# Surgery



## Keona

Im going under tomorrow.

Any suggestions for a speedier recovery?  I have gone grocery shopping and froze some food for quick easy meals when Im hungry.
I also did all my laundry, changed the sheets on my bed, borrowed a few movies... 
think Im all set !


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## Crohnsian

Again, good luck Keona, fingers crossed for u!

as for a speedier recovery, i wont say it'll be an easy few days after the op coz it wont. I had a morphine drip controlled by a button for the worst of the pain but the sooner u can get off that and onto normal painkillers the better u will feel. Morphine is horrible and u lose time in the induced haze - it does deal with the pain tho. 

Also the sooner u can get out of bed and start moving around the sooner u will be able to go home - its hard work at first but the docs and physios should encourage this, so once u can get up, do it as much as posssible and get ur strength back - although ur only in bed for a few days its amazing how much strength u lose.

All the best Keona, and enjoy the relief afterwards!

Ian


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## Keona

HA..thanks Ian.. I wasn't looking for additional comments from people who already wished me luck... someone asked me to start a thread so they could follow progress - so I decided to focus on recovery 

Thanks for the tips.. I have heard quite often to get up and moving ASAP.  I will definitely make sure I do this.
WEndy


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## Crohnsian

Keona said:


> HA..thanks Ian.. I wasn't looking for additional comments from people who already wished me luck...


 That thought hadn't crossed my mind tbh, just wanted to share my experience (2 surgeries) and offer a little encouragement and support in ur scary time. Although its not a nice experience, i look back now and its just a blip on the radar really - hope its the same for u and ur fighting fit and back in the ring soon! After surgery i think u'll agree... its nice to be upright!

Ian


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## Keona

ya..it is a little scary ...  my emotions are messed up...not sure if it's the dilaudid or fear.... or both


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## MapleLeafGirl

Good luck Wendy/fellow hamiltonian - I haven't been on the board a lot lately. What are you having done?  I am still waiting for a date for mine (hopefully soon).  Any tips - please share!


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## dreamintwilight

I am not help in this area, unfortunately. I haven't had to go through any surgery yet! But I will be following along and cheering you on from this end of the computer screen!


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## bruscar

Hey Keona,

Good luck tomorrow, best tip is to get up asap after surgery obviously with help.  But to get up and walk will see you right.

I have had five op's and each time it gets harder to do, but it works and gets your lungs clear too.

Big hug

Bruscar


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## Keona

thanks everyone ... starting the cleansing thing.. looks yummy..


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## DustyKat

Sorry I missed this thread Wendy!!!

I wish you all the luck in the world hun. I have been thinking about you 'cause it's already Tuesday here, :lol:. 

:goodluck::goodluck::goodluck:

Everything is crossed for uneventful surgery and a very speedy recovery.

Lotsa love, :wub:
Dusty. xxxxxxxx


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## Keona

Thanks Dusty  
It will all work out   Just nervous not knowing exactly what they are doing.  
I am still thinking of Matt.  Sending positive vibes... I will,  even when Im under anesthetic 

Thanks everyone.
I will keep you posted.
Wendy


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## Keona

They cancelled it just as they were putting in the IV.  I was already on a gurney and in a gown and they came in and told me it was cancelled... the person before me had a surgical emergency and they would be in there for awhile longer.  They offered me a free parking pass and a gingerale... I say I should get a free tummy tuck or something...
they mentioned Monday but I have to call the surgeon as she couldnt check her schedule in the OR.


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## dreamintwilight

Are you serious?? Holy cow...

Talk about pulling at your emotional strings. That's awful. Wish they would have been able to tell you sooner rather than what seemed like moments before getting wheeled in.

 I really hope Monday works out for you. That's tough that you have to go through all the mental preparation again!


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## Keona

yep...serious...
They were about to give me gravol because I was so anxious and was about to throw up.  It was moments before.  My surgery was for 11:30 and they told me at 11:00.  I just had to speak to the surgeon and anastesia and be sedated...

this means I will be doing bowel prep for my birthday the day before.... sucks.....

..just got off the phone... Im booked for Monday at 11:30


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## MapleLeafGirl

that's awful - what kind of surgery were they doing?  Re-section?


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## Keona

they were removing cysts and adhesions and chocolate ulcers.  They suspect my organs are adhered to the pelvic wall.  OBGYN's can apparently do resections but she wants my GI to do it.  They suspect I also have endometriosis in my intestines, bladder and reproductive organs.  She was also going to do biopsies and get an idea as to what is gynaecological and what is GI related.   This screws up my appointment 2 weeks from now for a CT scan (the one with the NG tube.. cant remember the name of it).. they wont do it unless I have had 2 weeks recovery from surgery.  This bumps everything up to a later date...


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## Terriernut

&^$&( !!!  Talk about stressing you MORE!  So sorry this has happened! :mad2:

Cyber hugs headed your way!

Misty


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## Keona

I know... messed up eh?.. I thought it was a late April fools joke or something...


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## Terriernut

Not a joke, prepping twice is it???  (I didnt prep, I was just starved in hosp for 4 days waiting for them to squeeze me in)

They really need more empathy towards people. I wonder how they'd feel if it happened to them!!!

Misty


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## Keona

I complained about having had to do the prep for nothing and the surgeons office is looking in to whether or not I have to do it again.  
Just tired of this dragging on... Im not the only one being inconvenienced ..i had to have someone take my dog, someone went with me... someone dropped us off.. on and on... I have never jumped out of a hospital bed and changed so fast - had to of broken a record... lol


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## Astra

Aw Wendy that just sucks!
So sorry, all geared up and revving, then pulling the plug?
Try and rest now til Monday
Big hug your way 
xxxxxxxx


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## xJillx

I am so sorry this happened!  Try to hang in there for one more week!  Thinking of you!


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## Crohn's 35

Keona, I would of demanded to be done!!! My second resection was put off but only for an hour.  There was an emergency but they wheeled me in right after.  I dunno, maybe it was a good thing you are waiting.  Hope Monday is for sure!!


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## DustyKat

OH NO Wendy!!! 

Surely, surely, surely Monday will be a goer. Man oh man that sucks mate, I hope you can get some sort of R&R over the next few days! 

Thinking of you mate......:hug:
Dusty. xxxxxxxx

PS. Sarah was one of those people that got the surgery list cancelled for everyone else! Yikes! I remember thinking how I would have hated to have been one of them, all prepped up and no where to go......:voodoo:


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## Dexky

Sorry Wendy!!  I know we talked about it but the more I read this thread the more it pisses me off!!  Why couldn't they just move their entire schedule off because of the emergency?  I wonder if you are the only other patient affected by this?  I guess, knowing what you've been through for the past year, I'm just a little more inclined to believe *It's your turn now!!!!*

I hope your patient advocates are reaming someone a new one over this!!  Is your CT scan ,that can't happen as scheduled, in the same hospital?  If so will they accommodate the new schedule?


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## Keona

ya, I am sort of at a loss.
Im not sure why they did it the way they did.  I guess it seemed easiest for them to remove me who was next than to move everyone else.  They told me that there are only 3 people scheduled for Monday.  I got the impression that I was the only one who would be affected by this.  My OBGYN doesn't really know what I have been through the past years. Ya, I am thinking the same that it is my turn now... my advocates tell me I don't need to be so polite but demanding doesn't get me anywhere either and to be honest - I am barely making it through the day so just showing up to my appointments is an effort let alone advocating for myself.  
My advocates have offered to go with me to all of my appointments.  I have one on thursday about the dilaudid (its not working) and I have one next week with the intern and a dietician together.  Not sure why since they havent diagnosed me with anything so if they tell me to eat more fiber.. I will lose it.  The intern told me to buy metamucil and sprinkle it on my food - when I got home I opened it up to smell it ..THEN I read the bottle and you're not supposed to eat it dry.  Im not sure what good going to a dietician is if they dont know what the problem is.  GI is saying Crohn's and the GP is saying endometriosis.... It is possible that I only have endo..but I honestly believe I have Crohns.  My brother has severe Crohns and is waiting for a liver transplant.  When I told the GP this - she said Crohns doesnt effect the liver.... so.... my head spins....
I got up really quick out of the bed and changed back into my clothes really fast today because if I didnt... I would have started crying and I didnt want to... 
I think I have a very high pain tolerance or am exceptionally good at hiding it or masking it until I am alone... it hurts to take a deep breathe sometimes... dont know why but have had chest x-rays and they are okay..  not sure if it is GERD related or not...
I dont know what to do anymore... I went to ER and they just do a roll up bedside ultrasound...ad then tell me I need a CT.  Yep - my CT (in the same hospital) will have to be moved because my GI said they wont do it until I have rested for 2 weeks after surgery.... I don't think he knows this was cancelled...I will call them tomorrow and find out...just couldn't do it today.
Im frustrated... no doubt about it.. but I don't know what else to do...  Im feeling somewhat invisible...


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## DustyKat

Oh Wendy, my heart goes out to you hun......:hug:

Are you going to your next appointments with an advocate? I think it is a good idea if you do, it is just too hard to do this on your own, it's too hard for anyone mate. 

In my own opinion the intern will know shit, you will know more than he/she does. I'd say hear the dietician out and take away from it what you wish. If you know and trust your GI then I would listen to them over the GP, the same as I would listen to them over a surgeon when it comes to ongoing treatment for Crohns. 

I think when you live with pain and discomfort for so long it becomes the new norm and yes in my own experience you build up a tolerance to it that for many people would be unbearable. I always said that about Sarah and her problems with getting a diagnosis. I don't think it was just that her tests kept coming back normal, mind you that didn't help!, but it was she presented well (read that as......"oh, my pain isn't too bad"). This was in no way her fault and it breaks my heart to think of the tolerance she built up. 

Why do they not do a CT when you present at ER? 

Godammit Wendy I so hope you get help and answers soon! 

We are here for you mate and you will never be invisible to us! 

Always thinking of you my friend......:Karl:
Dusty. xxxxxxxx


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## Keona

Hi Dusty
I called this evening and left a message with the advocate.  I think she will do her best to go with me as she has commented on going with me to see my GP in the past. 
I will go to the dietician as I havent seen one before but if they tell me I just need to take metamucil, etc.. then I will flip.. Im tired of hearing people dismiss me by saying what I need without hearing how it effects me.  If they knew what I was eating now.. they would probably think differently.  I eat far too much sugar.  I crave it a lot and I find it keeps the weight on.  I flip flop between dioreah (u would think I would have learned how to spell this by now) and constipation.   She might be helpful... I am willing to hear her out but I dont get how they can advise me when they all have a diferent theory about what is wrong.  From what I have read here for over a year now...the Crohns diagnosis fits... and so does the endometriosis... but Im not a doctor.  It scares me yet at the same time reassures me that Sarah's tests came back normal.  My GI seems to be hinging a lot on the fact that my blood work is normal... He mentioned prednisone last time and mentioned that it would cause short bowel syndrome... another issue... 
He wants me to have the lap done so that she can take biopsies to make sure.  So, I am sort of appreciative that he is making sure but at the same time... Im in pain here.. something needs to be done.  I m taking dialudid so it is a little easier to present well but I can feel that something is wrong inside and the scary part is it is getting worse and worse.  My periods are definitley over the top when it comes to pain... 
A new symptom (and I dont know what it is) is that there is the grumbling like when my stomach does it but it is a lot lower.sort of in between my small bowel and butt...it doesn't hurt but is very loud.
When I went to the ER, they did the roll up bedside ultrasound which came back normal.  They also did chest x-rays and abdominal x-rays.  All came back normal.  The attending doc told me I needed to go to my GP and ask for a large ultrasound.  I asked her if they could do one there and she said no, that there was no one there on a week-end to do it and I needed the larger one as it is more nuanced (she pointed to the ceiling).  I asked the intern when I made the follow-up and she put me on dialudid and no CT or ultrasound was scheduled.    My GI said he wanted me to have the last MRI and would arrange for the CT with NG tube to be scheduled 2 weeks after the surgery.  I havent received a date yet but they told me they couldnt get me in before the lap. and they wouldnt do it unless I had 2 weeks recovery so they would arrange for after the surgery... 
The hard part is I keep feeling hopeful that I will get answers with each appointment and I keep leaving time and time again with a different date and all these dates have added up to 3 years so far...I literally feel lob sided - my right side feels so full and I have a hard time standing straight up at times or initially.  
I dont know... I feel like a colossal complainer and Im not getting anywhere...I have done everything they told me... I went to physio for 8 weeks when they thought I had arthritis... they told me I needed a new bed.... I took arthritis medication, Ive done the MRI's... Im not getting any better - I am getting worse.  Maybe this is part of what makes Crohns so insidious (if it is in fact Crohns).  I feel my GI thinks I have Crohns but wants more proof before putting me on prednisone.  I had a lot of hope attached to the lap. - it is hard to maintain it when every appointment is a disappointment...
I know people on here understand me and what Im experiencing.  My friends outside of here offer for me to go to a "food and drink fest" this week-end to help cheer me up...they dont understand and I dont know how to explain it... I havent seen them in a very  very long time and I keep blowing them off thinking I will get help and wont need to explain it and I can pick up where we left off... 
i dont know anymore.  You guys "get it" and I dont feel invisible here which is part of what makes me think I do have it (along with the symptoms, test results, etc.).
Anyhow.. Im exhausted.  Thanks Dusty   I really value your input... 
thanks 

Wendy


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## Terriernut

Wendy,
You deserve alot better than this.  I do wonder if you have endometriosis and crohns.  Its certainly possible.  

But pardon my stupidity, why do they want to do a CT scan AFTER surgery?  Wouldnt they want to do that BEFORE surgery?  Can you have your advocate ask the GI and GYN that one?  Wouldnt they want more info first?  Or am I being too practical here??  

I just hope they can get you some relief, and very soon!!!

:hug:
Misty


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## Keona

At my last GI appointment they said that they couldnt get me in for a CT before my surgery.
... I have thought the same thing - nothing about this seems too practical 

the only way to be diagnosed with endometriosis is to do surgery - a laparoscopy.  The day I saw the OBGYN she said that she was 99 per cent sure I had endometriosis (so am I, and I have been telling my GP that for over 20 years now).  She was already prepared to put me on the injections of Lupron and add back (leeches your calcium).  I was told by my GP it was time for another lap. I choose the lap. over the lupron for 3 reasons.  1) I read they arent supposed to prescribe it unless they are 100 per cent sure (what if this is all Crohn's? and she is giving me Lupron for it??) and 2.)  Enough is enough.. they need to look to see what is going on inside if their,  "images are blurry" that it just prolongs everything... and 3.) if it is endo, there could be significant adhesions "glueing" my organs to each other and to the pelvic wall.. so she will be able to remove the adhesions and release the organs - which will result in a lot of relief.    So, she had planned the lap with the intention of doing  treatment during the laparoscopy.  She thinks I have it in my intestines, et al.

My GI thinks I might also have endometriosis but also thinks I have Crohns as well.    The bowel wall doesnt thicken with endometriosis... it can invade through the wall though...and cause strictures... which I have but I also have the thickening.

I hope I get some relief soon as well... this is crazy.
thanks Misty


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## ameslouise

Oh, Wendy! You have been thru it haven't you???

I'm so sorry to read about the extent of what you are going thru.  Sending big hugs to you.

I don't know what an advocate is, but I hope it's some big burly type along the lines of Joan's burly nurse to rough them up a bit!!

Good luck - hang in there!  - Ames


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## Keona

an advocate is someone who goes to the appointments with you (there are all sorts of advocates; legal advocates, medical advocates, etc.)
they make sure your voice is heard and they will be there to remember what is said if you get overwhelmed and check out of the appointment early mentally.  Know how when you go to the doctor and they tell you news and it is very technical and overwhelming and after you cant remember everything they said.. or you wonder if what they said is correct?  They are also like proof for me though... sad to say... I feel like I am not believed so when I take my info to another doc I have someone there to say, "yes, they did say that...I was there".  or "one of my colleagues was there with her".  Sad that advocates are needed ..in my opinion..
HAHA .. no, they're not big and burly

it is my experience that when I have an advocate with me - I am believed and heard. I was in pain for a long time and kept telling them.  They didnt prescribe anything for pain until I took an advocate and then they were really nice to me and listened.


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## Keona

The appointment I had today with my GP (the intern, actually) was cancelled..... again.

I seriously don't know what to do anymore.  I am going to get a new doctor but I live in Canada and they are hard to come by.  Today was the appointment to renew my pain medication.


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## Astra

Bloody Hell Wendy!
What's going on at all?
Think I'd be having a dicky fit by now, hope you're ok
xxxx


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## Keona

LOL..a dickyfit... somehow..that sounds appropriate.. I dont know what that means but I think it fits.

I called the advocate.  I am going to get a new GP - this is CRAZY...and then they tell me I need to reduce my stress??


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## dreamintwilight

That REALLY sucks, Wendy. I guess I don't seem to understand the way it works in Canada. I would think if you're going to cancel an appointment on a patient, the least you could do is schedule them with another doctor if you can't wait. Especially when you need more pain medication!!

I'm so frustrated for you. I hope doctor #3 does the trick!


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## Keona

Thanks Marisa.
I dont think I understand how it works here either.  I go to a teaching clinic where there are several teams of doctors.  I was told I need to see someone on my team (so my doctor..and then several interns under her).  There are maybe 5-6 teams there.  My second last appointment was cancelled and I called and freaked out until they gave me another appointment.  I got a lecture on how I am supposed to see someone on my team....  Im not quite sure exactly how I am supposed to do that when I cant get in.  

The advocates have their own doctor for things like this but it has to be a last resort.  She also has a full caseload so last I heard she couldn't take anyone, at least ongoing.  I was told if I needed dilaudid or any narcotic painkiller for that matter, I needed to get the script from the same doctor other wsie it is seen as "double doctoring" and that is a federal offence.  They don't really explain how to do that if you cant get an appointment.... ???  They wont call in narcotic pain killers to your pharmacy either (even if it is in the same building as your doctor).

She didn't prescribe enough to begin with (think I was short about 7 or so.  I was told to take them every 4 hours to build up a "baseline" - it isnt a strong dose.  (a strong drug but not a strong dose).  Anyhow, I made sure I put 6 away just for this reason... for emergencies... I am glad I did...   there was a few times where I needed to take up to 4 to get relief.  I am supposed to take 1/2 every 4 hours.
My advocate made an appointment with me today to see them to figure something out.  It sounded hopeful that they will get me into their doctor anyway and they asked me if I were willing to lodge a grievance with the college of physicians... depending on how stressful that may be.. I am considering.


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## mizgarnet

From one Wendy to another- I have/had endo and Crohn's. My endo invaded my intestines.  This last resection was partly due to endo and my hysterectomy was in 1991.  Life is not easy with either one.  I am so sorry you are going thru so much.  My head would be hurting from the constant banging I would be doing.  

Hugs!
Wendy


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## Keona

Thanks Wendy 
I have to say that I am very grateful for my advocates and for the people on here.  It really scares me to wonder what other people do when they don't know about the advocates or about this forum.  I have worked in the medical field so I know how to navigate the system... knowing how, doesn't mean it will actually get you there though.    I have to think like this so it will give me something positive to think about otherwise I would just cry... 
Anyone know who actually started this site anyway??  I know there are a lot of people who maintain it and keep it going and the members are a big part of it as well.. but I would just really like to personally thank whoever started this in the very beginning... they deserve an award in my opinion... I think I might have given up long ago...

:award2:


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## bruscar

Oh my god, hang in there Wendy.

That is unbelievable


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## Terriernut

Wendy, I too thank goodness for this site.  Everyone here can keep you going when all else fails.  And all else has failed me many a time!

I really cant believe what you are going thru right now.  I just wish I could be there to help.  Nothing would please me more than to hear you are getting good treatment from the Canadian medical practitioners.  Over here in the UK, I know they can take their time, but wow are they great when you need them...for the most part. I just hope you can get the help and support you need from an advocate and from the GI's...all my digits are crossed.

They should stop messing you about!!!

:kiss:
Misty


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## Keona

thanks you guys.  I saw the advocate today and they are wiling to do whatever it is I am wanting help with.  I just needed to vent with her today and she just listened and validated... which was very helpful but at the same time.. I cant stand listening to myself.  If I need help getting a new doctor or if need help with the ones I have... it was made clear they were going to help so I do feel like I have a good support system on my side.  I just wish I felt like the doctors were 
I think the big thing is,  I dont feel like they are reliable and theyre not... so how am I supposed to trust them??  The most important thing we have is our health... and they are messing with it.... its not making me too confident..
anyhow.. I feel a lot better... I am still holding on to hope and that I will get answers on the 11th..but I wish they would stop prolonging everything.... it is painful in more than one way...


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## ev088u

That is horrible!
I had my first operation canceld the day i was there too! in the bed waiting and waiting!
Its one of the worst things in my opinion,
one thing that did help when i finially had my op was salt water on my scar afterwards,
helps the scar heal quicker 
big hugs! hope your day is soon! xxxx
<3


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## Dexky

Is your gyno on the same team of doctors at the teaching clinic?  For piss sake, your gyno knows you need surgery which has been canceled, can't he/she get in touch with the doc who prescribed the dilaudid and persuade them to refill it?  Would they at least do that for you?


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## Keona

nope - my gynae is at the hospital - the same place my GI is.  My GP and all the interns are at the clinic.  I am calling tomorrow morning... everywhere... until someone fills it.  I will risk getting in trouble considering my circumstances... I honestly do not care who fills it tomorrow...so long as someone does...


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## Dexky

Will the gyno be willing to help with that?  Surely, if they know you are scheduled for surgery and had to wait four extra days, they'd be more likely to refill the script.


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## Dexky

Keona said:


> Anyone know who actually started this site anyway??  I know there are a lot of people who maintain it and keep it going and the members are a big part of it as well.. but I would just really like to personally thank whoever started this in the very beginning... they deserve an award in my opinion... I think I might have given up long ago...
> 
> :award2:



Wendy, I once asked the same question.....

http://www.crohnsforum.com/showthread.php?t=12059


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## Keona

Im not sure, guess I will find out tomorrow.  I am willing to call her and ask if I cant get in to see the original person who prescribed them.  
Thanks for the link to your question - gonna go there now


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## SwtNdSpcy

I am so sorry you have been through all this and still no answers! 
And WOW, I don't think I have heard of cancelling a surgery when you are about to be sedated before! That's horrible!
I really don't have any constructive advice.. just that if it was me I would be acting like a crazy person bawling my eyes out to every doctor, nurse, office assistant ect. I came across. Seriously, I have done this. 
I really hope you can get your pain meds refilled!


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## Keona

I have a doctors appointment this am.  In 40 minutes actually.  I dont want to go only because they take me to the brink of almost crying everytime.  I dont cry in front of people.  My advocate doesnt know I am going this am in order to go with me.. I just made the appointment about 15 mins ago... but I am going anyway
It is confusing because they lecture me pretty much on how I have to see the same doctor but yet I cant get in to see them. I am now seeing someone on another team..AGAIN.... I have been through 3 teams...


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## Crohn's 35

Good luck Keona, I know all about seeing different teams, maybe this one will be the one you need for you!!  Let us know how you make out ok? 

Hugs!!


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## Keona

well..it wasnt quite accurate before.  Team A has 7 doctors and they have several interns under each and Team B has 8 doctors and several interns under each... Im on Team B.

