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Thank you everyone
So glad you are all here to talk ssome sense into me.
Am going to wake hubby up now and tell him I am off to a&e again!
Will update when i can Xxxxxxxxxxxxx
 
Am in a&e. Had ecg and bloods taken. Waiting to see the doc. Why is it when you walk through the door the pain goes away?! Still comes back every now and then. More later
 
Seen doc. Being admitted to the medical ward. Just had some lovely gtn spray under my tongue. Hate that stuff. Had a chest xray as well. They are not sure if its another pe, cardiac in some way or gastritis. More later.
 
Hi Shazz
Good to hear you have been admitted and that they are doing the investigations---about time someone did something for you.
Hope things go well for you.
Feel better soon
Hugs
Trysha
 
Thanks hun. Am back on medical assessment unit expect investigations. The gtn spray worked for a bit which is worrying but the pain is back. Its now 4.35am and I am wide awake! Will just doze. Think I am the youngest one in the bay of 6. More later xxxxxxx
 
:ghug:Go to bed and look what I miss! Glad you are on the medical ward this time. And hoping they can finally get a handle on what is going on!

Get well soon Shazz
 
They cant find anything so they are sending me home. All tests are normal. Bloods are normal. Back to square one.
 
Have asked to speak to a gi doc. Because its a bank holiday they dont know who is on so they will bleep whoever is on call. Hopefully they will get to me before they kick me out!
 
Thats that. No gastro doc on call and they wont call one in to see me. So back to calling ibd nurse and leaving messages tomorrow.
 
Terriernut, I think you say it all for us:) BTW how'd you do that? I think there's a few of those fitting for this conversation! Would add a few chicken stories, but don't want Shazz going for the belly laughs and hurting more than she already is:( Hugs to you Shazz. Xxxxxxxxxxxxxxxxxx
 
I am soooooo tired today. Slept on and off all night.
Aching in all my joints today. Knees and hips are the worst. Each time i get up or move they scream in pain. Have been told I do not have arthritis but it hurts!
Keep getting a lot of cramps in my feet as well. Its real weird.
Kinda feels like i am falling apart from all sides.
Going to try to get in to see my gp next week and get him to do a lactose test plus ask him to do a full blood work up. Going to include all the vitamins and minerals as i have not been able to eat properly for a while and i am concerned about the damage I am doing to my body.
Plus I need to start thinking of the possible upcoming op. Hoping it willbe in August but I might ask them to postpone it till September for a number of reasons. First my boys will be at school and will be kept busy each day so they wont worry so much. Secondly I want to be eating properly before my op and build up as much strength as i can. I know I will lose weight post op and although I have a bit of extra weight its going down each week.
Just rambling some thoughts down
Have managed to eat a peeled apple today! Hurt later but went down ok.
 
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No wonder everything hurts if you arent getting your vitamins and minerals and enough fluids.

Any thing back from the IBD or stoma nurse?
 
That would be a big fat NO!

Left another message with both. Will do the same again tomorrow.

Have noticed that when I eat I get really shaky and unsteady on my feet. Then after a while I get really sleepy as well.
 
Have got some cipro here. Wonder if that would help my stomach?

If I hear from the IBD nurse I will ask her if its a good idea to try it. I will try anything at the moment.
 
I wonder if your dizziness and fatigue after eating are a hypoglycemic reaction. After not eating much your blood sugar probably goes pretty wonky. I have no idea about cipro I'm afraid.
 
No, I wont.

Was just wondering if there was some magic pill I could take!

But seeing as i have been on Prednisolone since the beggining of May and I still have my stomach issues it might be worth considering. It was the ibd nnurse who gave them to me to try for stumpy but they didn't work on that.
 
I was starting to think that the Pred had started to kick stumpy's ass but he woke up again!
3 times in the last hour! I mean how much did they leave in there! Sheesh
 
Hahaha don't ask me, I just live here!!

The last one was all blood as well. But it was bright red so not too worried.

Its amazing how quickly we accept stuff isn't it?!

