I have taken Phenegren, I had a reverse reaction to it (durring pancreatitas), caused by clogged bile ducts, another gift related to Crohns so the doctors say, had a surgery to cut them open, widen them and clean them out.
The phenegren burned the veins in both arms, my arms blew up like the hulk, and the veins all collapsed, the hospital called it "burning a vein" I believe, was 2 years back.
Veins seem to be getting better this year, Im a tad easier to stick this year then previous years.
I am on zantac and karafate (tried reglen, no luck), havent tried any other nausea drugs, the karafate (this stuff works for stomach upset) does work, but continual use of it has another side effect, it causes a different type of pain with prolonged use, almost like food isnt being digested at all.
As for pain meds, I tried percocet, vicodin, morphine, dilaudid, phentonyl (the patch), and a couple more I cant remember now, I have tried variations in dosage for each, that vomitting is instantaneous with in an hour of taking any narcotics so far.
I was on prednisone for the first few years, and they changed it to entrocort, then I got off that 2 months back, coincidentaly my health has declined rapidly, but I started remicade right when I went off the entrocort, so a tad confused on what may be going on now.
This may be just one of those cases where you come off one med (remicade, didnt work, 3 infusions total) and move to another (humira) as the time delay in between usualy means one didnt work (so it is getting worse) while you are hoping for the next one to work.
As for my doctors, I cant complain about the individual doctors themselves, they try hard, kaisers system just isnt condusive to allowing doctors alot of time with each patient, although mine does take my condition seriously, its not the doctors, its the kaiser system which is a little flawed in terms of how little time they allow doctors with their patients :)
My diet has varied over the years, I have stuck to the doctors suggestions pretty much throughout.
I have reduced the fat intake as much as possible, I eat the softest non-stomach irratating things I can.
I avoid spices, red sauces, fat, sugar, NO meat at all, water or juice only (organic), I'm currently trying gluten free food.
Right now for the most part my Doctor has me on a "soft food" diet
This means mostly pasta, with no sauce, I use margarine and add some mushed up veggies.
I also have 1 organic yogurt.
Currently I eat about 8 ounces of food a day. The pain and nausea when I wake up lasts for anywhere between 1 hour and 3 or 4 hours, not to mention the lovely all day "I'm sick" feeling.
The current inflamation in my blood stream is presenting a problem, mostly them stopping it, it may be responsible for lighting up my spinal cord in pain ( so my reumatologist says) they are going to scan my body for this ( some kind of bone scan) these test usualy are negative. (adding to the frustration)
I have and continue to have mass's growing and reducing in my body, some in my neck and some under my armpits, they took a saliva gland from my neck and biopsied it, no cancer they said, then they just blew it off as Crohns swelling.
Im hoping the figure out what the deal is with the weird swelling mass's.
Well, it aint death's door, but I gotta concur on the "this sucks" factor of being sick.
I cant complain really about life, I have a great woman beside me, 14 years, without her love holding me up, I dont know where I would be, I physicaly shutter at the thought of not having her by my side (hell I would have shuttered at that thought if I was healthy)
I do not feel insane by a long shot, but I have to admit that human emotions have their own way of playing out without my permission, not sure if that makes to much sense, but a good example is crying at tv shows or comercials.
I dont feel sad, yet the tears flow, your stories make me cry, yet still I feel strong, I do not know why that is happening, if I had to guess, I would say it is based on some form of comisseration perhaps, what do I know right :)
Geez you get long winded when your inbetween treatments and have no where to go.....
I am vary curious if anyone is using acupuncture or marjuanna as both here in california are things my doctors will allow me to try...(kaiser no deal, independent doctors more open)
Anyone having success with either?
On a side note, I caught a kid (maybe high school age) trying to break into my house (3 am) this week and chased him off (meaning I yelled out the door that I had called the cops and he better run), he was in our backyard testing our doornobs to the house, scary.
Hey at least it promted me to go out and talk to the neighbors eh :)
anyway, I forgot to say in my last post, Thank you all for posting, for reading, for just "being" there in any form, I feel the compassion in every post.
Post Edited (Blue Velvyt) : 1/3/2008 5:35:19 PM (GMT-7)