Posted 7/6/2013 6:50 AM (GMT -6)
Hi, I am new here so here is my intro:
I am 61, married, 1 child, 2 grandsons. I was dx'd with Crohn's in 1980. Was first treated with Prednisone. Got the usual weigh gain, hunger, moon face but my Crohns was controlled. Was taken off Prednisone after 3 years by new gastro Dr and put on Pentasa. Worked for awhile but then I had to have my gallbladder removed due to stones, appendix removed and a small bowel resection done due to blockage. I had to have the part of the small intestine that reabsorbs the bile back into the body. I had continuous diarrhea for 2 years that was pure hell. I moved to another state and my new gastro Dr. put me on Questran which changed my life. I did notice though that if I got into a flareup, mainly due to stress, the Questran didn't work as well. But still was amazing.
Over the years I developed the other health issues listed in my signature. RA and Sjogrens along with the Crohns got me approved for disability as I couldn't work any more. This was about 8 years ago.
I was dx'd with RA 11 years ago. Started treatment with Pred and Methotrexate. My liver got damaged from the Methotrexate and I was put on Remicade which treats both RA and Crohns.
My RA has affected my spine, neck, hands, feet, hips, knees and shoulders. My knees are popping out alot in the past year and my rheumy Dr. says I may need knee replacements.
I also have peripheral neuropathy in my feet and have been told that both RA and Sjogrens can cause this.
I have had a total of 3 resections with all due to blockages and one included a fistula ready to open on my abdomen and a huge mass of Crohns scarred tissue.
I get Remicade IV inifusion every 7 weeks for the RA and Crohns. It works pretty good but my RA is getting worse and my Crohns keeps flaring. I tried Humira with no luck, can't take Prednisone due to cataracts and methotrexate damaged my liver by about 40%.
All my life I have had dry mouth and eventually developed dry eyes and skin. Was dx'd with Sjogrens Syndrome and over time lost all my teeth to cavities. I spent close to $20,000 on my teeth but two years ago had to have all my teeth removed. I am not doing well with dentures due to soreness caused by dentures and Sjogrens. So at home I don't wear them. When I go out I do for cosmetic purposes.
I can't eat with the dentures as the Sjogrens causes sores in my mouth and the dentures irritate them.
I have to use regular eye drops, drops for dry eye and also drops for the glaucoma.
I use coconut oil on my skin for dryness which works well.
I am having issues with lots of dry skin on my scalp which looks like dandruff but isn't.
I also developed Peripheral Neuropathy and Raynauds in my feet. I have cold feet all the time and have tried to wear socks all the time which helps a little. I get hot flashes and can't tolerate hot weather. it's so weird.
I discovered after my Mother passed away, that she had Sjogrens, Crohns and dentures. I guess I inherited them from her. My son has IBS which he must have gotten from me. Mom always said she had "cotton mouth". She had to have her teeth removed when she was 20 back in 1950.
Thanks for reading my post and I appreciate any comments, advice, etc.
Linda - Crohns, Bile Salts Diarrhea, Rheum Arthritis, Sjogrens Syndrome, Fibro, Ankylosing Spondylitis, Liver damage from Methotrexate, Glaucoma/Cataracts, Peripheral Neuropathy/Feet, Depression/Anxiety, GERD, Overweight
Rx-Remicade, Paxil, Klonopin, Questran, Vit D, Protonix, Losartan, Oxycodone