Now got horrendous pain on both sides. The left I understand cause that's where the stump is but the right side is just under my ribs to the front mmore than side.
Also, while I think of it, it hurt a bit at the end of my going for a wee. Didn't burn or anything like it would normally for a uti. It was more like around the back further up.

I am just a walking medical nightmare!
 
Well...I'm afraid this time I don't have much that I can say:( Except that I'm with you on going down on the pred. Gotta reduce my dose by 5mg on this coming saturday. Hope you can get some rest and take care:) Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
Reduced Pred to 10mg.
Feel horrid already. Woke up with pain in my stomach even before I had drank or eaten anything.
Stumpy is on overdrive.
Have left another message with the IBD nurse so hope to hear sometime.
The pain in my right side is getting worse and now I can't take a deep breath without a lot of pain. Trying to get through to my gp to get in to see someone. Am getting slightly worried about this new pain. Its difficult to get comfy even sitting or standing.
I don't feel as ssick as before so thats one good thing
 
Hello Shazz!
In reading your posts I hope all gets better soon! My Crohn's is in my colon so I don't know what the mouth and throat pain feels like and honestly can't imagine it. Stay stong and positive, and eventually it will get worked out!
 
Thanks guys.

The throat pain has lessened a lot to what it once was. The main pain i feel now is in my stomach and intestines after I eat or drink. And this new weird pain in my right side.
 
Is the pain upper right quandrant? I have heard that it is common for ibs patients to have gall bladder issues... as your doctor given you any meds to help the cramping? you might have said it in earlier posts but i didn't recognize some of the meds.
 
Have tried buscopan but it didn't do anything.
Might give it another go.
The pain is almost like a stitch you get after running but it doesn't go away.
 
I take a med called Bentyl, it works great for me...I also take a lot of super hot baths. For some reason I find a lot of comfort in heat. I will even put my heating pad in my pillow case and hug the pillow against my stomach to fall asleep.
 
I also love my heating pad. Sometimes it seens to offer me the greatest relief over any narcotic or pain type of med.
 
more to add

I have got a microwave wheat bag that i use a lot.
Would be lost without it

Just heard back from the IBD nurse. I am no longer under the gastro team. All problems I now have need to be addressed to the stoma team and surgical team. The advice I have been given is to contact the surgical team to get in to see my surgeon. He, though hhas already said he wont do a tthing until I am off of warfarin. So going around in blooy circles again!
Have got an appointment on monday to speak to the stoma team and see what can be done.
 
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Tried to phone e and make an appointment to see my surgeon. He has left a note on my notes to say he will see me at the end of July, no earlier, to 'discuss' my 2nd stage op.
What the help does he think, he is doing?
He has no right to just cut me off because he wont do my op any earlier.
I will be seeing the stoma team on Monday afternoon and will let them know what he has done.
Really not happy.
 
Don't blame you for not being happy. I wouldn't be either. Thankful to hear that you'll be seen on monday though. Maybe with a bit of chewing something might be done...Xxxxxxxxxxxx :eek:rder:
 
I am going to eat small amounts over the weekend so I will be in pain when i go.
They will see what its like for me.
They will have to refer me to see the surgeon.
 
Yeah I know.
Don't really want to do it but you know how much I have been through recently and i can't go on much more so feel as if its my only choice.
 
What reason can they give you for not being able to see a GI? I'm flumoxed. Yes, eat a nice tasty steak, and have the ambulance on standby.
 
The 'reason' they give me is because i have now gone down the surgery path and so fall under the umbrella of the surgical team. I then aasked what about the tests i need to forever rule out Crohns.
The answer I was given was the following. If it is felt by the surgical team that you need further tests then they will either contact the gi directly or arrange for the tests to be done by themselves.
I then asked wwhy this was not fully explained to me 18 weeks ago. Yes it that long since my op now!
Well that was a mix up! They thought the surgical team would tell me and the surgical team thought that the gi team would tell me so in the end I didn't get told how to play a game my life depends on!
Bloody ridiculous
The sooner I get my pouch done and get the hell away from them the better i will be I think!

