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shazz

shazz

Joined
Nov 14, 2011
Messages
950
Hi all.

Not had a very good day again today. Surprise surprise!
Had a lot of pain and discomfort all across my abdomen and it hurts like heck to stand up from sitting.
Phoned my gp surgery to see if i could get someone out to see me. Really didn't feel like a 15 minute bus ride to the docs. The duty doc phoned me back and said there is no one available to come out and see you.
Luckily my sister came in so she took me up. I went in to see him and he asked for a brief history. 10 minutes later aand he was dumbfounded. He couldn't believe that had been bleeding from my rectal stump for 5 weeks and not had my fbc checked. Also that i had been discharged by the surgeon who performed the surgery without being taken on by the next surgeon. Finally that i had been given some pretty strong meds without even being examined.
He has suggested stopping my meds for now and see what happens.
I was thinking of doing this anyway to be honest.
He has said to me that there is nothing he can do because he has to go through the hospital to get me seen. The people at the hospital who I need to be seen by wont see me because I am on warfarin due to the pe.
So what do I do then?
Do I just get on with it for 6 months or so until they will see me and do stage 2 of my op?
I have to go back o the gp surgery tomorow to have my inr checked. The doc said if i am still in pain let the nurse know and she will get me in to see the duty doc again.
Is it worth it if they cant do anything?
Am feeling really down today, the first time for a long long time so maybe that is affecting me.
Just thought i would ask what anyone else thought.

Xxxxxxxxxxxxx
 
Oh Shazz, I am so sorry to hear that you still seem to be getting the run around with all the docs. I don't know how the British system works and I haven't had surgery for IBD, so I can't give any suggestions for those issues. I just wanted to give you some support.

I have had a two year battle with a variety of health problems, and the better I get and the further away from the initial and severe problems, the more empathy I have for myself back then. Don't lose hope, you are slowly getting better even if progress seems really slow at times. Remember how ill you have been. To be blunt- some people do not survive the severity of both of the pulmonary emboli that you had. Be gentle with yourself- you still have a lot of healing to do.

Could your GP arrange an interim appointment with a GI to manage things until you are well enough for more surgery? Have your eye MRI results been located? I know it is hard to coordinate your own health care and advocate for yourself when you feel so tired, in pain and unwell. I sure hope that you feel better soon.

We know that you are really strong, but is is Ok to have a tough day here and there on the road to recovery. From the forum::ghug:
 
The mri scan results have gone to the eye hospital which is on the other side of the city. Can't get through on the phona and have not had an appointment yet.

The gp has said that i need to see the people at the hospital but the people I need to see at the hospital wont see me because I am on warfarin.

I will see how I am tomorrow. If i have some fight left in me I will make a fuss. It is so hard though.

Fed up of being passed from post to post being told to see this next person/department and still not getting anywhere.

Thank you so very much for your support. It means a lot.

Xxxxxxxxxxxxx
 
:( shazz I'm sorry you just keep having so much trouble.

I don't think that you should give up hope and just not go tomorrow. Maybe they'll surprise you with some other option??

I don't blame you for getting so down, you have been through an incredible amount of stuff the last few months. Wish I could cheer you up!
 
Thank you hun. Seeing Sadie bears face always cheers me up!
I don't think anyone who doesn't have IBD realizes how exhausting it is sometimes just getting out of bed in the morning. Let alone having to fight every day to get some answers from people who are supposed to help you.

I have decided to stop the current meds. Just been to the loo 3 times in the last hour and each time is more and more painful. They are meds I have been given by a telephone consult with no examination. I know my IBD nurse is very good and she has always done her best by me but I am not happy taking meds for Crohns when i have UC.
Its making me feel sick and I am not eating much as it is.
Have taken 2 codeine, really hate taking them, to see if it will ease the pain long enough for me to get some sleep.

Will let you all know what happens tomorrow. If anything!