I did get an appointment with a different intern... not sure what team he was on or what doctor he was under but my doctor was there and he did consult with her.  He was very nice - as I find the interns are.. they seem like they are still really wanting to help at that point..
he gave me a repeat of the dilaudid and told me to take it every 4 hours whether or not Im in pain to build up a baseline and to also take tylenol for fever.  He said that I know my body best and if I need to take more, not to worry about it and to do that - they will make sure I get in for an appointment if I need more.
He also prescribed new creme for my rash on my hands - apparently when you have it on your hands, you need stronger creme.  (I have been using expired steroid creme at this point )..but the pharmacy has to order it so I need to wait a few days.
He and the doctor also think I have a partial obstruction and to drink Boost or ensure or something similar.   Also, the same instructions about going to ER if I start vomiting and have a high fever, etc, etc....

Over all.... he was very helpful and I felt heard and like he cared... even in his body language he was leaning forward listening and he was very nice... he wished me luck on Monday and wished me the best, etc... told me that the OBGYN may be doing a laparotomy and will likely prescribe me different pain meds on Monday.

Anyhow...thanks everyone for listening to me complain... seems like I am going from one extreme to another - very angry (which isnt like me AT ALL..and frankly finding it very troubling to me) --> being grateful.  My emotions are very extreme lately and I am usually very laid back and easy going.... 

Anyhow... thank-you


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## dreamintwilight

This is great news, Wendy 

Now you can rest ease over the weekend in preparation for your Monday surgery which WILL HAPPEN! 

Glad you felt heard! Only 3 more days to go


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## Terriernut

Great news Wendy!  My fingers and toes are crossed for you for Monday.

:kiss:
Misty


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## SwtNdSpcy

Awww, YAY! SO happy you had a good appointment!
I think your mood is completely normal given your circumstances! 
Good luck Monday!


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## Keona

Thanks Pen, Marisa, Misty, swtnspcy

I am shocked he was so nice and helpful.  My mood is a bit better too.


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## Dexky

I'm glad you won't be in pain all weekend Wendy!  Sounds like things went better than you thought!!


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## Keona

thanks Dex.  It's all good.  That went a lot better than thought!!  Now I just wait...


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## DustyKat

Oh Wendy, this is so great to read! At last validation!

I hope the meds give you some much needed R&R over the weekend. I have been thinking about you, particularly after Matt's surgery and knowing you are still waiting. 

Kick back now hun and put your feet up. Sending you much love and healing thoughts for Monday......

:goodluck::goodluck::goodluck:

Lots a love, :wub:
Dusty. xxxxxxxx


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## Astra

About bloody time someone listened to you Wendy!
He sounds like a real gem.
Have a great weekend, and fingers crossed, everything crossed for you now that surgery on Monday happens.
Chillax now
xxxx


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## ameslouise

Phew! Glad things got sorted out or I was gonna have a dicky fit! 

Good luck Monday.  Fingers crossed all goes well!

xo - Ames


----------



## Keona

lol.. dicky fit..  only Joan...lol....

Thank-you everyone for your support 
More bowel prep tomorrow and then no food after midnight... have to be there for 11:30 and then surgery at 1:30... 
I will update everyone as soon as I can 
I really do appreciate everyones support
:ghug:

there really is strength in numbers!!!


----------



## Entchen

Take good care. Sending best wishes for a successful surgery and smooooth recovery!


----------



## Welsh-bird

Hi Wendy- sorry I'm coming to this thread late.
Just wanting to wish you all the best for your surgery tomorrow. Hope it's all smooth sailing, and a speedy recovery. Will be thinking of you.
Hugs, And x


----------



## Keona

Thank-you Andrea..   That means a lot considering you just came through the wringer... AND ON TO THE OTHER SIDE... I might add!
You have a lot of strength my friend   Keep on keepin' on  
Hugs, and x right back at ya!!!

on a different note... i had a dream last night during what little I did sleep... my dilaudid was dispensing out of my right ear... I was taking them like I was a big Pez head..
..


----------



## xJillx

Good luck tomorrow!  Thinking of you!


----------



## dreamintwilight

Yes, good luck Wendy!  Thinking and praying for you and your surgery tomorrow!


----------



## Dexky

Can't wait to see your happy update....again!  This time for sure!!


----------



## Lisa5326

It's been awhile since I have been on here but I just read this thread and I wanted to say *Good luck with your surgery!!*


----------



## Keona

Thank-you Entchen, Jill, Marisa, Dex and Lisa 
There is something about being told you are not supposed to eat anything that makes you want to eat everything thats not nailed down  :voodoo:
Im getting waves of nervousness but this site is keeping me amused.. 

I am taking my laptop so I will update as soon as possible..
peace out


----------



## Dexky

Keona said:


> There is something about being told you are not supposed to eat anything that makes you want to eat everything thats not nailed down


:ylol:  Soon you'll be able to, I hope!!  Wishing you the best and a speedy recovery!!  See ya soon!


----------



## Mayflower537

Thinking of you, Wendy!!


----------



## Crohn's 35

> lol.. dicky fit.. only Joan...lol....


Such a lady lol..:yfaint:


----------



## Crohn's 35

Hey Wendy keep us posted, hope you recover quickly!!!:hug:


----------



## Astra

Hey, I'm no lady, but I'm all woman!

Anyone heard from our Wendy yet?
Hope she's ok


----------



## Terriernut

Wendy!!!  Hope you are doing ok!!???  
:getwell:
Misty
soon you'll be saying...make that a CHEESE burger!!!!


----------



## dreamintwilight

No word yet on Facebook!

She said her surgery was at 1:30. I don't know what the time difference is where she is as compared to Chicago, but if it's the same time zone, she's only been in surgery for an hours.

How long does surgery like this typically take? Is it the kind of thing where she has to stay in the hospital afterward for a while? I suppose it also depends on what they found too!

We're all thinking about you, Wendy!


----------



## dreamintwilight

Ok, so apparently it is 3:40 pm where Wendy is. So, it's been 2 hours since surgery was scheduled.


----------



## Crohn's Mom

Thinking about you and hoping all went well!!
:wub::well:


----------



## Dallies

Thinking of you Wendy and sending you lots of love xx


----------



## Crohn's 35

She could be resting, and maybe no internet where she is, some hospitals (older ones) dont always have internet.  Hope you are ok Wendy, post when you can... REST girl REST!! :hug:


----------



## Terriernut

Hope you're doing well sweetheart??  Hope to hear from you soon.
Misty


----------



## ameslouise

No pressure, Wendy, but we're all thinking of ya!  Hope all went well!

xo - Ames


----------



## Keona

hey thanks everyone
They called me to go in an hour early and I arranged it - when I got there, things went as according to planned originally so I basically had to wait for nothing..
I was only in OR for 40 min.  They found 2 areas where there was endometriosis.  She removed it..and instead of 5 little holes made 2 bigger incisions... not that big though. There was nothing adhered to my wall like originally thought so the pain in my hip is still there.  The suspect all the pain is likely from Crohns.  The good news now is that my GI is on board with the endometriosis and Crohns diagnosis although I believe she took biopsies.. was supposes to ...
was on tramadal (?) morphine and now percocet and dilaudid.  Get nauseous really easy.
everything is good I am home.  goin before i vomit


----------



## IBeDrummin

Glad to hear the update, Wendy. We've been thinking a lot about you. Get some rest!


----------



## Crohn's 35

Thanks for the update and hope you feel better soon!  Drinking sips of water helps.  Arent you given Gravol?  Time heals, make sure you rest!  All the best!


----------



## Jer's Girl

You sure were put through a lot!!!  Holly cow.  Thinking of you and hoping for a speedy recovery!


----------



## DustyKat

I'm so happy to see this update Wendy! YAY! 

I hope your recovery is speedy and the vomiting settles hun......:hug:

Thinking of you buddy, :Karl:
Dusty. xxxxxxxx


----------



## Keona

im ok.. stopped the percs.. blaaaa
yep was having gravol injections now ginger gravol...still want to throw up


----------



## Dexky

Sorry for the nausea Wendy but it's good to hear you're ok enough to stop the percs!  

Any idea when you might hear from the GI?


----------



## Keona

Im not sure - forgot to ask the surgeon if she took biopsies.  Anyone know how long it takes to get biopsies back?  
I think I am feeling better than had expected since there wasn't all the adhesions she thought there would be.  Just 2 implants on each side 
I have to wait 2 weeks after surgery for CT .  
I still dont have any voice... ever since I woke up


----------



## Crohn's 35

My goodness girl you are up early! Most biopies can take up to 3 weeks, depends on the hospital and when your next appt is. I bet you are glad it is all over.  Taking lots for pain?  Let us know  how you are feeling.  Hugs.


----------



## Keona

I havent slept at all.  
all my GI said was they wouldn't do the NG tube after just having surgery...  I have to wait the 2 week recovery.
It is hard rolling over or standing up and sitting and standing up straight.  I am okay after I have taken a few steps. If I drop something..its staying there...until I get my dog back (shes' part retriever). Incision is across the belly button and left side so I have to sleep on my back (my hip pain is all on my right).
the dialudid makes me really itchy and the percs make me throw up when I move.  Id rather be itchy...
I think anesthetic or tube made me lose my voice.  It was very high/squeak ..now theres none
My G.I was right all along...


----------



## dreamintwilight

Goodness gracious, Wendy! what an experience!

I'm glad to heat you are off the percs. And obviously you are feeling well enough to get on and update us every once in a while on here  Is anyone coming by to check on you, just in case? Friends or advocate? I think I recall having a little trouble with my voice back when I had my wisdom teeth removed in college. Hope that comes back soon!

Glad to hear Keona will be coming back soon too! Alan keeps asking me about that.


----------



## Crohnsian

Great news Wendy, glad to hear u finally got under the knife and got some answers, i hope u start feeling a lil bit better soon!

Ian


----------



## Terriernut

Hope the voice comes back soon Wendy.  I'm sure it will.  And I really hope the nausea lessons. While I was in hospital, many folks were having the same problem from the pain meds, and the after effects of general anesthesia.

Hope your baby dog comes back soon from the 'sitters'!!!  That will make you feel better almost instantly no doubt. (it would me!!)
:ytongue:
Misty


----------



## xJillx

Praying for a speedy recovery for you, Wendy!


----------



## Astra

How are you feeling now Wendy? Any better?
You'll feel much better once Keona is home with her Mum!
Take care and take it nice n slow
xxxx


----------



## ameslouise

Hi Wendy - forget my PM, I found you!!

Glad the surgery went well relatively, but sorry you are having a hard time with the painkillers (send me the percs!).  Dilauded makes me itchy too and makes me talk CRAZY.  Yuk.  Hope the nausea clears up soon.

Take care of yourself and rest, rest, rest!!!

xo - Ames


----------



## Keona

KEONA IS ON HER WAY HOME RIGHT NOW     

I forgot to tell you that my advocate asked me to ask the anestheosologist what it was they gave me to put me out.. I just refer to her as my friend there.  Anyhow, they put the stuff in the tubes behind me which made me drowsy and then they pulled out the big tube of milky white stuff..as he was injecting it into my IV, I asked... "my friend wants to know what you are knocking me out with".  I saw him look at my surgeon and the other nurses and laugh and my surgeon just shrugged".. I think they thought I was talking about my friend in the room... haha
then he told me that it was the stuff Michael Jackson died from and I said "OH GREAT!" with a quick reply from the nurse "only you have the anethiast, he didnt".. I was out... 

anyhow...thought I would pass that on  
still feeling crappy - my stomach is massive.  I was sitting up for most of the day and still havent slept.  Doing good though.  No perc.. (Ames..I will send them to you )  BLAHHHHH... they made me really angry (and made me think that everyone thought I was faking it.)...turns out no one thought it at all ..
gotta go outside and wait for my puppy


----------



## Terriernut

Wendy, puppies have amazing superkalifragilisticexpeialadocious healing abilities!!!  Keona especially.  I expect you will sleep tonight, dog farts and snores no doubt helping, and you will feel better in the morning.

Lets hear it for the dogs!!!

:hug:
Misty


----------



## Keona

too much excitement I guess.  Got sick (excitement?? no sleep?? doing too much??) anyhow, my voice is back to being really hoarse and they asked me to consider tomorrow night.  I have an appointment in am/advocate and then doctors/afternoon.. maybe evening ( i can of course have her back whenever I want her)..  it also didnt occur to me how i would pick up after her until now..

charlie is good too ..


----------



## ameslouise

I guess you need a pooper picker upper!

Take it easy - I know you miss your cute pupper, but make sure you feel up to it first!

- Ames


----------



## tiloah

I don't know how I missed this thread. I was wondering about you! Glad to hear the surgery went well, hope you're feeling up to speed real soon.

Get some rest and get well!


----------



## Dexky

Hey Wendy, I hope things are continuing to improve for you.  Is Keona home?  Wishing you well!!


----------



## ameslouise

Thinking of you, too, this morning Wendy!  Hope you're doing okay!

xo - Ames


----------



## Keona

HAHA... thanks everybody!

KEONA is home as about 1/2 hour ago.  I am really VERY HAPPY about that...   The people who had her owns a farm (and was spoiled!!) and she was playing with all the animals and went on a lot of car rides (she lives for them).  The person who took her was an advocate.  She ran straight to the bath tub after we went grocery shopping --  to catch a nap... she is whopped 
Amy I thought of te pooper picker upper but i live in an apartment building and didnt want to bring a dirty pooper scooper up ..  I will get a lot of practice squatting 

On another note - every thing looks good... incision wise.  I went to the dietician and doctors yesterday and they think I have a partial bowel obstruction.  I have been taking 2 senekott and 2 prescribed strength docusate sodium and 30 ml 2x's day of lactuloase....and still no pooping since surgery.  I am feeling it in the area where the strictures are.. and I also feel a little nautaus after eating.  I have been put on a soft food (soup, cottage cheese, smoothies, breakfast anytime) diet so I hope it helps.  I think the fact that I had so many narcotics and anaesthetic likely contributes to the problem (not to mention lack of activity) so I will see how it goes... sort of a catch-22 b/c the more pain, the more meds I take.  
Good thing I LOVE smoothies.
They keep reminding me to call 911 if I get extreme pain and start vomiting... i think it will start working soon... 

click on my facebook link and you will see a new pic of Keona.   I couldnt upload it here...says it is too large so just as soon as I figure out how to ... I will


----------



## dreamintwilight

AWW! So glad you got Keona back. Love that she naps in the tub, haha! her new profile pic says, "Mommy, I'm so happy to be home!"

Glad your incision is healing well. I hope you don't have an obstruction! Yipes! I had terrible terrible pain from my partial. Can they not prescribe steroids while you are recovering from surgery or combine them with the other meds you are taking? I'm having a brain fart whether or not steroids and recovery mix.


----------



## Keona

i hope I dont either Marisa.. in fact, I think of you and your experience ..yikes!  I am feeling the pain in the same spots as before but worse and different.  I really feel they are listening to me now..they want me to call the on-call if anything changes or call 911.. 
i dont like that they ask about what my pain is like b/c there are a few different places and the pain is different in each.  The new pain comes in short but intense waves like I am in labour and then it goes away..

oh..and just a tip to pass on.. my dietician told me to get Carnation Anytime (use to be Carnation Breakfast) as it is cheaper and doesn't have that vitamin aftertaste to it.  There is also more to drink so you can feel a little more satisfied.  You can add both to smoothies   Im going to be a smoothie pro when Im finished...


----------



## Doc

So glad everything went well, but sorry to hear your are still in pain. : (  Hang in there, do call if you need to...those doctors work for YOU, remember...!

Oh, and your milky white medication is likely propofol, just in case you still needed the name. : )


----------



## Keona

YA!  that's it... I didn't like it .. AT ALL ....    Luckily it was for only a few seconds...    
Michael Jackson used THAT to sleep ?!?!  whoa....   :eek2:

thanks for the encouragement Doc..  I would get to hospital if I needed to... 

Marisa, I dont know why he hasnt prescribed prednisone yet.. he mentions it almost every appointment...  He wanted to see the biopsy results first I guess to make sure it isnt something else... .  He keeps telling me that he wants to be 100 per cent sure I have it... he is pretty sure and every test points to that .. im confused why he's waiting.. but according to peoples experience on here with it.. IM a tad bit apprehensive myself :confused2:  I haven't told him that though.


----------



## ameslouise

I must have been under a rock for the last year because I just realized right now that KEONA is the name of your dog.  DUH!!!!!

Glad you are both home now!!!  Hope you start passing stuff soon and that it is not an obstruction.

Take care of yourself and get plenty of rest!

 - Amy


----------



## Keona

ROFLOL






yep..my dog's name is Keona 

Thanks for the laugh Amy...


----------



## Jennjenn

I am happy that your Keona is home. I know how empty a home can feel without your beloved doggie in it! 

I really hope you do not have an obstruction. I am surprised that they have not done more for you with the pain and symptoms. I do not blame you for the percs. I get sooo nauseous with them. 

I am glad that you are home and I hope that things start to get better.


----------



## dreamintwilight

Yipes...waves of pain and feeling like your in labor. That's exactly how I described it. It's good you are staying on a mostly liquid diet though. I tried that but I think it was oto late at that point. Are you feeling super nauseous too? I was and then the second I threw up I knew we had to go to the hospital. It was funny too because as we were sitting in the waiting room my pain eased up and was bearable. I was thinking "I hope these people don't think I'm faking it." I was taken back right away though. If you do go in, make sure you emphasize that you just had surgery and your docs think you have an obstruction. Usually they won't make you wait.

I hope the biopsy results come back. Maybe the docs, given your situation, put a rush on the results. That would be nice, so you don't have to prolong the suffering any more than you have to!

I love the laughing dog icon.


----------



## Keona

The nausea comes in waves as well but not to the point where I'm going to throw up.  I get a really full feeling even after drinking liquids.  It's a burning feeling even up near my sternum.  I am going to definitely call my GI if it doesn't improve by Monday.  I am glad I am only drinking liquids. My dietician also thought it was a "mechanical" problem.  I tend to always get really constipated and then have difficulty passing initially and then I have D until I am empty and then the pattern starts all over again with the constipation for awhile... then hurts to pass and then D..... I notice a big relief once the D starts... sounds weird but I would rather be going lots than none at all...   I honestly don't know why they don't do anything more.  I think it all comes down to my GI not wanting me to take steroids just in case it is something else.  I think all of the arrows are pointing to Crohn's though... it obviously wasn't the endometriosis causing all of this.. but I have only just found that out (definitely)....


----------



## Dexky

I just hope you get a definitive answer one way or the other so you can get on with your life!!!....which is so well lived even with the pain, I can't wait to see the output w/o it!!!


----------



## Keona

Thanks Dex.. Im calling tomorrow to get this ball rolling again.. I think I have been more than patient long enough...


----------



## DustyKat

More than long enough mate, you deserve a medal! Good luck with the call tomorrow, keeping my fingers and toes crossed that the ball gets bouncing along!!! 

Much love, :wub:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Good Morning ! (or at least it is morning where I live  )

I hope you're awake and making that phone call and demanding the answers you so deserve !

Best of luck and hope you are feeling well !


----------



## Keona

Thanks  for the friendly reminder Tracy!
I started with my OBGYN this morning to book the post-op appointment and to see if my biopsies are back and if so; do I contact my GI for the results or them.  The receptionist is going to get the nurse to call me back with the answers.  Im not too concerned with the OBGYN bit as I always knew in my head that I had endometriosis and it has now been confirmed.  Just want to know the GI piece.  
I'll let you now when they call back.  I almost think it might be easier dealing with the OBGYN first.. than the GI.


----------



## PnaG

Good Morning, my thoughts and prayers are with you today as I look over this thread and think what an incredibly strong person you are.  This is my very first post and I can not tell you in words what I feel about the people who are part of this community.  I feel like a lost soul in a sea of unknowns.

I wish you a lifetime of love, happiness and wellness.
thank you for ur inspiration, you may not know how much you inspire others.

as i was reading about ur surgery being cancelled at the last moments, i had 2 thoughts.
A) it was God's ( or an angels ) hand telling it was not your time to be in that O R. dont know why, but im not one to question something like that, and B) is that like being bumped from an Airline Flight ?? ( lol ) at least there you have the chance to get a free flight, any chance they offered you a discount on that following Monday ?? lol, just a giggle for the morning. I find if I dont make myself laugh at least once a day, I go crazy with thoughts of sorrow.


----------



## Keona

Good Morning PnaG
I know what you mean about having to laugh or else you would just cry all the time.  If you think my story is inspiring (and thank-you for the compliment) wait until you read others stories... there are people on here who have had it way worse than I have and not to sound like it is at their expense, but it makes me grateful ... and truly inspired....  I am glad you found the forum!  

I live in Canada so I dont have to pay for medical care (with cash anyway).. living in Canada, it takes forever to get an appointment or a test done.  I did however get a free parking pass (that we never used) and a gingerale (that I refused as my way of protesting...lol...{and WAS very thirsty from fasting all night..so who won on that one?!?})  ..it is funny you use the flight analogy as I made a joke about accepting air miles (when I was on anesthetic) .. not so sure how funny that is in hindsight though

Anyhow... hope you found the "My story" section so that people can get to know you and offer support.  It is truly a great forum - the members here can really keep you going when you have difficulty doing so..and it is a great place to share accomplishments!.  WELCOME


----------



## PnaG

Thnx hun. i went and posted My Story lol. as if peeps wanna hear my story LOL i still believe ur my inspiration.

i think i knew that canadians dont "pay" for medical treatments. seems the world is about $$ and because of that , compassion and empathy seems to have left the doctors offices LOL


----------



## Keona

people DO want to hear your story - going there now to read it...
i agree...a lot of the doctors are all about the mighty dollar


----------



## ameslouise

How ya doing, Wendy?   Feeling better these days?

Thinking of you and hope you are doing alright.

xo - Ames


----------



## Keona

Hi Amy!
Thanks for thinking of me.  Things are going well as far as the incisions..they're pretty well healed and every now and then I get a tearing sensation depending on how I move but otherwise, everything is going well.
I finally had a bowel movement and am at my whits end because Im not sure what to do.  I had a very large bowel movement in which I seriously had to brace myself and thought I was going to black out passing it.  It was very dark in colour for the first part and then was lighter the second part and consisted of a lot of pebbles so-to-speak.  Im not surprised by the blood I saw - which wasn't a lot but right afterwards, there was another bowel movement that again was stringy and long...also blood streaked.  Im not really concerned with blood as I have a feeling I might have internal haemorrhoids or a fissure or something.. I am concerned by the size and the pain passing it.  I am still on a liquid diet and I cheated once with one of those fibre bars.  I did this because I had some relief on the liquid diet, I wanted to see if it was all in my head..

I am not sure what to feel anymore other than sheer frustration... and confusion... if I have a blockage, how come such a large stool got through... also if I do have an obstruction...what are the doctors waiting for (medication wise)???  I am scared that passing such large stools is going to cause other issues.. or even being on a liquid diet will...or waiting ...

if anyone has any suggestions, advice or information about this PLEASE let me know.  Is there something I can be doing differently at home that I'm not already doing?  I did put a call through to all my doctors on Friday to get results of the biopsies.. I didn't get a call back except for the reception of my OBGYN with my next appointment in a few weeks.
Thanks in advance
Wendy

P.S:  I am strongly considering quitting the dilaudid and going back to eating regular healthy diet ... if it sends me to the hospital and maybe then I will get some help.  I really dont know what to do...


----------



## Dexky

Hey Wendy, I've read on here a few times that the pain meds can cause constipation.  Are you drinking plenty of water?

Hope I'm not over simplifying by asking...


----------



## DustyKat

This is your first bowel movement since surgery???

When is your CT Scan? 

Are you still taking psyllium husk? 

Sorry about all the questions Wendy!

