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I am so thankful I found you all and know I will be coming here a LOT and this will help me a great deal. Just a little about me, I am 42 years old and the mom of 2 boys one 21 years old and one 9 years old!! I have been sick all my life with many illnesses this one has haunted me since I was 2 years old when my parents had to start giving me suppositories because nothing else the drs tried would work and it took me weeks to have a bowel movement.
Unfortunately it never went away and by high school I even missed a lot of school do to pain, nausea and just plain feeling sick from going a month with out going.
Didnt see many drs at this point mom had no insurance, through middle school I just didnt eat much and only weighed 60pds.... also suffered with asthma and sinus disease had 2 surgery's on my sinus so drs focused on that more.

So when I got married I started seeing drs my self I was 18 and they said it was IBS did some test and told me to use fleets and take laxatives BOY thanks heard that before. Got pregnant had my son ...... things stayed the same then had many surgery's ..... through out the years hysterectomy , appendix , ovaries removed. 5 sinus surgery's lymph nodes removed, hand surgery, 3 foot surgery's... breast surgery, gallbladder, reconstructive sinuses. During this time I also had Lymes which they found I had for over 10 years and the low dose of antibiotics I was on had hid it so I had to have a porta cath for 8 months and do IV antibiotics 3 times a day.
Then to be diagnosed with FMS: and Ra so I now do Remicade every 30 days by IV as well.
I got blood on my brain and lost all my spinal fluid 1.5 years ago over the remicade so I had to stop that for 7 months that was awful but we are hoping it doesnt happen again??

Needless to say I have been through hell and back and am still having the same issues I cant go to the bathroom on my own but use to be able to get help the one med that did help went of the market 6 years ago caused heart attacks :(

Now NOTHING works fleets nothing, laxatives nothing , enemas nothing even when I do the prep to have a colonostapy DR has to clean me out once I am asleep the prep does not work :(
So all the test began 5 months ago the one that really pushed my dr to say yep the colon is fried ( excuse my term) is the sitz marker after 14 days of exrays ALL 60 markers were still there and did not move.

So if you got this far..... I have a GI doctor who doesnt really believe in surgery so he has not agreed my surgeon who I love and even made one of the TOP 100 drs here and the front of the Baltimore magazine does and he sent me to another surgeon last night who said it NEEDS to be done and its time for me to have some relief have a life. Because pretty much the past 7 months I dont eat but once a day and if we have anywhere to go I wont eat at all because of the severe pain and nausea so I am so malnutritioned and so weak like sucks and I want mine BACK......:ylol2:

Thank you for listening and I look forward to getting to know you all and hearing your story's and being your support as well.:dance:
 

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Hey there! Welcome to the forums here and sounds like you'll have a ton of experience to help all those out on here. Truly unbelievable you've raised kids through all that and definitely an amazing feat. Sorry for your recent troubles but it's fantastic you've got a great doctor now and that will hopefully make a big difference.

:welcome:
 
Hey there! Welcome to the forums here and sounds like you'll have a ton of experience to help all those out on here. Truly unbelievable you've raised kids through all that and definitely an amazing feat. Sorry for your recent troubles but it's fantastic you've got a great doctor now and that will hopefully make a big difference.

:welcome:
ahhh.... thank you ,

My kids are what I have fought to survive for with out them I think I would have gave up a long time ago.

I see you are on Remicade as well.... do you like it? Have you had any bad side effects?
 
I love it, changed my life. No bad side effects to speak of so far in just over a year of being on it. I went to Mexico a week after my first infusion and gained a ton of weight and now have gained nearly 40 lbs of weight to get to healthy levels again. I have nothing but good things to say about it.
 
I love it, changed my life. No bad side effects to speak of so far in just over a year of being on it. I went to Mexico a week after my first infusion and gained a ton of weight and now have gained nearly 40 lbs of weight to get to healthy levels again. I have nothing but good things to say about it.
Oh wow glad it didnt make me gain weight lol... but at this point weight would be good 96 pounds and 5-8 suck:thumbdown:

I have been on it for the 5th year now had to go off it a year though due to blood on the brain and loss of spinal fluid so I am on a low dose now. Cant wait until the up it again so the pain gets better!!
 

xJillx

Your Story Forum Monitor
Hi Lizz and welcome! My goodness, you have been through so much! You are one tough lady!

While taking Remicade for your RA, did you see an improvement with your bowel issues? Were you as constipated? I hope you can successfully up your dose once again without complications. Hang in there!
 
Hi Lizz and welcome! My goodness, you have been through so much! You are one tough lady!

While taking Remicade for your RA, did you see an improvement with your bowel issues? Were you as constipated? I hope you can successfully up your dose once again without complications. Hang in there!
Maybe a TINY bit in the beginning 4 years ago but not long and not at all now. I WISH and I wouldnt be in this position :( they say it help the stomach and cramps and all but not me sadly. Why do you ask?
 
I know this is off topic but how do you guys get your picture over there by your users name?... Mine is in my profile but wont show up there.
Thanks
Lizz
 

xJillx

Your Story Forum Monitor
Maybe a TINY bit in the beginning 4 years ago but not long and not at all now. I WISH and I wouldnt be in this position :( they say it help the stomach and cramps and all but not me sadly. Why do you ask?

If Remicade didn't work well in the past, do your doctors really think that is the best choice for treatment? I don't imagine it is going to work any better a second time around.
 
If Remicade didn't work well in the past, do your doctors really think that is the best choice for treatment? I don't imagine it is going to work any better a second time around.
I NO NO sweetie sorry I thought it was explained in my bio~ I have RA real bad thats why I had to have the 3 foot surgerys and the hand surgery the RA ate my joints away. I am on Remicade for the RA.... its a Immune suppressant and RA your immune system attacks your own body organs joints ect....

Sorry I confused you I just thought you wondered if it helped both illnesses in one swipe with me :)
 
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