Xxxxxxxxxxxxx
 
Oh Shazz you are such a battler. You have had so many things thrown at you during your recovery and you have been so resilient. Your attitude has inspired me through my recovery. Hang in there matey. I hope things get better for you soon.
 
I'm confused Shazz. With a colostomy, I didn't think you were suppose to go to the bathroom?? Is it just blood coming from your rectum when you go? I hate that you are just feeling so poorly. You are right, people just don't understand sometimes!
 
Have had a colectomy. All but a stump of my colon and rectum has been removed. The stump has still got active disease in it and this is what is flaring. I have got blood and mucous coming out.

I feel like I have got the flu now. Its horrible. Shivery and aching. Also got shooting pains going up into my rectum.

Have had about an hour and a half sleep. Better than nothing.
 
shazz- I dont understand your medical system so I am at a loss as to advise you on that front.

I am so very sorry you feel so badly.

I hope you feel better soon!


Lauren
 
Just got back from the doctors.
Basically there is absolutely nothing they can do for me except give me paracetamol and codeine.
I was in tears cause I just knew this was going to be the answer.
I am on my own with this until the surgeon will see me.
As expected my obs were all fine. Nothing could be found to warrant further investigations.
Its not that the doc didn't try its that he can only do so much.
He has said to give the new tablets time to work and to come back if there is no improvement.

I am at a loss for words.
 
Ah Shazz i'm so sorry about everything you are going through. I know the system here in Ireland is very similar to the NHS so would you just go straight to A&E? Because once you present to them there they can't turn you away without investigating whats wrong. They would have to page/call your surgeon or specialist.

Its always something my gran said to me, once your in the hospital and admitted they will see you but if you don't go they won't take any notice of you.

I hope you get sorted x
 
Thanks Sarah.
I think a&e is going to be my next port of call.
Although in the past wwhen I have been there for UC issues they just stuck me in a waiting room for 8 hours, took my blood pressure and then sent me home!
 
I'm so sorry you're in such despair Shazz. You've had such a rough trot.
I hope things will get better for you soon.
You're in my thoughts.
 
Stand your ground, I did when I went to A&E and I wouldn't let them send me home until they found out what was wrong. I had two doctors argueing about different diagnosis, so after I kicked up a fuss about not going home until they could tell me what it actually was they admitted me into a ward, mind you I was sitting on a chair in the waiting room for 12 hours at that stage and I was in some amount of pain. BEst of luck with it, and do let me know how you get on.
 
Hi sweetheart. Oh my oh my when are you gonna get a break!?

If you go to the A&E, and I think that is a good idea, tell them its suspected Crohns. That you are in great pain, and have been bleeding for weeks. Give them a nice blob of blood, they like that. (sick yes, but it works)

I'm wondering frankly if the warfarin is making your bleeding worse? How about another scan to check how those lungs are doing so you maybe can get off it soon?
 
Hi Misty hunni.

I really am at the end of my tether with it all. To top it all off I think i am starting to react to the new bloody meds! Really bad headache, itching all over despite anti hystamine tablets, ache all over, joints are on fire and just generally feel like *****!
Some of this could also be due to the flare as well.
Even my eyeballs hurt!
I did feel sorry for the doc I saw today as he knew there was nothing he could do and that must be frustrating for him as well. He just said to keep coming back but i really do not have the energy spare to be doing that.
Have already asked if my lungs are clear will i bbe able to stop the warfarin. Short answer no. People do have surgery while on warfarin and there is a system in place for this. Its called bridging. They stop the warfarin the day before surgery, give you clexain injections or something similar. Do the op start you back on warfarin.
I know that I am at a higher risk of getting another pe or dvt but its a risk I am willing to take. The surgeons just wont do it.
So do i carry on with the meds or stop them and see what happens. It might be just one of them or it might be both.
I don't know what to do and can't be second guessing myself all the time.
 
You need the specialists and it's the only way you're going to see them. Its A&E, and for heavens sake dont wait til the weekend!