It is a concern that you are quite a lot of laxatives that don't appear to be working very well at all. Some of that may be due to the pain management medication and psyllium husks. If they are talking about partial bowel obstruction and you didn't have a bowel movement for ? 11 or 12 days I'm surprised you didn't actually pass out! It can be a vicious cycle with medication but that is something that can be managed. It is not working for you and therefore it can't be allowed to continue like this, I would be contacting the GI. 

Thinking of you hun, :hug:
Dusty. xxxxxxxx


----------



## ameslouise

I would also guess that the dilaudid is causing constipation and the big poo you passed. All of the blood cannot be good!  If you do have an internal hemmy or fissure you probably want to soften things up with a stool softener in addition to the psyllium husk and flax seed stuff.

Def call your GI on Monday and report what's going on.

Hang in there, Wendy. I hope things get better and start moving thru a little easier without so much strain.

xo - Ames


----------



## dreamintwilight

Ok, first....long amounts of poo are not necessarily a bad thing. I typically pass a long amount of stool when I do go (which is once a day typically). I've looked it up before, and long stool does not indicate anything negative, under normal circumstances. I had long stool all the way up until I ended up in the hospital due to my abscess. And when I was in the hospital they found out my intestines were severely narrow due to all the inflammation. That wasn't surprising since I obviously wasn't being treated for anything. And my stools were normal all the way up until I ended up in the hospital, which is why I didn't know anything digestive was wrong with me.

Now, when I had the partial obstruction, I knew there was something wrong because I wasn't passing anything. I had maybe one or two very small bits passed, but I could feel the full sensation and wasn't even able to pass any gas. It was a terrible feeling with extreme gurgly pain.

The pebble look to your stool definitely means you aren't getting enough water. Now...I don't know what your typical bowel habit are like, but since you described having very long stool, the part that was pebbly could have been from several days ago. Especially if you haven't had a proper bowel movement since surgery...could have been for a long while.

The long stool could just mean that the stool has just taken more time to get through your intestines. With no fiber to help it through, it could be why it took so long to pass and difficult to get out.

I have heard that some medications can constipate, so you may want to call the doc and double check with them about it. I agree with others about that. How much are you drinking a day? Just enough during meals? I know it sounds like a lot, but you should be drinking constantly.

BTW...the first listed side effect when I searched about Dilaudid was constipation. So, you may want to call up the doc and see if it's okay to stop it altogether.


----------



## Keona

HEy everyone
thanks for your replies.  When I saw my dietician she asked how much water I was drinking and I told her and she was concerned I was drinking too much water (I am losing weight) and she thought the amount of water I was drinking was causing me to lose my appetite.  Yes, dialudid does cause constipation but I was having these issues long before I started taking the dilaudid.  Remember the 19  day stent I had??  that was before the dilaudid.
Yes, it was my first bowel movement since surgery.
@ Dusty I dont know when my CT is.  I did call on Thursday and left a message.  Monday is a holiday here as well so I have to wait until Tuesday.
Currently I am drinking smoothies..thats about it.  It has lots of fruit in it...typically bananas, mango, blueberries flax seed, sometimes milk with carnation anytime..sometimes juice..and LOTS of ice with both; milk ones and juice ones.  So, on top of all the water..all I am really doing is drinking.  I was told to stop the psyllium husks until I see her next at my last appointment.
@ Marisa...lol...you say long amounts of poo aren't necessarily a bad thing yet your 2 examples describe you ending up in hospital both times after... hmm.. 

Before last night.. I wasn't passing anything either.  And I was having the noises like you describe but lower down from my belly button area...In fact, some of the noises, I didn't know where it was coming from.
You know, I would say I give up but Im not even sure what that looks like anymore...and mentally I can say that but my body is still going to keep doing what it is doing...  I was given the lactulose with the dilaudid...which I have been taking and the stool softener(S) I have been taking for a long time - long before the dilaudid.  
So..if I stop taking dilaudid then Im not sure what I am supposed to do with pain... all pain meds cause constipation....
I'll call my GI..again... but Im not really sure how much that will help considering it hasn't helped that last x-amount of times I have called...


----------



## Terriernut

Hi Wendy!  I'd say congrats on getting all that out of you.  Although painful, I do hope it brings you some relief in some way.  

(I must say, this is an interesting forum...certainly nothing is sacred here, and wow am I grateful for that! :shifty-t

Because you aren't being treated for Crohns or UC yet, no doubt you ARE at the end of your rope!  But soon, I hope REALLY SOON you will get that CT scan and hopefully some medication to help!  I hope that after that this will not be your facebook page photo: oo:

I will say my neighbour, bless his white cotton socks, didnt go for 14 days after surgery.  He said he almost died when he did. (he has crohns too) He said it was horrendous.  I can only hope you didnt scream as loudly as he did, but frankly I wouldnt blame you if you did! (he was also still on almost all liquids, he too had blood, quite a bit)  I just hope you get some help and relief soon.  Meanwhile, belly rub that baby dog of yours, and keep harassing for that CT scan.  You need some help...NOW!

:rosette2:
Misty


----------



## dreamintwilight

Sorry, Wendy. I think I was unclear in my explanation about my typical stools. I've always had long stools. Before and after being diagnosed...and even now. So, long stools are not necessarily indicative of bowels not working properly, is what I was trying to convey. 

Yes, I do remember you going that long period without having gone. This is why this all confuses me if you do have a partial obstruction. WHY AREN'T THE DOCS DOING ANYTHING ABOUT IT??? Making you wait to get a CT, prolonging the time you are on pain meds that could be constipating you, NOT putting you on steroids to help with inflammation in the mean time. I DON'T GET IT!!

Yeah...you shouldn't be on pain meds if they are constipating you or exacerbating your symptoms. The answer is for your docs to get on the ball and find out the cause of your pain so they can get you off the pain meds!! Sheesh. I just really don't understand a doc's line of thought with "I think you probably have a partial obstruction" and then not immediately schedule you for imaging to confirm and get you started on proper treatment.

I have heard that dairy products can cause constipation. I don't know if you've tried eliminating that from your diet (which again is easier said than done when you're on a liquid diet and aren't really eating anything!).

Also, have you read up on potential side effects of flax seed? If not, webmd had some good stuff to ponder over.

http://www.webmd.com/vitamins-suppl...ngredientId=991&activeIngredientName=FLAXSEED

I know you said you are drinking plenty of water, but given the possibility of a partial obstruction and you're still having difficulty passing stools, maybe it wouldn't hurt to stop taking and see if that improves anything. Though I'm not sure if your nutritionist suggested taking the flax seed or not.


Anyway...not trying to boss you around. So, I hope I don't sound like I'm telling you what to do. Just trying to maybe throw some things out there that maybe you might not have thought of yet. I know you've been through a lot and you are a very intelligent person, so I wouldn't be surprised if you've read about all of this stuff already. 

Just trying to help from my side of the computer.  But maybe you weren't asking for help. Just support, which in that case I will shut my mouth from now on, haha.


----------



## DustyKat

The problem I see here Wendy is, you should be able to have a more than decent pain management regime and still not be constipated. The doc obviously felt that the amount of laxatives you are taking were sufficient to avoid the problem of constipation but it isn't and that is something they need to deal with. 

Laxatives come with their own set of side effects and does constipation and these two things are, in my mind, further clouding the issues you already have.  

My heart goes out to you Wendy and I don't know what to advise other than getting in contact with the GI. I wish I knew your health system better so I could perhaps suggest a way to circumvent all this crap you are dealing with. I guess the only thing I can say is if constipation is building again go to the hospital and lay it on thick with the abdo pain, recent surgery and inability to open your bowels.

Loads of love and hugs mate, :hug:
Dusty. xxxxxxxx


----------



## Keona

When I went to the Dietician she was the one who told me to take the flaxseed - ground flaxseed..not whole.  She told me to go slowly.  I have used it twice since I have seen her.  I also stopped taking the flax-seed capsules the day of my pre-op appointment (March 29th).  The anesthetist told me to...said I should only take the dilaudid and pantoprazole the day of surgery so I just stopped all but those two and haven't started up the others since.  I took the ginger gravol only when I have been nauseous (maybe 4 or 5 since surgery) and have taken the tylenol when I get rebound from taking it every 4 hours with the dilaudid...so..only when I have to.  I will change my signature.  The dietician told me to stop taking the cod-liver oil as well because you can get too much vitamin K. 

I think the problem is I have too many doctors and they aren't communicating.   It was 2 interns and the dietician that said it was a partial obstruction.. "mechanical issue"...  (in one appointment my GP was watching via video) and the other they left the room to consult with her.  The 19 days was just before I got the results about having 2 strictures.

I dont know why they're not doing anything..  I dont have an answer for this.
I questioned the GP's  prescriptions when I heard Im not supposed to be on omeprazole for 3 years ... which I was... AND without calcium supplements

The GI told me they (radiologists) would not do the CT until 2 weeks after the surgery.  Im not sure if he knew the surgery was bumped or not..  but it has been just a little over 2 weeks.  I haven't heard anything so that is (partly) why I called.  (I was also wondering why they need to use an NG tube for the contrast when all the literature I have read, it explains how people can drink it now.  If you know the difference, that would be helpful also.) 

Dusty Im hesitant to go to ER as the last time I went all they did was a roll-up bedside ultrasound and chest x-rays (I still don't know why) and  abdominal x-rays.  They asked me if I wanted pain meds.., told me I needed a more nuanced ultrasound and to follow-up with my GP the next working day...and sent me home.

Misty - nope I didn't scream but I could see why your neighbour did.  I think I did a lot of swearing though...

I dont cry in front of people but sometimes I wonder is that what they are waiting for??  For me to go in and start crying in front of them??


----------



## Terriernut

Maybe you should go to your GI's office and stand yourself at the front desk until you have a CT scan appt?  I dont cry in front of others either Wendy.  I wait til everyone is asleep.

They seem just disorganized as hell.  Perhaps they need a shove in the right direction?  YOU GO GIRL!!!  Dont let them ignore you.  Whether by glaring or bambi eyes....get your CT scan!

Misty


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## Keona

Im not sure if Doctors offices are open tomorrow or not. Easter Monday??  I know some places are open some not.  He works out of the hospital so maybe... Regardless, I will call.

I know constipation is not a life threatening condition however I am getting really really tired of this dragging on.  I have missed every holiday for 2 years now.  At least one of the interns who gave me the dilaudid and recognized my pain also recognized that there is poor communication between my GI and GP's office (and me).  I LOVE to exercise..run...hike, etc... I haven't done any of that for 3 years now... 3 YEARS!!!
I am single... I havent gone on a date in ... umm... I dont know how long and guys have asked me out (one in particular) however, I am waiting to feel better...  and i never do.


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## Terriernut

Tell them that!  You deserve a life.  Period.  

If you dont do it for you, do it for your dog!  Methinks running and walking are things she misses too!

Misty


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## DustyKat

> I know constipation is not a life threatening condition


Under normal circumstances it isn't Wendy but we aren't talking normal circumstances. If you do indeed have a partial blockage then constipation can become life threatening...perforation. This is the aspect of your problem that really concerns me and something that the docs really need to get on top of. I know you are trying and doing your very best to get this sorted and I hope more than anything they sit up and take notice now! 

Thinking of you mate, :hug:
Dusty. xxxxxxxx


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## Welsh-bird

Hi Wendy- just catching up here!
Hope you can get this problem sorted pronto. Hang on in there, easier said than done sometimes I know!!
Hugs, And xx


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## Astra

Hiya Wendy
I'm just catching up too luv
I'm shocked and apalled at the way these toe rags are treating you!
Tomorrow, go to the GP and don't cry, but SCREAM the bloody place down, they are letting you down with no follow up.
My thinking is, if you don't badger them, they think everything's ok, and it's not!
I'm with Dusty on this, whilst not life threatening, constipation can be serious, can/may lead to perforation etc.
And I know you're trying your best too!
Give em hell Wendy, Insist & Persist.
Take care my friend
xxxx


----------



## Keona

I called to get a GP appointment today - there is nothing until Friday.  They want me to call back before 8:30 am tomorrow to make an "open appointment" - there were no doctors there but yet the office was open??  WTF???  I hadnt even given them my name....
I called the OBGYN for the results of the biopsies and it was an answering machine.... 3rd message I have left.

I called the GI to ask for the results of the OBGYN - they told me I had to call my OBGYN.  I asked about the CT - they told me my last MRI came back normal and there is to be no further follow-up (radiologist).  I got angry at this point and said that he wanted the CT BEFORE the last MRI because it wasn't getting good images and he told me to go ahead and have it done anyway since I was scheduled.  I also sad "know what I did this entire week-end?...nothing.  Know what I ate this week-end?...liquids and I am STILL in pain.  She said "oh well that was probably due to your surgery"...I told her I had surgery over 2 weeks ago... (she kept calling it a "laparotomy" and I kept correcting her it was only a LAPOROSCSOPY!!!)  and it is healed and the same pain is in the same spots as before.  I told her I asked the OBGYN if endometriosis causes strictures and thickening of the bowel walls and she said no - that is Crohn's disease.  I could then hear her shuffle some papers and read verbatim something about "if that doesn't prove to be helpful then schedule the CT enterography".   Im not sure what "THAT" refers to... but nothing is helpful and THEY ARE NOT HEARING ME....  she said "well, we will have to see what Dr. M has to say about this then.  That was it... Im not sure if Im doing something wrong here or if it is because I am basically doing this on my own or what...  I dont understand how we get from talking about a resection in the last appointment to "no further follow-up" over the phone with the receptionist.
This is all fuc*ed  if you ask me....

to top it all off.... I had to send regrets in an email for not attending a meeting today (I haven't attended one since January).  I felt bad and told the person why ... she is a lawyer..(not that that makes any difference) but her response was, "Thanks Wendy.  Hope you feel better soon!  And it does get better (Chrons runs in my family- I control mine with diet and vitamins.  The meds didn’t work for me). "   I'm not sure why this pissed me off further but I am now even more pissed off....

Makes me wonder how long now I have to wait for the GI to call and how long it is going to take to get the CT.  Have you ever been so angry it makes you want to cry???  I seriously don't know what to do anymore...nobody is communicating with anyone and I seem to be doing all the leg work here... THATS THEIR JOB!!!


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## Keona

update:  Since this... I have gone from crying out of sheer frustration to looking up at my laptop and reading this posted on FB by a member here:
"PLEASE put this on your status if you know someone who has been eaten by dragons. Dragons are nearly unstoppable, and in case you didn't know, they can breathe fire. 93% of people won't copy and paste this, because they have already been eaten by dragons. 6% of people are sitting in the shower, armed with fire extinguishers. The remaining 1% are awesome, and will re-post this."

to laughing.....  

I dont even know anymore.....


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## Terriernut

So THATS what's happened to your Drs!

:wink:
Misty


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## Keona

is it because Canada has the largest amount of people with IBD (and shortage of GI's) that they are sooo unorganized and S_L_O_W ..or do I just have really crappy doctors?


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## Terriernut

I know you are tired and weak, but can you go directly to the GI's office and sort them out?  

:devil:
Misty


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## Keona

I called the advocate and they are sending an email to see their doctor.  She is a family doctor but she works right out of their office or will go to you - which Dr's don't do here anymore...  I cant even get in to see my GP...I see her interns who tell me conflicting info like drink milk/instant carnation anytime and take percocets and dilaudid... (Im sorry Marisa if I seemed bitchy in my response)  I am just so tired of being pulled in so many different directions and the person with the power (the GI) isn't doing anything.  He has the power to order the CT and if it's Crohn's then do something... if not..send me in the right direction... I have been on liquids for 2 weeks .. milk based smoothies and taking dialudid and on top of it all taking loads of laxitives..I am going to get the new GP to see if she can order the CT scan.,.. the GI works out of the hospital


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## Astra

Aw Wendy

This is so bloody frustrating, I'm doing a Rumplestiltskin here!
Do ya know what I'd do?
I'd go and wait around all day, stalk them, then fly at them and DEMAND that someone listens to me (at the risk of being arrested or sectioned)
My worst nightmare? Friggin receptionists!
I can't stand them, when did they qualify to be a doctor, hey?
Don't know about a laparotomy, the woman could do with a bleedin lobotomy, stupid bitch!
Go and kick F*@k out of the door or summit Wendy!
And keep swimming, you're doing just great!
xxx


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## Welsh-bird

Hi Wendy, I am so sorry that you are still having to put up with this c**p! It's so wrong and damn unfair. I agree that your GI either needs to help or point you in the right direction to allow someone else to help..
Hang in there, easier said than done I know.
Thinking of you and sending a big virtual hug xx


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## Terriernut

Wendy....I'm with Joan on that one! (isnt she great!)

Go get em....or have the advocate go get em!!

Work on that rrrrrrrrrrrraaaaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrrr!!!!!!!

Misty


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## dreamintwilight

It's okay, Wendy.  I understand you are dealing with A LOT. And I know how frustrating it can be when you are doing everything you possibly can and then someone thinks they have the magic answers to your problems. So, I'm the one who is sorry . You're just trying to follow doctor's orders (when they actually give you some!). I didn't mean to over step my bounds!

Wish I could be there to yell at all your doctors for you. I'm doing it already from this side, haha, but it's not doing any good. 

What does the advocate say about the back and forth with scheduling the CT scan?


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## Keona

I just received a call from my OBGYN's office.  She did not take any biopsies for my GI because she dod not receive anything from him asking her to.


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## Terriernut

Wendy....FFS!!!!  :ywow:

Are the Dr's there actually the 3 stooges in disquise?

Misty


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## Welsh-bird

What a balls up!! So sorry Wendy x


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## Keona

I havent been sleeping and she woke me out of sleep.  When she told me who she was she said there were no results to give that I need to speak directly to my OBGYN on my post op appointment.  I asked her "wait.. didnt she take biopsies?  My GI thinks I have Crohn's" and she said no that there was nothing from him.  All I kept saying was What??  She seemed a little short trying to get me off the phone or maybe I was just really out of it..I dont know.. I heard him say that he was going to ask her to take biopsies for him.  I had an advocate there with me when he said that.
She just kept saying I need to speak directly with my OBGYN..when is my post op appointment.. 
it is on the 11th of May.

I need new doctors...


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## Welsh-bird

Wendy- I'll send Joan over pronto to get this sorted for you!!
This is so bloody wrong...and I agree that you need some new doctors!! xx


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## dreamintwilight

Holy moly...what the heck is going on with your GI?? What is he getting paid for, seriously? Doesn't sound like he's done anything helpful lately AT ALL. I'm glad your advocate was there, at least, to hear what your GI said. In case you have a hard time convincing a GP to refer you to another GI, hopefully having your advocate as proof that your GI is dropping the ball will help!

I'm really sorry. I seriously never have heard a group of doctors have more communication problems than you have had to deal with. It's unbelievable! I can barely keep up with all these blunders!


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## tiloah

I want to scream in frustration so I can't imagine how you must be feeling about this. We have a hard enough time just being as sick as we are, let alone having to constantly wrangle these crazy, incompetent docs who don't know how to communicate. I think it is so insane that this happened to you, there are really no words!

That is really just unbelievable.


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## Keona

I just fired my GP and the advocates put in a referral for their GP.  It is a temporary thing until I can get a new one.

I also called the GI's and the reception was not happy with me and told me very sternly that the GI does not request anything from the surgeon.  The surgeon does what the surgeon wants and sends the info to them.  Well, this is not what I heard nor what the advocate heard and besides, the GI still did not ask for anything to be sent to him so either way..where is the communication??  The nurse who sat in on the appointment is calling me tomorrow.


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## DustyKat

Man oh man Wendy, when are you going to get a break mate! Ugh! 

What a load of crap about the GI requesting stuff from the surgeon. How the hell are you supposed to have continuity of care if they don't? Oh yeah, that's right you don't! Any bloody doctor can ring another doctor and request information, regardless of their titles. God I hope the change in GP's starts the ball rolling for you hun. Keeping everything crossed!

:goodluck::goodluck::goodluck:

Always in my thoughts buddy, :hug:
Dusty. xxxxxxxx


----------



## Keona

I really do not like confrontation..especially when it is with people of power...and with people who have my health in their hands.  I am doing better now.  Thank-you everyone.  A little anxious about the call tomorrow from the nurse.  What if they tell me to find a new GI??  That could mean another year wait.  I am still waiting for word from my recently fired GP about the last "new referral".  Never heard anything since.  Maybe I would be better off getting a new one...

I am hopeful with the new GP.  I don't know when I can get in to see him/her but they are being referred by people I know and the advocates will catch him/her up to speed for me in terms of care (lack of) so far.  I am looking forward to starting anew...this is a mess.  Who goes from one appointment with a GI & being told about having a resection and SBS to a phone call from a receptionist saying no follow-up care required???  Then back to needing a CT all in one day??

Thank-you for being there everyone.
W.


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## Keona

And Marisa...you dont need to apologize.  You didn't over step boundaries at all... I asked for advice, feedback, suggestions.. I think I was frustrated that what you had pointed out is correct..they told me to drink milk based drinks and take painkillers  and flax seed all the while telling me I have a "mechanical problem.."

I am mostly pissed off that they were inside me and had the chance to take biopsies which could prove to be helpful in diagnosing why I am like this and what...forgot??

The advocate said (there are many, not just one) but they can go to bat for me regarding the lack of care I have been receiving.  The 2 I spoke with, one was very supportive of my feelings and the other was very calm and level headed..factual and walked me through the referral forms on the phone.  I have to sign a release of information tomorrow for them to speak to the new GP.


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## dreamintwilight

I wish there was  way to review doctors because people need to know about how terrible these docs have been treating you. Thank goodness for advocates. If I were in your sheos I surely would have lost my mind long ago.

Really hoping and praying your advocate's GP is the right one for you!


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## Keona

there is: rate your doctor . com.  Only the problem with that is it is very biased b/c people who had good experiences with their doctor wouldn't really take time to write a good report - they are busy living their lives.  I suppose it would be a helpful guide.  I am waiting for the call from the GI nurse tomorrow and see how that goes.  If they say he never said he was going to request biopsies I'm gonna flip.  I had someone with me...she heard him.  

Ya Marisa...thank goodness for advocates....


----------



## Dexky

Geez Wendy!!  I miss one day on here and....wtf!!!!  Screw writing everything down!!  You need to start recording all your conversations with these incompetent bastards!!!  

Good luck today!!  I doubt you have much faith left that you'll get satisfaction but try to hang in there.  Eventually, you are going to land with the right doc!!  Hopefully, soooooon!!!!


----------



## Keona

I just got off the phone with the GI nurse and apparently I have irritable bowel Syndrome.  She said he wants me to take  Donnatal.  I have had t before - it didn't work.


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## Terriernut

Wheres the GI????  Holiday in the Bahamas??  Why no CT scan???
Still think the advocate needs to open a can of whoop ass!

You need a CT scan honey.  You ARE going to get one!

Things will be moving forward for you very shortly.  I know it.  Otherwise I'm paying you a visit by gawd!

:ghug:
Misty


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## Keona

ha..thanks Misty 

Yesterday was a rough day with pain, no sleep, a lot of crying, (lost 6 pounds this week-end) and BS from receptionists and nurses.  I haven't spoken to any of the doctors.  And I couldn't get any appointments with any of them..

If it weren't for the worsening pain and the MRI's showing strictures and thickening of the bowel wall .. I would probably be second guessing things as well.  I have been told for over 15 years that I have IBS.  Maybe I do...maybe I don't but I have tried the drug already, which did nothing.

so now... Im angry.  And there is something empowering about that.  On the phone today I had all of you in my thoughts as I questioned the clinical nurse after every attempt she gave to dismiss it as IBS.  IBS does not account for structural changes in the bowel - and I told her that (much to my surprise).  She was not impressed but neither am I and at the end of the day - it is my health - not hers and she gets to go home and celebrate special occasions and eat turkey and walk her dog if she has one.  I cant at the moment.
The last thing she said was she would go back and talk to the doctor. 

