Need some clarification

Hey Sharon, pleased to meet you my name is Lucy. I have had the privelage to have read your posts, and I must say chapeau!!! My heart goes out to you! You truly are an amazing individual. I stand buy you when you mention also how being in 2014 ...that it blows my mind also how beeping in 2014 society is not educated about our illness and it scares my because my youngest baby girl has been diagnosed at the age of 18! she is at the prime of her life and how hard this is for her and poor kid after having witnessed what I've lived doesn't quite encourage her on where we are heading.
One thing for sure is I will be damed that she will suffer even an eighth of what I've been through because of negligence!!! It's ridiculase that dr. Don't even inform us of the treatments that are out there.
I just want to say thank you for helping your student about her options and things she should ask about even though nobody dared to mention.
This site has been a great help to me and is giving me the courage to bring it fourth to the doctors. I've always been shy and afraid about stepping on someone's toes but it comes down to survival.vwhat scares me I started with a simple intestinal disorder, witch lead to poor kidney function, my lungs colapping due to medical negligence and blood clot in lung and a poor hear. I was a young women that always watched what I ate and trained all my life, know I battle with ankylosying arthritis having a hard time getting through everyday essential chores, I'm one of the lucky ones that has a loving husband a great daughter that has been my guardian angel and my baby girl that has inherited my great genes that gives me the strengt to fight it through. A big hug to you Sharon you really inspire me.

What was the reason for your colectomy? If not some form of IBD, then what? I would tell your doctors the truth; that you suspect some form of IBD, based on your symptoms before surgery. Hard to believe that your mother could control whether a diagnosis was put in your records. My guess was that it was indeterminate...

You can presume autoimmune and let your doctors figure it out from there. They have better testing parameters now.

Jan

Thanks Jan,
She had a very long arm when it came to doctors and hospitals plus she worked in the hospital where I was usually treated.
The fact that I had severe IBS is no where in doubt. The 'disease' that was accepted was all of the congenital deformations (kind of hard to hide them!) that included no rectum at birth. just a canal of muscle but my colon ended at the decending colon then poof! nothing.
That was the start of the problem.
Took 2 yrs to do the reconstruction surgery that fell apart post op (x6!) and ended up with a colostomy.
Reconnected 2yrs later then the nightmare of bloody bowels & cramps etc for 16yrs with the added fun of full blown incontenence.
I was diagnosised with stomach ulcers, 'bad bowels' (!!!) and permanent diarreah. Lived off of slowfee, lomotil and cortisone for the 'flares'.
Not even sure that anyone ever spoke about autoimmune diseases at the time. I never heard the name until the 1990s...
So, 'suspicion' is enough? Can they move forward that way with a concerted treatment on all levels?
Nice to meet you too Lucy...so glad that you have found this site and that it is helping you. I am sure that we will 'see' each other often here.
Sharon

Not sure if birth defects such as those are precursors to IBD. Perhaps you had too many antibiotics and wound up with chronic C. difficile infection that was undiagnosed. Back then they did not routinely test for it. Colectomy for that is fairly common. The tricky part is that C. diff infection could also be an IBD trigger.

But regardless, just tell your docs what you know and what you suspect, then they can connect the dots from there. They can test for markers and antibodies that will give clues. Sometimes the answer never is there...

Jan

thanks Jan,
Will do.
Sharon

Saw the Rhumy tonight and walked out with a packet of perscriptions.
He wants me to do an MRI, double the dose of anti-inflamatories and start using muscle relaxants to see if they help.
More physio as well.
For the pain in the feet he says that it is a stiffness in the small bones of the feet and although it is painful for a couple of minutes every time I get up it is not dangerous or treatable...no breaks, no tendonitis...just age. Yuck...age.
Will see what the MRI shows but thinks that I should consider seeing my surgeon to make sure that it isn't the pouch that is down and sitting on my pelvis.
To be continued...
Sharon

I take muscle relaxants, at bedtime mostly. Not sure if they do much of anything, but better than upping my Norco dose I suppose. Be very careful with the increased doses of anti-inflammatories and be on the lookout for new GI symptoms and/or bleeding. If they occur, then you are going to have to stop the Rx. I wound up having to limit myself to two week spurts when I was having a flare. I was able to take them for a few years before pouchitis and liver inflammation set in. They worked great for my arthritic pain, so I was sad when the party was over...

Age, nothing you can do there, other than keep moving. I am beginning to think that when I am pain free, I will probably be dead, so I'll settle for functional!

Jan

Jan,
That is more or less what he said...that if you wake up after 50 and nothing hurts then you are dead!
I would accept mildly pain-free.
The physiotherapist is back to 2xs/week and doing deep tissue and ultrasonic treatments on my upper and lower back + foot. That plus the upped doses of anti-inflamatories and the muscle relaxants and I can almost function pain-free. Youpppiii!
Now's the time to do my spring cleaning!
Will keep an eye out for the G.I symptoms but so far so....(scared to say it!)
Sharon

Hey, whatever works!

I gave up on pain free a long time ago. My main concern is to be sure that continuing to use joints that are painful is not adding to the harm (as that is the case with acute injury). So, when my rheumy assures me it is OK to work through the pain, I am happy to ignore it. Sometimes there is a new and sudden pain that I need to get x-rayed to be sure there isn't a stress fracture. Otherwise, I just try to ignore it as much as I can. Things are definitely much better since starting biologics. I hardly ever need my cane now!

Did your rheumy think you have IBD, based on your history?

Jan

He was about 95%sure of it.
Seems that I have all of the markers and symptoms.
He doesn't want me on anything stronger than what he has given me until he sees the MRI.
For now, his anti-inflamatories are killing my gut!
The 1st time in years that they hurt my stomach so much that I am nauseous all day long.
The muscle relaxants are killers too but for other reasons. Dizzy, woozy, doppy...take your pick but I slept like a baby!
I don't dare take them in the daytime...I would walk into walls
The pain is still there but I am less concious of it.
To be continued.
Sharon