Personally I think the A&E is good and say all the above plus apparently a reaction to meds, you need to been seen ASAP.
 
The only problem as i see it is that the specialists i need to see are the specialists who wont see me because i am on warfarin!
 
Another horrid night of no sleep.
I seem to have these episodes or turns where I feel very cold and shaky. I get a really weird feeling in my hands aand legs, almost like pins and needles but not. I can't keep still, I have to wriggle around and move a lot. It aalso feels like my blood is freezing in my veins but i am also sweating and feel rreally hot.
Its the weirdest feeling ever. I was trying to explain it to my hubby at 3.30am but don't think I could explain it properly.
Still got killer headache, nothing is taking that away. And so itchy still as well.
I don't have a temp and my pulse doesn't race or slow down either.
I know that if I go to a&e they will stick me onto medical assessment unit and i will sit there until the doc does my blood pressure and temp and pulse and they will then send me home. Its what has happened twice recently and that was after i was dx with the pe.
I am going up to my gp friday for blood tests so will ask to see another duty doc again and be a ppain in tthe ass.
I know I can do that quite well.
Also bloody freezing ttoday and can't warm up.
Doing my hhead in
Sorry if it seems like I am moaning but I just need to get this out
 
The pins and needles sounds like what I had last week. It's supposed to be a symptom of a very low B12 level which would also account for some of your other symptoms. Oh I do feel so so sorry for you hun:( ask the duty doc to take your B12 levels, Vit D levels and Iron levels if you do have crohn's those are all levels we should have checked regular. If not right they can cause horrible reactions.
 
I will aask them. Its taken them just over a week to get the request right to do a fbc!

Will defo ask them though.

Thank you Xxxxxxxxxx
 
You need a Dr alright, your real GP. And you need to see him now and have your bloods checked. I cant see why the GP cant do all this immediately?
 
The gp's don't take blood themselves. You have to have an appointment with a nurse to do this. The doctor has to fill out a request of exactly what they want testing. If its not on the form the nurse wont/can't ask for it..
I am also not allowed to request from the nurse bloods to be tested it has to all come from the gp.



I will see who takes my blood tomorrow. Some nurses are better than others
 
:(

You vent all you want to us! You have to get it out somewhere. Hate that you are having such a hard time. It's the freaking middle of April now, you should be feeling lots better since your surgery!
 
This may not help you Shazz, but if you decide to go to A&E there is a little trick you can use if you can tolerate it. My mom used to have very low BP, but she managed it and didn't want to take meds or anything (she was a nurse). Before every appointment, she would eat a lot of black licorice. Anise (the flavoring in licorice) can raise the BP. It worked enough for her to have the docs off her back, but I don't know how much you would have to eat to make the BP go up enough to make the docs look twice.

Anyhoo, just something I thought of. Hope you get sorted quickly, it seems like the docs want to take all the time in the world with you!
 
Thanks guys.

I don't know if licorice would agree much with Ozzie stoma! But thanks for the tip. Love licorice.

I have come up with a theory about my blood pressure and obs being normal.
I have been in chronic pain for so long my body has adapted to this aand thinks this is normal for me. So when i go to the docs in pain they take my blood pressure and obs they read as normal. Have run this past a ddoc or two and they have said its possible seeing as i have been in pain for 18 months now.
 
Well wonders never cease!

I have just had a phone all to say to come to the out patients clinic on Monday to see the surgeon who is going to do my next op!
10am Monday morning.
Well well well. Wonder what changed his mind?
 
Sarah - love it and i will.

Am writing a list as we speak!

Top of it will be do I have Crohns what test can we do to rule it out?
 
Well an MRE is an MRI of the small bowel, I will report back after 5pm to tell you how successful that is as my results are due back this afternoon. My specialist tells me this will tell him of the crohn's is anywhere other than the ileum.