My new GP appointment cant come soon enough and although I dont have any proof of this... I know that it will work out between the new doc and I.  They are aware of these sorts of cases...that is why they are reserved for people without doctors.  And I have great advocates on my side as well...


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## dreamintwilight

Not glad to hear your GI has proven to be worthless yet again, but hey we weren't really surprised by that were we?

I think it's good that you are angry  Sometimes it's required to get people to take you seriously. And I think it's given you a voice that you've been wanting to let loose for a long time!

Your positive attitude, despite what's going on, is encouraging and inspiring. 

Keep going, Wendy!


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## Keona

Thank-you Marisa.  
I have learned that it is much easier to fight for other people than it is ourselves.  I suppose because I am really close to this issue.. 

and you are right.. I did find my voice!

One thing I didn't mention is that the GI nurse told me that when the OBGYN did the surgery she noted she looked at my bowels and said she didn't see any strictures or swelling.  I find this interesting as my very first (and only) appointment with the OBGYN, I had asked her after we decided on the surgery if she would be able to tell if I had Crohn's disease.  I believe I posted that conversation here already in this thread, and she told me,  "no...that was not her area."  The last laporoscopy I had, they said they didn't think I had endometriosis either.   Ten years later of insisting I do, I am unable to have children because of this (but as everyone has proved, doctors can be wrong). 

Anyhow, I came on to ask Marisa if you (or anyone) know if liquid capsules of flax seed cause constipation or just the ground ones?  Is there a difference?  I figure if I have to rely on my own devices for awhile, I ought to try alternative measures of relief.  I stopped the lactulose because I am scared that it will screw up my bowels even more.  I also stopped the dialudid (they wanted me to take it every 4 hours regardless of pain to make a "base-line"....).  I have them and the percocet if needed... but thought I would just ride the pain out more with alternative measures.  Im sure the dilaudid isnt helping the serious lack of energy either.


----------



## ameslouise

I'm with Mark.... miss one day and holy shiite!  I'm so sorry for all this crap you are dealing with, on top of recovering from the surgery.

I don't have much to add that hasn't already been covered, but just wanted to send a hug and let you know I am wishing you good luck.

xo - Ames


----------



## dreamintwilight

Here's a good link about flaxseed oil (liquid capsules qualify for this too, I think).

http://www.webmd.com/vitamins-suppl...dientId=990&activeIngredientName=FLAXSEED OIL

Looks like there could be a chance of loose stools and/or diarrhea if dosage is higher than 30 mg. Also, unlike the whole or powdered form of flaxseed, the liquid/oil form is highly susceptible to oxidation, so make sure you store it in the fridge. You wouldn't want to ingest rancid flaxseed oil. Yuck!

I imagine the whole/ground flaxseed form causes constipation is due to the fiber found in the seed coat. You don't get that if you use the liquid form. You just get the alpha-linolenic acid that helps to thin blood, similar to krill oil supplements.


----------



## Keona

Thanks everyone..

Just an update:  I signed the release of information for the advocates to talk to the doctors so I dont have to repeat everything.  This is usually a temporary solution getting this GP but they told me today that they are going to request that they take me on long-term so I dont have to keep repeating everything over and over.  
As far as the liquid diet, I am concerned with the weight I am losing...as are they, so they are going to get me into their nurse ASAP to see if she can do anything.  Unfortunately, today was the day that she works there but they are going to look in to it.  I am okay with the waiting as I know that at least there are people helping me on my behalf and doing their best.  Not what I experienced with the GI's et al.  I have the option of ER as well but the last time, I was given a roll-up bedside ultrasound, chest and abdominal x-rays and sent home with instructions to follow-up with my GP.  I couldnt get in to see my GP so the frustrating cycle continued.  

So, I am inching along here and do feel confident that someone somewhere will eventually help me..just a matter of when.  "Hopefully" this doctor will be the one.
W.


----------



## AndiGirl

Hi Wendy!  I'm glad to see you up and about on the forum.  You are in my thoughts and prayers, sweetie.


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## Keona

Thank-you Andi   I have been reading your posts, just haven't had much energy to respond to them....yet.... I am also thinking about you and hope things are improving for you.  Still try to picture what it would look like seeing a massive iceberg


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## AndiGirl

No worries.  My CD is going anywhere I'm afraid, so I'll be here a while.  LOL!  You need to rest up and heal.


----------



## DustyKat

Oh man Wendy, after all the crap, setbacks and let downs  this is finally starting to sound positive. I hope more than anything that this is the case hun and this is a turning point for you, god knows you deserve it mate. 

Loads of love, :wub:
Dusty. xxxxxxxx


----------



## dreamintwilight

Sounds like a very promising update!  The ball is rolling and there are people who seem to be genuinely concerned for your health, which is good!

Yay!


----------



## Aura

Hey Wendy

Far out - what an emotional circus you have been through.  Time to bring on the op and get you some answers.:goodluck:

Wouldn't it be good if we could get all the 'ologists that we have in the same room at the same time so they can hear what each other has to say and to realise the impact of the differing treatments they suggest.

I would so love to have my gyno, gastro, uro, neuro, ent, and gp all in the same room.  I wonder how they would go at changing a light bulb?

I am thinking of you Wendy.  A few of us have endo and crohns - it's possible and its manageable at times - take care hun.  Be comfortable - I love watching movies, reading books and being snuggled up in a comfy duvet.  Do what works for you, and makes you feel good.

:hug:


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## Keona

Yes... I think this is a good move.  I am also going to get help with writing a letter and others are willing to write letters on my behalf as well.  I don't know where to send them yet or if the letters will even do anything but it is another option.

I have taken the suggestions..I cut back significantly on the dilaudid, but had to take perc today.  I have also stopped all the milk and the laxatives and flax seed.  Now I have D.  Im still only drinking smoothies but tried some turkey soup I made myself (had defrosted it).  It tasted good and it was good to eat with a spoon but caused a lot of pain.  I am going to try the soup again in a couple of days as I have another bowl frozen (don't like store bought soups).  Maybe the D is all the meds coming out of my system, who knows??   
I want to get back to school and to start working again.  First thing I am going to do is ask the doc to check my magnesium levels.


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## Aura

These are our rights as patients in NZ

You will have the right to:

•always be treated with respect
•not be discriminated against, pressured or taken advantage of
•services that promote dignified and independent lives
•be treated with care and skill and receive correctly administered treatment
•medical staff who listen to you and communicate clearly
•an interpreter if required
•a clear explanation of your medical condition and the types of treatment available
•an honest description of the risks and costs as well as the benefits of proposed treatment
•ask questions and receive competent answers
•make your own decisions
•change your mind if you have already said yes or no to a course of treatment
•refuse to participate in teaching or research
•have a support person present at most times
•register a complaint.


Do you have something similar?  I think the letter is a good start, and they deserve a lot more than a letter


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## Keona

I wish we had health care like that.
I am going to respond to that when I return.

Had a doctors appointment with my clinic today as I went to the other clinic doc and they had to turn me away.  She sent me to the nurse who basically gave me a number I already have to get a new doctor.  So, that didnt work (they were hoping they would see me in the meantime before the new doc).  I ended up going back to my last clinic and once again was sent to someone brand new and an intern on a different team.  I have oral thrush again and it is hurting my throat and I had to ask her to take a swab.  She also asked me  to do an HIV test.  Which I did just so they would stop asking me screening questions.  I also asked for my records and they said I would have to pay for them.  5 cents a page and a fee but she wants me to see the intern I had seen with the dietician for the test results.  She said she didnt think I had it but wanted to make sure.  I think I keep getting oral thrush b/c I am only drinking smoothies and fruit is high sugar.. but who am I, right??
Okay - gotta go.. but am going to respond to Auras post when I get home.  I have to go to an awards ceremony that I dont feel like going to.  (I nominated someone for an award.  I hope this person wins!!!!)
W.


----------



## tiloah

I don't understand what is going on with your treatment at all. I'm sure you feel the same way. Guh!?

I hope your thrush goes away. I have a phobia of fungus so just the thought of thrush terrifies me! 

Keep us posted on what's going on.


----------



## dreamintwilight

Well, yuck. Was the doctor that had to send you away the one your advocate's set up for you?

Usually yogurt ha lactobacillus in it, which should help deter thrush. But, yeah, if you are susceptible to getting it, it could be all the fruit you are eating, plus whatever sugar may be in any of the juice you are adding to the smoothies. What a nightmare!

How did the thrush go away the last time? I remember you tried basically every medication known to man to try and get rid of it. Or did it just basically run its course and go away after a while?

I never understood why patients must pay for their own records. I've seen that a lot here too. For some reason, it seems like you don't have to pay anything if you ask for results as you get labs and procedures done. But, if you request your whole health record at once you have to pay. Too bad there's not a charge if you offer to bring in your own paper for printing!


----------



## logansmom827

Keona,

OMG I can't imagine what you are going through finally ready for your surgery and then having that happen!  I hope by now you've had your surgery and are doing better?  I just got my resection surgery scheduled today for 6/6 via laproscopic incision.  My GYN surgeon will also be there as they too think I have endo and probable on my bowels and maybe my bladder.  I am curious to see how you turned out and how you feel.... hoping for the best!  

Hugs


----------



## Dexky

Sorry Wendy!  It's always up one hill and down another with your hc situation it seems!  I know you're having a hard time staying positive but you've got a lot of good living to do so hang in there.  Some day you're going to fall into the right situation for you so don't stop trying!!


----------



## kiny

Just done reading your story. Just hope it all gets better soon, keep fighting.


----------



## Keona

Thank-you all for your responses.  I am doing okay., actually had a great night because the person I nominated for an award won.  It was a lot of work (I needed to gather 5 letters of support, write a letter of nomination myself and also write a profile of the person.)  This person has done a great deal for the community and has touched many so I was very proud to see her win. Her husband even teared up  

So...ya, I am pretty sure the thrush is back b/c I havent been eating and when I do, it is smoothies with sugar and juice and I also went to a friends place for the week-end and we drank several beers so the alcohol likely has to do with the mouth sores and thrush I think.  The sore throat/sinus's is likely from me chasing her 1 year old around with a kleenex - he had a bad cold.  I dont typically get colds or flus but I do get congested sinuses and sore throats...thats about it.. I rarely get them.  I took some very expensive pills that werent covered Marisa and also took nystatin on top of that and also dex suggested a mouth wash without alcohol.  
I did look up the symptoms of HIV and officially scared the shit out of myself.  The symptoms really do overlap and I can see why they may think that.  Especially with my sore throat/swollen glands, etc.  It is going to be a long 2 weeks.. and I have been scared ever since they took it.  I had the lecture about having to have the health department involved, etc and how if it comes back + I need to tell them who my last partner was.  He did cheat on me so the fear is there but I dont think it is the problem.


Rapid weight loss
Dry cough
Recurring fever or profuse night sweats
Profound and unexplained fatigue
swollen lymph glands in the armpits, groin, or neck
Diarrhea that lasts for more than a week
White spots or unusual blemishes on the tongue, in the mouth, or in the throat
Pneumonia
Red, brown, pink, or purplish blotches on or under the skin or inside the mouth, nose, or eyelids
Memory loss, depression, and other neurological disorders
fever
headache
joint pain
rash
yeast infections that last a long time or occur frequently

I dont have a cough, pneumonia (the chest x-ray would have picked it up), I do have a brown mark by my right eye but that is from the sun (came right after I was in Hawaii for a month and hasnt changed at all)
other symptoms are rashes, gynae problems, pains in stomach... etc..etc... so the list goes on and on.. 
they still haven't explained the thickening of the bowel wall or strictures.  I dont think HIV causes that..lol. (Im not laughing at HIV, I am laughing at the fact that I am not getting anywhere with these people and they are running me around the block, scaring the crap out of me and then telling me to "reduce your stress levels".
In my next appointment on the 18, I will get the results...couldn't get an appointment with my doc but she is supervising interns that day and she did put in her schedule to pop in.  She also put in her schedule that I will be seeking a new doctor. 
I consented to the HIV test just so they can stop asking me the questions about my sex life.  They ask you certain questions as if they think they are being non-challant...as if you dont know what they're getting at.

@logansmom, yes, I had my surgery and it really wasnt that big of an ordeal for me.  It took a few days to move around ok but they prepared me for MUCH worse and it wasnt as bad as they thought.  One hand I am grateful the endo isnt that bad but on the other I was sort of hoping that I could blame everything on endo... not the case.  I only had 2 implants.  The worst part for me was the medication they gave me.  I was on a lot of drugs for pain and once I was able to get of them, I found it a lot easier to move around without nausea etc.  Im not too big on pain pills.
I am glad your doctors will both be there - I asked for that and they said no.  If it were an emergency situation he would have been able to been called though as they were in the same hospital.  Doctors make me shake my head - they seem so counter productive.

Im not giving up Dex.  I am a little low key just because of my throat and sinuses.  I have been taking Buckelys non drowsy capsules for sinuses and congestion but I am far from giving up.
You guys were right about the Dilaudid and milk.  I stopped and now I am back to D.  It is explosive.  At the awards ceremony tonight I was able to hold it in until I got home.  I think about an hour.  I ate a good dinner though   first time eating food in awhile.

I was proud of the way I told the intern how I felt.  I dont think she was very impressed  but did agree that I have been seeing far too many doctors and she made the appointment with my team.  I also told her that I have thought many times about saying f-it and giving up but I cant... its my health and its not like Im going to magically get better if I do that.  I have a lot of things I want to do.  I still think I have IBD and I told her that but she gave me the impression there wasnt anything she could do.  That I would have to wait for the GI doc on June 20th.  Thats when I asked for my records.  All these months waiting; add up to waiting years,  and I am not able to do much in between.  Ive had it in a good way meaning I am starting to push back.  I dont care if I hurt anyones feelings and Im not so concerned with saying something wrong anymore.  

My brother has severe crohns, I smoked for 10 years, I have strictures in the jejunum and thickening of the bowel wall (ilium), endometriosis, gastritis, GERD, hiatus hernia, oral thrush, and the list goes on.  Sounds like IBD to me....  Im not sure why they are having a hard time coming to terms with that.. lol...usually it is the doctors trying to snap the patient out of denial.  I dont get it either diesandhur...are steroids really that dangerous that they wont stop with the testing and theorizing and just let me try them to see what happens?  I need my life back.

Im going to be okay though... I have a lot of good people on my side.  I just need to find the good doctors.


----------



## Dexky

Good to hear that Wendy or read it anyway!


----------



## DustyKat

Hey Wendy,

Just catching up hun, been incommunicado 'cause the modem S*** itself! ugh! That, and Matt has been hogging the dongle. :eek2:

It's so good to know that you people looking out for you..., now if you can just find those bloody doctors to do their bit! 

Keeping for fingers, toes and everything crossed hun!

Sending loads of love and hugs your way...:wub::hug::wub:
Dusty. xxxxxxxx


----------



## Keona

Thank-you Dusty.yes, I do have good support people on my side, no doubt about that.  They are still helping me to find a doctor and they are taking some of the frustration off my back by doing some of the leg work for me.  I think they are getting just as frustrated.  I am going to see if I can get another referral to a different GI at McMaster Hospital.  I know some people on here have gone there so maybe that is an option.  It is the wait that I am wondering about. 
What the heck is dongie???  You're starting to sound like Joan 
How is Matt??


----------



## Dexky

Aw, you know Wendy...doohickey, thingamabob, whatyamacallit!!


----------



## DustyKat

Well, thanks for that Dex! :yrolleyes:

Good luck with the referral Wendy and who knows, with all the waiting around you've already endured maybe it won't be too long! Fingers crossed! 

Dong*l*e Wendy, Dong*l*e! :ylol:

If I describe it well enough you will know what it is...a piece of USB hardware, like a memory stick, that is used for mobile broadband. 

All is fine with Matt, thanks for asking hun. 

Much love, :karl:
Dusty. xxxxxxxx


----------



## Keona

lol..Ohhhhhh..ya, I know what that is.
He's hogging stuff...that's a good sign


----------



## DustyKat

Too right Wendy, hogging is good! :lol:

Dusty.


----------



## dreamintwilight

I wouldn't get too worked up about that list of symptoms for HIV Wendy. A LOT of those things also correspond with IBD and basically having an out-of-whack- immune system.

Have you ever been tested for allergies? A few years before my diagnosis, I started having what you described as constant sinus congestion and sore throats. I wouldn't get sick, but I;d go through a period of about a week where I was constantly blowing my nose from all the congestion and getting terrible sore throats with post-nasal drip.

They would get more prolonged when they came on when I finally got walking pneumonia. I was tested for allergies and found out I was allergic to mold dust, cats (that was no surprise), and mosquitoes (again, no surprise). I started on allergy shots right away and the sinus and throat problems stopped. I haven't had any of those problems since. That was back in 2005 when all that started.

So, could be something to possibly look into if you haven't. I know a lot of people with Crohn's have talked about having allergies. Another thing corresponding to an overly active immune system!


----------



## Keona

I did have an allergy test once where they scratched part of my back and then put some stuff on it but I had taken a gravol that day and learned later that it probably screwed up my test.  I havent had one since.  I have thought about doing it again.  I hope I didnt give the wrong impression but I rarely get sick but if I do, it is usually only a sore throat or sinuses.  I use to run a lot so I attributed it to that.  These moods are crazy.  One moment I am bummed out and then the next I am very hopeful.  I am back to being very hopeful and I know that I ought to put the HIV scare out of my mind.  I dont think I have it but it is one more piece of paper I can put in front of the new doctor to say that I have been nothing but co-operative and patient... now it is time for them to do something.  I dont know why but I do believe I will get the answer soon (and I realize I have been saying that for months)... I dont have anything to back that up so maybe I am a little delusional.. It just works for me to think that way.  If I think otherwise, I get really crabby.


----------



## dreamintwilight

Yup, that sounds like an allergy scratch test to me. When I had mine done, they told me not to take any antihistamines for a couple days prior to the test. I'm not sure how/if Gravol would affect the test, but it could be possible.

I would have described myself as someone who rarely got sick. I didn't even consider my sinus/congestion problems as sicknesses. I never took it seriously until I ended up with walking pneumonia and felt like I was going to die. That's when I finally decided to get treated for my allergies because I didn't want to have to go through that again. I was on 3 different antibiotics at that point to clear it up because it came back again after a couple weeks.

So, I don't know. It couldn't hurt to possibly get it checked out again. How long ago were you tested? I know in Florida the pollen levels are outrageous right now and my mom (who is a nurse at an allergy clinic) says even the people who are treated already are coming in asking for more frequent injections and more medicine because everything is out of whack. If it's anything like that where you are, you could experience a worsening of sinus issues and congestion.

I think the mood fluctuations are normal, considering what you are going through  don't feel bad for constantly being hopeful about things, even when they don't pan out. Sometimes that's the only thing that can get us through it! Better to be positive than crabby 

You are awesome, Wendy! 

:::HUGS:::


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## Dexky

Marisa may be right about the pollen and your sinus/laryngitis issues!  I almost never have any allergy issues but this year is off the charts!!


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## Keona

I thought it may be a cold because the kid I was chasing around (wiping his nose) was also sick.  I have had it for almost a week.  A lot of people here seem to be getting sick starting with sore throat first.  I have some reactine I got free as a sample so I may try that and see what happens.  It says it is for allergies.  I have been using Buckely's cold and sinus gel caps (non-drowsey) but they don't appear to be helping at all.  I still have very little voice and I am supposed to be going to a conference tomorrow (Sun) until the 12th.  I feel sorry for the person sharing the hotel room with me because as soon as I lay down I am hacking and blowing my nose...it gets worse at night. 
I just hope if it is a cold, I dont give it to anyone - it is brutal.  Have had a sore throat for a week now!!


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## ameslouise

Dexky said:


> Marisa may be right about the pollen and your sinus/laryngitis issues!  I almost never have any allergy issues but this year is off the charts!!


Here in Pennsylvania, too. I have been popping Benedryl like tic tacs.  Harrison has post-nasal drip so bad it's giving him stomach aches!

Wendy - can't beleive all the BS you are going thru.  It seems you take a step forward and three steps back. I hope you start to make significant progress soon.  Good luck with your appt on the 18th.

- Ames


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## Keona

Ha Ames... want to hear something else... hope you're sitting..  I have been dating this guy now for a bit and like him and last night he sprung on me that he has three grow-op's..  HAHAHAHAHA.... I know its not funny but it is just my luck!!  One of the first questions I asked him was "do you do drugs"... I have seen the devastation and dont want to get involved and he said no.  Then he said a few weeks later that he smokes pot - which Im not really against but to hear he has 3 grow ops!!!  I started laughing immediately .. maybe I am losing it and going delirious...haha.  I cant get involved as I need to have vulnerable sector checks done and if I have a record, I can lose everything  worked for....  I threw him back...


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## Dexky

Duh, I thought he had to have 3 operations of some sort!  I thought you were going to say something about irony!!  Yeah Wendy, you don't need that shit!!


----------



## Keona

lol.. I told him its not worth risking all of my school/career, etc.  He wasn't happy but oh well.. Im not the best person to be asking to do illegal stuff with.  I think I really took him off guard when I started to laugh hysterically when he told me... 

As far as the sinuses... it is definitely them that is bothering me... I took the Reactine and it seemed to dry them out for a bit but my throat (top of roof of mouth) still hurts.  When I get the new doctor I will look in to it.


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## dreamintwilight

In the meantime, Wendy, you could use a netipot (nasal irrigation pot). The salt water is supposed to lubricate the sinuses and flush out any nasty allergens that are hanging out in your nasal passages. It could give you some relief from the dry sinuses as well as maybe lessen some of the congestion you are experiencing. It may take a while to figure out how to do properly, but it's worth it. You can do it twice a day (once in morning, once before bed) or just before bed (to make sure all the allergens are out before you go to sleep).

That's one of the downfalls with some of these allergy medications out there. They can really dry your sinuses out. Also, if you have a humidifier, it can help keep your nasal passages moist and could help lessen the coughing at night. The reason it worsens at night is because all the congestion in your sinuses is trickling down into your throat and irritating it.

To help with losing your voice....you should really go on vocal rest and do an apple cider rinse gargle. My high school singing teacher recommended this for me when I lost my voice to laryngitis 2 days before a music audition. I didn't talk for the 2 days prior and did an apple cider gargle about every hour for the first day, then every 3-4 hours the next day. I had enough voice back the 3rd say to sing! You may not have enough voice back for the conference, but it could help your symptoms improve more quickly in the meantime.

You've really had a hard time with all this stuff. I always say when something dumb happens to me, it always happens in 3s. It can't be just one thing to go wrong, but several. Waves of bad luck, haha. I hope your luck turns around soon!


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## ameslouise

Oh, Wendy!  Dang, perhaps HIS kind of treatment could help you?  Just kidding!  That just sucks but better to find out earier rather than later I guess.

I am with Marisa on the neti pot suggestion  - love the neti pot! once you get used to using it, it's great!

- Ames


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## Keona

Ha..funny how you mention happening in threes.  My sinuses are still congested and while I was away I slept very little as I was hacking or my sinuses got so congested I couldnt breathe.  There seems to be a lot of people around me with the same thing going on so I am wondering it it is a cold.  I am going to get a net pot as I tried 3 reactine now and none of them worked.  Someone also suggested trying Oregeno oil.  Apparently burns but they got better quick.  I know someone who was using it and stopped and then got it again.  

