Never Rains but it pours!

[soupdragon69]

I have had a series of emails from my gastro nurse this morning that have left me feeling really really down to the extent the tears are tripping me now and I cant stop.

I mailed her early this morning to let her know about my chest/gut infection and the 60mg pred and antibiotics my GP had put me on last Friday and what the plan was.

I got an email back at 9am giving me a lecture about having my chest listened to and sending in stool, urine, chest samples along with throat and wound swabs. Also how viral infection can turn into bacterial very quickly and did I realise I was now on triple therapy (meaning steroids, antibiotics and remicade). I answered her saying if I was passing stool enough (am on elemental solely), if I had burning when passing water, if I was coughing up anything etc etc etc I would but did she really think my GP put me on these meds lightly? Did she think I wanted to be on them for the fun of it? That I just loved not eating and relying solely on elemental? And that I came running over every single little thing to all and sundry?

I pointed out all I had done was notify her of my current infection issues because of my up coming remicade infusion and also asked if my next scope should be delayed and I got a lecture about what I and my GP should have done!

It has turned into a total slanging match. I am exhausted. She has taken offence at my words because I told her I was tired of having to justify myself to her and her talking down to me. I was on the verge of saying there are other patients and staff too I have witnessed after she has been round saying out loud how much they find it difficult to get on with her. But I am not that mean.

She gave me a lecture about what she expected from a fellow professional and patient and how in all her years of nursing she has never had this and I have told her that it was time she knew how I had been feeling for a long time (I suspect folk have avoided the confrontation because of her attitude and how it would be taken). I told her she can put it down to a personality clash if she wants. That she can even say I am on high dose steriods and unwell etc etc and yes they are having an impact on me because I usually can refrain and prevent myself from exploding but she had no need to come at me with a sledgehammer for just keeping her up to date!

She has said she doesnt think she will come and see me during my iv next week. I have told her it is solely up to her but sometimes it actually shows strength of character to face it and clear the air. Also that I never have expected her to come and see me knowing how busy her and the other nurse are (who everyone gets on with because she talks TO you not AT or DOWN to you).

I am sick of her attitude and she picked the wrong day to have a swipe at me!

Lord help me whilst I am on pred!!!! Everybody duck the Leprechaun is on the rampage!

 

[soupdragon69]

What really got my goat Pen was she started out by telling me my remicade infusion if I had it next tues was only 4wks and not 6wks as per the plan and how/why did I organise it or could I tell her when my consultant last agreed to the change etc etc.

I pointed out to her that it was exactly 6wks from 7th Oct to 17th November and nothing had been changed by me!

My GP knows me far better than the hospital does in many respects as you would understand because he is the one that sees me day to day and picks me up off the floor each time I crash and burn.

He wouldnt dream of commencing anything as you say without input from the appropriate team if he was unsure at all. And the regime we started is one that is tried and tested in the past with me. Has the blessing of my asthma and gastro cons both.

She was just way out of line today and I had had enough because she always makes me feel as though I havent done enough to prevent my nosediving again or its as though its my fault! So I lost the plot with her today with a little help from my friend PRED.

Not often I lose my temper but I was hopping this morning.

I got an apology from her a few minutes ago and she said she hoped that in future I would stop her if she was doing it again and that it didnt prevent me from going to them for support and help!

I managed to get some Lansoprazole for the acid reflux from the pred today so that should help me be able to get some sleep as it is triggering my asthma. I just get so hypersensitive chest wise once its started.

My GP said yesterday it was blatantly obvious I was very unwell last week and looked better. He knows when to hit me with treatment and when not and I trust him more than I trust her that is for sure!

I have always followed any advice or treatment given to me to the letter and I just found it all so exasperating her whole attitude when I try absolutely everything I can before I go for help and she knows that!

Hence toys came out of the cot - sorry!

Am in the process of picking them up Pen. Thanks for your thoughts I appreciate them as always!

((hugs))

 

[CookieCat]

Oh Jan no wonder you are so upset! (((HUGS))) What a total s**t of a day! As if you would take meds that aren't necessary or try not to go downhill if you can avoid it.

Your gastro nurse sounds like she has a big chip on her shoulder. I wonder if she feels threatened by you somehow? Are you a nurse? I kind of guess you must be from what you have said. If so, it's likely she does feel threatened.

Like Pen says, she isn't worth worrying about. There are more important things in your lie like focussing on getting better and enjoying your trip to Ireland. Try to avoid that nurse if you can - is there someone above her you can turn to and say you two don't get on?

I agree with Pen - youre a great member of this forum and so supportive. Your kind words helped so much especialy that first day that I posted feeling so lost. Don't let people like this gastro nurse get you down or doubt yourself.

Take care. Like I said in the other thread, tomorrow is another day. And sounds like your chest is getting better now so hopefully you'll be able to cut down the Pred soon and get back to feeling normal. I really hate meds that make me moody - I feel like there's a monster inside me that gets let loose!

Love,
Cookie

 

[kromom1]

Jan - As badly as you have been feeling lately, I'm so sorry you are having to deal with that nurse, too! I'm sending you hugs and smiles and hoping you are feeling better today!

Lisa

 

[soupdragon69]

Hey Cookie,

Its quite rare for me to get so upset and I know it was being on such a high dose of pred that just finished me off because I can usually manage to ignore or grit my teeth when this nurse comes out with stuff at me. And yes I am a nurse too but I work in Cardiac intensive care with transplant patients and other ops so gastro isnt my field and I turn to her and other gastro nurse for help at times.

Its very hard when you are a health care professional because you see ALL sides of everything and you feel guilty when you ask for time from a colleague and all those involved in my health issues know I just wouldnt ask if I could either sort it myself or I can manage. Even the receptionists at my GP surgery when I ring tell me they know if I am saying I need to be seen its for a good reason and not attention seeking etc.

I drop today to 40mg pred and later tonight will be leaving for Ireland. Am at my fiances now and it was just so good to have a long hug from him when I got here. He is worth his weight in gold.