My fingers and toes are crossed for you, keep us updated and lets hope you get it sorted once and for all.
 
Good luck Sarah.

I had an mri last august and tthis is what threw the Crohns dx into the mix as well. It showed inflammation and scarring in my tterminal iilieum. But each time they did biopsies I had been on steroids or aza or 6mp or remicade and so nothng showed up.

Hope you get on ok today.

Xxxxxxxxxxxxx
 
Shazz, that's fantastic! Glad someone is finally listening and going to DO something for you. Good luck!
 
Complete waster of time. As soon as I said I was seeing tthe surgeon on monday he switched off. Told me there is nothing he can do.
So the line seems to be to live with it.
Wait and see what the surgeon says on Monday. Got a feeling its going to be - I know you are in pain and are bleeding but you are on warfarin and I can't/wont do the operation until you are off of warfarin.
Bloods were all fine. Wcc, fbc normal. Crp was 20. Pulse and temp normal.
 
Curses Shazz!! You cannot seem to catch a break this year.
I hope Monday turns out well. That surgeon better be worth the wait!!
 
Hi Shazz,

Has someone said they won't operate when you are on warfarin? I am allegic to warfarin but was on a different anti coagulant for ages. It didn't stop my surgery. The only thing I couldn't have was an epidural. Apparently there is a risk of bleeding with this.

Good Luck Monday xxx
 
Just an after thought, I felt it was a good thing to be on anticoag going in to surgery, less risk of more blood clots? Maybe it is the way you look at it.

Kaz xxx
 
The surgeon has ssaid he wont do my next op while I am still on warfarin. He originally said december this year for stage 2 of my op. He is only seeing me on Monday because I keep phoning my IBD nurse and complaining about the flare I am having in my stump.
I do not hold out any great hope for Monday but will see what is said.
I am not against having the op while on warfarin but they wouldn't even see me a few weeks who to discuss what the next step would be.
 
hey shazz!!

I'm happy that you got an appointment with the surgeon on Monday! I hope he will surprise you and tell you he's scheduling you for next week :) That would be nice to help you out! You really deserve a break, crossing toes, fingers, legs, EVERYTHING!
 
Oh that would be wonderful. Never thought i would ever be so eager to have surgery!!

I am thinking worse case for it at the moment as I don't want to get my hopes up.

Only 24 hours to go now. Will post how i get on.

Xxxxxxxxxx
 
It now looks like I am becoming intollerant of the codeine I am taking. Can't stop itching and have already taken my allergy tablet for today.
I am now only on paracetamol for pain relief. Wonder if you can become intollerant of those as well. Been taking them for a while now.
Hope its not my anti depressants I am intollerant of!
 
Well I didn't get my hopes up and just as well.

August is when he will do it and that is sooner than he wants.
 
And because i was so mad when I went for lunch with hubby I had a tuna jacket potato. Took the skin off mashed the potato down mixed in the tuna and mayo. All but 2 bites left I realized it had sweetcorn in it!!
Really stupid stupid. But I am blaming the surgeon, i was mad at him and not thinking straight.
Gonna suffer later!
 
Uh oh!
I did the same with coconut citrus pie. Half way through realized I may have made a terrible mistake - but thought bugger it - and chowed down on a second slice. It was delicious and I got away with it.
Also accidentally ate a delicious pastry with nuts - got away with that too.
I hope you get away with yours.
You deserve a break.
 
Omg the pain from sweetcorn is horrendous!!

Never ever eating it ever again. Can no longer stand upright.
 
It cant come quick enough misty.

And yeah, bloody sweetcorn! I am soooo stupid!
Its hurting like a son of a bitch!
 
I wish I could help Shazz. I can eat sweet corn now, but only in limited amounts. And damned if it isnt in EVERYTHING in this country! There ought to be a law against it!
 
There should be a law against it!

I love sweetcorn and have got some growing in the garden but I will not be having it. Just not worth the pain.
 

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