Misty I wont eat a steak as i don't like meat! Nearly ate some popcorn this afternoon as the boys had some but i was strong and didn't!
Will find something else to have instead. Let's face it a cup of tea hurts like help so wont be that hard!
 
As you are experiencing further symptoms, this is not in the least bit ok. The surgical team arent there to do further assesment for different symtoms! You must get an advocate!
 
Couldn't have said it better myself toothy!

Have made a list of demands I want addressed on Monday. Gone now is the bit shy woman who was afraid to ask the big awesome consultants and nurses any questions.
They have unleashed something that at times even I am afraid of! Its sad that it has got to the point where I have to phone and phone different numbers before anyone will even speak to me.
 
Yep. Time to unleash the beast within and get mega-aggressive. Poke yourself in the butt and let them have it! You have been pushed aside too long and they have put you in an impossible situation.
 
Just googled galbladder symptoms and I have all but 1!!!!!
Its something I have suggested but they can't seem to see past the surgery.
Off to get my inr done tomorrow so I will see if i can see the duty doc
 
Hi Shazz
This is all very worrying ---what on earth are these doctors doing to you.
Perhaps if you see your GP something might get done.
Otherwise I think a complaint to the patient relations office at that hospital is in order--in fact I think you should make a complaint about mixed messages and failure to properly communicate, thus increasing your suffering.
What about your next door neighbour? Is she in any kind of official capacity that you could find useful?
Just a thought.
Feel better soon
Hugs and best wishes
Trysha
 
Thanks Trysha.
Will go to my gp tomorrow and see the dduty doc. They are pretty good up there so hopefully i will get somewhere.
My neighbour works in some capacity on the surgical assessment unit but only works monday-friday so no good if I get ill on a weekend!
Will definitely call on her if I end up there again, which, let's face it, is a high possibility!
Have been documenting all the epic failures of my care from beginning to today. Have kept all letters and evidence, including pictures of my notes from the penicillin screw up.
 
Sounds like its time to see a good solicitor!

been following your hassle and couldnt agree more with big trucks comment, fingers crossed for you, i know what its like being up against a brick wall, basically being told its a bag or nothing, when i know its not needed , you hang on in there and bulldoze your way forward
 
Thanks all.

I know my bag was needed but all the hassle following it most definitely was not!

I will be putting in a formal complaint and how much further it goes is really up to them.

Big truck- got my fingers crossed for you hun. Can't believe its happened again to you! Gonna have to rename you to wolverine double poops! Or regendoubpoop for regenerative double poops.
Wonder what will happen to me when I get my loop ileostomy! :ybatty:

Watch this space cause know it wont be boring! Although i really hope it is. Had enough drama to last me a lifetime!

Sweet dreams everyone. Xxxxxxxxxxxxx. :hug:
 
Hubby has got sickness and d!
Trying to stay away from him but not easy.
Don't think i could cope with a tummy bug at the moment. Shame cause he is really bad and he never gets ill. Don't know if its something he ate or a bug.
Wont get much sleep tonight. Like I do anyway!
 
Thanks hun.

Don't know what's going on tonight but my pain has just gone of the scale! Its in mid to upper right but also feels like it involves my bladder. I feel a lot of pressure on my bladder but it doesn't burn when i pee and i know my urine is all clear cause i had it checked recently.
I can feel it going into my back as well.
Just want it all to away now.

Big hugs to Sadie bear and you Xxxxxxxxxxxxx
 
Horrid night.
Hubby throwing up all night.
Horrendous stomach pain - me.
No sleep - either of us.
Had to cancel my plans for inr and seeing a doc today.
Pain is getting worse. Not going away like usual.
Have to grin and bear it for now at least
 
That day has just gone from bad to worse.
Had to go shopping by myself as hubby not well enough.
Sorting the kids out as well.
The pain on the right side is still there. Its occasionally a really sharp pain that takes my breath away but most of the time its a really dull deep ache that's there all the time.
Also got pain on the lower left side just by my hip. Am thinking this could be my stump. Its a dull ache, not too bad at the moment.
Gonna be a wreck by the time Monday rolls around and I go and see the stoma team!
 