The other gastro nurse I see is excellent thankfully and we get on very very well. I think this one I have problems with either is insecure and feels the need to be superior over me and/or has something she is dealing with either herself healthwise or close to her. She is always exceptionally well dressed (almost over dressed), hair perfect, makeup perfect etc etc and never sits close to you when talking. As though she is trying to keep a distance and has been like this the whole 2 yrs I have known her. I know other patients and staff have commented that they find her hard to talk to and just wait for her to go but I truly think she doesnt realise the impact she has with her words at times and genuinely doesnt realise how she is perceived.

I always intended saying something but was waiting for the right time. Unfortunately PRED made me open my big mouth and it all came out the wrong way. Thats the only regret I have. At least its in the open now and hopefully we can move forward from here.

I am getting excited about the trip to Ireland now and looking forward to seeing family. Cant beat a good dose of mountains and sea air too.

Lisa,

Thank you so much for your kind words it really does mean alot.. sometimes here its easy to get a little lost when so many other things are being posted.

I am feeling better overall and think I finally started to turn the corner yesterday and just want things to stay on the upward trend.

I will get there. Am a really stubborn leprechaun lol

Hope you are doing ok.

((hugs)) to you both!

 

[BWS1982]

I'd be mad, when I get that mad, I usually have to cool off before addressing the problem, else, I make the problem bigger, not smaller. Best wishes, take it slow and strategically.

 

[soupdragon69]

Oh yes Benson we are very alike in that sense lol

Thats why I can usually manage to walk away but my pred mouth just wouldnt stay shut!!

Can I put an order in in advance for someone to gag me in future when on pred please??

I am hoping she comes and sees me next tues when in for my remicade so things can be resolved finally and she can see alot of it was down to rubbish health and high steroids..

Thanks for your thoughts I do appreciate it alot. Hope you are on the upturn yourself too - you are an important and valuable member of the forum!

 

[CookieCat]

Yeah Jan, it does sound like that gastro nurse has a big chip on her shoulder and feels threatened by you. Sounds very insecure with the way she is so well dressed etc. People like that dont realise the message that they are sending out to other people - other people think that they think they are perfect and above everyone else, but it's not really the case.

Hummm... am I making sense? I am a bit mussed up in the head due to painkillers and its hard to say what I mean lol.

What you said about taking a step back is what I meant in the other thread about your friend. Now isn't a good time to try to make big decisions (and it seems like this is a biggie for you) because you've got so much going on. So give it time and let the dust (and Pred levels) settle. It's hard with friends like that - you sound like me that you are usually loyal to the end and dont like to give up on anyone. Like I said I am glad in the end I gave my ex that last chance because even though things didn't work out as a couple for us, it ended better and didnt hurt so much.

I don't usually lose my temper when I'm on high-dose Pred but I'm a gibbering wreck. I cry at commercials and the stupidest things and then I cry some more cos I feel so stupid! Damn drug - love it but hate it!

Cookie

P.S. Have a really wonderful trip Jan. Will think of you from my hospital bed!

 

[soupdragon69]

Hi Cookie,

Yes everything you said does make sense totally. I knew what you were getting at lol

Pred can have a horrible impact on you emotionally cant it. I either end up grumpy or in floods of tears on high doses. Am so glad I am down to 40mg now. Keeping fingers crossed I can keep dropping as planned by my GP.

My WBC was 14 and my Neutrophils and Lymphocytes were very high. Some of it can be linked to the high dose pred but the lymphocytes and neutrophils apparently not and were signs I had heavy infection somewhere even though my inflammatory markers werent raised alot.

Will see what my GP thinks next week. Have been told I can have my remicade next tues. Will see if the gastro nurse comes and sees me to get it over with.

As for my friend I have just told her father I will think things through and put it all on the back burner whilst I am on hols and until I get settled back home next week at some point.

Having a great time here in Ireland catching up with family and they have really taken to Duncan (fiance) so am very pleased!

 

[CookieCat]

Hey Jan! Good to hear from you!! Didn't expect you'd be about with your trip away, but I guess if I can log in from a hospital bed you can from Leprechaun Land can't you? Lol!!! :thumleft:

Brilliant to hear that you are having such a good time there and your friends and family have taken to Duncan. :ysmile: I'm sure the time away will help you 'heal' a lot both in your mind and body. It sounds like you've done the best thing to take time out to think about your relationship with your friend and her father should respect that. The time away will also to let the dust settle after your problems with your gastro nurse.

Hope you manage to keep ditching those pills one by one and get your dose down. Sorry to hear it looks like you have an infection somewhere tho. Me too... they arent sure where so they are just pumping me with general antibiotics to try to get rid of it. At least your docs are still letting you have the Remicide. And yeah, it'll be interesting to see if Nurse Snotty shows her face while you are there!

Keep having a great time... feel that wind in your hair and breath in that fresh air. Oohh the thought is making me go green with jealousy lol!

 

[Guest]

i keep missing important threads! sorry Jan - i didn't see this one till just now.

what a cowbag she sounds! pred or not, i am glad you had the guts to stand up to her hun.. you're not there right now to be treated as a professional, you are a patient who is poorly, and she should be the professional!

she must know she was out of line, because she apologised. so it was worth you losing your cool, just to get that. hopefully, she will treat you better in future.

glad to hear you're on the mend a bit now.. hope you continue that way. xxx

 

[soupdragon69]

Hey Girls,

I got a mail from the gastro nurse last night on my return from Ireland. She said she wouldnt be able to come see me today during my remicade because she was extremely busy and it was not a reflection on the recent words we had had...

She explained that the other gastro nurse was off unexpectedly for several weeks, she was only working 3 days a week and was totally snowed under. Wanted a complete update on me GI and other treatments and issues wise.

