Still fighting!

[Starlight]

I have not posted here in a long time, but I do come often to read and keep updated.

Just thought I would give an update since its been a very long time. Not sure how many people will remember me, but last year I went in to get botox injections to heal a fissure. Well while they were in the surgery they discovered a fistula so they did surgery to fix that as well.

Well, I had about 2 months of half relief, It still hurt, but not to the extreme as it had been for years, but I am now pretty much back to where I started. I still suffer the pain almost every night, and i'm to afraid to go back to the Doctor because she told me the next step if this didn't work, was physical therapy. I have NO idea what that involves, and being an already extremely shy person, I don't want to find out! I know it probably sounds crazy, but I rather have the surgery again!

I am still taking remicade, double dose every 8 weeks. Though its looking like that soon may be shorten to 6-7 weeks. I just had a treatment yesterday and it was actually 9 weeks because they for some reason, could not do it last week. Well I started 2 weeks ago (around the 7th week) popping up with mouth ulcers again. I had 15 in my mouth at one point, 2 healed up, then then other 13 just would not heal. Made talking difficult, made task like eating and brushing teeth extremely painful. I have not had this many ulcers at once ever since I started remicade back in 2006. I used to live with them, having 20+ in my mouth at one time almost constantly. I don't know how I did it now knowing how much remicade has helped me! I also had a good bit of bleeding that lasted a week, but I think that was just from the fistula.

Though, it is scary. I told them I could not go 9 weeks anymore because of the ulcers.I didn't tell them about the bleeding(i know, shame on me, but I always have been a very hard headed person that tends to hide things like this) Told them, if anything, I would just have to go a week early. But the thing is,I started popping up with the ulcers at close to the beginning of week 7. So I know eventually i'm going to have to shorten the time span I can go between treatment, which brings the day that much closure where remicade will not work for me anymore. I don't have any doubt that one day it will stop working, but i'm going to try to go on it for as long as I can stretch it. I have no idea what the next step will be after it does fail. I used to be able to go 9 weeks between treatments and not have any problems. =(

So thats pretty much the run down. Im still having problems with the fistula. Its really a bummer how doctors put so many people on remicade mainly because of fistulas, and remicade won't do anything at all to help mine. SO frustrating, but I guess I can't complain to much where it does help keep me from 20+ ulcers and keep me from bleeding out! Can't get everything I suppose! lol

Excuse any typos, Im typing on my ipad, and not as easy to catch errors on here!

 

[xJillx]

I am a new member this year, but I am happy to see you are back. Thanks for the update, though I wish it was better news. It certainly sounds like you need to adjust your Remicade schedule. Have you discussed this with your GI? Is he on board?

 

[Starlight]

I have actually yet to even meet my doctor! Thanks to the hospital I used to get my infusions done at for about 3 1/2 years started coding it different and it messed up our insurance. In order for me to stay that, they wanted me to pay $50 copay. Plus the deductible that was somewhere around $1500 each time, as if tha wasn't enough I would have also had to pay like 25% or something ( I can't remember how much, for some reason I'm thinking it was more than 25%) of the remicade drug itself! I'm on a double dose getting it every 8 weeks. My average cost if $18'000 every time. Obviously I can't afford that, I mean who could?!!! So we were obviously not to happy.

So luckily we found a doctor who codes it right and I only have $50 co pay. Only ting is, I don't like it there. The old plce I got it at had nice lounge chairs that were comfortable. Used to almost look forward to treatments because it was a day off of work, I just relaxed and watched movies on my ipad. Well this new place has these gurney tables that are extremally uncomfortable,
us they had that annoying paper lining over the able, so when you move around, your crinkling/ wrapping paper, shh sooo annoying. So it's defiantly
not as comfortable, I don't really like the nurse, shes no mean, just one of those people I don't feel comfortable with. When I told her about all the ulcers I had, she kind of gave me a look like was crazy. I've also told them about
some lymph nodes that keep swelling up, including on on the right side of m
neck that is pretty big and will not go down. It will every once in a while get
smaller, but you can still feel where it's at, but most of the time it's big. They
never said nothing about it or even checked it out. I think you literally need to be bleeding out for them to listen to you. So yes, don't like this place a all,
but. Dont have a choice really thanks to insurance. Not to mention since they only do infusions Starting in the afternoon instead of morning, I have to work 1/2 day that day until I leave early. So no more free days off completely. Sad I know.:ylol:

So long story short, I know I ramble a lot, but no. Havnt discussed it with him. Havnt even met the man and have been with him for like 7-8 months now!

Sorry about the weird typing. Typing on my iPad and this things pretty limited when trying to fix errors.