Medical Updates

So…last Wednesday I saw my primary care doc.  He looked at stoma site (tube insertion point into abdomen) and excused himself to go call plastic surgeon while I waited.  Came back in and said that plastic surgeon wants to see me next day.  He also commented that the plastic surgeon told him that he had practically tortured me with last treatment.  Glad to know it wasn’t my imagination.

Thursday – early morning iron infusion then B12 shot and then off to see the plastic surgeon – I really dislike days where all my freedom time is spent with medical appointments.

When the plastic surgeon came into exam room, I asked if I could ask a couple of questions before he “got started”.  He quipped back “That was one.”  “Fine” I replied “I would like to ask 3 questions.”  I am sure he was trying to build rapport with me but it seemed a little snarky to me.  I point blank asked him about the issue of the loose skin around the stoma site as one of the contributing factors to continuing irritation.  I asked if the risk of infection was too high to consider the long-term reduction of continued irritation if surgery is performed.  He said the risk was not too high and that he could reduce some of the skin/irritation.

I then told him that, while I appreciate his desire to address the tissue granulation with an aggressive treatment plan, I would appreciate it if he would not forget that I am attached to the stoma site.   I couldn’t help the quaver in my voice and the tears that from no where.  He asked if it had helped at all and I honestly told him that the pain had increased rather than decreasing.  I told him that the pain was severely limiting my already limited activities and that I would rather go with a less aggressive but more frequent treatment with primary care doc if this was the continued recommended treatment.  My comments seemed to startle the doc (and the interns in the room) and he assured me that he was aware that I was connected to the stoma but that he would keep this in mind.  He even said that he would not be doing silver nitrate at this visit due to the high level of pain that was still present.

He then looked at the stoma site and made the comment that it appears that the aggressive treatment was just pissing off my tissue rather than improving matters.  He then said he was going to see if a particular colleague was available to come take a look at the stoma and offer some suggestions.  He told one of the interns to stay with me.  Had a nice chat with the young man.  Joked with him that he would have to lose a lot of his personality to become a surgeon.  He agreed that the average surgeon does seem a bit “reserved”.   He also said that the doc being consulted was unlike any other surgeon and I would be rethinking the “surgeon personality” after meeting him.

About 10 minutes later he returned with another doc.  I would say that it was a breath of fresh air walking into the room.  New doc came over and expressed empathy and concern (before even looking at stoma).  He asked me how I was holding up (damn, couldn’t stop more tears from leaking out.  Why does anyone asking me how I am holding up, it makes me cry?).  He put his hand on my shoulder and assured me that he would help.  Plastic surgeon told him that he had promised not to do silver nitrate at this exam.  New doc maintained eye contact with me and assured me as well that he would not do silver nitrate either.  He then examined the stoma.

New doc asked who put in tube and wanted to know if it was original tube.  I explained that tube had been replaced a few months ago and the ER doc put in a larger size.  New doc wanted to know if original surgeon was involved in treatment and when I said that original surgeon states that he only puts the tubes in, he doesn’t maintain them; plastic surgeon made a slightly snarky comment and was given a reprimanding eye glare from new doc.  I got the distinct impression that there is an ongoing animosity between plastic surgeon and original surgeon.

New doc said tube was still too small for size of tube channel and that this looseness was irritating channel and allowing bile to enter channel (the ooze that I had been told was normal by original surgeon).  The fluids were further irritating channel tissue.  New doc then suggests a new tube that will fit better and he can do it while I am there.  Wow!

If you have never had a j-tube removed, it is one of the weirdest sensations ever.  It is like that stomach flop that happens on an elevator times 100.  New doc did say that the pain would be about the same for inserting as it would for injecting the pain medication.  Remembering the previous painful injections, I told him I was willing to tolerate the insertion pain.   Whoa…because of irritated tissue, inserting the snugger tube was more than just a little painful.  Not sure if I made the right choice.  New doc said that he would be taking over my care and that he wanted to see me in one week.  He told nurse to let scheduling know to find room in his schedule to see me.

My new j-tube is RED.  It has taken a little getting used to the color….first time I went to hook up I had a little “gleep” moment thinking I was bleeding.  I have noticed a slight reduction in the amount of fluid at stoma.  It is still very present and still looks like infected pus (I know gross…trust me even more gross in person) but quantity of fluid reduced.  There has also been a slight reduction in the overall stoma site pain.  The pain is almost always present (except when I am reclined and not moving a muscle…not even to blink) but it has dropped from a base of 8 to a base of 7 with some moments dropping to 6.  Today it is back up to an 8 (I think due to my activity while running a couple of  errands this morning – that and the fact that I kept dropping keys and such  and had to get in/out of car several times).   I am taking it really easy rest of the day hoping it will drop back down tomorrow.

I am very pleased with the new doc’s manner.  Just the perfect blend of compassion and professionalism.  Since he is one of the senior docs, he also has a lot of experience.  I am not dreading Thursday’s appointment quite as much now that he will be in charge.  Amazing how a little warmth and compassion makes the medicine go down easier.   While I am still convinced that there is a “surgeon personality”, I am willing to concede that there are some surgeons who have escaped the damaging effects.

[oh,  for those wondering….yes, I did check and, unfortunately, new doc (who is in ideal age range) was sporting a wedding ring.  I think I would much rather keep him as treating doc…be still my throbbing stoma (hahahaha)