So I spent some time doing that before I got to sleep last night. I am down to 30mg pred since sunday, increased my methotrexate on monday as per rheums and then had my remicade today so a bit wiped out at the mo after my trip home too! It was great to get back and see my parents though!!!

Met another patient and relative whilst having my IV's today and encouraged them to have a look at the forum.... was also talking about the same gastro nurse and told them to not let her intimidate them or brush them off or make them feel like they should make do when concerned the patient isnt getting enough support or being listened to by her!

So yeah definately not on my own and I spoke to them to let them know they are not on their own either over this nurse/issue..

See my GP this thurs so will see what he thinks but am sure I wont be back at work for a while yet. I know my gastro cons has increased my dose of remicade too today so will see what that does for me...


Hope you are doing ok yourself Ding. Out of sight hasnt been out of mind honey. ((hugs))

 

[soupdragon69]

Yeah Pen I am getting there.... Things are still a bit iffy chest and gi wise but am managing and that is what counts after the last week especially. Really dont want to revisit that one in a hurry again! Am just so bloated and sore now. Will get there in the end being so stubborn lol

Bought some wedding mags today as planning a rest day tomorrow (I know I know dont I ever do anything else? lol) so will have something to make me sit still for a while.

Hope you are doing ok yourself....

 

[soupdragon69]

Just got a mail from my fav gastro nurse ;-)

My White Cell count is high but they think its down to the pred (it can do that) so just need to watch it and make sure things settle as I decrease the pred.

She also spoke to my gastro cons and suggested to him perhaps worth looking at Humira for me but he wants to stick with the Remicade for the time being and keep it as a reserve.

At least I know I have other options if needed down the line...

Forgot to say earlier when I did this post that she also agreed with my thoughts in relation to Vitamin D impacting on Crohns and said if I wasnt absorbing it then I would definately need further injections. So it was worth me asking her about it aggravating inflammation (see the Vit D thread).

 

[soupdragon69]

Well here I am again after having been to see my GP this afternoon...

He reviewed my blood tests that the gastro nurse sent me from Tues and also previous week test results. He agrees with me that my White cell count is higher than last week DESPITE reducing the steroids so he thinks I have yet more infection brewing GROAN.

He has put my pred back up to 40mg (got down to 20mg yesterday) and also started me on Cipro for 10 days because I had Augmentin (Co -Amoxiclav) antibiotics last week.

He still isnt sure whether its my gut triggering my chest or my chest kicking off anyway but I really have had problems breathing again today and get very breathless just moving about at home. Had problems talking to him this evening was so short of breath grrrrr. My guts keep playing up too with distention (look 9mths pregnant) and pain then they settle again then it starts again.

He has also put me off work for another 3wks and told me it is going to take some considerable time to recover this time. He wants to keep a close eye on me temp etc wise and I am to ring immediately I have any further problems but must stay on the steroids now until I am much much better.

The only other thing that is niggling at me is it could be the increase in the methotrexate as I know breathlessness can be an adverse side effect and I know that the pentasa triggered my asthma before too so am sensitive to drugs from that aspect... Just hard to know at the minute whether its my asthma due to inflammation or the metho. Time will tell..

Just feel really really weak and drained today. As they say the only way is up! LOL

Here we go here we go here we goooooo! Anyone up for a sing - a - long? ;-)

 

[MINI Cooper]

arg! sorry to hear you're not doing good!
I'll sing along with you!!!!!
At the least I am also on Prednisone with you
I also got the 'time will tell' gibberish from the doctor. :ymad:

 

[soupdragon69]

Thanks Cassie,

Always helps to know I have a fellow "pred head" lol

Am off to curl up for a while as too drained to sit at the comp at the mo.

Hope you are doing ok yourself at the minute.. ((hugs))

 

[CookieCat]

Jan, Sorry to hear that you're still not good! (((HUGS))) I'm on hydrocortisone now and my head is full of absolute crap and I am so teary it's majorly embarrasing!

I'd sing but I can't hold a tune to save myself. But I could get out my guitar... although might be tricky with my wrist strapped up! LOL...

Take care and snuggle into your bed. My bed is so wierd here - it has an air mattress that goes up and down in diff places to stop you getting bed sores. Its comfy once you get used to it but such a wierd sensation! Like being on a boat! In fact thats what I dreamed about last night.

Told you my head's full of rubbish! We can all talk pred rubbish together hey? Thinking of you.

 

[soupdragon69]

Hey Cookie,

Glad to see you are hanging in there! Am starting to pick up again I think but as you can see its stupid oclock in the morning and of course I cant sleep can I! lol

Its amazing what rubbish you come out with on steroids isnt it. The air mattresses are a good thing in protecting you from bed sores as you rightly say and definately take some getting used to - just dont fall overboard in your dreams ;-)

Just need to concentrate now on stabilising for a while and getting better the pair of us eh?

Thinking of you..

((hugs))

 

[soupdragon69]

Just thought I would post and say I wont be around for a while...

Really not feeling good at all. Thought the pred at 40mg again since last thurs (having weaned down to 20mg from 60mg before) and antibiotics were helping me but am still have breathing problems, had to start nebulising meds yesterday evening just to feel comfortable and even if I move around I get breathless and absolutely drained to the core now as a result.

I still have my suspicions its the methotrexate as I have deteriorated over the last 2wks and both weeks we upped my dose by 2.5mg each time. AAARRRGGGGHHHH cant win at the minute! Take one ruddy med to stop the pain and help my bones and joints and it knocks off my asthma and breathing! Grrrr

Have blood tests tomorrow at my GP surgery and if no better by then will ask to see my GP. Just cant seem to get over this hurdle right now and dont understand why..

Am tired of trying to think things through and try and work out what is going on. Am going to leave it up to my GP and just spend my time resting and sleeping for the next few days.

Am thinking of you all and hope everyone is doing ok. Out of sight isnt out of mind folks!