Heres hoping the stoma team can help. They can really call the shots on alot of things. Dont shop Shazz...have it delivered! Especially with hubby ill too. I hope you both see improvements this weekend.
 
Am going to keep going all weekend with the view of them seeing me on Monday. I will be exhausted, cranky and in a lot of pain.
They will get it how it is. No frills and no holding back!
How I should be I think.
Am soooo tired already!
 
I'm sorry about all this:( Thankfully you'll be seen on monday. They won't be prepared for you, but you sure will be prepared for them! Husband has that cold stuff going around and this morning I came down with it. Already been coughing today. Great time for it to happen too. Just when we got our house back from the birds!

3 older ones went away yesterday and the first one will be sacrificed sometime today and eaten within the next week or so. Other 2 will be allowed to lay until they stop laying eggs and then will be sacrificed and eaten as well. 5 younger ones spent the night in their new house last night. Husband is checking on them right now. Last night when we checked on them, they were huddled next to the door calling us telling us that they were done playing and ready to come home to us in the house. Xxxxxxxxxxxx
 
Think hubby got a tummy bug from somewhere.

Bless the little campers! Bet they wanted to come back indoors with you and hubby for the nnight. They probably think that's their house now.

Not fair that you got a cold/bug thing as well. Hope it goes away soonest.

Sending you hugs hun.:hug::hug:
 
What can we do with those hubby's of ours?:ybatty:

Little campers are doing better today. I'll check on them later on before going to work too. Right now they're just afraid we're gonna forget about them. Locking them up till our weekend tue,wed or thur next week so they know where their home is. Then, we'll let them out and I'm sure they'll be attacking us since they're so used to being played with now.

No, not fair I got this bug. But, one thing I keep hearing is life isn't fair. Sending you hugs as well. Talk to ya later. Gonna go lay down for a bit. :hug: :ghug:
 
Shazz of i were you I would consider switching medical teams, the things they are putting you through! I know now would be very inconvenient because you are half way through your procedure but they are being aweful. and its your life they are messing with. Im sure the stress of all this isn't helping your Crohn's either! I'm keeping you in my thoughts and I hope you get answers soon!
 
Am stressed out my head!

Its not easy to change docs or teams. The hospital I am at is the only one near me. The next one is 50 miles away.
Plus like you say being in the middle of my procedures and all.
I am off to see the stoma team on Monday so am hoping I can get somewhere with them.
Would like to know why I am in so much pain though. Getting on my bloody nerves now!
 
I can honestly say that we're in the same boat with the docs. Only difference is that I've got this insurance till the end of the year. At the end of the year, I can choose a different insurance who has different docs. But for now, I'm stumbling along with you Shazz...Xxxxxxxxxxxxx :hug:
 
If the communication had been better i would not be suffering like I am.
Its just ridiculous that the different departments in a hospital can't get a message from one to the other on what needs to happen and who I need to see. The fact tthat I was not told wwho my point of contact was after my op was bad enough but it just gets worse.
The fact that I am stuck with these idiots only makes it harder to put any trust in them. That in itself is harming my care.
 
Pain gone through the roof again.
I think it must be my gallbladder as its near enough the same time each night.
Its also making me feel sick. Have taken an anti sickness tablet but its coming in waves.
The pain is right across my stomach mostly on the right side. Also making my back ache.
Got really bad d into my bag as well. Had to empty it 2 times in the last hour. Not really had much to eat but I did manage some white bread and peanut butter. Just went straight through!
Taken 2 codeine tablets to see if it can take the edge off. So far not working!
Roll on Monday
 
Gallbladder, liver, pancreas, TI. All of which require a bloomin GI which they seem unwilling to provide. And frankly...If I were you the solicitor would've already been instructed!
 