The good news is when I returned, there was a message from the GI nurse saying she spoke to my GI and he has sent radiology a request to book a CT entercolisis.  
http://en.wikipedia.org/wiki/Enteroclysis

so..looks like they want to put the tube down anyway.  Luckily the answering machine picked it up as I would have not remembered the name.  The link explains my previous question about the difference between enterography and the NG tube.  I dont really care so long as they figure out what is going on.  I dont have a date yet but they will call when they do.  My guess is I will be waiting a couple of months. 

While I was away, I have had some pain but not much and typically after eating.  I am back to eating solids - thanks to you guys.  I am also back to taking a few dilaudids here and there when I have pain or d. 
I have my post op tomorrow and I saw a string coming out of my bellybutton today.  I thought it was a scab (one of the incisions was in my BB)... It has a knot on the end of it and when I tug on it it doesnt cause any pain at all....lol.. freaky though... I was told I didnt have to have any stitches removed - they would disolve.  It looks like thin white string though..lol.. weird,  huh?  I guess she will look at it tomorrow. 
Anyhow.. gotta go to bed.  Sooo tired from little sleep.  GREAT conference though.
Hope everyone is well.
Wendy


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## Dexky

Glad you had a good time Wendy...and no roomie to keep awake!  

How did the post-op go?  What about the string?


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## dreamintwilight

I'm curious to know how your post-op went too and what that string was!!

My last visit to the GI a  couple weeks ago he mentioned that not a lot of places/doctors know how to do the CT enterography because it's still a "newer" procedure. I did not know this! I guess I was lucky both times when I had CT scans they did it this way without having to do it through a tube down the nose!

Either way...I really hope your CT scna gives you more information than what you've been given so far. Keep us posted when that might be!


----------



## Keona

the string is a suture that has not dissolved yet.  She said it will in time so nothing to worry about.
She also agrees that something else must be going on other than endometriosis.  I made the decision to hold off on Lupron as it sounds worse than the actual disease itself.  As far as the biopsies go, she was totally confused by what my GI was talking about.  She said she has no idea where to even take the biopsies from since crohn's is inside the bowel where as endo is outside the bowel.  She said she had not received anything from their office about anything at all.  She also did not communicate with them that my bowels looked "normal" as the GI nurse said.  She said that she was looking for endometriosis and Crohn's is not her area - she wouldn't know what to look for.  She did say that she didn't notice anything with my bowels but she only saw the outside of them.

The CT entercolysis is apparently the gold star test for detecting crohns.  I am still a little confused as to why the tube but at this point Im afraid to ask or argue in case he gets upset again and says I "just have IBS"  At this point I will do anything to figure out what is going on.  I was pretty good in terms of pain while I wasn't eating but now that I am back eating, I am feeling the full feeling in my right pelvic area again.  Uncomfortable for sure.  I am wondering if that feeling is inflammation??  I also have swelling of my hands and legs and feet from time to time.  Not sure what that is about - and my hands are what bother me most.  Doesn't hurt, just tight.

I am going to be re-working my resume this week-end and am also going to apply to get back in to university to finish the last 2 courses for my degrees (Im doing a combined degree).  I am also going to apply for my Masters as well.  Im a little hesitant as Im not sure how my health will affect everything but I cant stand just sitting around.  Work has a huge impact on my self-esteem and since the conference, I have realized how much I need to be doing something.  I am also going to start running again.  I know running was a huge help for me as I have a very stressful career.  I no longer have the same type of release...and I just felt better all around.  Natural endorphins are my favourite 
Im going running tonight and I met someone at the conference who is interested in hiring me.  They seemed flexible in terms of hiring me for relief staff at first to see how my health fits in to all of this.  I would be lucky to have such understanding employers!

Anyhow - there is the update on me.  Things are moving along at a snails pace but moving none-the less.


----------



## Terriernut

That must be one bad ass suture!  Still around? 

As for the lack of communication and mis communication between Dr's and surgeon...I'm for lack of a better term...gobsmacked.

I can only hope things improve with the 'scope' and I've never heard of a 'gold standard' of crohns diagnosis, but hey.  If that's what it takes to get you help...go for it!

On the employer and education front...whoooop!!!  You are doing right IMO by moving forward instead of standing still. It WILL make a difference to you to be progressing in your life rather than waiting.

Hugs to you...and belly scratches to Keona!  She'll be thrilled to be running with you!!!
:rosette2:
Misty


----------



## Keona

Thanks Misty - I have already asked Keona if she wants to go for a run and I got that familiar head tilt and bulging eyes.  I am glad she remembers what that word means   She is so very excited - I think she started without me 

I think the problem lies with the nurses at the office and the reception.  They were really rude to me and seemed disgusted that I dare ask about my results.  They aren't very pleasant on the phone but in person they are the nicest (keep in mind I have an advocate with me in person). As far as OBGYN she told me if I change my mind about treatment, I would need to let her know before a years time - after that I would need a new referral to her and the wait.. She was very helpful in ruling out that the endo wasn't the issue with my pelvic area.  She also doesn't think it has anything to do with my fatigue. 

I agree with you Misty - stagnation is not my thing.


----------



## Terriernut

:ymad: to those receptionists!!

Lower right quadrant pain is classic of crohn's.  You ARE going to get help, and soon.  Darlin...you deserve help.

As for Keona...I'll bet she is helping you to heal.  And if you find you cant run but fast walk to begin with, I'll bet she is just fine with that too.

:hug:
Misty


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## dreamintwilight

Wendy - Sounds like you had a productive appointment with your GI. At least she was able to explain why no biopsies were taken and give you some peace of mind on some of the other gray areas you had involving what could be causing your abdo pain and fatigue. That is encouraging! I hope this CT goes well. I think it's a step in the right direction since up until this point MRIs haven't been able to detect anything.

Also glad to hear you aren't letting things keep you from doing things you want to din in your life! Productivity, as long as it's not too stressful, gives us confidence and a positive self image--both good things to feeling healthier!


----------



## DustyKat

Man oh man Wendy, where does it all end! Now you even have foreign bodies poking out of you! :eek2: 

At least the OBGYN sounds like she knows what she's on about and is willing to give you answers. Godammit mate, some of the staff that in those doctors offices are so far up themselves they are just about turning inside out, aren't they? 

I'd say the contrast they use with that particular scan is administered via a tube because you can't ingest it orally, if you know what I mean. 

As hard as it is I think you are right too to move on with your studies. I honestly think it was the one outstanding thing that got Matt by over the last six months. Matt is at high school and university and although he ended up dropping back to one unit this semester I truly do believe it was the normality of school and uni that kept him going. Good luck hun.

YAY! I'm so happy that you and Keona will be having some fun together...

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Keona

it was the MRI's that detected the strictures and thickening of the bowel wall.  Im not sure what else can cause that so if anyone else has some ideas, please chime in.  I was told that the images arent as clear as they would like so want something more nuanced.  The CT entrocrolysis does detect abcesses, fissures, fistuals, skip lesions, etc..etc... so I am willing to get a blast of radiation for some resolve.  

Misty - my dog makes me laugh when I didnt know I had it in me anymore.  She is a great dog and as long as she is outdoors...she is happy as can be.

Thanks dusty - I think it is a power and control thing the nurses have going on.  

I am looking forward to re-applying (well, not the applying part but being back in school part).  I really enjoy lectures (the papers I can do without) but love the lectures.

Thanks everyone.. when I hear again from the GI or GP front, I will let you know!!

Wendy


----------



## dreamintwilight

Keona said:


> I was told that the images arent as clear as they would like so want something more nuanced.


Right, that's what I was trying to say.  Something good enough to get you a solid diagnosis!


----------



## Dexky

Surely the OBGYN would have seen any appearance of fistulas.  I would think at the very least, you can rule that out!!  I know she wouldn't have been able to see what's going on inside your intestines so I hope this CT gives you the answers you've been looking for,...forever!!

Meanwhile, bully for you!!  Glad you have that determination Wendy!  I've always seen that in you!!


----------



## Astra

And has she ruled out Pelvic Inflammatory Disease?

http://www.nhs.uk/conditions/pelvic-inflammatory-disease/Pages/Introduction.aspx

If you had this they would have to start you on anti biotics.

Keep swimming Wendy, and keep your chin up luv
xxxx


----------



## Keona

Hi Joan,

yes - the blood work would have ruled that out.  I remember them testing for that.  Also, if you google "thickening of the bowel wall" everything that comes up is IBD or something a little more sinister - so considering I think I have a lot of all the symptoms a lot of people on here have, I really do believe that is the problem.  Unless someone can give me another reason as to what causes strictures and thickening of the bowel wall...   When I went on the liquid diet, I really did feel a lot better (apart from the hunger and constipation from the milk).  Once I started eating again, it felt pretty good until just recently... now I have the pain in the right side and fullness and the pain in the left upper where the jejunem is...where the strictures were found.  The pain where the jejunem is is only occasional - the right side, has been every day.


----------



## Crohn's Mom

Hi Wendy 

I've been following this thread and girl I don't know how you do it! 
You're a strong person !
I sincerely hope you get some definite answers soon...you deserve some peace! :rosette2:


----------



## Keona

Thank-you Crohn's Mom..  that is nice of you to say

I do it because I have really great supportive people.  Here and the advocates off-line


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## Welsh-bird

Just catching up here again Wendy. 
Hoping that you get the answers you deserve with the CT scan. I'm so sorry that this is still dragging out for you.
Hang on in there xx


----------



## Keona

Hey Andrea

I got a date today for Aug 16.  Have to be there for 7:45 am.  Then will be taken to fluoroscopy for insertion of a nasel tube and my scan will take place at 9:00.  Says to plan a stay in hospital for approx 2 hours.  Because I am getting sedation for test, have to have someone drive me home...

A radiologist will insert a small tube into my small bowel through my nose or mouth.  A mild sedation can be given to help me with that.  Fluid will be placed into the tube to fill my small bowel once the tube is in the proper place.  I will be taken to CT scan room where more fluid may be needed to be put into bowel through the tube.  A medication called buscopan will be given in the IV to prevent bowel from moving during CT scan.
x-ray dye will be injected through the IV during CT scan when the pictures are taken.  After test, radiologist will remove the tube and I will be monitored for 20 min. You can leave the department with the person that came with you.

Do not eat after midnight.  May have clear fluids (water, AJ, black tea or coffee - NO MILK) if necessary.
You will need to have someone take you home after the test (wow...they really get that across..)

Seems straight forward enough.  
Onward and upward as Dusty would say.

Hope you're doing well Andrea.  When can I get a copy of that amazing thesis of yours?



Wendy


----------



## Terriernut

August 16th????  Erm, long wait innit???

Cant they fit you in sooner if you INSIST???  

Misty


----------



## Keona

a little over a month and 1/2.  I would insist however I think about the people who are needing them and are likely worse off than me.  I am in no hurry to have this procedure done - but knowing it is scheduled makes me think they are listening.  
No donnatal for me...


----------



## Terriernut

3 months.  I dont want you getting worse!!!!

Misty


----------



## Keona

okay - 3 months... I tried.  
been a long day


----------



## Dexky

I guess after all you've been through...what's another 3 months!?

How's Spring coming along up there Wendy?  I hope you stay well enough to enjoy the summer!  I'm looking forward to the pics!


----------



## AndiGirl

I just wanted to drop in and say, "Hello Wendy!"  I hope you are feeling better.  I have Crohn's and one of my sisters has endometriosis.  Our symptoms can be surprisingly similar.  She was told that it wasn't uncommon for surgeons to find endometrial adhesions in the colon. Weird!  Hopefully, your doctor will be able to identify the source of pain soon.


----------



## dreamintwilight

Glad you finally got a date, Wendy  Now you have something to look forward to, I guess?? 

How are you feeling otherwise?


----------



## DustyKat

Hey Wendy,

As long as you have a date hun...it's the start of a plan and something to work towards, something concrete. And yes!......







Much love mate, :Karl:
Dusty. xxxxxxxx


----------



## DustyKat

Hey hun,

How are things in your camp?

Thinkin' about ya! :hug:
Dusty. xxxxxxxx


----------



## Keona

Ha Dusty...lol  thanks for the visual 
Thanks Andi and Marisa....Thanks Dex...the pics are few and far between but at least there are a few 
How am I feeling??
Hmm..not much has changed to be honest.  I am in pain the last 2 days especially with stomach cramps and back pain and upper leg pain.  It is sort of gnawing... very crampy...and really queasy.  I noticed going on a liquid diet did help ..even for about a week after eating again, then it slowly went back to the same. I have thought about doing that again.  

I have a GI appointment on thursday.  Not sure why to be honest considering my test wasn't ordered when it should have been (the appointment was to go over the ct entercolysis that they didn't schedule.).  Not sure if I mentioned that the main advocate I had is leaving... actually has already left.  Her last day was friday.  She got a new job doing something completely different.  I am thinking about going alone but I might be able to get someone else.  I am fairly angry so I am sort of concerned I might say something I will regret...or that they will say something to make me angrier. It helps to have someone there...especially when they say they didnt say something they did.  Doctors suck...  let me rephrase "my" doctors suck....

I still haven't been back to my GP since the HIV test.  I am assuming I don't have it as the health department would have been calling me and so would my doctors office.  I didn't go because it seemed like a waste of time...   sort of never ending.....

oh..i am completely healed from surgery...the belly button string disappeared .. finally


----------



## DustyKat

Thanks for the update mate...:hug:

The liquid diet sounds like it might be a try again, may give you some relief in the lead up to the test, ay.

If it's possible I would take someone, for the very reasons you said. I guess you could utilise the appointment to discuss how are feeling now and ask what they are likely to do for you when the test results do come in, either way. 

Oh yeah, I don't think you'd be left guessing if it was positive! 

Great to hear you have healed and your hanger on has vacated the room! YAY! 

Much love hun, :Karl:
Dusty. xxxxxxxx


----------



## Keona

It is 5 am and havent had sleep.  Havent taken anything for pain yet but very close to.  I have plans today that I really dont want to miss... so I dont want to be in pain nor do I want to be drugged up for it either.  

It is very crampy... both sides... and now across the front.  I have been to the washroom... well, lets just say I have lost count... very watery and there really isnt anything left, I dont think.... 
this is not my period but feels like it.  I know my cycle well and this isnt it.... although Andi is right in how they feel remarkably the same ... it is different though.  

I just downloaded the wellness app for android.  It is also available for iphone.  It is called GI monitor.  just keeps track of your pain, stress levels..how many times you have been to the washroom...yadda yadda....

https://market.android.com/details?id=com.wellapps.gimonitor
(also available for iphone)

going to go take a dilaudid now...

all I ate today was some soup and a few popsicles... maybe the sugar????   Im tired of always trying to guess what is wrong b/c I NEVER know..... 
:ybatty:


----------



## DustyKat

Oh hunney I hope the medication helps with the pain. 

I know what you mean with the guessing all the time, I went through that with Sarah and it's enough to drive ya mad ay? 

Do you take anything regularly for pain? 

Thinking of you sweetie, :hug:
Dusty. xxxxxxxx


----------



## Welsh-bird

Hi Wendy- catching up here again.
I'm so sorry about this shit is continuing for you. I do hope that someone soon gets you the help that you so deserve!
Well Apps- hahah, was my best mate until it told me that I had to start entering data. Just wanted to write f'ing crap day, but it wasn't having it!! lol

Hang in there hun- that pain you're describing is what I've had recently. Feels like period cramp, but they left home in Jan, so no bloody idea!

Thinking of you..sending a big hug xxx


----------



## Keona

I am supposed to be taking a low dose of dilaudid for pain every 4 hours whether I have pain or not.  The interns said it is good to build up a baseline... which made sense and worked until it started to cause other problems such as the chronic constipation....  then I stopped after surgery for awhile and the liquid diet helped.  There is a correlation to food.. I am sure of it,  but I cant figure out what...?????  I was doing pretty good but it started to gradually get worse when I started eating again (took about a week of eating).    The OBGYN said my next period would be very painful (they ALWAYS are!!)  but the two after surgery were again so excruciating that if I could have gotten to the phone I would have called an ambulance.  The last time I took 4 dialudid and then half a perc when it didnt help then I threw up everywhere and then took another 2 dialudid... I eventually passed out basically ... I know it sounds like a lot of pain meds but I threw it up not long after taking the perc and I could taste it so I know it didnt get in my blood stream.  There has to be an end to this.. and a happy one... this is crazy!


----------



## Welsh-bird

Wendy, I'm so sorry that you're having to go through this, and to be in so much pain. Right, you may not like this, but is a trip to the ER an option? Maybe they can put in an IV and get something into you. Passing out in pain is really not good...
Really am worried bout you back here..xxxx


----------



## Dexky

Accch, Wendy!  Can you catch a break?  If you can't find someone to go to the GI with you, I still think you need to record your conversation and write down your concerns beforehand so you don't get flustered.


----------



## dreamintwilight

Man, it's frustrating to read about all that you are still going through. I really can't add much more to what everyone else has already said.

What kind of soup are you eating? For me, I noticed, anything that wasn't made from scratch tended to upset my stomach when I first got out of the hospital. So, my mom made homemade chicken soup that I basically ate the whole time. Or tomato soup was okay, but a bit acidic if I ate too much. 

I hope your GP can do something for you. Yes, please take someone if it's possible. Given your doctor's track record, I don't trust them at all to treat you responsibly without another person. How sad.


----------



## Terriernut

Wendy this is not on.  You poor thing!  Really need to get in the the GI ASAP, you cant keep going on like this.

I wish with all my heart I could make it better for you.
:hug:
Misty


----------



## Astra

Aw Wendy this isn't fair!
Don't think you'll hang on til Thursday by the sounds of it. What if you have an obstruction? Can you go to A&E?
We're all rooting for ya luv, let us know how you are
Take care
xxxxxxxx


----------



## tiloah

Oh you poor dear. I hope things either improve for you soon or they map out a new course for you. You shouldn't be so uncomfortable. Thinking of you.


----------



## Keona

Thanks everyone.  I am feeling better after I took the dilaudid.  I have been not too bad today but night time seems to be worse for some reason.  I am doing alright tonight though.. thanks to dilaudid.  
It really does feel like the intense period pain I get with the endometriosis but the OBGYN said it isnt endo... it is likely Crohns (although Crohns is not her area).  Im okay though.. in no pain right now except for some dull cramping in my back and across my stomach.    When I described the intense pain... passing out ... that was endometriosis... it was during my period but I am really confused as to what is what ?!?!  It has been a few weeks since that experience.  I am going to take everyones suggestions and ask someone to go with me.  I did find a really good link to explain the procedure I am having done so I will post it in the general discussion under ct-enterocolysis.  Im not looking forward to the test but am completely willing to have it done just for answers.  Cant be any worse than I have already experienced anyhow.  

Marisa, ya.... I have been eating processed soup... which I dont really like but it is all I have right now.  I cant have tomatoes cause of the gerd.  I am going to start the liquid diet (oh.. heh... guess I already have..lol)...  I am doing MUCH better!  I am curious to know what the HECK is going on though.... no offense Welsh but it sort of scares me to know you are relating to me..ha... after everything you are going though    If after all this.. if my test (CT) comes back with something such as Crohn's...   I am going to write a complaint.  not sure to whom or what good it will do but I am still flabbergasted that my OBGYN had absolutely no idea that the GI wanted biopsies....and then they tried to tell me that they didnt say that.  I HAD SOMEONE WITH ME!!!!  
Since I started the dilaudid again, I am cautious about the whole constipation situation again.   
I may need to chat with you a bit Joan about the difference in pain with Crohns and endo.... they both feel very much the same to me except with my period... the pain is off the charts... 

.. just to reiterate though.. the dilaudid is working so I am pretty much pain free.
thanks again everyone....


----------



## AndiGirl

I'm glad the dilaudid is working for you.  It's good to hear from you.


----------



## DustyKat

So good the hear the pain med is working, now all we have to do is ward off the constipation...:voodoo:

Thinking of you mate. Much love, :Karl:
Dusty. xxxxxxxx


----------



## Dexky

I'm glad the dilaudid is working too Wendy!  But to me it just reinforces the doctors' negligence!! You can't keep going this way!  I hope the CT Ent. will provide some clear, irrefutable evidence of whatever is causing all this pain!  And then, I hope you receive some targeted treatment that helps instead of just masking the pain!!


----------



## dreamintwilight

Very relieved to hear you aren't in pain right now! Hopefully you can find a happy medium between being pain free and not constipated!

If you want my mom's chicken soup recipe, let me know. It's super easy. Liquid diets are really hard. I always felt hungry.  The protein drinks were the only thing that really helped me not feel like I was completely starving, LOL!

Really hoping and praying this next test will reveal some answers for you so you can start kicking people's butts!


----------



## Terriernut

Glad to hear the pain meds working, but very sorry you need them!  I agree, its Dr's negligence!

I'm really hoping you get some answers, and SOON!!!

Misty


----------



## Astra

Sure Wendy, PM me anytime
My pain with endo was right off the scale and got worse every month, the week before, during ovulation, then menses then one week of relief, then it started again and so on, every bloody month!
When I was blocked last year and in agony, my sis Andrea kept asking what the pain was like, the GP was on the phone asking her ya see!
I said it was like the endo pain pre hysterectomy but tenfold!
The pain radiated round to my back, down my thighs and across my belly as well as the LRQ. This is exactly what the monthly endo pain was like. I used to vomit violently, horrendous diarrhea, then faint! I got addicted to sleeping tablets, I just wanted to die. Seriously, just kill me.
Remember I told you that endos are like barnacles stuck to the bottom of a boat?
Chances are your endos have grown elsewhere, possibly the small bowel, possibly the bladder and spine. That's where mine were.
Does your gastro know about the endos? Lapro would see them, colonoscopy wouldn't.
On a scan they look like chocolate buttons.
They are gluey just like strictures. 
My bet is, you're going thro exactly the same as me, and other than opening you up and doing a clean scrape of them, nothing will get rid of them I'm afraid.
The painkillers will help but the problem remains, and it will every month.
I started a colour coded chart for a few months for my gynae, red when I was bleeding, orange when I was ovulating and green for the week before. All 3 were scaled 10/10 on the pain scale. He said this really helped him.
You can have surgery Wendy to get rid of these and it wouldn't need a hysterectomy, I opted for that, it wasn't neccessary, I asked for it.
Take care
xxx


----------



## Keona

hey Joan,

that was what my surgery was for - to remove the implants.  They thought it would be a lot worse than it was as they only found two and removed them.  The OBGYN said my next period would be alot more painful - it was painful but in hindsight...so were the ones before.  Im not sure if it was more painful or just took over from the last one..where I left off before the surgery pain-wise (if that makes sense).  The pain monthly DOES get worse monthly but since it is so painful to begin with it is difficult to scale it after awhile.  I think once you hit 10 on the pain scale... everything is a 10 or just simply "off the charts".  With endometriosis, luckily for me it is only just during the beginning of my period - so I am in agony for about 24 hours and then the rest of the month it is clear sailing - menstrually speaking.  What I think is crohns feels just the same .. and as you described exactly - pain around the stomach, back, legs, etc.  It isnt AS painful as that 24 hours but that was how it all started out.  Aug really does seem like a long time away now that I think about it.  I will pm you.

Dex - it does feel like the GI doesnt give a rats behind how I am feeling.  I have to ask today for someone to go with me so I will see what comes of that.  Not sure if I can get someone 3 days before my appointment - forgot I had the appointment!

