>----- Original Message -----
From: "Jo Eslick" <joanne@bombobeach.com>
To: "Multiple recipients of list ADHESIONS"
<adhesions@mail.medispecialty.com>
Sent: Saturday, November 09, 2002 6:41 AM
Subject: Defecating Proctogram and Small Bowel Series
> Hello to all my friends and family on the IAS board....
>
> Yes it has been a while since my last visit, things have been pretty
> "upsidedown" for me here in the "land downunder" and I have had my share
> of invasive tests and the loss of another chunk of dignity.
>
> I thought it would be easier for me to just post the same message that I
> have on bombo's message board (in the online journal section). If you
> have any questions or comments I will be happy to answer them, just send
> me an email to joanne@bombobeach.com OR post a message here or on
> bombo's message board.
>
> I also have spoken to Sally Grigg since her return from Germany & she
> sounds FANTASTIC!! It was so wonderful to hear her sound so "up" and
> positive and she has a new bundle of energy! There is still some healing
> to do but overall she is thrilled with the results and it is nice to
> have a friend to share success stories about SprayGel, they also used
> six kits of SprayGel in her... the same number as used in me.
>
> While my surgery was a success in terms of getting rid of adhesions, I
> do have some permanent damage and the story I am posting now describes
> my experiences for just one day!! If you would like to know more about
> what is happening, visit http://www.bombobeach.com go to the message board,
> click on the heading "Online Journal" and you will find "Jo's Journal"
> hopefully that will help to answer some of your questions too.
>
> Yesterday was one of those days (Friday 8 November) where I can honestly
> say as informed, educated and determined I am to always be in control;
> of my medical situations and my treatments etc, yesterday challenged me
> greatly. The environment was very familiar to me as I have been a
> patient in this hospital several times just this year and I have been an
> out patient of the Endo/Gyn clinic since September last year. So when
> we stepped into the hospital foyer and I started to feel those familiar
> acrobats started up in my stomach, I knew that today was going to be
> difficult.
>
> Already running late due to unusually heavy traffic from Bathurst in the
> Central West of New South Wales into the city of Sydney we arrived, hot,
> harassed and already stressed.
>
> Before I go any further with my journal entry I want to thank YOU I
> could feel everyone around me yesterday, I really needed all of your
> positive energy coming my way....
>
> I am ok, I am still in a bit of pain from yesterday but not feeling
> quite as "woe is me" as last night, it was a very draining and emotional
> day & I had myself one of my rare "pity parties."
>
> I haven't got the results of the bowel tests yet, all I know is that
> every test I have done for my bowel has taken "longer than the usual"...
> The first test I had was a "defecating proctogram" no it is unpleasant
> and I was supposed to use a suppository an hour before arriving at 9am
> for the test... but the traffic was shocking & even though we left home
> at 5am, we didn't arrive at the hospital until after 9:30am!!
>
> So it was a long and arduous trip down, didn't do the suppository anyway
> I told the receptionist that I had used a Pico prep & then a Glico prep
> (both all our favourite bowel preps [NOT]) day before yesterday, so I
> said I was pretty sure there wasn't anything down "below" to get rid of
> anyway.
>
> Yes, we were late but everyone was great, because they knew the
> distances etc that we might not be arriving on time etc & everyone
> including Prof. Millard was very accommodating, so I had the
> "proctogram" first.
>
> So after changing into one of those attractive "gowns" I went into the
> x-ray room where thankfully Shane was waiting for me. I had to firstly
> lie on your side on the x-ray table. I was shaking pretty badly, and
> Shane was right there with me, holding my hand and reassuring me that it
> was ok. I haven't felt this vulnerable for a long time and the feelings
> really took me by surprise.
>
> It might have been due to the weeklong Colon Transit Study last week,
> traveling back and forth to Orange a forty minute drive from our home
> caused great pain and discomfort for both Shane and I.
>
> We were both VERY relieved to see the end of that particular week.