 

[MINI Cooper]

aww. sorry to hear that Soup. I definitely share the frustration
of the meds just not working and feeling like crap all of the time.
There's nothing more frustrating. My thoughts and prayers are with
you. Hope to hear from you soon.

 

[CookieCat]

So sorry that you are feeling so lousy Jan. Know what you mean about constantly trying to find the right mix of meds for you. It's kinda like playing a game of Snakes and Ladders and you think you might just have found a new 'ladder' with a new med, only to find yourself sliding down your arse on a snake in another direction!

Don't worry about trying to figure it out for now. Take time to rest up and get better properly and listen to your doc. Sounds like you may be on your way in too - hope not, but if you are you know you're in good company. I really hope you start to feel better soon. Thanks for letting us know. ((HUGS))

 

[catfud]

Sorry to hear you have been having such a tough time I hope things pick up for you and start to get better real soon!

 

[kromom1]

Jan - Just wanted you to know that I'm thinking of you and hoping you are feeling better real soon! Lots of hugs coming your way!!

Lisa

 

[soupdragon69]

Thanks everyone so very very much....

Have just had a really really rough time of late and just couldnt get my head above the parapit no matter what I tried.

Am still very drained and washed out and my gastro nurse mailed me today asking if I should be admitted and did I think I needed to be in hospital (sound familiar Cookie in relation to your earlier thoughts?) as things dont sound good and the remicade and pred could be masking nasty things etc etc...

I am going to wait until tomorrow and see how I feel as my breathing seems a LITTLE bit easier today and will also have my blood results from today so between all three should be able to decide what to do for the best.

Am off back to bed again - groan.

Thanks again ((hugs))

 

[CookieCat]

Huge ((hugs)) going your way Jan.

As you know I'm sorry but not surprised that you might end up admitted. I know just how hard it is to take the 'time out' for hospital - its kinda like admitting defeat isn't it? But sometimes we need that 'extra care' like you pointed out to me to get your head above the water and sort things out.

I know you don't like bothering people, but a comment my gastro doc said to me might hit home with you too. She said she was 'so relieved' that I agreed to the admission cos she was really worried about me. It must be hard for our docs too when they know we arent good and want to see us better. Hospital can be the best place to get sorted out.

Just rest up and put everything else to the side for now. Don't fight it. Let your GP and nurse make the decisions if you can and just be honest with them. I'd like to see you well too - you've been so supportive to me over the past 2.5 weeks and it's hard knowing youre having such a bad time too.

Dont forget if you do end up in, your in good company. If you dont have internet, you know that we are here for you still, thinking of you and waiting for you when your better. And if you feel down, just imagine its me in the next bed tossing cookies at you! I might even dunk some in my soup LOL!:lol2:

 

[kello82]

aw soup, girlie so sad to read about how miserable youre feeling. i hope that you get some answers and start feelin better.

youre in my thoughts

 

[soupdragon69]

Thanks girls,

I have been reading off and on but just havent had alot of energy to post or do anything other than lie down!

My WBC was the same as last week but my neutrophils (a type of white cell) are still climbing and my inflammatory markers have gone from 1 to 11 now in just a week. So I am obviously fighting something despite being on pred and antibiotics. Had a raging fever yesterday evening again too and if someone had come and said right you are off to hospital I couldnt have argued I was so drained I couldnt move. I lay there and thought "should I ring the on call GP?" dismissed it because they refused to talk to me last time due to my living outside their boundaries even though my surgery comes under them! Then I thought do I go to A&E? I couldnt cope with the hanging around and bright lights and poking and prodding right now, never mind contemplating the energy I needed to get there etc.... sounds daft I know.

So I decided in the end to wait to hear from my gastro nurse today as I had mailed her late PM yesterday and it would give me time to see how I was.. I will say if she thinks I should be in then I will go but at the minute have hit a "bright spell" so am not knocking it LOL

I also have an Occupational Health appointment at midday today and a Rheumatology appointment at 4pm so gastro might pull me in whilst there for review. We will see eh?

Thanks again folks - it means alot knowing others are thinking of me as my family are also putting me through a rough time at the minute too and the strain is taking its toll. Am just thankful I have Duncan by my side now - he has been such a gem.

 

[CookieCat]

Hey Jan, nah it doesnt sound daft about trying to figure out all the practicalities of trying to get help and then deciding it's all just too much hassle. I know that game well! Esp. about going to the ER.... I have to be really desperate to get to that stage!

Remember though when your gastro nurse contacts you what you've been like overall the past few days, not just how you're feeling during this bright spot. :ybatty: Yeh, you may keep going this direction and get better but then you may not. Think of it this way - if she says hospital and you do improve, you'll get out much quicker. If you don't get better when you go in, you'll have the help there to sort things out.

Real sorry to hear your family is also giving you grief. Just what you need - NOT! Esp. with all the hass you were having with your friend too. :ymad: I am glad that you've got Duncan too he sounds like one of the good guys. No doubt you're finding it hard to cope with things like that too because it's all piling in on top of you. I was so ashamed this am when the pain got me to the point of tears - don't usually let people see me like that but I just couldn't deal with the cramps and pukiness and lack of sleep from hourly finger pricks after the problems with the tests etc. etc. past few days. But I've had painkillers now and so I can cope better. I'm sure you will too when you've had a bit more sleep. Hang tight to our support Soup - you'll get there. /:smile:

Take care and let us know how you go. Still thinking of you.

 

[Agent X20]

Jan
Nice to know you're still (just about) well enough to keep posting... and to give advice to loads of other people on the forum!
I'm not a naturally "huggy" person, but I still read the threads and think about people like you and cookie who are going through a particularly bad time at the moment (and sorry to everyone else I've missed out)
Hope you're all feeling better soon!

 

[soupdragon69]

Hey there!

Well I had rheums nurse this afternoon and explained what the gastro nurse said about admission. She just looked at me and said "please tell me you have said yes!"..

I said I was waiting to hear but would send another mail this evening to update gastro on the rheums appointment.