Thanks Marisa - I would like the soup recipe!  I love soup!!


----------



## Keona

so - i was wrong and found the appointment card the day of my appointment.  It isnt until the 20th - and I have someone going with me.

One question... I am pretty much doubled over in pain since about 5:00.  I just took 1/4 of a percocette.  It hurts in certain postiions..like some of the ways I sit, stand and with walking and urinating.   Anyone know what that is about?  no vomiting, no nausea, no fever... just sharp pain at about an 8.  My groin area, hip..pelvic area...


----------



## DustyKat

What are you going to do Wendy??? 

If it was Matt or Sarah I would be taking them to casualty but I know the problems you have had going there. 

Oh mate, I don't know for sure. It just sounds so much like Matt's pain and symptoms with his abscess. 

Since it hurts to pee do you think you may have a urinary tract infection? A UTI can also cause pain where you are describing.

Have you recently been on antibiotics? 

Sending you loads of love and hugs hun...:hug::hug::hug:
Dusty. xxxxxxxx


----------



## Keona

no I haven't needed any antibiotics for a very LONG time.  I ate some rice with some sauce and had a coffee today ..iced tea but thats about it.  Just came on suddenly and my friend thought it was my appendix.  It is the same pain (location) that I have had the last 4 years.   Is 'casualty' = ER?  I keep thinking all they're going to do for me is give me a bag of IV and pain killers and then send me home.  I have pain killers here.  I ran out of the dilaudid but took a 1/4 of a 5mg/325 mg acetaminophen.  Hurts to stand up and sit down .. 

I wondered about the UTI - would the pain be in the same location .. for the last 4 years?  It is the same spot but it changes in intensity...  burns or today a sharp burning


----------



## DustyKat

The pain would be in a similar location to what you have already experienced. I guess you could have chronic cystitis but that would be a long shot I reckon. They would have done a urine test each time you went to the ER wouldn't they?

One thing to bear in mind though Wendy is you may develop something else but be so use to the pain you already have that you don't realise it is happening. God, does that even make sense?? :lol:
What I mean is don't think you may not have a UTI because of your existing symptoms. 

Dusty. xxx


----------



## Keona

i have only walked in to ER once in the last couple of years - for this.  I was admitted a long time ago.  it is a little relieved with the perc but still hurts in sitting.  I have heard of someone thinking they had an appendix issue and it was a UTI.  I dont ever recall having one ... all I know it is the same pain as before only magnified.  

That is the problem with all of this.. i still don't know what it is...... 
The last time I was in ER they took a urine sample.  Same when I had surgery - how long does it take to get a UTI?  does it just hit you??  hmm... i am peeing a lot/urgency


----------



## DustyKat

I know Wendy, when you don't have answers to begin with what the hell do you use as reference! 

The pain you have had all along is as I said very similar to Matt's. I don't think all of his was due to an abscess either but from the inflammation and swelling of the bowel pressing against surrounding structures, including his bladder and ureter. 

The pain on voiding, frequency and urgency is sounding very much like a UTI. Yes, they generally do just hit you. 

Dusty. xxx


----------



## Keona

the way I can describe it is as as someone took a wiry bottle brush to my intestines.. or tubes... whatever they may be..  is the uretha on the left side as well?  It is all on the right side except every now and then I get a sharp pain on the left - few and far between.  Had to laugh at Welshy - my app doesnt really apply at the moment...lol


----------



## DustyKat

You have a ureter on the left and right, they lead from your kidney's to the bladder. You have one urethra, that's what you pee out of. 

Dusty. xxx


----------



## Dexky

Damn it all Wendy!!  Apparently you *can't* catch a break!!  Good grief, I'd say I hope you get solid answers but you've heard that so many times it just sounds stupid at this point!!  I just hope something positive happens for your medical situation soon.  Anything!!!  Just something to build on!!  Enough already!!


----------



## ameslouise

Oh, shit, Wendy I am just catching up on this now and I am so sorry you are going thru all this!!!

When it doubt, do what Dusty says!  Maybe it is a UTI - I have heard of this just sneaking up all of a sudden and people being doubled over out of nowhere.  Any kind of massive pain - I always opt for the ER. Better safe than sorry and if it is a UTI, hopefully they can dx it right away....

Good luck - keep us posted!  xo -Ames


----------



## Keona

i have been good since I took that piece of pill.  Been cleaning actually..heh... guess it worked.  I still feel it but its only just really annoying.   I am going to call the new advocate person.  She has been working on the new doctor situation.  I just haven't been calling back.  I get really tired of the word Crohn's and intestines and flare and you know...all the medical jargon?!?  I use to want to work in ER ICU... not sure I want to anymore...
just has changed the course of my life you know?!?  
which I suppose could be a positive thing.....


----------



## AndiGirl

I just wanted to say, "Hi."  I can relate.  I used to want to be a nurse.  After being a patient and spending time in the hospital, I changed my mind.  I hope you are doing well.


----------



## DustyKat

I understand what you are saying Wendy. 

:hang:  in there buddy. 

Thinking of you hun, :hug:
Dusty. xxxxxxxx


----------



## Keona

Maybe Im a little buzzed.  
note to self: call about getting new doctor tomorrow


----------



## dreamintwilight

Sheesh....more complications!  I'm just catching up on this now too. Sorry to hear there is something else. I'm hoping it's not a UTI or anything else too serious. It could be as Dusty said, where there could be inflammation that is pushing things around and making things more uncomfortable. My pain wasn't as serious as yours sounds, but pre diagnosis and even a few months after I had these weird pulling sensation in my pelvic area. It was like a pulling, sharp pain. It did eventually go away, but I wondered it could have been due to the fact that I had inflammation and it was mashing up all my inner girlie bits. 

I hope it doesn't get any worse!

P.S. How did the soup turn out??


----------



## Keona

HEy Marisa, 

My soup was fantastic!!  Thanks for the recipe!!  I ate it all without any difficulties and even had it with rice.

I just returned from my GI and still frustrated as ever.  They are only now acknowledging that I might be a tad frustrated (by saying "I can understand why you are so frustrated")

they gave me a new med for my reflux and are concerned with the fact that the last one didnt work that well.  This time they gave me a sample box and then if it works to call them and they will call in a script.  It is new and called Dexilant 60 mg. or dexlansoprazole.

They also are going to book the tube down the nose for the day to measure my reflux.  I carry a box around on my waist.  I get to go home with it in/on.

They also booked a colonoscopy - which pissed me off because I asked the last time if I could have one and he said it wouldnt be any use since my issues are in my jejunem and illeum.  He TOLD ME that it wouldnt reach.  Now they want to ??   Anyhow, I have to take the dulcolax and pico-salax. (4 sachets).

they also want me to have a breath test done to measure my bacteria in my stomach.  It is called a breath hydrogen test (for carbohydrate intolerance).  I might have small bacteria overgrowth.  Ummm... you think???   I have only needed about 6 bottles of nystatin and a pill form to fix oral thrush.

They want me to call the CT place to see if they can get me in sooner - on a cancellation list.  So, I will be doing that.

I guess nothing much is new in terms of how they will help me.  An advocate did go with me and she agrees that I need some consistency with even the advocates going because she couldnt say to me today "yes, they did say last time that the colonoscopy wouldnt reach"  She believes me but she wasnt there, it was a different one.

The GI thinks I have more than one thing going on.  That I have a motility issue... 

I dont know...just really frustrated....  my next appointment with him is Aug 2012 (unless the tests find something).


----------



## Keona

here is yet another prime example of why I get so pissed off.  I just called the CT entercolysis department and asked about getting on their cancellation list.  They dont have a cancellation list and she said she is very suprised the doctor asked me to call (the nurse did actually) because in order for them to change the appointment date, the doctor (not the nurse) needs to call and talk to the radiologist (Dr. Rebello).... when I called to tell them that the reception cut me off and said yes we know that ... well then why the *&$^ are you getting me to call and ask to be put on a cancellation list for then?  I find this all to be a lot of BS.. 

...how am I supposed to trust these people?  I have to let these people stick something up my ass after hearing they "forgot" ... the nurse told me that she has been calling to get me in sooner but I dont see how that can be when I was just told that I specifically need to get the GI to ask... this is all just BS...


----------



## dreamintwilight

Glad the soup turned out great!! Yay!

Sheesh....they've got a whole gamut of tests lined up for you. Though, as you said, nothing really new! You've asked for many of these tests and suspected many things they're testing for. I can only say, I hope having concrete results MIGHT get it through their thick skulls that there are things going on with you that must be treated. I'm hoping, evne if your disease is located in the jejunum/ileum, a colonoscopy would be beneficial in seeing if it has spread anywhere else.

I still find it weird that you don't see GIs on a more regular basis where you are. I see mine every 3 months, and that is with a stable condition! I don't know how they expect for you to get continuity of care with such sparse appointments with your GI. No wonder they can never remember anything they've told you!!

Sheesh...really hoping all your tests get scheduled quickly and you get some results out of all of it!


----------



## Terriernut

The tests will find something and you need that CT scan asap!

How are you feeling hun?

:hug:


----------



## Keona

I am feeling a little bit better than when I was earlier but I have broken up the percs and have been taking pieces of them.  I feel the pain in my right side (hip /groin) all the time and sometimes I have pain in my left side.  Back bothers me and my hands still have a rash.  Im okay... I could be better thats for sure but I could also be worse so I dont like to complain in case I jynx myself.  lol.... (im not superstitious either!)  Im more really very frustrated with all the inconsistencies and out right lack of accountability and the amount of time this is taking.  I think I have been more than patient with them and probably THE most cooperative patient ever.... even the MRI nurse kept saying I was a good patient after she had to stick me 6 times to get an IV...   I think it is crazy... and then for the nurse today to say that it could be some type of rare cancer freaked me out... in fact, Im not even taking that seriously b/c they have been so messed up with their info....  

they are still saying it is probably IBS now b/c my blood comes back normal.  My MRI's dont but that doesnt seem to matter.... just makes me really frustrated esp. when they tell me to reduce my stress.... crazy....
i dont know when my appointments are as they have to call and give me the dates so I shall see how much longer I have to wait.  

I know eh Marisa?  over a year for my next appointment.... thats messed up.


----------



## Terriernut

Wow.  You are feeling poorly enough to be seen alot more than you are!  And the crap you have had to go thru is beyond belief.  Do you own your own home, or can you move perhaps closer to better treatment and Dr's?
:ghug:


----------



## Keona

no I rent and I already live in a big city with 4 large hospitals. Unfortunately, it takes a year wait list to get in to see a GI...there are a shortage of GI's here.  I can guarentee though that if they do find something and it is in need of immediate medial atention i.e: surgery... I dont know if I would be comfortable having my doc and nurses preform that on me...lol.... I am only sticking with them b/c I dont have any other option... I cant even find a family doctor that is willing to see new patients.


----------



## Astra

Hiya Wendy

so sorry you're still feeling like this, going round in circles, going no where fast!
You know about Jessica? Acute appendicitis, peritonitis, surgery etc, she's doing ok.
But the surgeon mentioned chronic appendicitis aka grumbling appendicitis.
read about it here
http://www.ehow.com/about_5332905_symptoms-grumbling-appendix.html

he said it may have started out as chronic, mild but niggly symptoms. Then escalated to acute within a week.
Jess' symptoms included weeing a lot and she said it was like pissing glass.
When we got to A&E the first thing they checked for was an UTI, her nitrates were positive, and I told them that she had had 4 water infections in the last year. She was in a wheelchair on the way to an ultra sound scan when she started vomiting green bile. They whisked her back to the bay and booked her for surgery that night with suspected acute appendicitis. Turned out it ruptured and peritonitis had set in.
Wendy, get to A&E and tell them you suspect appendicitis, they will do an emergency CT scan which will show up inflammation in this area. The fact that you've got a water issue is ringing alarm bells with me.
Jessica has had water infections on and off for a year, the surgeon said this is classic appendicitis.
Dusty will be able to tell you this too, if you can get someone to press down on that area and it only hurts when they let go, then it's your appendix. It's the retracting back of the peritoneum that hurts. Also if your lying down and it hurts to stretch your legs out, that's classic appendicitis too.
please take care and get checked out
xxxxxxxxxx


----------



## Keona

Hi Joan,

Yes, I followed about Jessica.. and so glad she is better.  I thought it was funny how she was sitting up eating when you arrived saying hi and feeling better.  I think I felt the relief for you 

I read the link and they said that it wasn't my appendix (my GP) and when I went to ER the last time they said they didn't think it was either and then concentrated on the fact that I have thickening of the bowel wall in the ileum and the 2 strictures of the jejunum.  I do get nautious quite often... just in waves and I cant really connect it to anything,  I thought it was the pain meds but I tried to go awhile without them and still got queasy.  I only throw up (violently I might add)  during my period.  

I asked the nurse today that if they think I have IBS then what is causing the thickening and strictures.   they couldnt answer except for asking if I have had numerous surgeries.  I have had 2 surgical scopes, but that is just little incisions...so..no... that would not cause thickening of the bowel, etc.  They cant explain it.  then he said that he is not sure why it all gets worse with my periods... I just posted a video link in a thread and it explains how periods DO make it worse even if you dont have endometriosis.  I will do some more research and see if I can relate to it and then might go to the walk in clinic.  I intentionally didnt go back to the GP for pain meds so that I could go to ER the next time I have pain.  A little scary not to have the immediate relief but i am at a loss and really do not feel listened to.  I think if a doctor does not know then they have a responsibility to send me to someone else.  this hasnt happened... isnt there diagnostic specialists??  I mean 4 years is a very long time to wonder and go through rigours testing...especially when you have to wait a year in between appointments... that is just insane to me..

thanks Joan.. I am going to look in to it.
Wendy


----------



## Astra

Yes please do Wendy

On her surgical notes it mentioned diverticulitis, inflamed bladder and inflamed bowel loops. I feel a bit paranoid about that! So gonna follow it up with GP for tests.
These symptoms are classic peritonitis, everything in there was inflamed. Not saying you've got that, it's quite serious, surgery is required immediately.
But if you do research the appendix, a lot of your symptoms tally?
Good luck Wendy, hope you get something sorted, and get to the walk in or A&E if you start vomiting, promise me?
xxx


----------



## Keona

I promise   I only vomit during my period ..and projectile...lol... the GI thinks there is more than one thing going on (aside from endo.)  I wish he would stop relying so much on the bloodwork though.  He keeps bringing that up how it comes back normal.  Perhaps...but my MRI's are not.  Also, if I had appendix or a UTI, wouldnt my markers also be up then?

I would be nervous about your daughters intestines as well after what they found.  I hope it doesn't turn into anything.  Are they doing anything for her diverticulitis?


----------



## DustyKat

Oh man Wendy, when the hell is someone going to step up to the plate and commit to something! 

I'm so frustrated for you hun. As you know, anatomical changes do not  occur in the bowel in IBS. I don't know if we just got lucky or what with Matt. Yeah I know his sister has CD but even so there is still a larger chance he may not have had it. His GP said the minute he felt the mass, I think he has CD, the radiologist took one look at the ultrasound, thickening of the terminal, he said...I think he has Crohns, the GI diagnosed him on the spot and on it goes. My point being through all this he has no conclusive evidence of Crohns. I was just reading the surgeons letter from his review last month and it said...has the behaviour of Crohns but not supported by pathology. 

I would hate to think where Matt would be now if the docs danced around the edges and didn't say...the pathology may say otherwise but it is Crohns. 

So many of your symptoms sound like Matt, yes his presented more acutely, but that would only be because he has fistulising disease whereas yours sounds like it is stricturing and therefore has the potential to grumble away for years.  They ruled out a grumbling appendix early on with him too. Also any reproductive issues, as in a torsion of the testes, were ruled out. Your markers may not necessarily be up with a UTI but should be with appendix.

Perhaps I should give you a copy of Sarah's results and you can show them how useful normal bloods and CT scans were in her diagnosis.

It breaks my heart to read about the hoops you are being put through. God I hope you get some solid answers and lasting relief very, very soon Wendy.

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Dexky

Just want you to know, I'm still following your saga W!  And amen to Dusty there^^!  I know you're going to have bad days until someone gives you a solid dx and treatment, I just hope your good days outweigh them!  Good luck!

I really like your Spring pics on FB, btw


----------



## Keona

Thanks Dusty and Dex.  

Wow... seriously Dusty...after all that they dont think Matt has CD?  Do they have another theory as to what he does have?  It certainly sounded like he had CD.  I'd be wanting an answer as well... and to know if that was a one time thing or if there was a possibility of it happening again???  

I have to be careful because after reading all of the threads I have learned how tricky this disease can be.  I can really relate to what everyone is saying so it makes me wonder if this is what I have.  I may not.. but it is definitley something chronic and the fact that I have severe GERD (so it is my entire digestive system) also makes me wonder...and how my brother has it ..and use to smoke for many many years (I actually quit b/c of this).

Anyhow. I have my motility test booked for the 28th.  This is the ph testing where I have to have a tube down my nose for the day, go home and have it monitored on a box.  You are supposed to act as normal as possible doing the normal daily things and eating regularly.  All they told me was no perfume during that 24 hours and continue taking my meds.  I havent heard about the other ones.  The only reason why I got this test so quickly was there was a cancellation.  This is for GERD not testing for crohns but at least I am getting somewhere.  I just wish it were with my stomach.

Thans for listening everyone.  I appreciate it.  
And Dex, thanks   I went camping overnight in a gorgeous cabin - which is where I took the pictures.  It is beautiful up there.  I love camping so I have 3 trips planned for this summer.  I am also applying for 2 jobs.  One is relief work so I can pick and choose which positions I take and the other is full time.  I have someone to take Keona if I work alot.  I just need to start doing something as I am finding it is affecting my mood.  I use to get a lot of my self esteem through my work.... without it, it just disappears.  I am on A LOT of committees to fill my time, and they are all for good causes so I am doing something.  

as Dusty would say...onward and upwards


----------



## Terriernut

Wendy, I am happy you are keeping yourself busy.  I certainly understand that you need to keep yourself occupied to keep your self esteem up.  Giving to others makes a world of difference in feeling better about yourself.

I have been following your lack of progress with a diagnosis, as you know.  I can tell you that even after all Ive been thru, I still only got a 'well, we're 95% sure it crohns, not 100%, because we have to be careful"  I'm 50 years old been sick off and on since 1997!!!  And this I hear after all this time? Oi veh! :ybatty:  This kind of thing isnt unusual as by now you've realized.

For your sake, I want you to at least be treated for your symtoms!  You've been thru enough already! :ymad:

:hug:


----------



## Grumbletum

I've only really caught up with this thread, Wendy, and noticed a lot of similarities in our symptoms and diagnosis ( except that yours is not conclusive yet, and I'm sorry about that :-( )
I had, like you, grumbling appendix ruled out, UTI sometimes tested positive for and treated with antibiotics, sometimes still had all the symptoms but no positive tests. I have thickening in the terminal ileum, 'cobblestoning' and an abscess with a fistula to the bladder. I have mainly pain in the right side, occasionally on the left and lower back and joint pain. Since all this flared up, my urine has been kind of cloudy and fizzy ( bubbly ) even when I tested negative for UTI. Are you getting anything like that at all? This is apparently gas from the bowel going into the bladder.
Hope I haven't scared you too much - it's not my intention. I really think you should push for a CT scan if you can, because the abscess and fistula did not show up in either an ultrasound or a Barium FT - I don't know if they would with a scope?
Take care and I really hope you get some definitive answers very soon :hug:


----------



## DustyKat

Hey Wendy,

The biopsies always come back negative so the pathology always states - no conclusive evidence of Crohns disease. However all the docs he has seen in the last 6 months agree that he does in fact have Crohns disease regardless of what the pathology says. To be honest, when he had the ultrasound and the radiologist said he had thickening of the terminal ileum I knew he had Crohns, I never for a second thought it would or could be anything else. 

I hear you about work hun...:hug:...good luck! 

Yes! Onward and Upward. Thinking of you mate...:wub:
Dusty. xxxxxxxx


----------



## Keona

I forgot to mention that the clinical nurse also told me it was okay for me to take advil during my periods b/c the narcotics were causing constipation.  I dont know what to think anymore... I get a lot of conflicting information.


...and grumbletum.... you havent scared me at all...


----------



## AndiGirl

Hi Wendy!  I'm just checking in with you.  I hate conflicting information.  When I had Shingles a few years ago, my doctor said it was okay for me to take Naproxin.  Oh boy!  That caused my Crohn's to go to all to heck!  I will not touch Naproxin now.  My advice would be to be very careful with pain meds.


----------



## DustyKat

To be honest Wendy I don't think it's worth the risk. If you have anything Crohns like going on it will wreak havoc with your system. 

Dusty. xxx


----------



## Keona

when she asked me what meds I was on I told her I was on dilaudid and now I am only taking percs from time to time (i have left over ones from surgery and have been breaking them up and taking little pieces just to take the edge off).  BUT I told her I am running out and when I get my period I have to take a much much larger dose.  I explained I am not taking the monthly injections (possibly for now) b/c the side effects might be worse than the disease that I have.  I dont have severe endometriosis... I only had two implants.  I told her it didnt seem worth it - my OBGYN supported my decision, FOR NOW, because implants usually come back eventually and deposit somewhere else b/c the underlying problem hasnt and can not be fixed... unless they remove my girlie bits. (which I am not doing just yet either).  I am only in severe pain for 24/48 hours - it doesn't warrant having the injections and it affecting ALL 30/31 days when I can just take something for the pain.

anyhow... just really confused and a little frightened to be honest that my health is in these peoples hands.  She told me she was going to ask the GI if it was okay for me to take the advil (and I was taking a lot with the pain but for about 1 or 2 days only (4 every 4 hours)  she told me it was a lot.  I am not going to take advil and when I do get the pain this month.. I will be going to the hospital with it b/c I dont have any other option.  Unless I go to the doctors first.  I have to be honest.  All of this Crohns stuff really reminds me of when I was telling the doctors I have endometriosis... they kept saying I didnt that it was just painful periods... yadda yadda... now look at me...lol...  it is the same thing.. I had a friend with endometriosis and I asked her about it and thought it sounded an awful lot like what I experienced.... I even bought a few books and was sure I had it.. its the same thing with the other pain.. thinking it is Crohns.  All of my reports are coming back from the radiologist "non-definitive crohns"...yet the GI and nurse say IBS or something more sinister.  I cant believe how long this has dragged on for... 

lol..sorry for the rant...    I think since I can relate to what everyone here is saying more than what the doctors ... I will listen to you guys .. sad isn't it that i cant listen to health care professionals advice???


----------



## Terriernut

Wendy....''non definitive crohn's''....what does that mean?

Yeah, I can see why you are worried about being in their hands the stupid twits.

I'd be doing a Joan.

:ybatty:


----------



## Keona

I think it means..  the MRI's suggests I have crohn's but they are not definite.

<shrugs>


----------



## Terriernut

There is hardly EVER a 100% diagnosis of Crohns.  I genuinely hope that someday you can see another GI!!
:ghug:


----------



## Crohn's Mom

Hi Wendy..
I have been following this thread forever but never quite know what to say.
Just know I am thinking of you and feel so bad for everything you are going through..
Your poor head must be spinning constantly!

I wish you the best of luck!
hugs,
~T~


----------



## Keona

If there wasnt a year long wait I would ask to see another GI (in fact, I did but havent heard anything since.)

lol.. "been following this thread for like forever" .... trust me,...it feels like forever..!!

thanks everyone.  I would have lost it if it werent for this forum.  It seems to be the only thing that keeps me grounded.


