Defecating Proctogram and Small Bowel Series

From: Jo Eslick (joanne@bombobeach.com)
Sat Nov 9 04:37:54 2002


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.

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