Rheums nurse thinks its a good idea I go in so they can all come and harrass me and sort me out in one place.

I am giving in...

I have mailed the gastro nurse team and one came back to me within minutes this evening saying they would put things in motion first thing in the morning and hope to have me in before the weekend.

My methotrexate is staying as it is at 15mg for the time being and the jury is still out as to whether it is causing my asthma to trigger but a possibility in which case she said I would have to stop it totally.

Duncan is coming down tomorrow and I see my GP first thing in the morning. So the ball is rolling and yes I am going into hospital...

My mouth is sore and breaking out, I have lower right gut pain constantly, just made it to the loo in time on the way home from my appointment and no more, I get breathless just walking about and am so drained my body just is screaming at me to lie down all the time. Am plain exhausted and as I said I give in now..

Also saw my Occ Health Cons this morning and she thinks there is a serious need to check my other fat soluble vitamins because my Vit D was so low, I am bruising and having breathing problems along with known skin diseases. Vit A impacts on lung function, Vit E impacts on skin and Vit K impacts on clotting - need I say much more? She also thinks I wont be back at work before the new year and I agree with her..

Thanks Cookie and Steve for your thoughts. The leprechaun will return!!

Will post before I leave home (hopefully tomorrow). I will get there in the end and the upturn is just around the corner.

Steve,

Could you tell I was on a pred high early this morning with all the posting I did on the forum? LOL ;-)

((hugs)) to you both.

 

[CookieCat]

Hi Jan, I've been thinking of you and am so glad to see you've decided to 'give in' and get admitted. ((Hugs)) Don't think of it as giving in tho' - it's more that you are taking a decision to sort yourself out OK? (Says me, who had to work very hard to get my own head to think that way! ).

As I said, even tho' hospital isn't the best place in the world at least it will give them a chance to work with you every day and try to find some answers and relief from it all. Also it will give you some time out from your family - put all that to the side for now and concentrate on YOU. You've been struggling along for too long and need to get yourself better. Just look forward to that upturn... it is just around the corner as you said. I believe that goes for both of us.

The fat soluble vitamins you said are the ones I am real low in too, and they think the cause of my nerve damage and pain along with Copper and Zinc. So it's a good idea to keep an eye on them.

I'll look forward to your return el Soupo. Just remember that if you feel down, think of me in the next bed OK? We can toss cookies at each other and race each other to the toilet lol!:ylol2: As you said to me out of sight isn't out of mind. Stay strong.

And remember that rain.... well, your Irish after all - it may put a dampner on things at times, but doesn't it make things lovely and fresh and green after the downpour? You'll get there. xxx

 

[GoJohnnyGo]

Wow, Jan.

All I can say is good luck.

 

[sheilag]

thinking of you

hi jan,

just wanted to let you know i will be thinking of you and i will keep you in my prayers,

hope you get better soon,


sheila

 

[soupdragon69]

Cookie you make me laugh as always. Am gonna get giant smartie cookies to toss yer way look out! We can use them like frisbees! LOL

If we race to the loo I might be faster on my feet but I wont be able to hide as you will hear me a mile away wheezing with laughter and will have to stop and catch my breath ;-)

So who's the tortoise and who's the hare?

Johnny,

I will be fine in the end - am just attention seeking after all lol Making sure I get my moneys worth from the NHS here too!

Sheila,

Thanks for the thoughts and prayers they mean alot. Will be back before you know it.

 

[CookieCat]

Jan, nice to know I got you laughing!

One more thing to say....... illowfight: :ylol2:

Keep your chin up... you'll be out before you know it!

Love & hugs xxx

 

[kromom1]

Hey Jan - Hang in there!! I'll be thinking of you. Let us know when you are out. Feel better!!

Lisa

 

[soupdragon69]

OOh love a good pillow fight - dont you dare sabotage me and give me a feather one though!! Will have to watch you on that! *squints sideways at Cookie*

Thanks Lisa,

Will be back tormenting you all before you know it! ((hugs))

 

[MINI Cooper]

Good luck in the hospital! I hope they can get you to feel better!!!
Remember to bring your own pillow, some lotion because hospitals
make your skin DRY, your own toiletries and so on. Nothing worse than
having to use their hospital crap! I'll be thinking of you!!!

 

[soupdragon69]

Was thinking had I packed the kitchen sink Cassie. Duncan both laughs and despairs at me when we go away so lord knows what he will about a hospital admission ;-) I think exactly the same as you about the toiletries etc... I even take in clothes to wear so I am not in my PJ's all day and loads of books to read lol

Crackers aint I!

Might be a case of 24hrs in and out again. Or they might keep me til my colonoscopy next tues then throw me out. I dunno...

Time will tell eh?

Will be back as soon as I can believe me - hate being hospital property grrrr lol

 

[CookieCat]

Don't worry Jan... I'm allergic to feathers too! Aaaachoooo! So it's fair and square all round!! illowfight:

As for packing... Hmmm well, lets see.... I've got my laptop (luckily I can watch DVDs and play music on it too), mobile connection, noise blocking earphones, car fridge (yes! saves me making trips to the fridge for soy milk etc. which usually goes missing anyway), hair dryer (had to have it, although havent used it), plastic tray table (my laptop is on my trolley table), plastic baskets for my goodies so I can get them out of the locker (brilliant idea those were!), reach 'n grab stick for picking things up and turning TV and lights on and off... and of course all the necessary toiletries, clothes, PJs, slippers, books, magazines, writing paper.... etc. etc. etc.

Kitchen sink would be good too, but I couldn't quite fit that in (Cookie glances at the corner of the room and thinks of calling a plumber!)....

That do ya? I don't travel light when I go to hospital... if I have to be in, I take home with me! :ylol2:

And yeah, I know TOTALLY what you mean about being 'hospital property' right down to the getting 'tagged' business. Grrrrr.... Its like you become a different person - a 'patient' rather than a regular human being. The nurses here laugh when they do the security checks for my pain meds cos I can rattle off my hospital number for them no probs!

