
Shazzy, you can file a serious official complaint against them for this. You've been diagnosed with UC, have suspected crohns, and have symtoms. I dont give a flying monkeys ass what your bloods say, plenty have normal blood work during a flare. And any GI worth a damn knows that. A&E, GI must come ASAP. Get seen before they strike this month.
 
Who is striking now?

Will do guys and thanks for the shouting at. Needed it I think.

Loves you lots Xxxxxxxxxxxxx
 
Drs going on strike in June. One day. Only if its non emergency. First time since 1975.

So....get in while you can!
 
I'm one of the smallest ones in my section. But, the joke at work is not to make Lisa mad because they say I get a bit scary:)

We have 3 close to 3 year old chickens that we'll be getting rid of in our backyard this week. The day I did my pill cam we got 5 2 week olds that we've been training and have been living in our dining room in a box that's gotten pretty big. Once the big ones are gone the little ones will be going outside. Husband wants you to know that if you were closer you could spend some time with our service chickens:)
 
Can they use the vacuum? :rof: There Shazzy, we will sneak the chickens in.

I like the idea of service chickens. I have a dog in training for service work to help people, so having had chickens...some of them are darn clever believe it or not, so I cant see why they cant be of service...if they choose to do so.
 
For a moment i got the whole wrong end of the "service" bit!!
Belly really hurting now!
Hahahahaha

I like the idea though. I still have not given up on my island for us all. Plenty of room for chickens and anyone else.
 
I got a service hoover, it's called a roomba. (I've named her Lucy) Shame we cant teach animals to do housework. Damn.

Glad you had a belly laugh. I'm interested to learn more about these chickens!
 
Awwww! Just tell them what you wish them to do. Animals understand alot more than we give them credit for. (believe me they do)
 
Aw thats a fab idea!

Love animals. They are so calming and make you forget how much pain you are in for a while.
 
Not long after my husband's mom passed away we got these older ones. Gavin decided he wanted chickens. I forget why. But, he figured out how to make the coop for them outside and did all his reading about caring for them and we got them. If it were up to me I would have liked a lap kitty. But, I guess these are alright. Our friendliest one just up and died one day and these 3 haven't been the same since. They're slowing down on their egg laying and one out of the 3 almost died on us. So, we decided it's time for them to go. It's really been nice getting the eggs from our own chickens and in some ways I think they almost do better with my tummy. They really don't take a whole lot of care and I'm afraid they get fed from both sides of the fence:) If you're interested in getting your own let me know. If you can give me your email through a message on our profile I can send you info from my husband on it.
 
I would love to have chickens but at the moment can barely care for myself.
Maybe one day. We grow all our own fruit and most of our veg which I love doing.
I will keep you in mind for lots of info though. Xxxxxxxxxxxxx
 
No problem:) To tell the truth, my husband is the one that does the main upkeep for our brats. But, I help too. Mostly though, I get the eggs and check on them. We dry their egg shells, crush them and feed them back to the chickens as calcium and I'm the one that does that too. You're right though, especially when I'm not feeling good they sense it, kinda hover around me and act a bit different. I think you'd enjoy having chicken tv in your backyard. But, remember that nothing is safe around them. So, if you want to keep any vegetables or anything you want to eat you'll have to cage it to keep them from eating it! We learned that the hard way:)
 
Any time you guys need a smile let me know. I've got a few stories about us owning chickens. It's been pretty entertaining at our place. Sometimes I have to admit that they sort of make up for us not having actual kids. Because, having these chickens can be like having a bunch of toddlers.

Could stay and talk with you guys all day. But, gotta work at 4pm pacific time so need to leave soon. BTW still need to make the babies happy and check on the ones outside before I go. So, need to sign off for now. Have a good day everyone:) Xxxxxxxxxxx
 
Hey girls:) Just thought I'd give you one of my husbands' websites about chickens. There are a lot of great people here too that you can ask questions about owning your own. They've been really helpful especially when Gavin's not been sure of what to do with ours. Even better, there's pictures there for you! Enjoy:) Xxxxxxxxxx Lisa

www.backyardchickens.com
 
Hi Shazz
Does your Stoma have any signs of active disease?
Mine was agonizingly painful before I started my Humira shots.
The active disease effected the skin around the Stoma and it was all torn and ulcerated.
I just wonder if your Stoma pain may be from untreated disease.
Gosh I hope you're feeling better though.
You are such a trouper and I have no idea how you have maintained such a good humor through all your pain and troubles.