----------



## DustyKat

> "non-definitive crohns"


I agree Wendy. To me it means it has the appearance of Crohns. A don't imagine a radiologist would give a diagnosis under these circumstances so they will use terms like that, looks like Crohns but we can't say that it definitely is. 

Always thinking of you hun...:hug:
Dusty. xxxxxxxx


----------



## Keona

I find it interesting when I ask what caused the strictures and thickening of the bowel wall... they cant answer that.   I reminded them that IBS doesnt cause that... they brought up surgeries can cause that but when I question only having 2 scopes... the nurse said not usually.  It is typically big surgeries such as hysterectomies and the like that cause or can cause the adhesions that can cause the above.  They cant give me answers.
Even the breath test they are giving me... it is to see if I have small bacteria overgrowth... which can be caused by numberous things... crohns and IBS included.  Im not sure why they are doing this test.  and my advocate was right ... why are they only now doing these tests???  They have lined up 4 all of a sudden.. 4 years after .....


----------



## DustyKat

Godammit Wendy, have you any hair left, or have you pulled it all out by now? 

Frustrated for ya mate, :hug:
Dusty. xxx


----------



## Astra

Hiya Wendy

just popping in to send a big hug your way!
Unbelievable the stress you're going thro right now
Hope you're ok, keep swimming my friend
xxxxxx


----------



## Dexky

Well, I guess that's about what I expected after a few days away...Wendy getting the run-around from her docs as usual!!!  Grrrrr!!!!


----------



## Keona

well..first thing tomorrow morning I go get a tube inserted in thru my nose into my stomach.  I have had tubes down the nose before and remember they pinned me down as your reaction is to yank it back out again (or mine was).  I remember hating it.... they do try to make it a little easier by putting some lube on the end but it scrapes going down.  I am hoping they can use a smaller (thinner tube).  Then its taped.  

so..anyone have any good jokes I can use b/c I know people are going to start depressing the crap outta me when they see it.  I just want something to lighten the mood... it doesnt look so great so - I will be around a lot of people I know well afterwards so I dont want them to feel uncomfortable    I know I will not need a straw that day..... 

I can eat and everything...its just measuring acid content.  anyone??


----------



## Dexky

How long does it have to stay in??

It wasn't a joke, but Crabby had a sickly amusing experience with one of those tubes...She posted it on here somewhere last year.  I hope that doesn't happen to you or anyone else for that matter.  She vomited with it in and so had the tube running through her nose and back out her mouth!  Like I say, not funny but yeah kind of funny the way she told it!


----------



## Keona

24 hours.  

it is a 24 hour ph test.  I am supposed to do what I would normally do so no going home and laying down ... it would ruin the test b/c gravity, etc.  Have to sleep with it in ... its a nuisance and you can feel it in the way when you swallow.  I am going to go for dinner somewhere tomorrow night and will be staying at the same place I stayed after surgery for the day .. that way i wont have to worry about strangers gawking at me.  I will be working on my resume.  

I will have to search for that story Dex.  sounds kinda gross ...


----------



## dreamintwilight

Aww, good luck, Wendy! Hope they find something out with this test. I've never had to have a tube inserted like that, but can imagine it's not a very comfortable process. Hope the day goes by quickly for you!


----------



## Crohn's Mom

Hope the tube procedure was easy on you today Wendy!
Thinking about you...hang in there hun!


----------



## Terriernut

"so..anyone have any good jokes I can use b/c I know people are going to start depressing the crap outta me when they see it. I just want something to lighten the mood... it doesnt look so great so - I will be around a lot of people"

I'm trying to think of something funny Wendy.  Ummm...try going everywhere acting like a proper Zombie!  You know, moan, shuffle, the works!

But what I really want to say is...I hope it goes well and you get thru it.  Still think CT scan is the only way forward for you.  Frankly, I wouldve put a hex on your Dr's! :hug:


----------



## Dexky

I feel for you W!!  I can't imagine having to eat with that!  I hope it's going ok for ya!


----------



## Astra

Hope everything's ok Wendy?
Thinking of you and sending big squashy hugs your way, it'll soon be over!
xxxxxxxxx


----------



## Keona

thank-you everyone... it meant a lot to come on here to find all of these comments.  
I actually had 2 tests done today which I didnt know.  I had a motility test and am still doing the Ph gastric test.  The motility test is a thicker tube put down your nose.  First they put a wire thing in and spray 4 times and tell you not to breathe.  This is supposed to be a local anaesthetic which by the way tastes very bad... very bitter.  Then they dip the tip in another anaesthetic lube and make you sit as upright as possible on a stretcher and hand you a glass of water with a straw.  It helps to drink the water while they are doing it as it tricks your stomach into thinking it is food.  I got nautious when I didnt drink and almost threw up and not because of the gag reflex.  Then they measure your acid and motility of stomach and esophageal muscles.  
Then they give you a syringe of water and tell you to swallow and alternate it with do not swallow for about 40 seconds... then they take it out after about 1 hour.  

Then they do the same thing with the thinner tube.  Pretty much the same process only they tape it to your face and nose and put box around you - like you would a purse cross ways.  You have to monitor everything.  I will take a pic to show you.  I get it out tomorrow at 8 am.

Dex, you are right.  It is difficult to eat but they encourage it and they encourage you to eat everything that gives you issues... chocolate, coffee, etc...etc... not allowed any fruit juice, alcohol, etc., as it would be measuring the juice and not your acid reflux.  You are also not supposed to eat lettuce as it tends to get wrapped around the tube and makes it difficult.  Eating is difficult in general.  It tends to pull on the tube when you swallow.  Its not really painful just uncomfortable and sort of scary sensation.  It really does look worse than it is.  Its not comfortable by any means but it isnt that painful once in... and you do get use to the tugging on the tube with every swallow...whether eating or not...   I scared a little toddler coming out of the hospital - she was pointing at me and she just looked scared.  I also encountered people in an elevator in my building..once I got in it got very silent and then as soon as I stepped off, they just started chatting like nothing happened.  I was with really supportive people all day so they were making me laugh and they just pretended like it was just very factual...which was good ... nobody made me feel like a freak or anything so I was grateful.  

Here is a pic.  I liked the hat idea as it was easier to hide my face when I was embarrassed.   Funny how the people in my life encourage me to stop hiding ... 

thanks again everyone... I really appreciate the emails.  Made me smile when I logged on   Almost done   which means closer to answers.
oh..forgot me mention that after awhile, once the anaesthetic wears off... you have (or it feels like) you nostril is constantly running... ha...and I think it actually might be (I keep putting a kleenex to it...)


----------



## Terriernut

Wendy, somehow you manage to look gorgeous even with a tube in your nose!!!
:ybiggrin:


----------



## Keona

haha..thank-you... I did not intend to match the hat with the machine.  I put the hat on after the hospital but it was already packed in my bag.  I am still trying to figure out where the CDR's go


----------



## Dexky

You look so good Wendy, you'll probably start a trend!!  Wow, one hour to go


----------



## Keona

I KNOW>>> I MADE IT!!!   HAHAHAHAHAHAHAHAHA  

I have no idea what the readings mean .. I started off with a gastric pH 2.3
I have seen it fluctuate as high as 7.0 and everywhere in between.

It wasn't that bad (except the stuff they spray to freeze.) ALSO... if you ever have one done, drink a coffee or something hot right after, it makes the tube in your throat a little less rigid and makes it easier to swallow for awhile. 

I have never been so happy to go to the hospital


----------



## DustyKat

Awesome pic Wendy! You wear it so well! Now if you just moved the machine in front of your face a tad I could say it was stuck to your forehead! :lol:

So glad it is all over done with hun, well done. When do you get the results? 

Much love mate, :Karl:
Dusty. xxxxxxxx


----------



## Keona

ROFLOL... OMG Dusty.. I forgot all about that!!!  that is hilarious.... hehe

not even a sore throat from having it removed.  The tape was extremely adhesive so it was sore getting it off and they give you a special wipe to take the tape guck off .. it is hard to remove the adhesive from face but my nose and throat feel fine.  
They never said when I would get the results.  I couldn't wait to get out of there...  I will be calling my GI first thing next week to inquire.

...on to the next.







I am really surprised by peoples reaction to me having it... I was on the elevator twice with the tube in.. first time I didnt have the tube in and my neighbours were moving ..they were really very chatty with me when I was leaving to get it in yesterday am.  When I returned later last night, they were in the elevator again (still moving) and this time they didnt acknowledge me.  No eye contact, no nothing... (except the woman with them stared at me... it was very awkward).  then this morning, my friends husband was in the elevator (my dog hangs out with theirs sometimes so I know them well).  NOT A WORD!!..no eye-contact....


----------



## Terriernut

Wendy, people project their fears.  Dont let em!  Dont feel bad about their problems!  

Personally, I think you is gorgeous!  With tube or without!

Hope you get your results very soon, and a CT scan for good measure.  Love the proctologist pic..:ybiggrin:


----------



## DustyKat

So did you photoshop that pic so you wouldn't scare us? 

If you didn't photoshop it were you scared no one would respond? 

Dusty. :ybiggrin:


----------



## Keona

ya, the CT entercolysis I am admittedly afraid of having.  Its not until Aug so I have some time.  I have a colonoscopy, a hydrogen breath test and another motility test yet to do.  Colonoscopy.. not to worried (except maybe the prep a little...haha)... the others not so much just the CT (only b/c of the NG tube again.).  The technician told me it would be more difficult... 

did I mention how happy I am to have that tube removed from my nose?   I think everyone ought to have one in just so they can feel this great having it removed....haha... 

I am really starting to not care about what people think of me (except those who are important of course)...  that saying 

"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind." 
~ Dr. Seuss

...is really starting to have meaning to me....


----------



## DustyKat

> "Be who you are and say what you feel because those who mind don't matter and those who matter don't mind."
> ~ Dr. Seuss
> 
> ...is really starting to have meaning to me....


So true, good for you Wendy! You deserve nothing less hun. 

Dusty. xxx


----------



## Keona

I dont understand your question Dusty.  The pic was taken with photo booth on my MAC.. no photoshop at all.... was I worried that nobody here would respond to it?  I put it on my facebook as well.  The tech told me to go about my day as usual.. go to work etc.  Instead, I felt like I had to hide b/c of peoples reactions (in my building and in public).  I stayed at the advocates office for the day/evening and they were completely the opposite - they were really supportive treating me normally and asking questions.  Also, the tech told me not to go home and feel sorry for myself.  I thought it was great that she told me that.  Really made me think about peoples responses to me and became really aware about how their responses made me feel.   Joans tagline makes sense....


Oh..and I spoke to the director at the advocates office and she asked me about the doctor situation.  There are no doctors accepting new patients in my catchment area.  She asked me what would help and I told her maybe getting them to get together and talk instead of having 13 different interns, a GI, 2 clinical nurses, a dietician and my GP all giving me conflicting info., just maybe if they got together and came up with a solid plan... that would help.  She is going to inquire about it.  Im not even saying that I have to be there for it... just they need to get their story straight...their advice and suggestions....plan of care!!


----------



## Terriernut

I think she meant because you looked so good Wendy!


----------



## DustyKat

Oops, sorry hun, I was joking...having a poke at the people who couldn't look at you or talk to you.

Dusty. xxx


----------



## Keona

ohhhh...okay...now I get it... 

dont be sorry - just wasnt following ... haha...  personally I think I look like I just got out of bed and threw a hat on....
makes me wonder how I react to those in the same/similar situation .. I wonder if I have done the same ...hmmmm  Apparently when I was little I asked a man in a mall if I could sit on his lap (he was a double amputee in a wheelchair).... he picked me up and put me on what lap he had... I vaguely remember the man - i was always reminded of that growing up...


----------



## DustyKat

Hell, I wish I looked that good when I just got out of bed! I could scare a dog off a meat cart!..........shut up Dex!!!

Dusty.


----------



## Keona

LOL..nice expression... (and the "shut up Dex" part is a nice touch...haha)

pfffttttt...  I seriously doubt it though.... .  i saw pics of your children!!!


----------



## Mayflower537

Sorry you are in such weird diagnostic limbo, Wendy.  When is your scope?  Maybe that will give the docs the evidence they want and can then diagnose you "definitively."  I hope something comes up concrete.  
xx
May


----------



## Terriernut

DustyKat said:


> Hell, I wish I looked that good when I just got out of bed! I could scare a dog off a meat cart!..........shut up Dex!!!
> 
> Dusty.


:rof::rof::ylol2:


----------



## Keona

Hi May

Im not sure.. I am waiting for them to call me for a date.  I already have the prep.  The GI got me in for that test within 2 weeks so I have a feeling I wont have to wait long after the call.  Not sure why I think that way as I had to wait about a month or 2 for the endoscopy.  I think b/c they gave me the script for the prep and they told me to fill it right away .. maybe??

someone posted this on my facebook wall in response to a similar conversation to what we were talking about..

"'This quote is for you Wendy, "I don't want to cover up my scar, It's a good conversation starter and it makes me look bad-ass. But thank you anyway!". 
"Scar tissue is stronger than regular tissue. Realize the strength, move on." Hope all goes well for you, sweetie!'"


----------



## AndiGirl

I'm just checking in with you Wendy.  You are beautiful even with that tube.  I've had a scope stuck up my nose to check on my sinuses.  That hurt and was uncomfortable, but that was very temporary.  I can't imagine having to wear that tube.  Hugs to you sweetie, and best wishes for all upcoming procedures.


----------



## Dexky

Hey Wendy, you should contact a local tv station and do an expose!  Walk around with a hidden camera while you're wearing that tube(a fake one this time).  See how differently you're treated!  The monitoring device looks like an old Sony Walkman

Dusty, you're quite striking too....or at least you were the last time you took a picture 20 years ago!!!!  Now, I'll shut up!


----------



## tiloah

Keona said:


> I am really surprised by peoples reaction to me having it... I was on the elevator twice with the tube in.. first time I didnt have the tube in and my neighbours were moving ..they were really very chatty with me when I was leaving to get it in yesterday am.  When I returned later last night, they were in the elevator again (still moving) and this time they didnt acknowledge me.  No eye contact, no nothing... (except the woman with them stared at me... it was very awkward).  then this morning, my friends husband was in the elevator (my dog hangs out with theirs sometimes so I know them well).  NOT A WORD!!..no eye-contact....


The day I got out of the hospital we discovered the cats had tapeworms! AUGH. We took 'em straight to the vet and I was still wearing all the same clothes and hadn't bathed. Most people were polite but one kid (about 16 or so) just kept STARING at me. I was all "PFFFF whatever I had surgery, that happens sometimes." I did NOT care about my appearance!


----------



## Terriernut

diesanduhr said:


> The day I got out of the hospital we discovered the cats had tapeworms! AUGH. We took 'em straight to the vet and I was still wearing all the same clothes and hadn't bathed. Most people were polite but one kid (about 16 or so) just kept STARING at me. I was all "PFFFF whatever I had surgery, that happens sometimes." I did NOT care about my appearance!


Too right!  When the babies are sick, they are all that matters!

And frankly, people who are rude and stare need lessons in manners!


----------



## Keona

I just didnt expect it from my friends.  I think it was Misty who wrote that is was people projecting their own fears on to me.... which I think shes right.  I love that idea Mark!!  haha... wish I would have thought of it... and it DOES look like an old discman.  Nowhere to put the CDR though and the music would go through your nose not your ears ...haha...

the tube is out already.  I look at it as practice or warning for the CT enterocolysis.   How they're gonna get 21 feet of tube down my nose is beyond me.... better than the alternative though...I guess.  When I called the tech barbaric.. (lol..jokingly)  she told me that I was lucky  - that I should see what they use to do to people.  So, even though I didnt ask.. I feel lucky- I am sure it has improved a lot.  Im guessing surgery as my GI once told me that whenever anyone had intestinal issues, they use to have to cut people open always (or leave them to suffer).  I have to be really mindful though of the fact that usually when I get really stressed out over a test or something I worried way more than I ought to have... seems like a waste of energy and I wonder why I worried so much and in comes regret...blah..blah... soooo... I decided Im not going to worry about it until the hour before.   Let's see how that theory works for me 

Having a tube shoved down my nose gets me in my head right quick and end up "thinking" all about it... as opposed to feeling all about it...    Next time Dex, I just might do that... I really believe that until people are AWARE of something there cant be CHANGE of something.  I find since Crohn's is such an embarrassing disease...it is slow to change as people are embarrassed to talk about it... Im not anymore..   If I could only think of a piece where it could raise money for research as well though....  then I would probably be really motivated


----------



## Keona

I met someone ... finally.. and although he does not know about the Crohn's (or whatever it is...yet...) I dont think he will care.

I am waiting for him to ask - or for the right timing....unfortunately he is at his cottage with his buddies (planned long ago) ... but as far as I know, he doesnt have any grow ops or mushrooms in his freezer... HAHAHAHAHA       :rof:


----------



## Crohn's Mom

that's awesome for you .....and hilarious too !! 


> but as far as I know, he doesnt have any grow ops or mushrooms in his freezer... HAHAHAHAHA
> __________________


I hope he is straight up and takes good care of your heart ! You deserve it!


----------



## AndiGirl

That's terrific Wendy!  I love the statement about the mushrooms.  LOL!


----------



## DustyKat

Awww, good for you Wendy. He is one lucky fella! 

Dusty. :Karl:


----------



## Dexky

Hope he can keep up with ya Wendy!!  Good luck with that dude


----------



## Keona

haha Mark.. I have a very busy brain (meaning all over the place wanting to do everything) ... I doubt it


----------



## dreamintwilight

Yay, Wendy! Sounds exciting  Hope things go well with your new man!


----------



## Terriernut

Fingers crossed, toes crossed, even braided the hair.  Hope the guy is 'a good un'


----------



## Astra

Wow Wendy! Lotsa good luck with him, I'm sure he's a good un!
xxxxxxx


----------



## Crohn's Mom

Hi Wendy 

Just checking up/in on you hun!  
How are things going with your new man?
Oh, ya...and your health too !! :lol:

thinking about you! :kiss:


----------



## Dexky

^^Ditto^^

She's probably off on a photo safari having a ball....I hope so anyway!!


----------



## Lisa5326

I'm caught up on this thread I think, I'm interested too how's it going Wendy?


----------



## Keona

Sorry everyone!  I following a few threads on here and didnt see that someone had replied to this... 

I received a call from the GI nurse yesterday and the results of my two tests came back - I have some motility issues with my oesophagus so it isn't working as well as it could be.  I also have acid in my stomach despite being on a double dose of proton pump inhibitors.  I asked if they knew what caused the motility issues and they dont know.  I suspect I may have an idea but I havent asked if this could cause the problem I have.  I also asked if there is a way to self correct the motility issue.  I was told to take Liquid Gaviscon no more than 4x's day. This will coat my stomach for a period of time and especially coat the valve.  I especially have to take it a bed time and after meals.  So, although it tastes chalky it doesn't sound too difficult.  The pills do not work as well. 
So - theres some good news.  I am being heard and they have conclusive results that I am fairly in tune with my body.  Gonna go buy some Gaviscon.

Hey - I was taking photos.. check this out  http://www.flickr.com/photos/wendybush/
I have been living.


----------



## Dexky

Awesome Wendy!  Those J. Jackson pics look very professional...and I see you took them and the tiger lily pic with the Canon Power-shot.  Those are my favorites, the macro's.  I gotta get something for my D60 that lets me do that!!  When you figure it out, let me know


----------



## Keona

Hey Mark, if you are wanting to take Macro photos with your D60, then get a macro lens.  You can get all different one depending on how much you are wanting to spend.  I need to get one as well.  The pictures will be sharper on the Nikon I think.  I took the canon to the concert because it was the smaller of the two and I wasn't sure if I was allowed to take it in.  
I like macro photos a lot as well.  



on a different note, the reason why I am taking the gaviscon is because the medication they give people with motility problems of the oesophagus - causes bowel problems.  I hope the Gaviscon works!!  Anyone else have motility issues of the oesophagus???

Wendy


----------



## Astra

Hey Wendy
good to see you, hope you're feeling ok?
Looks like you've been having fun! Those photos are fab!
How's the new bloke? Or have you binned him!
Stay well
xxx


----------



## dreamintwilight

Good to know they're finding things, Wendy! Not good you have problems, but at least if something is going on it's good they're finding out and treating it. I hope the Gaviscon works for you. I love all your pictures! Keona is so photogenic


----------



## Crohn's Mom

So good to hear from you Wendy, and fabulous to hear that you are busy living!
Your pictures are amazing...you have some real talent! 

hugs,
~T~


----------



## Keona

Thanks everyone.  I appreciate it.  Half the trick of photography is to carry a camera around with you.  You're a good photographer Mark...I like the pictures you have taken.

Yes, the guy is still around.  He is nice but I think he is a little cautious of me for a few reasons.  Crohn's being one ...

I have also been doing public speaking and writing a lot of speeches.  Most recently I will be posting in an online essay contest for 15,000.00 (CAD) called,  "I Can Achieve".   So, I have been keeping busy and doing things I really enjoy doing.  The challenge part!

As far as how I have been feeling.. I have noticed a correlation between refined sugar and pain/bloating, etc.  It took me long enough to hear everyone on that...lol... I use to eat a lot of refined sugar so now that I have come to terms with that - I stopped eating refined sugar.  Same with popcorn - it was always a staple in my diet.  I stopped eating popcorn.  
The pain is still there but I think I have also learned to shut it off to some extent.  I am nervous about the CT Enterocolysis on the 16th.  I did ask if it would be painful and the clinical nurse said no.  It wouldn't be any worse than the test I already had with the tube.  She also said the tube doesn't have to go all throughout my intestines...just to the top and then they will release the dye into them and fill them up that way. 
The GERD pain or motility pain in my esophagus.. and between my shoulder blades is quite painful at times.   I am hopeful the Gaviscon will work... a coating makes sense to me... will let everyone know .. thanks everyone...


----------



## Terriernut

I am glad to see you are busy and living and your life!  Gorgeous pictures!

Dont be afraid of the test, no, you've been through worse!!
:kiss:


----------



## Keona

Thanks Terriernut - it was in the back of my mind to cancel it due to fear but the length of time to took to get this test... well..cancelling may not be a great idea.

it'll be alright - if I got through the last test okay - this one ought to be similar.  I did read an article on it - a step by step procedure... and it doesn't really match up with what the nurse is telling me.  The radiography paper mentions it can be painful.  okay... just keep on keepin' on......    at least they now believe that what I am telling them is truth.  They have the proof that what I am describing is fairly accurate with what is going on...
when the message of "its all in your head" is removed... it is a relief... one large barrier knocked down.. 

:thumright:


----------



## Terriernut

Wendy, this will probably be your last step toward help.  I KNOW you can do it, you are very brave, and your heart is a big as Canada.

YOU will be fine, you are no wimp.  And now they know its not in your head, you are gonna be feeling good again, and I hope very, very soon.
xxxxxxxxxxxxxxxxxxxxxxxxxxx


----------



## DustyKat

Hey Wendy,

Thanks so much for the update mate, it is so lovely to hear from you. 

I love your photographs and they never fail to inspire me, what a wonderful gift you have. 

I guess you already know this but just in case you don't...don't take any of your other medications/supplements for two hours either side of taking your Gaviscon.

Dusty. xxx


----------



## Dexky

Keona said:


> Hey Mark, if you are wanting to take Macro photos with your D60, then get a macro lens. Wendy


Yeah, Wendy, I started researching them a little....I was kind of hoping you'd go first and then tell me what to do!!  Some say spend the money on the Nikons and others say the knock-offs are the way to go.  It's hard for me to justify spending too much.