Anyway, best of luck for your stay Jan. Hope they get you sorted sooner rather than later. I'll def. look out for you to see if you've been able to post... but don't you overdo it. Take care. xxx

 

[catfud]

Hope they getting you on the road to recovery ASAP and your not in hospital for too long. Will be thinking of you.

*wishes he had pillows at work to start a fight with co-workers*

:ylol2:

 

[CookieCat]

Yeehah!
Pillow fights all round!
:illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight: illowfight:
Get well soon ol' Soupie one! :​

 

[soupdragon69]

Bring it on!!!! LOL

Will take you both on in my pred fuelled hyper mode ;-)

Still waiting to hear when I go in... gastro nurse this morning said she is trying for a specific ward and the last time I was in (summer 07) with my guts the ward she is talking about today was a surgical ward (hides) - am hoping they have had a move round as they do that sometimes too and it might just be GI medical (fingers crossed).

Saw my GP this morning and he agrees I need to be in and let them do their dastardly to sort me out lol He yelled up the corridor after me as I was leaving " its just such a ruddy pain in the proverbial!" To which I yelled back "tell me bout it!" lol He is as frustrated as I am about the whole thing because I have been sliding downwards over the last 6wks despite all his hard work trying to prevent it. He is such a good doc and am really glad to have him!

Duncan is coming down this afternoon to me so am looking forward to seeing him and a hug.

Will keep you posted..

 

[soupdragon69]

Ok have just heard from the gastro nurse. She says she thinks I might have pneumonitis (lung inflammation/infection) due to the methotrexate on top of anything else going on so will need a clatter of tests for that alone.. they will also review my rheums and gastro aspects. Here's hoping!

Have to be on the ward for 6pm this evening. They are expecting me and the docs will be waiting apparently lol

Duncan will be here shortly so will tell him then.

Will see you all in a few days hopefully!

Thinking of you all ((hugs))

 

[catfud]

Good luck Jan :thumright:

 

[CookieCat]

Oh yuck... I hate it when a drug just triggers off yet another problem! :ymad: And what a shame when Metho seemed to be doing the trick for you for the arthritis. But if it is that, it can be fixed and dont forget there are other drugs out there to try. Sounds like they are looking at your probs from all angles which is really good.

You will definitely be in my thoughts the next few days. Just remember to keep your pillow on guard and a cookie stash nearby OK? You've been warned!illowfight:

To cheer you up - did you read my good news on the Treatment thread under "Hospital"? See, even cookies can get a break at times! :smile:

Looking forward to hearing from you when you are up to it Soup. And watch out for that hospital food.... my 'low fiber, gluten/diary free, light diet' meal tonight? A salad plate complete with broad beans, kidney beans, raw onion and raw cabbage!!! My gastro doc came in while I was foraging around in it to try to find something remotely digestible and she was shocked... she said it was a 'disasterous meal for someone who has Crohns' . I told her I just laughed at the kitchen's interpretations of my diet these days!

You'll get there Jan - you've got the luck o' the Irish on your side afterall! Take care. xxx

 

[soupdragon69]

Well am back!

Got home this afternoon. The reason??

The hospital has closed EIGHT wards with the vomiting and diahorrea bug called Norovirus. The first nurse on the ward I was on went home this morning.

Gastro reg came and said to me he was concerned after me being so ill recently I would pick it up and said as I was stable and seemed to be picking up would I like to go home and come back for my colonoscopy on Tues rather than stay and risk the dreaded bug?

So here I am at home AGAIN!

They did nothing for me whilst I was in.... NOTHING...

A gastro cons I never met told me on Friday morn he was convinced it was IBS and not my Crohns because my last scope 3mths ago was normal and so were the biopsies. I asked him if that was the case how come I needed steroids and antibiotics then and its only now I am coming to the end of the second course of them I am starting to pick up? He just shrugged...

Made me feel as though I was wasting their time being there and was very demoralised about it.

Saw gastro reg yesterday and told him how I felt. He said the plan was to keep me til Tues til I had the scope then a plan could be worked out depending on the results.

I was supposed to have a chest xray thurs night after I was admitted. The stopped my methotrexate then too. The gastro cons restarted the metho on friday saying I needed it and it was just my asthma playing up. I asked 3 times friday if I was having the chest xray and all I got was we will find out.

Asked gastro reg sat morning and he said "you havent had one yet and you are on metho?" Then said he would sort it out.

I finally had a chest xray saturday night and was told today it was fine and that if it had been done thurs they would have seen the problem but was too late now as I started to pick up yesterday afternoon!

So I just feel it was a total waste of time going in. I didnt seen anyone from rheumatology. Didnt see my gastro consultant or nurse either as was supposed to happen on friday.

I am hoping to see my own gastro cons tues and wondering whether I should even go see my GP tomorrow. Whats the point? Theres nothing wrong with me its IBS after all, never had an infection, had no need for antibiotics or steroids did I? LOL

Am off to bed because for some reason I am knackered! Just plain lazy if you must know ;-)

 

[CookieCat]

Hey Jan, quick reply because I am feeling real dreadful atm with a rotten cold and not up to much. Was just reading to take my mind off of things and saw you'd posted so I couldnt resist finding out how you were.

I'm so sorry they mucked you around like that! :ymad: Looks like they were after easy answers and kicking out as many as possible to stop the norovirus bug figures climbing too high - doesnt look good in the papers. It's true you dont want that on top of everything else but it doesn't excuse how they treated you. ((HUGS))

We know you're not lazy and your not wasting their time! Your points to the cons about how it took steroids and antibiotics to get on top of things even a bit left him without an answer so he didnt think it thru' did he? At least the chest xray was OK, but it doesn't explain it all. His reg seems more on top of things at least.

Definatly go see your own cons and GP - they know you and know it's more than "just" the IBS. Until then REST UP! I think that's what you need more than anything and it is better to do in the comfort of your own home if you can.

