So I was talking to Aunt D this evening and she mentioned that she had been to my blog this evening looking for an update, and there wasn’t one. *Hangs head in shame* Please forgive wonderful readers of mine. I was thinking this morning that I needed to do one, but for a lot of reasons, wasn’t sure about doing one at the time. I knew it needed to be done, actually one has needed to be done since Wednesday when I received information to use in this update, but I haven’t felt up to it, especially emotionally.

On Wednesday we had an appointment for E with his PCP. Actually I have quite the story to tell about this appointment. Each month at the end of his appointments we set up the appointment for the following month. Makes sense, right? Since federal law prohibits refills of the meds (other than tramadol) that he has been on, and since we are already there, we might as well make it. Especially since this doctor is only available a couple days each week, so his schedule fills fast, though he insists that he see E every 4 weeks so that he doesn’t run out of pain meds, and would have the schedule rearranged if necessary to do so. Well the regular receptionist at the clinic we are seen at had a baby in… late June I believe or it may have been mid July, I can’t remember now. Either way, although she is no longer on maternity leave, she isn’t in all the time… she generally leaves midway through the day for lunch and to take care of the baby. We had a lady we hadn’t seen before set up our appointment when we were there in August. And she set it up with us, then took care of payment and off we went. We didn’t receive a phone call Tuesday about E’s appointment, but thought maybe they were just really busy on Tuesday since it had been a holiday weekend. We arrived at the clinic Wednesday morning about 30 minutes before he was due to have his appointment, and he went and signed in. Our receptionist was there, and made sure she was remembering our last name correctly. After double checking she said “E, we don’t have you on the schedule.” Luckily I have a very smart husband and he had his appointment card with him. She told us they’d see us since she knows we drive between 30 and 60 minutes each way (dependent on traffic), and after seeing E’s appointment card she definitely wanted to make sure they saw us. We finally left the clinic over 2 hours after arriving. We had a short appointment with the doctor (not that they are ever very long anyway… unlike my appointments) and discussed how the meds were working. E had been on 30mg of morphine every 8 hours, and that worked the first two weeks he was on it, but the third week he had a substantial pain increase (as in, to the point he wasn’t at work for a few nights, with his nights off in the middle of them) so we weren’t sure what was going to be the next step. He was back to having his pain managed well enough the last week leading up to this appointment. The decision was made to try something else, none of us wanted the morphine dose upped any more than it already was, so the decision was to put E on the fentanyl patch. He’s now on day 2 of it, and didn’t have to even take tylenol tonight (the doc said that was the only acceptable pain med to take with those, as E is allergic to NSAIDs), so this may work, we shall see. If not we’re probably going with morphine every 8 hours and something for breakthrough pain, we will see. I’m grateful each month moves us closer to seeing the specialist, and I know E is as well. E’s PCP is as well, since he doesn’t like having to prescribe E the meds he is, but none of us know what else to do before we can get him in with an ortho surgeon.

While we were sitting around waiting I saw my PCP and asked to speak with him, on days that E’s PCP is there my PCP is in as a admin person rather than a healthcare provider, so I knew that unless he was in the middle of an office issue he’d be able to talk. He had a few free minutes, so we went to a hallway and spoke for a minute. I filled him in on my vomiting issue (mentioned in the post before this one) and the other things that I’ve noticed since I started doing a symptom diary, and we talked about it for a minute. He told me he wants me to see my rheumatologist and bring it up before he does anything with it, but that he has some ideas about what is possibly happening. I need to see my rheumy first to be sure it’s not lupus or med related. He also wants me to ask her if she wants to test for it, or if she wants him to take care of all the diagnostics. It is more up her normal things that she deals with, so we’re both hoping she’ll take point on this. If it’s not meds or lupus a big guess about what’s going on is Crohn’s. We shall see.

I have not managed to gain weight. Well that’s not entirely accurate… the scale indicated a bit of a weight increase for me, but since I was on my period it’s likely it was caused by some combination of bloat, inflammation and extra blood. I was either a pound or two heavier than when we were in there about a month ago. Hopefully I gain more weight before we go see my rheumy in a couple weeks, though at least at this weight I’m guaranteed she’s going to want testing done right away to find out why I can’t gain weight, and why I’ve dropped so much weight (I’ve dropped almost 25 lbs… and I’m skinny to begin with), if she doesn’t have the answer already.

On the stomach and digestive front. I have stopped vomiting, but I’ve also cut out having meat as often, or by itself. I now have it in sandwiches when I have it, generally with mayo and cheese. I have noticed a few more symptoms since I started charting things. For one, although I don’t have the diarrhea that Crohn’s can cause (does cause?) I have bowel movements within a few hours (at most) of eating any meat (and the last times I vomited I was having issues with both ends at the same time… I just hadn’t thought about it as significant at the time) and that’s a huge difference for me, as I am on two different meds (one constantly, one as needed) that plug me up quite a bit. Of course since nothing was making it’s way into my intestines and out that end until everything was coming up the other way as well I hadn’t thought about that fact when I first started having the issues. I’m running out of things to eat because since meat is lower on things to eat I’m having more of other foods, including dairy foods. I am severely lactose intolerant, though I have meds that help a great deal with it. Today my choices were dairy or meat as far as what sounded good, and I didn’t want to spend my time terribly ill again, so I went with dairy. I had enough dairy to almost counteract my meds, and ended up miserable anyway… though at least it was just stomach cramping.
I’m now looking at my list of symptoms I’ve been noticing that are GI related. Vomiting (thankfully that has stopped as I changed my diet), severe fatigue related to the vomiting, lack of digestion (when I was vomiting everything was coming back up looking almost identical to how it must have looked when I ate it, and I’m not sure how much things are being digested and absorbed even now), gurgling/nausea after foods containing even small amounts of meat, frequent bowel movements (and as I’m coming off the pain meds and am down to just one med consistently that can cause constipation they are softening some), and a lot of left side abdominal pain, which I’ve always put off as endo, but which I’ve dealt with for the last few years…. the rest of this has come on suddenly, the left side pain hasn’t… I don’t know if it was an early warning sign, endo, or something else. However, it’s certainly related to my meat eating, and to BMs. 😦

I know I had more to update on, but I can’t remember what and I’m pretty tired, so I will try to update again soon. I got the important things out with this post.

I hope everyone else is doing well!!
J

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