Posted 2/23/2016 9:54 PM (GMT -7)
Had my 2 week post surgery checkup.
I've been a bit frustrated since the surgery. Last week I was given the green light to begin eating super mushy and soft food. Sounds exciting, right? I was hoping that I would be able to actually swallow food. Apparently, that was to much to wish for :( Food is still becoming stuck in the same area of my throat. When I say food, I mean 3 bites of mac and cheese, or a few bites of mashed potatoes. By the 3rd bite, my throat spasms, nothing can move down into the stomach. This requires me to have to cough up the few bites. It feels the same way when you have to throw up, but the food just isn't that far down. The spasms continue until everything is out. A few days ago I had french onion soup, did not eat the cheese, and ate a few bites of the drenched bread(which the Dr had recommended). At the restaurant, I had to visit the bathroom 3 times, to try and bring up the trapped food. On the way home, I had to pull over twice into a parking lot, and continue to bring up the bites, as the spasms continued. These spasms aren't just frustrating, they really really hurt. Coughing up the bites kill the jaw with it's limiting opening, but I have to continue to try and bring up the food, otherwise the throat pain increases and increases. It's like a kink in a hose, the pressure builds and builds, until something has to give.
SO-all in all, not very much fun. Luckily, I do have the gj tube for nutrition, but I super-dooper hate it.
At my 2 week surgery check, the scale showed I'd lost 10lbs since the surgery. Obviously-not good. In addition to the spasms and pain, I'm having a ton of abdominal pain with the tube feeds as well. Tomorrow I'm going in for a quick X-ray to make sure the gj is in the right location. Right now an EGD is not the best idea do to the still healing surgical site. Also, I have the nerve damage throughout the gi tract, so an EGD probably won't provide any new info. It's all part of the autoimmune mess, and eventually the right med combo will be found, and I'll be able to get nutrition. I've mentioned weight loss many times, and I've lost close to 80lbs at this point. I had prednisone pudge to lose, but I weigh the same now as I did in middle school. Too bad I didn't save my Guess brand tshirts, and neon color tops that I use to tie in a knot by my hip. It's the Saved By The Bell wardrobe-totally rad :)
Back to the appointment-surgeon was disappointed to hear of the swallowing difficulties and pain. He did say again that the surgery was way more complicated due to extensive scar tissue-way way more than expected. My body creates much more than usual, once again due to autoimmune processes. He's hoping that inflammation from the surgery is causing the problem, and it's taking longer for it to decrease because of the other issues. For now, he wants me to rely on the gj tube for nutrition, and take the swallowing of food slowly. When I do have the spasms, I'm to wait 24hrs before trying to swallow again. Needless to say, this is not what I was wanting to hear. I return to see him in a month, unless I go downhill from here. He wants to give the surgery 3months before he calls it unsuccessful. If this is the case, then a gastric bypass will be the next step. This will be extremely hard on my system and it's what we are hoping to avoid.
After hanging out with the surgeon, I booked it across town for my pain doc appointment. Small world, my surgeon and pain doc are good friends. I should've hosted a dinner party instead of different appointments. Yet again the weight issue was discussed, and the pain from the gj while running feeds. This is not an issue that I base my pain level on, since pain meds just slow everything down. I do take 100mg of amytriptline to help with the nerve damage there, and around the jaw replacements. Unfortunately, gi pain, as many of you know, is hard to treat. Pain meds often call more harm than good.
One med that I've been on for years is Fentanyl. With my gi issues, it's been a good med since it's absorbed through the skin. about a year ago I was on 100mg. Since then, I've been trying to lower the dose. I had my first surgery in elementary school, and know I have many many more to come. Obviously, I can't stay on high doses of pain meds, I have many years ahead of me. During this last surgery I was on 50mg. At my appointment, I asked to lower the dose to 25mg. I know it's going to be tough, but hopefully some of my coping skills will help. My oxcycodone dose will stay the same, for now. Since everything I have going on is degenerative, I need to focus on the bigger picture, and not just right now.
I've had enough healing for the surgeon to green light the treatment plan at Duke. I know there are many of us with autoimmune issues, who might have similar treatment plans. Maybe we can share notes. My appointment is on the 15th, and hopefully both of my infusion meds, cytoxan and rituxin, can be scheduled at the same time. There is still some question as to how they will be administered. One idea is to have a week long cycle, with cytoxan at a lowish dose, every 2 months. In addition, my Dr would like to add Cyclesporian as a daily med, but the gi issues will probably nix this idea. It can be crushed and be given through the gj tube, but there still is the question as to how much is absorbed. It's not a med that can be questionable.
I'm incredibly hopeful that this plan will help, and with greater disease control, I will be in less pain. I would love to continue and decrease the pain med dosages, with higher doses an option after surgeries.
One newish area of pain for me are headaches. I was diagnosed with epilepsy in Sept. after spending a week on the neuro floor. The testing was due to twitches in my right arm, talking way off topic, vision issues, extremely fatigue/zoning out, and crazy crazy headaches. 2 weeks ago I had a new symptom which freaked me out. I've been waking up in the middle of the night with the need to go to the bathroom. When I get up, I can only see out of one eye. This has resulted in some pretty spectacular falls-I would totally rate them as a 10. I currently take lamictal, and I'm still at a pretty low dose of 300mg daily. If there's someone here on it, I'm curious as to what dose. I know there are plenty members who fight migraines. I know narcotics are not the best choice for this pain, so I'm trying to not include headache pain, when it comes to pain meds. Other than amputating my head, do you guys have any tricks? It would be great to decrease one area of pain.
So-yet another saga, and I've thanked you guys many times for allowing me to write everything out. I still do appreciate it, and I appreciate this forum. I hate that we are all searching for answers, but it's easier not to search alone.
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