Ended up writing more than I thought I am so fuming for you LOL! Blame the temp and lack of patience. You can read about all my 'fun' on my thread... its been interesting to say the least. I really hope things settle a bit for you Soup.... and me too, for that matter! Take care xxx

 

[MINI Cooper]

Virus???? Scary! :eek2:

And what a runaround they're giving you- sooo frustrating! I hate it
when the doctors don't give you the time of day. We're human beings
after all! I think they forget that sometimes...

There's a song that goes "...If you won't save me please don't waste my time"
I always feel like that whenever I am dealing with hospitals and doctors.

Hope you get things sorted soon! Hugs!

 

[kromom1]

Jan - What a frustrating waste of time - I sure feel for you! Hope everything gets straightened out for you soon. Hang in there!

Lisa

 

[Guest]

oh Jan!! i missed all the past few days events with you

aw hun i am so sorry to read all that you've been through - don't give up, the answers are out there, and i know you'll get there eventually, especially now you have Duncan on your side and fighting your corner with you.

thinking of you Jan ((((BIG HUGS)))) xx

 

[soupdragon69]

Thanks folks,

I am very glad to be back home I have to say...

Last Thurs when I was admitted the Doc I saw told me I really needed the chest xray because I had very very poor air entry to my right lung and thats why she stopped the methotrexate because she was worried.

It was the consultant that was the complete ar*e!

He was just so arrogant about it all. I did talk to my own cons a few weeks back in clinic and he agreed that if I had been on steroids (which I had been at the time pre my last scope) the inflammation would have probably resolved - hence normal biopsies and plans this time to do another one. Only problem is I have now been on steroids and 2 different antibiotics almost 3wks again so I know the same results will happen again!!!

Thats the frustrating part.

I told that cons last friday that if it was IBS what else did I need to do because I took my antispasmodic and gut motility meds religiously and had changed my diet like he wouldnt believe so to tell me what else and he just stood there and couldnt!

I was ready for him Sat morn if he had come back because I would have just said "when you are ready to listen to me and talk to me properly THEN come back". Thankfully he didnt!! LOL

He also stopped my antibiotics a day early (actually I was due to take the last one sunday morn so it was only one dose) and I think he just did that for something to do and because he could! ;-)

Will ring the surgery and see if I can see my GP this week and go from there.

When in I met a girl 3yrs younger than me who has had a small bowel transplant 5mths ago. We are going to stay in touch. She has been through soooo much it makes my problems look like peanuts I can tell you! In that time she has been home a max of 5wks she reckons.

There but for the grace of god......

So am going to talk to my cons hopefully before the scope because my GP is was adamant I had infection this time that impacted on my chest and was caused by my gut. GP also thinks I have underlying inflammatory problems that keep triggering everything off and I really need to get the hospital on my side to see that or I will end up just going round in circles like now..

 

[My Butt Hurts]

Awww, this is all such a load of crap, Soup. I hope you get it all sorted out really soon, and get to feeling better!
Thinking of you!

 

[soupdragon69]

Thanks MBH,

Will be fine. Always take the scenic route no matter how easy the other route is! LOL

The gastro nurses have been in touch with me during the morning and one has suggested a CT scan because I still have problems despite going mostly onto my elemental diet and I keep ending up on steroids and antibiotics and my scopes keep coming back neg to try and show anything up elsewhere.

Will see what my GI thinks tomorrow....

It has also been on the TV news that 10 wards are now closed at the hospital I was in due to that Norovirus (winter vomiting and diahorrea bug) and they are stopping people at the entrances asking if they have had ANY symptoms at all in the previous 48hrs and if so preventing them from entering the hospital. They are also giving out information leaflets to all arriving.

Sounds like I got out just in time!

 

[MINI Cooper]

Glad you found someone you can stay in touch with that is going thru
stuff too, I'd come visit you if I weren't a million miles away!
I had some people from my Crohn's support group here at home visit me
while in the hospital, it is nice to have people around who understand,
and some who have been through so much more....

 

[soupdragon69]

Would happily have you visit me anytime Cassie! The thought is what counts and knowing you are on here for me along with everyone else is what makes the difference to us all doesnt it?

Such a relief to be able to talk to others that truly understand no matter what is happening.

I am spending some time doing a written overview of all my health issues and am putting thoughts and questions for my gastro consultant tomorrow I want him to think about.

I want some answers now and I think he could be a key link in helping me find them.

He told me 2yrs ago that once my crohns was sorted me might recommend my being seen by a guy who specialises in metabolic syndromes as I could well have something along those lines too.

Time will tell. But I intend on tackling things head on this week and getting the ball rolling because I cant keep peaking and troughing like this and ending up on steroids and antibiotics all the time if there is another cause and better treatment!

Will keep posting on the saga lol

The girl I met is lovely and its so unfair she has been through so much. She is on ng feeds 14hrs overnight and managing to eat a bit but they cant get her temperature under control as she is fighting a bug at the minute and they are treating it so she will be in hospital a while yet.

 

[soupdragon69]

Well here I be getting ready to go for my colonoscopy this morning. Will be leaving in about 90 mins.

Got to sleep around 0230hrs and back up again a little while ago. Oh the joys of Picolax and Klean prep eh?

Have written out this overview for my gastro consultant that I want to give him today of all my health issues and what the main problems are on the GI front now, along with a list of questions and asking him for advice on what best to do. Will see what he says and tell him I am happy to wait for his thoughts when I next go see him in clinic in a few weeks..

Can but try eh? Will see if I can talk any sense later when I get back lol

Thinking of you all!

 

[kromom1]

Jan - How did the colonoscopy go? Do you have any results yet? Let us know when you have a chance and are feeling up to it.

Lisa

 

[soupdragon69]

Hey Lisa,

Thankfully it was my consultant that did the scope today so I was able to talk to him beforehand.

