Star, that stinks. So they didn't even give you the option of testing for the other types of amyloidosis (not sure how to spell that)? It is interesting that everything keeps coming back to Crohn's. I'm not sure what CBT therapy is? I remember you talking awhile ago about a possible immunosuppressant trial, but I think that was with your old rheumy so I'm assuming that's no longer an option? How frustrating that you have to wait until January now. I don't suppose you could see your GP sooner or that they could do anything for you in the meantime?
theseithakas, yes, UTIs are really not fun and very uncomfortable. There is one medication that helps with the symptoms and it's over the counter so no prescription needed - it's called Azo. It's not an antibiotic so it won't actually get rid of the infection, but it makes the symptoms much more tolerable. It's apparently got a lot of iodine in it and it makes your pee turn dark orange (the dark urine can stain too so I have to wear a pad when I take Azo). It was the first thing I reached for on Saturday morning when I realized I had a UTI. If you ever get a UTI again, of course try to get on antibiotics right away, but if you can't get on them immediately or if they take awhile to kick in, I would definitely recommend trying Azo. I keep a stash of it on hand at all times because I never know when I'm going to need it.
Oh, and theseithakas, good luck with your GI appointment today! And if they try to make you "wait and see", tell them that is unacceptable and then tell them specifically what you want (more tests, a trial of meds, a referral to a different doc, etc). I have had to demand things from my docs in the past and I find that it goes better if you say specifically what you want rather than just say "help me". I demanded a trial of prednisone and I got it, I more recently asked for an upper endoscopy and got that. If you tell your docs what you want and specify why you feel that way, they are more likely to see your side of things and give you what you ask for. Good luck and keep us posted on how it goes!
lsgs, as for pain relief, unfortunately we are very limited. With things like IBD, you are not allowed to take NSAIDs (non-steroidal anti-inflammatories - things like aspirin, ibuprofen, many others) because they can make IBD worse and cause bleeding stomach ulcers. So tylenol (also known as acetaminophen/paracetamol) is my only over-the-counter option for pain relief and it doesn't work very well. And I can't overdo it on the tylenol either because taking too much can damage the liver and I already have funky stuff going on with my liver. Fortunately I'm in remission and I never had super terrible pain to begin with. Before I hit remission I'd get some LRQ pain but it was never unbearable so I just dealt with it. I do have arthritis in my hip but that is also mild so tylenol and sports creams usually make that feel better when it aches.
The sad thing is, most docs are not too keen on handing out pain meds for things like IBD. I don't know why that is. But for other pains, they hand out pain meds like they're candy. I was rear-ended in a minor car accident earlier this year, and I had a mild case of whiplash, and they threw all sorts of muscle relaxers and codeine at me. I took the muscle relaxers for like 2 days and I didn't take any of the codeine stuff, so I still have it and am hanging on to it "just in case". So yeah, the system is kind of messed up that way. But my understanding is that GPs are more likely to prescribe pain meds than GIs are, so if you feel you need stronger pain meds, check with your GP first and see if they'll prescribe something.
Bozzy, I didn't realize your symptoms were that bad, poor thing! How long do your chiari flare ups usually last? Is there anything you can do to lessen the symptoms when it flares up, any meds you can take or anything? I don't blame you for wanting to put off surgery though, that's what I'm doing with my GERD/hernia situation. It's like, it's bad now, but with the potential complications, it may be better but it may be worse after surgery and I don't know that I want to take that risk and I at least need time to wrap my head around it and understand all the potential risks. And as scary as it is for me to envision surgery in the area of my stomach/esophagus, surgery around the spine/brain sounds even scarier so I don't blame you one bit for not having the surgery done now! But I hope there's something you can do to alleviate symptoms in the meantime.
How's everybody doing today? I'm okay, very glad it's Friday as it's been such a long week. I think it's been a longer week for my hubby though, he's working 9 days in a row without a break. His boss is selling her costumes at a convention this weekend so hubby has had to run the shop and help his boss set up at the convention so he's basically doing double duty right now and he's exhausted. All this makes me glad I don't work in retail! So I'm looking forward to a quiet weekend home by myself as hubby will be working all weekend. I'm going to do some sewing, some crocheting, some cleaning and maybe some baking. And of course I'll sit and watch movies and drink hot chocolate and all those other lazy weekend type things.
I may visit with an old friend too, a girl I've known for many years is back in town for a funeral but her family is kind of nuts so I suspect she'll stop by to get away from them for a bit. So a nice relaxing weekend should be in store, hopefully my health plays along. As long as the IBD, GERD, arthritis, UTI, and whatever else are all quiet, then I'll be good!