Oh Misty how I wish I could take you with me on Monday!
Somehow the threat 'I have a Misty and I'm not afraid to use her' would be lost on them!
 
Hi Shazz
I agree with Terriernut
Sounds like the time I had an acute gallbladder, thank goodness the GB has been removed what a relief.
They really have to do more for you, have you tried the patient help line, might be worth a try.
Trouble is with all the suffering it can sometimes be too much to take any action.
Hope you will get some help sooner than later.
Hugs
Trysha
 
I am just cconcentrating oon getting better for now. Its taking up all my energy just getting through each day at the moment.
I have all my evidence and i will make a decision when i am not in so much pain, exhausted and sleep deprived!
The decision being how far I take my complaint.
 
You are taking your husband in with you on monday aren't you? It's sounding more and more like these people are needing a good dose of husband whiplash! I know that if it were me, mine would be rearing and ready to go! :eek:rder::ymad::hug:
 
My mum is coming with me.
Now that she understands how poorly I am. Up until january she was still asking when i was going to get over it already.
Gotta love her.
Never got on up until I had my op. She has been really good recently. She takes alex to school every daya and brings him home again when she has finished work.
 
Well. Took a turn for the worse last night. Started being sick at about 1am. Ended up in a&e. Saw a doc who was fab. He got fluids into me, put a catheter in to monitor my urine output and then put a nasal gastric tube down to drain my stomach of any nasty stuff. He then ordered chest and abdominal xrays to rule out a blockage or stricture. He then got me some morphine for pain relief. No blockage or stricture so thats good news. They now think it could be gallstones! Waiting for an ultrasound scan to see. More later xxxxxxx
 
Gallstones it is! Not sure of the plan yet as just had my scan. Got 1 gigantic one and lots of smaller ones. Will let you know what they decide. He did say the name for what I had something to do with the opening to the gallbladder. Col something sorry
 
Cholecystitis?

Wow! Gallstones, eh? I had them too and had my gallbladder yanked. I hate that you are going through this, but hooray that you finally have some answers AND SOMEBODY WHO IS TAKING CARE OF YOU!!!!
 
Yeah think that was it toothy. Glad I came in when I did though. And yes, there are doctors here who know what they are doing!
 
At last! Keep documenting everything that's said and done, it's a disgrace it took this long for a diagnosis, but hey it's the nhs and we all know they're skint!!
 
Hi Shazz
Thank goodness you are now being properly cared for and that you have had some pain relief.
That is one of the worst pains I have ever had.No gallbladder now--relief.
Hope your pathways are smoother from here on in.
Hugs and best wishes
Trysha
 
:dance: Thank God. I mean, not that you have gallstones, but that at LAST someone is seeing you and taking care of you!!!!
 
awesome news! well... not awesome but you know what I mean lol.. glad you have an answer and they can damn well DO something!! xoxo
 
I think only here could we be happy that gallstones have been found :rof: I really hope this can be the turning point for you getting the treatment you deserve.

AB
xxxx
 
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Hi Shazz!! Well, I'm glad they at least found what was wrong with you!!! I had gallstones as well as a barely functioning gallbladder, it was taken out an I was much much better! I am so glad that finally someone figured this out for you!!
 
Thanks everyone. I am feeling better today. Need to get some fluids in me and then I can come home and have my gallbladder taken out at a later date. Its not classed as an emergency at the moment but if it gets worse I will be bumped up the list. They are treating my bilary colic and getting the pain under control. Still really struggling with nausea though. Whenever I try to eat or drink I feel really sick. Have being sick! The pain is still in the background but nowhere near as bad as it was so thats good. My liver function was pretty non existant when they brought me in so need to have bloods done in the morning to check levels. Have got my own room so well pleased! Will update more tomorrow.
 
:dance: Private room!! Well, you are finally getting sorted! I am hoping you are truly going to be on the mend. Sorry about the pain on eating still. But, hopefully once you are being treated for the issue, that will subside a bit until you can get rid of your gallbladder.
:kiss:
 

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