He winced when I said I had been off work this time since 2nd October and that I had been discharged on Sunday. He said he wasnt sure what he would see today because of the steroids and antibiotics and I told him this is the same game we keep playing.

I told him I wrote an overall view of my health status and put down my thoughts and had added some questions for him at the back that I felt with his expertise and experience he could help answer for me and help me figure out what to do next. He agreed to read it - its 8 pages long!! LOL

Before he hit me with the sedative we were talking with the nurses in the room and he was asking me about work etc. I said that as he knew I looked after some of the sickest folk in the country in my job my own problems paled into insignificance. At the same time I was saying this he said yes and you are sicker than many of those you look after! It totally stunned me.... I guess I dont really think about what I live with some days do I??

Afterwards he said everything looked normal and would see what the biopsies showed. He said it was probably down to the steroids and we would probably have to let everything settle again, get me off the pred (which is now going to take 7wks if I do 5mg drop a week), and see how I go.

He said he would see me in clinic in a few weeks to discuss my "letter" and any other ideas he had.

At least he is listening to me Lisa and I knew he would. Will be intrigued to see what he thinks of everything as I have basically said "in my humble opinion it cant just be IBS all the time if I end up with high fever, sweats, exhausted, on steroids and antibiotics, back onto my elemental drinks and having to stop work because I physically cant cope anymore!"

Time will tell.... thanks for thinking of me. Have had a rough afternoon after it all with trapped wind and bad colic pains. Had pain under my ribs and into my shoulders too. Managed 3hrs sleep this afternoon and starting to pick up again.

Hope you are doing ok yourself! ((hugs))

 

[kromom1]

Jan - Sorry you had a bad afternoon after the scope, but the nap sounds like it helped! I sure hope you can get some answers when you see this doctor in 3 weeks. Wish it could be sooner for you. Hang in there!

Lisa

 

[Agent X20]

The fact that everything looked normal is a good start... hope it all starts getting better from this point on.

 

[catfud]

Hey jan not been on here in a few days so just doing a catchup! Sorry to hear that the hospital trip didn't go so well but like you said looks like you got out of there just in time

Good to hear that things are looking normal lets hope they can start clearing up your troubles and get you into some relief!

 

[soupdragon69]

Thanks boys for your thoughts I do really appreciate it alot!

My problem has been that my last 3 scopes including this one this week have been clear yet I keep deteriorating every few months despite treatment and doing everything I can and its really frustrating and getting me down of late.

My scope summer 07 was the first "normal" one but my CT 2 weeks earlier on admission showed severe inflammation in my ileum. I have pointed out this week to my GI that the 2wk time span in between I was on high dose IV steroids and antibiotics and they obviously worked.

Prior to the next scope (3mths ago) and this one this week I have been on either Intramuscular or oral steriods and antibiotics on both occasions because I have been so ill.

My mouth breaks out, I have problems swallowing, my stomach ends up in trouble with severe pain, acid and cant tolerate food and my lower right quadrant pain comes back with a vengence. I get pain across my lower back and into my hips during it which goes away once all the above is sorted out too. So I cant win because I cant prove its my crohns each time as I end up on treatment no matter how hard I try not to.

This time when I tried to hold out my asthma deteriorated badly and I ended up with very poor air entry to my right lung and a hospital admission for gut and chest.

So you can understand why I am beating my head off the wall!

Am waiting to see what my GI makes of the 8 page letter I gave him in person before my scope last tues. We are going to discuss it in clinic when I get my next appointment through soon. Probably wont be til after the new year.

I also have to get off pred now and according to the weaning programme they have given me it will take another 7wks.

I will get there in the end but am just a tad tired of it all at the minute....

 

[catfud]

I can see where all your frustration is coming from. I'd be at a total loss if I was in your situation, you cope so well. I'm keeping my fingers crossed that you get some positive results and make some progress soon.

 

[Colt]

It looks like we've gotten more and more into the same situation. I really do feel your pain. Just keep going and look at it like this: When you drop down low enough on the prednisone, while your crohn's may become active, it will at least come out of doubt and hiding.

It's odd that doctors seem unable to look back before the last time you came to their office. What I'm experiencing now isn't like what I was having before the prednisone but they don't really care. They can't get over the concept of looking at the easy diagnosis of IBS and see everything that's going on. It's like a TB patient coming in and the doctors diagnose chronic cough and give them a cough suppressant.

That, and you can't give someone a hard core treatment for something and then test them for it. Hrm, you're on steroids yet you don't have any inflammation. Clearly there was never any inflammation in the first place. Yes, and since you have no appendix you certainly couldn't have ever had appendicitis.

Anyway, it should work itself out eventually. These things usually do. It just takes a lot of time and trouble for the solution to force itself on the doctors.

 

[soupdragon69]

Thanks Lee for your thoughts! There are days I just sit and despair with the tears tripping me but then I think if I dont get up and fight my corner who else will? I am under several consultants and my GP and some of the support nurses do say from time to time it would be great to have a case conference to thrash out all my issues with everyone there but then they say it wont happen because it would be impossible to get them all together at the same time. As a result I wrote the 8 page letter to my gastro cons. Gave a copy to my GP and also my Occ Health Cons so they are both kept in the loop. Now I just wait and see what the outcome is in relation to getting the appointment (hopefully in January).

Colt,

It is a tough path to travel isnt it? As you, I have just felt like I am beating my head off a brick wall in particular due to the last three scopes I have had and the amount of steroids (in weeks) before each. Thankfully I have documented the pain in relation to my crohns is different to my IBS and have raised the question that if was "just" IBS why do my stomach, mouth and throat all have problems at the same time and been specific in what way too. Also, if I am not absorbing my Vit D which is proven and I have had to have IM injections then why is that the case if I my crohns is not flaring??

Hopefully I will have some answers or at least made him put his thinking cap on and give me some directions to move in!

Will keep you posted as I am intrigued as to what he comes up with - just hope I am not disappointed! LOL