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04-07-2008, 07:41 AM   #1
soupdragon69
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Shoot me now

Hey guys,

Have hit another downer.... am sitting here with the tears tripping me. My gastro nurse has just emailed me saying my consultant wants to do yet another scope and more barium follow through then refer me for surgery....

I am sick sore and tired of being poked and prodded. My last scope was excruciating to the point I couldnt verbalise the pain I was in. Felt virtually every biopsy taken. The barium took 4 days to go out of my gut and I was in agony with it too the last time.

Am just so tired of this whole business... someone just put me down and shoot me now please.
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Jan

IF YOU DON'T JUMP YOU WONT EVER LEARN TO FLY





Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
04-07-2008, 08:55 AM   #2
Kev
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Hey soup... Sorry to hear about this latest round of agony you're going through. How about I just shoot you a big bear hug instead? Anyway, I figure you just got to take a little break, collect your thoughts... maybe let off some steam some way. If you can lay your hands on a picture of your consult, a dart board and some darts (probably easier to get your hands on in the UK versus a gun, right?)... Pin the consults photo over the dartboard, and just keep pelting it with darts till it's confetti... Keep in mind that anger can be good for you if used in the proper manner... Nothing like a little anger to recharge batteries at times like this. Figure once you are recharged, you'll have the energy to fight this damned disease AND put up with the poking, prodding and surgery that your consult has in the works... I'm guessing they've got a good reason for it.
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Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
04-07-2008, 10:05 AM   #3
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awwwwww jan

i'm so sorry, i can imagine how upset and fed up you are with it all. i take it this was a total surprise to you?

just try & be brave, go with the flow - but tell the team who are doing the scope how painful you found it last time, maybe they can make it easier for you this time. like kev says, if the consultant thinks your symptoms warrant it, then you probably do need it. maybe this will be a blessing in disguise, get the nasty bits removed & then you can move on with your life.

big hugs jan (((xxxx))) & you have my msn if you want to moan & scream at someone xxx
04-07-2008, 11:25 AM   #4
Curly
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Having had a gastroscope and colonoscopy in one sitting only what seems a few days ago, I can fully sympathise with you not wanting to go ahead. For me the sedation didn't work and I too was in pain with the colonoscopy. Next time I will ask to be more knocked out! They did offer me pethadine, but I declined. Would that help at all with the pain?

Like the above have said. Maybe focussing on the need for it, may help you to rise above the awful unpleasantness of it all. Have a think about how you normally cope with difficult situations, what strategies do you use, then hopefully you can use them in this situation too. Whatever happens I hope that it is less awful and painful than you expect it to be at the moment.

((((big hugs))))
04-07-2008, 11:29 AM   #5
D Bergy
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Sorry you have to go through it yet another time. Can't they put you out all of the way so you won't feel it? I felt the last one and started getting up off of the table, maybe to hit someone, I am not sure what I had in mind. I just felt a bunch of hands holding me down.

The first one I had did not hurt. Maybe you will not feel it so much this time. It has been different for me each time. I am goiung to put off any more scopes until I am fifty, if I have no more problems in the mean time.

Dan
04-08-2008, 02:39 AM   #6
soupdragon69
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Hey Guys,

Thanks for all the kind words it really helps...

Kev, might get one of my scope pics of my ulceration and throw darts at it - I hate this ruddy disease!! Thanks for the bear hug it was much needed at the time.

DB, nope wasnt expecting the answer at all. We were talking about increasing my remicade either timing or strength wise and +/- methotrexate.

Curly, Pethidine is a painkiller so yes it will help you. One to think about for next time..

Dan, yep remember sitting forward with my upper scope and my consultant telling me to lie down again.

My problem with the tests is this: I feel I have more patches than just my ileum. I have days where my food gets stuck just at the top of my throat and also just before the food goes into my stomach (my GP thinks my throat goes into spasm and that its crohns related).

I get really bad stomach pain where it feels like my stomach is encased and unable to expand and I cant bend over for any reason.

I also have bad pain intermittently just above my belly button that comes and goes in intensity but is always there just like my right lower quadrant pain.

My mouth flares even with just putting certain foods in my mouth and the roof of it will go raw as though its been scalded. The tip of my tongue ulcerates within hours too.

I have been saying all these things the whole time. Was tested to the hilt last summer for the stomach pain and nothing else looked at. So what they gonna do? Operate and take ALL the areas concerned out? I dont think so. So what is the point?

Add to that what went on during my last scope where I was incontinent and in excruciating pain I really dont want to anywhere near any of them! I told my gastro nurse I had decided this was the level I would have to live with (my consultant told me in 06 that everyone has a certain level - for some its completely healthy remission for others its varying degrees). As a result I was just focusing on anti sickness meds (because I get really fast horrible feelings of severe nausea when eating at times - will hit me out of the blue) and painkillers for my gut and other pains.

