One step forward, two back…

I cannot believe it has been over a month since I last updated….I kept putting it off waiting until I had some good news to report.  I am going to do my best before the end of this blog post to come up with something positive to report.

I hope you aren’t expecting a chronological catch-up blog post…I am not in the mood to tax my brain enough to put it all in order.  I am going to just let it flow as it goes.

Last Wednesday (23rd?) I had outpatient surgery.  The surgeon cleaned out the tube track to remove the ongoing growth of scar tissue.  He also replaced the standard catheter with a button catheter.  He said he felt it would solve all problems with pain and scar tissue growth.  Never mind, that a few months ago, it was determined that a button tube wouldn’t work with my type of track.   Also, my tube site is different from the above links…my stoma is above and to the left of my bellybutton and has a larger entrance than shown in pics.

Well the button kept tilting into stoma sideways and did not lay flat on skin surface as the pics show.  In fact, since they had to compress the distance from the surface of the skin to the intestinal track, the button was actually being pulled down into stoma.  By Monday (April 2nd) when I returned for a surgical followup, the stoma site was very irritated and bleeding.  The deep muscle pain was also still present.  The surgeon deflated the balloon (it anchors the tube inside the intestinal track) – pulled the tube out a little, inflated the balloon and observed the button being pulled back in.  During this activity, I was about to go balistic on the exam table due to the incredible pain.  He ended up leaving the balloon deflated and suggesting I try it for another week before additional options are considered.  I think the only option is to remove it and put the old type back in and deal with the scar tissue as needed.

I have yet to find anything positive to say about this button attachment.  I can’t figure out how to cover it adequately (it oozes and bleeds and leaks) and yet have it available for use.  I can’t wear the abdominal support because it puts pressure on button.  I can’t drain bile via tube (like old tube) which means more nausea and vomiting of bile.  Button tube extension doesn’t flush clean and insurance only allows for two extensions per month which is just gross.  Without balloon there is no decent way to anchor tube and secure and I have had it slip out twice since 3pm yesterday.  I know how to put it back in but EWWWWWW I hate doing this.  Reinserting also causes a lot of bleeding and pain.  Damn button.  Speaking of the tube extension – it keeps kinking causing the pump alarm to go off and I have to keep readjusting how I am sitting/moving.  The only way to prevent the kinking is to lay flat on back (which causes bile backup) and not move.  [Anyone else got that song going through your head “she’s a really kinky girl…the kind you don’t take home to mother….”?]

I am going to be hard pressed to hold out until my next visit with surgeon – scheduled for next Monday at 3pm.

——

Some of you will be amused; others will be shocked when I share with you some of the not-so-great moments in medicine.

Moment 1: (things you don’t want your surgeon to ask just before surgery) “I can’t remember, did last surgeon remove part of your stomach or all of it?   It wasn’t a confidence boosting moment.

Moment 2: (surgeon’s nurse) “You look good today, are you eating and drinking normally now that the surgery has been done?”

Moment 3: (surgeon during followup exam) “I don’t remember you mentioning that you were experiencing pain before.” Gee whiz doc…why the hell do you think I am here????  I didn’t have surgery because it was FUN and I was bored and had nothing better to do.

Moment 4: (surgeon during followup exam and after discussion regarding pain) “Maybe you could see a pain specialist to get some type of shot.”    Wow doc, that didn’t dawn on you BEFORE surgery?  Pain medication – what a novel idea (MY SARCASM-OVERLOADED BRAIN SCREAMS SILENTLY WHILE VISIONS OF SHOOTING THE DOC DANCE THROUGH MY HEAD)

Moment 5: (telephone conversation with surgical nurse morning before surgery)

Nurse:  No eating/drinking after 8pm

Me:  I use j-tube (nothing orally) – should I stop at 8pm

Nurse:  As long as you don’t eat or drink via mouth you should be fine – the doctor just wants your intestinal track empty

Me:  The feeding tube goes into small intestine with formula for nutrition

Nurse:  As long as you don’t eat/drink anything

Me:  Can you double check just to be sure

Nurse:  hold on

Nurse:  stop feeding pump at 8pm.  But you can drink water until midnight – just don’t put any in your feeding tube.

Me:  (bangs head against wall)

Last but certainly not least…

Moment 6:  (telephone conversation with pre-surgical admitting)

Woman:  Previous surgery

Me:  Total gastrectomy in Jan 2010

Woman:  Gastrectomy….[she sounded hesitant/confused]…was this for flatulence?

Me:  [after pause while I picked up my jaw from floor] Yes, my farts don’t smell at all now.

Woman:  Oh….um….okay.   [she then went on to next question]

(I know, I know – I am doomed to spend eternity in hell)

———–

Positive comment – I did think of one thing I liked.  I liked the goofy way I felt after I received the injection of valium just before surgery.   I felt more “liquified” rather than simply “relaxed”.  I liked that feeling…I liked it a lot.