> Eighty minutes traveling for fifteen minutes at the Nuclear Medicine
> Radiologist's to take two x-rays everyday made it difficult for us to
> function for the rest of each day and we did the bare minimum to get us
> through that week.
>
> So, Shane said firstly the doctor inserted a hose into my rectum &
> filled me with air then he filled three huge syringes with the barium,
> that is way thicker than the stuff you drink.
>
> Then I had to sit on like a "portaloo" thing that was see through, it
> was sitting on the x-ray table. Once they had me positioned and the
> x-ray machine looking at the right area, I was asked to clench my anus,
> then relax it the whole time Shane could see what the doctors could see
> on the monitor, he said the only time my muscles moved was when I did
> the clenching.
>
> When I had to then "defecate" the barium, I couldn't do it so then he
> said do whatever you normally do to go.... so I pushed & strained, I
> couldn't feel anything coming out, but Shane said it was coming out ok.
>
> I got to a point where I just couldn't get rid of any more and so the
> doctor asked me to go and use the normal toilet to see if I could get
> rid of any more of the barium. I got rid of about two tablespoonfuls at
> the most, that was it. Once they helped me get positioned I had to try
> again and as much as I pushed and strained, I could get rid of any more.
> Once it was shown that I had lost the ability to "move" anymore on my
> own, he said that was it, I was finished
>
> Oh this was only the start of my misery yesterday, the small bowel
> series starts with drinking a cup & a half of this chalky barium
> contrast stuff, as quickly as possible so that it all goes through
> together as much as possible. Once I drank it I had to lay on the x-ray
> table on my right side to assist the barium to empty through my stomach
> and into the bowel. The first x-ray was taken about 15 minutes after
> the "drink" then she went away to check if it came out ok. She came
> back in & said you are still showing contrast from the other end (the
> proctogram earlier), and could I go to the toilet & see if I could get
> rid of it... I went to the toilet & I passed a little wind, no barium,
> I was starting to feel a little nervous and worried.
>
> The test took a lot longer than most people who have to have this done
> and I was also booked into see Prof. Millard (Urologist) at midday.
> Well midday came & went & at 12:45 pm they said, we are sorry, this is
> going through slower than expected it will be at least another hour!!
>
> I asked them to ring his rooms (only 3 suites away thank GOD) and they
> said fine, they would just fit me in between other patients so I had a
> few more x-rays done while on my stomach and by this time yes I was in
> pain & crying a little. The technician came back in & said the doctor
> had to take some final x-rays of my stomach & said that Shane had to
> leave the room (I don't think they wanted him to see how much this was
> hurting me).
>
> IT WAS AWEFUL
>
> They press this sandwich like x-ray machine down on your abdomen & the
> doctor took these pictures and had me roll left & right so he could hit
> particular spots, which were all the places that hurt like HELL!
> Thankfully I had my oxycodone with me & I was allowed to self medicate,
> so I took 20 mg before the start of the "sandwich" part (Thank goodness
> I did!)
>
> When he finished he was lovely & gave my arm a bit of a squeeze & said
> it's all over now... I am sorry that was so uncomfortable but it's the
> only way to get the pictures we need
>
> Shane was fixing up the paperwork at reception, I went back to the
> little change room & basically crumpled & just cried & cried, I was so
> miserable, in pain, distress, tired & wanted to be a little kid just
> getting cuddles & petted, I didn't want to be an adult all at that
> point. The technician ended up knocking on the door and asking if I was
> ok, I had managed to dress again by then & was fixing my hair a bit
> trying to pull myself back together before walking back out to reception
>
> Anyway then it was a dash around the corner to the prof's rooms he took
> one patient in while I was filling out paperwork. I still hadn't eaten
> anything since breakfast (I am diabetic Type 2), just before we left
> yesterday morning, I could feel a hypo coming on & thankfully had my
> machine with me and so I checked my sugar levels.