The gastro team want my GP to refer me to a rheumatologist as they now think I have an autoimmune arthritis or something else wrong due to all the nerve, muscle and joint pain and stiffness I have day in day out. My asthma has improved but I have a prat of a consultant for it and he told me a few weeks ago I should be thankful for remicade as it will sort all my problems out. I now have 6 skin conditions that are on varying treatment and my skin crawls and itches 24/7 despite high dose antihistamine. The asthma cons wants to put me on 2 DIFFERENT antihistamines at the same time but couldnt give me an answer as to why so I told my GP it wasnt happening!

See what I mean now? Definately need put down! ;-)

Am sorry guys for being such a whinger at the minute.... am just a tad fed up with the whole stupid business. Grrrrrr

Last edited by soupdragon69; 04-08-2008 at 02:44 AM.
04-08-2008, 03:53 AM   #7
drew_wymore
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You're not a whiner Jan. We all go through times were we wish we didn't have this stupid disease. It sounds like your consultant is a wanker, I think thats the proper term?

Anyways I'll be sending good vibes your way and hoping things get better.

Drew-
04-08-2008, 04:22 AM   #8
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lol drew, i know a few doctors who've specialised in that area too

jan - you're dealing with so much! you obviously have a really strong determined spirit to cope with all the varying symptoms and pains, and still manage to keep your job, and your humour - i dont think i could cope the way you have so far. c'mon hun, get that chin lifted up and try & get through this wobbly time as best you can. we're all behind you here.. (well, not physically or else we'd probably get in the way of the scope..) but you know what i mean

regarding the spasms in your throat and stomach.. you didnt mention if you're on any kind of antispasmodic? my mum has IBS, and she suffers esophageal spasm, which often comes on when she's out walking (she was tested for angina as it was a similar pain & pattern, but thankfully proved not to have that). she was given merbentyl syrup to calm the spasms. also, i used to suffer from anxiety related throat spasms, which were really horrid - it felt like i had a mass in my throat, couldnt swallow, it affected my voice, and scared me - a lot! i ended up having an ENT consultant take a detailed peer down my throat, and he confirmed it was the muscles going into spasm. again, i took merbentyl - and it was amazing. it worked within minutes of taking it.

sounds to me like you need a real overhaul, someone to look at all your symptoms and meds, and spend some time getting you on the right track.

and hey, you cant get put down - the clangers will starve!!!

((xx))
04-08-2008, 05:34 AM   #9
soupdragon69
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Hey Drew, you made me laugh at your thoughts. My asthma consultant has a degree in that! My gastro cons unfortunately hasnt been around when I have been ill and in hospital. He said at one point he was not going to go to conferences and take hols in future so he could nail me lol

DB, they told me I had IBS last summer when in hospital. Am on an anti spasmodic and take it regularly, probably needs reviewing and changing.

You are right I need yet another overhaul. I decided the same thing overnight. Have written a huge epistle of a mail to my gastro nurse. She told me in her last mail to me yesterday she was going to take my comments to my consultant so I decided to give her sommat to take! ;-)

Lord I hate this so much! Still convinced I need shooting even if the clangers starve DB..
04-08-2008, 09:01 AM   #10
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ok, forget the clangers but consider me - i may just make it down south this summer... we have a coffee date you & i.

its a great thing that you have this line of communication with the nurse there, and i'm really pleased you've given her all the details to pass on to the big guys. maybe, having read the whole thing in your words, they may get a clearer view of the whole picture.
04-09-2008, 11:18 PM   #11
soupdragon69
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Hey DB,
Yep coffee date duly noted in diary in block red capitals! ;-) As you can see am up at stupid o'clock (since 4am) and really needed to sleep as back at work again today. Yesterday was rough and very manic so probably havent unwound enough yet and conscious I need to get up on time too.

Still waiting to hear from gastro team. Me thinks have given them food for thought so am getting scared now as time goes on as to what the answers might be. Deep breath!

Anyone offer to let me hide behind them when I get the mail/answer?
04-10-2008, 03:52 AM   #12
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lol yeah i'll protect you, all 5'4" of me

good luck with their reaction, jan - i hope they really take on board what you've said. keep us posted.
04-15-2008, 09:48 PM   #13
Sojourn
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As a nurse, I'm sure you do a better job of explaining your symptoms, concerns, etc., than us laypeople. Maybe you do such a good job of explaining it, that it confuses them. I hope they can plot an effective course though.

They've been dangling the surgery option over you for some time now it seems. I wish I knew more about some of your other symptoms so I could provide some insight. I have had the problem of pain near, or on the belly button, with trouble bending over. But that turned out to be an abscess which apparently you don't have.