----------



## DustyKat

Why don't you just buy one for EJ and justify it that way? You know like you have with the ipad, the guitar, your new car....:rof: 

Dusty. :ybiggrin:


----------



## Dexky

That's a thought!!  He would let me use it after all!!  He quickly lose interest in his lens w/o a camera!


----------



## Keona

If I get on City Tv I am mentioning Crohn's disease.  Only had 2,000 characters.  

http://contests.citytv.com/icanachieve/story.aspx?sid=879

Dusty - why 2 hours of either side of taking Gaviscon?  Does it stop the other meds from being absorbed?  I haven't taken it yet.  Have you had it?

Yes, Dex go with any macro lens you can afford.  I agree with Dusty... teach EJ how to use it.


----------



## DustyKat

Hey Wendy, 

Yes, it affects absorption. I haven't used it but any of those preparations used for reflux, like Gaviscon and Mylanta, will affect your ability absorb other medication. 

Dusty. xxx


----------



## DustyKat

Oh Wendy, I just read your I can ahieve story. What an amazing, strong, talented and compassionate lady you are! 

So we get to vote on your story is that right? I saw the vote on 8 August, which we already are here in Oz, but nothing happened, doh! :lol:

So very inspired by you, :thumleft:
Dusty. xxxxxxxx


----------



## Dexky

Awesome Wendy!!  I knew there was something special about you!!  Most often, I'd read something like that and think it's so much purple prose but having spoken with you a number of times over the last year, I know you mean every word!!  You do live every word and do so with conviction!!  I'm so very glad to have sort of met you  You may never change the world but you certainly do affect the lives of those you touch!  Thank you from a true fan!!


----------



## Keona

Thanks everyone.  I have to get as many clicks as I can by Sept 4th.  People can vote daily.  I have to figure out the best way to get everyone to click on it.  The prize is money and I want to put up billboards.  I like community development.  It is what I do 
This is the link:

http://contests.citytv.com/icanachieve/story.aspx?sid=879

public voting determines the top 10 and then a panel chooses the 3 winners.  You are interviewed by CityTV Newsline.  
If anyone can help me figure out a way to get people clicking on it - I am interested in your idea!

Thanks Dexty.  :redface:  Im not sure if you can vote in Oz Dusty.  Let me know so I know who to send there.

you guys are awesome.  I am not trying to change the world -just to help facilitate a shift


----------



## DustyKat

It won't process my vote because of the phone number. 

I even know the answer to the skill question! :lol:

As far as voting and the people here, start a new thread.

Dusty. xxx


----------



## Crohn's Mom

Truly inspirational Wendy 

I voted of course !


----------



## Terriernut

I voted for you Wendy.  You are wunnerful!  I have a similar story, not as bad, but honey, my heart is right with you.  

Our past can only make us stronger.  

:thumleft:


----------



## Dexky

Voted!!  Good luck Wendy!!


----------



## DustyKat

SO NOT FAIR!!! 

Some one give me a phone number I can steal!!! 

Dusty. :heart:


----------



## Astra

Once I've sussed out how to put my phone number on, I'll start voting daily for you Wendy!
Lovely story and so inspirational, much love to you xxxxxxxxxxxxx


----------



## Keona

You guys are the best... seriously.  It does make you stronger .. no doubt in my mind - it is the stress I have to be careful of.. hence my medical issues..  I think I have figured out what it means to use your experiences for the better.  I spoke today also in front of a lot (talk about needing a washroom) of wealthy people (banks) for an organization that helped me out.  The money donated today will go to that organization to help others in similar situations.  It is good to finally have your experiences have meaning, you know?

anyhow - thanks everyone   voting until Sept 4th is a pain but I think they are trying to get a sense of the entrants rallying skills.... 



thanks for the tip re: new thread!
Wendy


----------



## Crohn's Mom

hey Wendy...could you put the link to your votable story in your signature for a bit...
It's easier then trying to scroll through this post and find it each day 

I want you to win! hehe

edit: So I am not sure what I am doing wrong...or if it's a glitch with their system...but I have voted 5 times in the last few minutes and it is accepting them?? It continually says..."thank you for your vote".  
Are they actually counting and giving you credit?  LOL
If nothing else..I guess it gave you a few extra since I decided to see if voting more than once works


----------



## Keona

great idea - thank-you...doing it now!

lol...dusty... "even know the answer to the skill testing question..."  haha


----------



## Dexky

I voted for you Dusty!!  Wendy, I want a signed copy of your first book!!


----------



## Welsh-bird

I'm voting here too!!
Dusty, use my number...

@Dex- why are we voting for Dusty? Have the sainthood nominations come around again?


----------



## Dexky

Well, normally, I'd vote to cancel Dusty's but on this one occasion...I think Dusty and I can actually agree on something


----------



## Welsh-bird

Bit slow here today- I get it. Voting on her behalf rather than for her!

More votes in for you Wendy....xxx


----------



## Dexky

Haha, yeah!!  But St. Dusty does have a nice ring doesn't it??


----------



## Welsh-bird

You and she must have had the same 'bum' conversation that she and I had the other night!! Something along the lines of 'kiss it...'!! lol

Sorry Wendy, will stop hijaking!! xxx


----------



## Dexky

Umm, I can truly say NO!!  But she has told me that on many occasions!!


----------



## Goldfish

HI Keona. I am way behind trying to catch up on this thread but just to let you know I voted for you too.

Dusty, no one will find me via my number either as I cant put it all in but a vote is a vote. Just put in the basics and it should work. Forget the codes, no room.


----------



## DustyKat

It says it all...





No need to say more...:tongue:​


----------



## Welsh-bird

LMFAO @Dusty- that pics come back to bite me on the arse!! xx


----------



## Goldfish

Love the pic dusty Ha


----------



## Keona

you guys are hilarious... St. Dusty... I almost spit my coffee on my screen.. lol 

how are things Andrea?  hi-jack away... that was pretty funny...

thanks everyone..

and Guess what Gaviscon is made with?  Brown seaweed... know what Gaviscon tastes like?.. brown seaweed...


----------



## Dexky

Hahaha, I did spit my coffee on the screen...ok, it was beer but now I gotta get the Windex before my daughter sees her laptop  Mmmmmm, that's some good seaweed!!!


----------



## Keona

Its pretty gross... it says fruit flavour but I don't taste anything that resembles the slightest hint of fruit in there...


----------



## Crohn's Mom

still voting! 
and bumping


----------



## DustyKat

Schweet.......I got to vote!.......anda:anda:anda:

Thanks Welshy! :kiss:

Dusty.


----------



## Dexky

Crohn's Mom said:


> still voting!
> and bumping


Ditto!!


----------



## Keona

I just had a small heart attack :ywow:  I logged onto this site to see it looks completely different!!  I thought it was a new support group... phew!  I like the way it looks... it has a different perspective for sure!  clouds and stuff...   !!!!

I am back up running on a treadmill.  I have ran about 5 or 6 times now and although I do get some increased burning in my RLQ - I LOVE TO RUN!!!  My doctor told me 4 years ago to quit because she thought the original pain was due to running so much (arthritis, etc).  This all started out thinking it was because of running.  Did I mention that I love to be back running and it is working out pretty good?  I started to see a masseuse and I use a lot of ice packs for pain relief.  So far so good.

Thank-you everyone for clicking on the website.  I really appreciate it :redface:
If I win, I will be partnering up with another organization and will be putting up 10 billboards for a month.  I think you also have an interview spot on TV.  Not sure I like that much but I like the billboard idea.


----------



## Goldfish

Wow I just had a small heart attack thinking you actually had one!! Ha!  Phew! Glad all seems well


----------



## Terriernut

Wendy, great you are running again, even through the pain.  I bet Keona is bouncing off the walls waiting for a full on run!!!

I've been voting away for you, as you are most deserving of winning

:hug::hug::hug:


----------



## Welsh-bird

Still voting Wendy-
Hope I will soon be joining you pounding the roads again.
Much love xx


----------



## Dexky

Eh, I tried to post an 'I voted today' smiley but failed miserably....Dusty??


----------



## Goldfish

I'm still voting too


----------



## Keona

Thank-you everyone for voting.  Sorry for the mini heart attack .. I did not have one but I did panic a little :ywow:

I am not sure where I am in the riding but as of today, I do not appear to be in the top 10.  Guess I will have to step it up a bit.  

So, I have to have my CT enterocolysis tomorrow bright and early!!  7:45, taken to fluoroscopy for insertion of NG tube and scan takes place at 9:00.  Hospital stay of about 2 hours.  I will be getting sedation asked to have someone take me home.. check!  (Has an awesome person going with me).  Nothing to eat or drink after 12:00 unless I have to then ( clear fluids, water, apple juice, coffee, tea).  NO MILK.  IV is inserted, radiologist inserts small tube into your small bowel through nose or mouth, a mild sedation here..
fluid is placed into tube to fill small bowel once tube is on proper place. Taken to CT scan room where more fluid may be needed to be put into bowel through tube.  Medication Buscopan...Im sure all of you are familiar with that by now... through IV.  X-ray dye injected through IV during CT - pictures taken.  After test, radiologist removes tube and monitored for 20 min (according to that radiology report I posted, I will be very busy in the washroom during this 20 min).  Then I can leave... Cinch.


----------



## Goldfish

Best of luck with it. You sound so knowledgeable of it all you could nearly do it yourself  No seriously, I hope it all flies by smoothly and you can be back at home in a flash an relax


----------



## Keona

I have plans for 5:00 so I hope it will be worn off by then...  
ya, .. I think Im gonna pass on doin it myself 

  Made me laugh just visualizing it though.. 

here is the link:  http://contests.citytv.com/icanachieve/story.aspx?sid=879

there does not appear to be any signatures anymore...

Dex.. Ej can show you how  
YES!  Keona is eager to get out running with me (she runs with other dogs at the dog park but we use to go running together - not the same).  I am on treadmill now.. so no hard concrete yet. Need to move to hard packed surface (dirt) next.  Good weather here for it!!


----------



## DustyKat

Good luck for tomorrow hun! Fingers and everything else crossed that you get *solid *answers!......

:goodluck::goodluck::goodluck:

Dusty. :heart:


----------



## Keona

Thanks Dusty   Thats the thing... an ANSWER   so I can move one with this...


----------



## Terriernut

Wendy the very best of luck tomorrow!!!!  Almost there!!!!!
:kiss::hug::kiss::hug::kiss::hug:


----------



## Goldfish

I noticed the signature thing too. Thought it might be something I did myself but its not just me. Your prob in there now so thinking of you with everything croessed!


----------



## Keona

well, it wasn't as difficult as it was in my head.  If you have ever had an NG tube before...then you are almost halfway there, essentially.  The conditions they do it in is a lot scarier.. you are in an O.R type setting with an X-ray machine so they can see where to insert it.  My doctor (aside from being extremely good looking and fit) was also really nice.  He went into every detail asked any questions (I wanted to know what they fill your bowels with) they give you an I.V (which she got the first try..YAY).  They spray your throat with the same stuff they use in an endoscopy... the bitter stuff... difference being you are usually out cold right after.  That stuff seriously freezes which is scary b/c it makes swallowing difficult..almost impossible.  After the tube was down my nose and once the gagging and vomiting sensation wears off they lay you down and give you some valium (it had valium/derivative in the name.)  Once they have it in place (unfortunately, my problem is at the lower end of the intestines) they wheel you by stretcher to another room with a box-like machine.  Almost looks like a dyalysis but on a table.  The nurse just holds the other end of the tube in a steel can and it goes in to your bowel.  1, 500.00 ML OF IT!!!!   You can feel it all.. (and it is cold)  

The doctor doing my test told me he was the one who read my last one who suggested no further follow up.  He agrees the test should be done as he didn't see the first two abnormal ones.  

Anyhow, then you are wheeled to CT, have you hop onto the table and fill your bowels more (not sure now much) and then give you buscopan and the dye (again, feeling like you flooded yourself).  The CT was the easy part.. but the amount of people involved doing this freaked me out.. a lot.  They set aside a day and today they have 3.  It was a scary process but like I said, if you have had an NG tube, you are almost 1/2 way there.  At one point they scared me, I think intentionally.  When I sort of snapped out of it and looked around, I had hold of the tube.  It was easier the first time around because they has the back of my head against a stretcher.  This time, I was on an x-ray table and he was holding the back of my head.  I didn't like that very much at all because he has to force it.  I sort of have respect for them because there is no way I could do that to anyone...lol.  The goop they put in your nose was difficult as well.  They shove it in your nose and then tell you to take a big sniff in... umm... first of all, it clogs your nostril and second of all.. it was like trying to snort Vaseline... The amount of liquid they fill you with is also very uncomfortable.  They do this because of timing... when you drink it.. there never is as much liquid in the bowel as they need to expand the loops and everything.  When it is not expanded enough, it can look like disease on film.  I told him about being constipated for 19..or so after the first one where they saw a stricture.  I told him that it would be a colossal coincidence...but I suppose possible.  I also predicted the one higher up in the jejunum before the G.I told me I had one.  This doctor was nice and I just told him that something is going on b/c I still have the pain in my LRQ.  Somedays I can function with effort and somedays I cant function very well.  So.. there we have it.  Spending a lot of time in the washroom.  He told me not to have any work plans today and to just go home with access to the washroom...haha.  I do have a meeting at 5-7 but it is with a group of older persons and they themselves have bowel issues so Im in good company (who understands).  
So, its all good.  Im sitting here with a coffee, cinnamon bun and my cat.  If you ever have to have it done...go in with a sense of humour and make sure you have a really hot looking doctor and really sociable nurses.  They were all great in the entire department.  All very nice people....
now I just wait. They said they will get the report end of today maybe tomorrow.

sorry it is so longwinded!


----------



## Terriernut

Wendy...OMG you are such a trooper!!!! Well done for getting through all that! :thumright:

I hate to think what it's gonna be like with all that goop coming out over the next several days???  Oh dear.

Huge HUUUUUUUGGGGGGGGGGGGGGGGGGGGGGSSSSSSSSSSSSSSSSSSSSSSSs
and xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


----------



## Astra

Ewwwwwwwwww Wendy, you're so bloody brave!
An endoscopy is bad enough!
I really hope you get an answer after all this mauling about - even if he was fit!
xxx


----------



## Keona

ya, he was pretty buff.. even the nurse said so before I had met him .. and he is married..
its all pretty much wearing off .. mostly feels like I have a sinus infection and cramps in my stomach..throat hurts a little.. 
I dont know, if anyone ever reads this who has to have one done.. you make it worse in your head than it really is.  Its not the most pleasant.. but it is quick.. (2 hours) and you leave without the tube 

OH.. and the gaviscon.. should actually read "FRUIT SCENTED" and not "Fruit flavouring"... there is no fruit in there!!!


----------



## Terriernut

Bummer he's married.  Also shame you dont have a photo of him.  I guess it helps to have some 'eye candy' now and again!

How are you feeling now?  Besides tired...which no doubt you must be!  But, I sure hope this test does it for you and you get the answers you so deserve.


----------



## Goldfish

Wow I was lost trying to follow all that but totally impressed and think you are very brave. Well done you. I'm not so sure I would be so good. Hope you hear what you need to out of it.


----------



## Dexky

Ugh Wendy!!  I hope you get solid answers and it's all worth it!!


----------



## Keona

I am okay now just had a bit of a headache and my throat, nose (anywhere the tube was) sort of hurts a bit.  Felt like i had a sinus infection for awhile .  Nose, sinus and throat and chest were sore - a lot better by about 7:00 pm though. 
I had the hiccups for quite awhile after the test..you know the real loud ones that come from deep down..lol.. someone told me it was due to air inside intestines.. not sure how true that is.. there was air down their b/c I remember her letting some out of the tube and she said it would make it more comfortable...  Im okay.. I am really glad to have it over with and to get some answers.

HAHA Terriernut... he WAS a good distraction 
Thanks Goldfish.  You would do just the same.. because it is better than the alternative


----------



## dreamintwilight

Wow, Wendy. What an event! I'm glad it wasn't as bad as you had anticipated and I hope you hear some results real soon.  You rock!


----------



## Keona

Hey Marisa.. thanks!!!  I will finally know for sure if I had an abcess...haha.. the way all of you described it.. I could relate a lot.  Ya, so once in for all I hope to have answers!!  I have a camping trip to go on Monday - for a week and another one in September and a week portage/canoe trip in October so I am counting on my health getting better.  I thought if i booked all these trips I could make it work somehow....


----------



## DustyKat

Woohoo, bloody good job mate!...anda:anda:anda: 

Everything remains crossed...the eyes are starting to hurt a bit but they're still crossed!...

	
	
		
		
	


	





Hangin' out for the results!
Dusty. xxx


----------



## Keona

well, I didnt get a call this morning so that is good news, right?  The radiologist told me that my GI would get the results that afternoon or today and I usually received a call the next morning, after they found abnormalities.   I didnt hear anything...and my interview for Outward Bound is Friday afternoon


----------



## DustyKat

No news is good news, so I hope more than anything it is for you too Wendy! But I still wish for you to have answers, fingers crossed they have those for you. 

Ooooo, loads of luck with the interview! :goodluck:

Dusty. :heart:


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## dreamintwilight

Outward Bound - how cool! I've heard of that organization. That sounds right up your alley too. I thin you'd be awesome!  Praying for some good news for you so you can enjoy all these trips!


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## Goldfish

Good luck with the interview Friday Wendy


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## Keona

still no word.  The first MRI I heard the morning after.  The second, I heard 4 months later (that they wanted to do a repeat MRI as the second was also abnormal.) 3rd one, I called the next morning I think for answers..or a day after.  So far so good.  I will eventually call if they don't.  With my Ph testing, it took them several days to get back to me but I didn't ask when he'd get results.  I should just call and find out... I think they would have called if something was serious though.. I think the doc doing the test would have looked at them as they were being done... radiologist/doctor...  I want answers.

A few days after the CT entercolysis.. you are fairly whooped.  I haven't had much energy.  Maybe just stress and the valium and all the crap they put in me...  had a headache ever since.. probably stress and heat/thunderstorms I am thinking...

I am very excited about the upcoming trips though.  Out in the woods with bowel issues...haha  (ok..only one trip is without toilets..the other 2 have toilets and running water etc.)  I got a phone interview so I am one step being closer to the Outward Bound one.  They generally try to push you to your limits of wanting to quit.  When you eventually do, they help you process it..and it is supposed to help in your daily life out of the woods... lets see if this theory works..


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## Terriernut

Sorry you are feeling tired, but it was a pretty yucky proceedure.

I'd call them Wendy, just so you know!  Digits are crossed for you on the job, but I dont reckon I'd like the no toilet one! :shifty-t:


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## Dexky

Keona said:


> I got a phone interview so I am one step being closer to the Outward Bound one.  They generally try to push you to your limits of wanting to quit.  When you eventually do, they help you process it..and it is supposed to help in your daily life out of the woods... lets see if this theory works..


If they can find your limits, they've done something  I hope you are feeling your best for the upcoming camping trips Wendy!!  And as always, answers!!, hoping for answers!!

Still voting!!


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## Welsh-bird

Bumping, AND voting Wendy (I'm good at multi tasking!!)
xxx


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## Keona

Thanks everyone   The camping trip went well aside from a tornado warning and a severe thunderstorm.  We were all (100 women and children) put into a large cabin (with 1 ... count'em ONE) bathroom I might add!  and someone with bowel issues...!!!  that was not the highlight of the trip but at least it only lasted 4 1/2 hours.  I get a little claustrophobic as well with all the children crying and the heat and just the amount of people.. but was taken to the furnace room where it was quiet for awhile.... there were others who couldnt handle the cramped quarters... the rest of the trip was really good.  When I spoke with the outward bound people for the 8 day flatwater trip they asked if I had any concerns... my only were lightening/thunder... where do we go?...under a tree????  apparently there is a lightening position you sit in when in the woods with no buildings and you sit on your life preservers.  If I get to go, we will be on the water the majority of the time up in Sudbury (there will probably be snow as it is far North).  Am I crazy?!?!?  lol...

as for my health.. I had some issues at the last trip.  They have a wellness cabin there with meds and medical person so I had no issues and although it was out in the woods, we were close to a hospital so I was not concerned.  It went really well, little bit of pain but could be managed with my meds.
I have not heard from the GI yet so I am assuming I can rule out any cancer.  One of the last things the GI clinical nurse told me and my support person was "maybe you have some type of rare cancer" which, btw, I think it really wrong to tell someone when they dont know.  I am going to call them today but a little nervous.  I didnt want to call before I left for the trip in case it was bad news.  I will let you know what they say (If I can get ahold of them that is..).  I do know the results from my motility test (first tube down my nose) showed that my esophagus isn't working properly... the motility.. not sure why... they never seem to have that answer... 

thanks everyone going to go catch up on what is going on with everyone now.. hope everyone is okay


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## DustyKat

Woohoo! Fab to hear all went well Wendy, even with the glitches! anda:

I hope you don't have to assume the position on the next trip! When is it and when do you know if you have a place? 

Good luck with the docs, I hope you can at least get some answers today...:goodluck:

Much love, :heart:
Dusty. xxxxxxxx


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## Keona

well... I didn't get to go on the camping trip before the big outward bound one because I was sick.  The outward bound one told me that I would be placed on a waiting list - which is okay.  I was a little disappointed but that is okay - it will give me a year to get all the gear and get ready.  Who knows..   It is all good.
I also did not win the I can achieve contest but that is okay too.  The process was fun.  Thanks everyone for participating  As for my health... it is up and down... The camping trip was over 3 hours away and there were a lot of people going so I couldn't imagine leaving when I had bathroom issues.. I would be asking to stop all the way up there. 

I just came to post a webiner if you have facebook.  It is an online lecture and discussion... the ones I have seen so far have been pretty informative (on other topics).. if you are not Canadian you might just need a Canadian postal code... 

here: http://www.ccfc.ca/site/c.ajIRK4NLL..._medium=social_media&utm_source=facebook-ccfc

Hope everyone is well


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## Dexky

Ah damn Wendy  I was hoping your absence was because you were off making happy memories.  I hope things start looking up for you soon.  You're just too interesting to be held down by some damn illness!!


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## Goldfish

Sorry you didn't win Wendy. Your champ on this forum!


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## Keona

Thanks you guys!  No worries about not winning... hard to compete with a 7 time cancer survivor and someone who opened a school in Cambodia.  Its all good...I learned throughout the process and felt a lot of encouragement   As for the camping trips...interesting how one door closes and one opens.  
I still haven't heard the results back from the Ct enterocolysis.  I was too nervous to call but now there has been some time I think I can assume there is nothing terribly wrong.  Although, it took them 4 months for them to tell me there was strictures and thickening of the bowel wall.  Calling on Monday.  I got a new position with the City Hall where I live so I hope I can keep this in check... my weight is crazy... up and down and people sometimes ask if Im sick... Im a little nervous about winter - I know I have read on here that it effects pain levels and I found the same with my hip and pelvic area.  Nothing has changed much except I have managed to manage the pain a little better with yoga and I do hop on the treadmill from time to time... 

time to go read up on how others are doing


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## DustyKat

Whoa, tough competition mate but good on you for having a go and you are still tops in my book! :applause: 

Congrats on the job! Woohoo...anda:anda:anda: 

Goodluck with your results hun. I hope they give you solid answers and not one of those namby pamby responses that leave you saying wha? :goodluck:

Dusty. xxx


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## Keona

Thanks Dusty   I think that is part of my delay in calling them.  Every time I do call them they make me feel worse... about everything... and no real help given.

Thanks Dusty... am happy with my new job.


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