>
> Shane dashed out to the canteen & got me a packet of jellybeans to tide
> me over until I could eat something, I only needed half a dozen & then I
> felt ok, the shakes passed...
>
> Finally I got into see the Professor & by this time it was after 2:30pm
> he had the results of my urodynamics test from March and was checking
> all my answers to a questionnaire I had to fill out...
>
> After reviewing my answers to a questionairre I filled out earlier and
> quite a few additional questions and talking about all my surgeries
> since February 2000, anyway final bodily insult of the day... the
> dreaded "internal."
>
> I peeled off my clothes for the third time that day & climbed up onto
> the table (when I was telling Anthea & Nancy this story earlier today
> Nancy suggested I was turning into an exhibitionist! Not by choice Nancy
> my friend, not by choice!!
>
> I have to say he was VERY gentle I appreciated that VERY much after
> everything I had been through... anyway he was feeling around, things
> were fine & then he went up and found this spot that lifted me clear off
> the table!
>
> Then he asked if that was the pain that made me have the "urgency" to go
> to the toilet & I said yes, so then he felt a few other places & said so
> this, this or this doesn't hurt and I said yep, when he went down I said
> just pressure & a bit uncomfortable on my anus, and he said yes that's
> right.
>
> He went straight back up & said but when we get here I lifted off the
> table again he said that's the sensitive spot, right?? Naturally I
> responded squeakily YES!!
>
> It turns out that when we have surgery & have a catheter in for more
> than 24hours, in "some people" (which naturally always includes me) the
> catheter irritates the internal lining of the bladder and it becomes
> damaged.
>
> He explained the only way to fix it is day surgery he said it takes SIX
> WEEKS for it to heal & a new lining to grow & he said YES it is painful
> Well he said that it MIGHT have to be done twice & providing I don't
> have catheters in again longer than 24 hours it should, SHOULD be ok, so
> I cried buckets & was pretty much shaking and was a bit of a blubbering
> mess.
>
> I really TRUST this doctor, he is like Jason, he KNEW just from how I
> described my symptoms etc what was wrong with me, the internal was to
> simply verify his diagnosis. Only my urgency problems that mean I might
> get to sleep for more than two hours at a time from after the surgery &
> it's healed... will be fixed.
>
> You see I had been clinging onto this thin thread of a possibility that
> the self-cathetrisation could be done away with what upset me the most
> about that consultation was his conformation that catheters would be a
> part of my daily routine for the rest of my life.
>
> No, surgery can't fix it and I know that bowel & bladder problems are
> closely linked.... because several muscles are used for both defecating
> & emptying the bladder. So, I KNOW that really, my bladder problems
> have only just begun & I am going to have a long relationship with Prof.
> Millard...
>
> My bowel specialist suspects, that vital nerves were damaged during that
> horrendous operation (hysterectomy). Shane told me that apart from my
> anus, NOTHING else moved during the whole test (The earlier proctogram),
> So I guess the bottom line so far catheters are my friends for life and
> as for my bowel, I will have to wait and see what the results of the
> tests are and what the bowel specialist recommends.
>
> That's what rocked me more than anything yesterday, because until then,
> there was still a crack in that window.... but Prof. slammed it shut,
> as he should.... need to face up to it & get on with it.
>
> I think about the "rest of my life" bit that really hits, I am only 39 &
> have more health problems than my 65 yr old Mother!
>
> The bowel thing.... well there is this funny feeling in the pit of my
> stomach about that... I am just honestly not sure how much more I can
> cope with right now.
>
> If George says he recommends the bag.... I truly can't tell you what my
> reaction or response to it will be. (He mentioned it as a possibility
> during our recent consultation).
> It scares me to death though I will admit that & every time Shane looked
> directly into my eyes yesterday, I could see his pain for me... I could
> see him struggling to hold it together so he could be there for me to
> lean on while he was being torn apart himself...