Let us know and on your side for better times.
04-16-2008, 09:06 AM   #14
Kev
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Yeah, soup.. if I was in your neck of the woods, I'd offer. Hey, you could hide you and your whole fam damily (as we say over here) behind me. And if you wanted, I could just stand there, looking sullen N quiet. Apparently my face can look VERY intimidating at times (even when I'm not aware it is... for proof, see the self photo I took... I had taken pix of my kids at one of their school pagents, wanted to get the pix processed, then realized there was one shot left on the roll... so I just grabbed a quick snap of yours truly. I can't explain the look on my face... sort of looks like I eat little kids for breakfast. Anyway, when combined with my height N build..., welll, I can be pretty intimidating.)

All the best. Fingers crossed and sending you my heartfelt best wishes, ok?
04-19-2008, 03:41 PM   #15
soupdragon69
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Hey guys,

Well I finally heard from gastro nurse yesterday. My cons definately wants to pull all my docs together so will mean derms, gastro + nurse, gp and asthma cons along with dietetics to try and provide me with better overall treatment. He thinks that it may not happen realistically though as so many involved.

Am off work yet again with another chest infection so back on 40mg pred and double strength augmentin antibiotics. Am not allowed to go back to work til my GP sees me again this thurs. I have my remicade due on tues and am hoping to be well enough to have it. Am on the upturn chest wise now and feeling alot better on that front.

Seems my epistle hit home to the gastro team anyway as they took time to think things through and told me in the email yesterday that it has helped clarify things alot more and they didnt realise the pain and ongoing problems I was having.

So next week may bring some more answers hopefully.

Sojourn, the gastro nurse and my gp keep saying they think I have more than one patch of crohns and thats why the ongoing problems with pain in different areas. I just think I have been very fortunate so far anyway not to have had gut abcesses etc although have had ALOT of skin abcesses over the years trust me. The pain above my belly button just doesnt go and I cant figure out why... it varies in intensity but is there. They did ultrasound on me thinking I had maybe obstructed a bile duct last summer but all they saw was one small gall stone and they said it wasnt enough to cause the pain I was in... ask away if there is anything else you want to know - might shed some light on it for me Sojourn.

Am starting to get my second wind to cope with more tests again. I dont really have a choice do I? sigh... lets face it I either stick to painkillers and antisickness every day or I do sommat more about it eh?

Kev, I might just call in that offer at some point! Thanks!

Hope you are all doing ok.
04-19-2008, 04:52 PM   #16
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sounds as if they've really taken your thoughts on board seriously, jan. well done! i'll keep my fingers crossed that they can organise some sort of soupdragon-mending meeting, even if not all the members are present. i am sure some pretty good decisions could be made even then, and the absent members informed.

glad to hear your chest is on the mend, and i hope you'll be ok for your remicade next week.

that point where we're about to leap into more investigations is a horrid one.. we want the end result ie, to feel better, but we know we're facing various unpleasant procedures to get there, plus waiting for results etc... shame we dont have a time machine and can just zoom to the "feel better" part..

at least you're not on your own with all the symptoms now, the people who can help you are aware, and thats a positive step.
04-20-2008, 09:31 AM   #17
D Bergy
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Too many cooks can spoil the Soup.

I couldn't resist that one.

I hope they can put together something that works well for you. Have you had your Colonoscopy yet? Or is that on hold for now?

Dan
04-20-2008, 12:15 PM   #18
Kev
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See, I figured that was why hospital food was sooo bad. turns out I was wrong. Its that the kitchen staff never knows what the ingredients are going to be until after the surgeries are thru for the day....
04-23-2008, 10:40 AM   #19
soupdragon69
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Dan I agree totally with you! ;-)

Had remicade infusion yesterday. Gastro nurse (the one I dont get on with) was called by the staff to see me because of recent chest infection. Finally agreed I could have it. Then gave me a lecture on how they would have to decide whether the remicade was making any difference to me - erm hello?? have I not said repeatedly that I am vastly better to what I was. Hey I only have 3-4 occasions in the week I dont make it to the loo now that beats several ruddy times a day I think!!

THEN my gastro cons rings me lunchtime today out of the blue on the pretext he is checking up on me for the study I am part of (bear in mind its a check every 6mths and he already phoned me bout it 4wks ago). Had a long chat and said he would catch up with said nurse and then come back to me again.

Think he is concerned and am glad he is trying to sort things out for me too. Time will tell eh? See GP tomorrow with the aim of work sat and sun again. Fingers crossed...

Overall am better again chest wise and gut wise oh the joys of ab's and steroids and painkillers and antisickness. If I jump up and down can anyone hear the rattle? lol

Last edited by soupdragon69; 04-23-2008 at 10:42 AM.
05-12-2008, 06:06 AM   #20
coachvee
 
soupdragon69 said:
I also have bad pain intermittently just above my belly button that comes and goes in intensity but is always there just like my right lower quadrant pain.
Just wanted to say that's interesting because one of my symptoms is very similar to this - how many times have I said to the doctors "It's a stomach pain.. but I guess it is too low for the stomach?" ^^; However the majority of my pain is like a "band" across my whole tummy, over the belly button..

Also wanted to say I really feel for you, it sounds like you are on the mend at least, make sure to keep us posted.
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