Posted 12/4/2016 11:39 PM (GMT -6)
Hello all :)
So, I've been lurking around these past 2 weeks, and I apologize for not giving support in various posts. I'll do better, I promise, because I emphasize and sympathize with all of you.
These past 2 months have been difficult. I'm beyond frustrated because I think I finally have control of a situation, and then my body essentially laughs at me and lets me know who's really in control.
A good bit ago I posted about pain around my feeding tube site, and that the leaking stomach acid results in pain that's hard to get a handle on. I had a gi appointment and ended up taking a field trip off to the hospital. Luckily it was a direct admit so I didn't have to hang out in the ER and people watch (always a fun activity.). Spent about a week inpatient for IV antibiotics for an infection, and pain control. I was hoping after I was discharged, things would begin to settle down. It's always good to dream big, right?
A few weeks, the left side on my jaw began killing me. The right side wants to be in on the action, too. Called and spoke to my pain doc and he fit me in for injections from my forehead down to my chin, 3 on each side, using fluoroscope to make sure he was in the right areas. It twas pretty cool to watch on the screen. Sadly, I didn't get much relief from the injections, so the surgeon up at MCV(medical college of Virginia) wanted me to drive up there, a 3hr drive. They have a type of scanner that is not available down here. He was able to see bone growing up tendons on each side. They are beginning to put pressure on the metal joints which, is obviously not good. I’ll return on the 16th for surgery to remove the heterotrophic bone. I was told to expect to be inpatient for a week. Thankfully, the jaw doc puts in for a pain management consult after each surgery.
Tomorrow I have an appointment to place a new feeding tube. The part of the tube that is supposed to bypass to stomach has coiled out of place. To try and prevent this from happening again, the tube will be stitched along my stomach wall and into the small intestines. Hopefully, the tube will stay in place longer than 2 months. I’m running out of places to have the tubed placed. Each surgery results in more scar tissue. I will also botox injections in the esophagus to help relax the severe spasms.
Lastly, I’ve had multiple appointments and consults with gi docs an surgeons. My local crew referred down to Duke, and Duke sent me to Wake Forest. Wake has one of the best gi departments in the country, so the rest of my posse really wanted their opinion. Basically, I have to have some sort of surgery to help with my whole gi system, there’s really no way around it. The two options that are on the table are both serious and have the potential to have pretty major complications. WF concurs with both plans, and I’m incredibly stressed about the whole situation. 3 medical systems are recommending the same options, so at least I feel confident in the fact that many eyes and brains have read through my chart novel.
Regardless of any one of the issues, pain plays a huge part of day to day life. I have a lot of wiggle room when it comes to my meds, but of course, no meds can take pain completely away. I’m trying hard to not increase the Fentanyl dose, but it might happen. The valium dose had been increased to help with the majorly strong muscles around the implants.
Honestly, I feel like I’m trapped in a room, and any way out has pretty significant consequences. I hurt, a lot, and it’s scary to know that this fact will never change. I know you guys get it, and I hate it for all of us.
So-here’s a fact that my pain doc and I discussed. Since I have many many procedures, I’ve been aggressively decreasing med doses. He pulled up multiple articles from journals where it was discussed that med tolerance can take up to a year to totally resolve-that’s crazy!
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD, dysphagia(unable to swallow correctly)