>
> I just love him so much & I HATE it that he is hurting for me I HATE it
> that I am putting him through this & I HATE it that the car accident
> happened and put us under so much pressure, we both feel as though we
> are going to burst... he is struggling with incredible pain himself but
> he is pushing it aside for me!
>
> Nancy and Anthea said they wished they could be here with me today and I
> appreciate their sentiment so much but I wouldn't even let Annie call me
> on the phone, I am not ready to face anyone outside the family yet. I
> know I feel the same way about all of you so often I read your messages
> on the board and the private emails you send me... so especially now
> that I have all these great doctors to help me while so many of you are
> struggling along on your own... (I expressed this feeling with Anthea
> and Nancy too).
>
> Sometimes it makes me feel pretty selfish about it all especially when I
> talk to my friends like Browkenwing, Nancy Anthea, Millie and so many
> others.... all struggling the whole time I have known them.... Some of
> them I have known since before my last three major surgeries! So many of
> you can't seem to find a decent doctor to help you find a reasonable
> pain management doctor let alone a family doctor to help and support you
> and at least make sure you have enough pain medication or support to
> help you live with at least some comfort once in a while!!
>
> I can't believe what bombo has given me since I started it... and I
> always feel humbled but good when I get letters or read messages that
> say bombo has helped someone else too.... I am so thrilled that I can
> share my beach with ALL of YOU.... I just wish we could ALL take a
> stroll along it TOETHER just once, the REAL beach...
>
> That's why I called it bombobeach.com, because I wanted to share
> something with all of you, bombo has always been a haven for me given me
> comfort and helped me find peace during stressful times and particularly
> bad pain attacks. The point is bombo is hope, peace, friendship, faith,
> passion, helping yourself, education... all the things I try and use to
> help me cope in a crisis. Like the one I am having now. It is bombo I
> have turned to last night and most of today to find comfort and support
> from YOU all of my ARD family and wonderful special friends. I have
> walked along bombo in my mind, drawing on my store of happy memories of
> an awesome, strong and breathtakingly beautiful. Yes it has calmed me,
> as writing this now and talking with Annie, Nancy and Anthea today on
> msn messenger.
>
> I have been torn emotionally today between grieving for the loss of a
> fully functional bladder and for the still "unknown" problems with my
> bowel. I was beating myself up as we drove home from Sydney late
> yesterday and then last night as I chatted with Kanga and this morning
> before talking to Annie.
>
> I know that there are those of us in our ARD family who face bigger
> daily challenges, but sweet Annie reminded me about my own advice, our
> own pain & allowing ourselves to grieve for what is lost and must be
> endured. I am scarred about what else this could lead to, although I
> don't intend to waste time thinking about it too much, I have to admit
> yesterday afternoon after the whole ordeal was over & we finally sat
> down to eat.... I was devastated and I still can't think about it or
> write about it without the tears just spilling out of their own accord!
>
> I don't have adhesions anymore BUT they were there long enough to do
> some damage and the true consequences of my Hysterectomy are only just
> now coming to light. I think that is what has hit me so hard, I keep
> feeling guilty, because I almost died during that surgery but I did
> survive and I have survived countless other invasive procedures and
> major surgeries since then. The thought of facing still more is a
> little daunting and depressing. The guilt comes from feeling as though
> I have been cheated even though I AM alive... sweet Annie has told me
> that I do need to grieve & feel sorry for myself for a while.... the
> trick is not to let it go on too long right??
>
> Thank you for your thoughts, prayers, messages and email, I love you all
> and I will do whatever I can to love & support you no matter how great
> the distance between us.
>
> With love & warm gentle hugs,
> Jo
>
> --
> Joanne Eslick
> Founder Australian Adhesions Support Group
> http://www.bombobeach.com
> NSW Australian Co-ordinator of
> International Adhesions Society
> http://www.adhesions.org
>
> --
> I am not a medical person, and all my messages are based
> on personal experience. I am a fellow adhesions sufferer
> reaching out to help others.
>