Catching Up Part 2

I took a break from doctors for the month of December after a disappointing follow up appointment with Dr. Robinson, my gastro. Both parties were disappointed at the appointment – he with me because I had not done TPN (IV feeding) and me with him because he didn’t have anything to offer me. I knew going in to the appointment that there is no miracle drug that will help with my overactive bowel, but I was hoping for some useful suggestions. He seemed stuck on the TPN and I have decided this was not the route I wanted to take. Dr. R thought that if I gained a few pounds that it might be enough to supply some much needed nutrients to my intestines and jump start them into functioning properly. While I agreed with the logic, I disagreed with the thought of TPN.

It would mean 12 hour infusions several nights a week (I had already talked him out of every day infusions). These nightly hook ups would start as early as 7pm curtailing any evening social life, the possibility of infections was a given, and last but most important, it would mean no full nights sleep for either Pat or me. I’d have to get up to go as much as 5 or 6 times a night, maneuvering a pole and not strangling myself or Pat with the tubing. It was not a decision I came to easily, but one that Pat and I agonized over for weeks. After weighing the pros and cons, I reached the conclusion that TPN would definitely affect my Quality of Life. We long ago reached the decision that Quality was more important than Quantity and Dr. Robinson just didn’t know me well enough. He made a comment along the lines that I was playing 2 doctors against one another and that I had already made up my mind on what course of action I wanted to take. This was said after I asked him about “Sandostatin” the injectable medication that I was on during my Erbitux treatments. I wondered aloud as to whether or not this would be worth trying. Dr. R said he didn’t think it would be effective and that he personally was hesitant to prescribe it. I can’t recall right now what his reasons were, but they were enough to convince me that I really didn’t want to be a pin cushion again.

So at the end of this very frustrating appointment, we outlined the plan:
1. I would take a few more weeks to try to gain weight without TPN and we’d revisit the subject at my next appointment in January.
2. I would continue to take my medications on a regular schedule to keep the diarrhea under control. (That would be Kaopectate, Diluted Tincture of Opium, and Apple Pectin…quite the combo).
3. I would talk to Dr. Nauta about starting Sandostatin injections. Huh?
Wait a minute, Dr. R doesn’t think Sandostatin will work; he convinced me of this, yet all of sudden he is telling me that I am going to do them under the care of another doctor. I never asked this, never considered it and was more than willing to let the mater rest after getting Dr. R’s opinion. Pat quickly jumped in and said “No, per the conversation we had 15 minutes ago, we won’t be pursuing Sandostatin. We just wanted your input about it.”

So needless to say I walked out of that appointment in tears. This doc was really getting to me, but he was my only hope. I know that I can be quick to judge and to hear only what I want to, but in this case I really was willing to do whatever he suggested as long as it has the possibility of decreasing my diarrhea. Somehow I think it got lost in our appointments that my initial reason for seeking him out was that I heard he would be the best for helping control (not CURE) my diarrhea. He seemed to think I was there because I wanted to gain weight. Well yea I did, but what I REALLY wanted was to go to the bathroom fewer than 20 times a day.

Oh and time for a quick rant – has anyone tried to find Kaopectate in pill form lately? It’s near impossible – the liquid is still out there but pills? No dice. Liquid form works a little quicker but
1) It tastes like liquid chalk (I know this because as child I used to be curious about what chalk tasted like; (I think there used to be a commercial on TV that showed chalk soaked in some sort of liquid and it made me curious) so I tried to eat chalk).
2) The bottle is big and bulky and not easy to slip into a purse or take on a plane
3) Pills are more discreet when taking them in public
So it turns out the one drug store that still carries the pills is Brooks. Have I mentioned that I am really impressed with the customer service at Brooks and that have bent over backwards to help me out? In early November I tried to refill my DTO (diluted tincture of opium) and codeine prescriptions for the first time since moving to Holliston at both CVS and Walgreens. Neither were able to obtain the medication from their distributors and one pharmicist had no idea what it was and had to look it up. At both stores I heard the pharmacists mutter something about DTO being an old fashioned remedy that no one prescribed anymore and then proceeded to treat me like I had drug seeking behavior. One even went so far as to suggest I ask my doctor to consider something a little less “addicting”. At wits end I finally called Joe the pharmacist from Brooks in Somerville. He not only filled the present script for me, when I explained what had happened and that I now lived an hour away, and broke down in tears, he took pity on me. He located a Brooks in the town next to Holliston where they could view my 8 year prescription history with Brooks. Joe called the pharmacist at the Medway store explained my situation and told her that I would be in the following month for a refill. Two refills later, the pharmacist in Medway knows me, keeps DTO in stock for me and has been wonderful. So I’ve switched back to Brooks even though it’s not the most convenient, it definitely has the best customer service of any of the drug store chains. And they are the only ones to have Kaopectate caplets on their shelves which I buy each time I am there, to tide me over until my next order from drugstore.com comes in. They come in a box of 20, and I take 12 pills a day, do the math…

Now it’s the beginning of February and I have not yet seen Dr. Robinson. Mostly because I decided that he didn’t want to help me so there was no point in going forward with him. Then tow weeks ago the nutrionist from his office called to “check in”. I ended up talking to her for a good 30 minutes during which time I told her that I felt that Dr. Robinson didn’t want me as a patient and so I decided for now to suffer and keep taking my meds and playing with my diet. Fortunately she lent me the sympathetic ear that I needed and by the end of our conversation I decided to go see Dr. R one more time. And the good news is that I will go in to his office weighing 7 pounds more than I did the last time I was there – weight that I gained ON MY OWN, without TPN! Guess all the Christmas cookies paid off. I feel better and have a little more energy, am making a few less trips per day to the loo, have had fewer “emergencies” and spent less time on my sitz bath. So there will be no misunderstanding when I walk into his office again, my agenda is to decrease those bathroom visits to fewer than 15 per day and not to gain weight. I’m quite happy at my current size, I have clothes that fit and I like the way my jeans look (though it has become apparent that I need to return to the gym and get some tone…) Pat and Dr. Lange both feel I should have a few more pounds - a cushion per se, for my next recurrence. We’ll work on it. But first we want to get me down to less than 1 roll of Charmin Ultra per day.

I have an appointment with Dr. Robinson next week. February is looking like a busy month of doctor appointments for me, but I’m getting the hang of multi-scheduling so that I don’t have to drive back and forth to Cambridge more than once per week. I must admit I haven’t missed that drive these past few weeks. It was a well deserved break.

Still more to add, but I’ll wrap for now.

Posted by jean at February 7, 2007 09:10 PM