Xx
 
There is some sore skin around my stoma but not sure if its disease or not. It does look more torn than anything else though so who knows.
Am trying tto get a gi appointment so they ccan properly look into the possibility of me having Crohns and not UC as first thought. No luck so far though.
I am so lucky to have a good support system of family and friends around me including everyone on here. Plus I am a glass half full kinda girl! Can't help it. Though it is getting more and more difficult recently.
Hope you are well hun.
Xxxxxxxxxxxxx
 
I found a wet cool flannel or facewasher very soothing when my Stoma was inflamed.
Might give you a little relief from the pain.
Mine was like a searing kinda pain. Ouch!!
 
I get the tickle and itch so know something is not right. And around my bag itches like mad where it never did before. My stoma still looks nice and pink and there are no ulcers on it, so that's good. Am defo worried about something going on in my stomach/intestines though.
Am getting a lot of air/wind in my bag and my stomach is in constant mid level pain now whether I have eaten something or not. The possibility of disease or even something non IBD related in my intestines has occurred to me but then it could be just stress.
I feel like if it is stress I am bloody well entitled after all i have been through!
How are you doing now?
 
Have had some more soup today and had a slice of fresh bread!
Progress!!!
But still the ppain was almost instant today after eating.
Had 2 ice lollies and some pretzels this afternoon.
I am so tired today and really really dizzy. Each time I stand up, even really slowly, I can feel myself going. Its horrible. Heart is pounding pretty hard as well.
Keeping my fluids up. Having soya milk in vanilla and chocolate flavors. Plus tea and one cup of coffee!
Really enjoyed the coffee even it went straight to my bag. Lol
 
Have now got pains in my chest again.
Am hoping its just indigestion so have taken some gaviscon stuff to see of that helps.
Pretty painful though. Not like any in digestion I have had before.
Will take some paracetamol and see how it goes.
If no improvement I will go to a&e
 
I hope the pain goes away soon. But I would not wait long if you are having chest pains, that is not good at all!
 
Pain still here.
Need to make a decision now.
Out of hours docs or a&e?
A&e would be better I think.
Might be off there soon then.
Will let you know when I can
 
Oh, you better be careful over a bank holiday weekend, awful time for A&E...please be well soon!!!
 
Hi Shazz
So sorry to hear you are having problems.
What kind of medical team do you have over there? does not sound like too much caring.
Hope things will soon resolve for you and hopefully be easy to fix.
Feel better soon
Hugs and best wishes
Trysha
 
Thanks everyone.
I am concerned that if i go to a&e I will just sit there with all the drunk idiots!

Also though if I go to emergency docs I will be sent to surgical/medical assessment unit to do the same.

Got to do something though. This pain is coming in waves and they are almost at a 9. Its probably just in digestion but not sure if I want to chance it being something else.
 
Still at home.
Phoned the emergency docs and they said see how I go but if it doesn't improve to go to a&e.
They have said its absolutely mental over there and the emergency docs are swamped as well.(the a&e and emergency docs are across the parking lot from each other). The emergency doc I spoke to was very good and really nice. He basically told me there is a 4 hour wait to be seen at the emergency docs and currently a 5 1/2 hour wait wait for minors at a&e. He said if I went to a&e I should be seen as soon as there was a bed available but i have been told that before.
Have taken some more paracetamol and 2 x 30mg codeine tablets. Will give it an hour if no improvement I will go somewhere.
I will describe my symptoms for you.
Ears are ringing - this seems tto be constant thing with me recently, don't know what it means if anything.
Pain in chest - ladies think of where your under band for your bra goes, just under your ****s, all the way around in a band.
Also pain in my neck and left hand side of my jaw.
Also pain in the centre of my chest pretty much on the chest bone between my ****s.
The pain itself is sharp and comes in waves, almost like contractions, it builds for a minute or so the reaches a crest that lasts for about 3 minutes then dissipates and starts to build again.
Its not the same as the pe pain i had but similar.
I am not sweating, chilled or have a temperature. I did last time.
I am dizzy, nothing new to me, and a little short of breath on moving, nothing new to me either.
If I go to a&e and they say it just in digestion I will feel a right plonker. Its bear able at the moment until it teachers its crest then it hurts like f#*k for a few minutes. Then its hard to breathe.
Opinions please! I know i am stalling but don't want to put my family through anything more.
Xxxxxxxxxxxxx
 
Yeah I know but don't want to go to that hellhole again!

Its not getting any better so I will go, promise.
Xxxxxxxxxxxxx
 
Glad to hear that you've got someone helpful over there. With all those symptoms together, I think I would get at least looked at. Know where you're going with the family though. But, your health is more important than anything. Take care. Xxxxxxxxxxxx
 
When you go, start off with the chest pain and jaw pain, then mention your previous PE. SURELY that will get you seen.
 

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