I was diagnosed with Crohn's in 1985. I was about 16 years old and I had never heard of it before. Admitted to the hospital I was bleeding internally, had lost 30 pounds and was down to 104. I was not allowed to have food or water, Only through IV. This was a 3 month hospital stay. After I was sent home feeling a little better. I would have multiple flare ups ending back up in the hospital usually 2 weeks at a time all through my teen years. In 1991, I got married and the stress was overwhelming it did not help my husband at the time was very unhappy that i was sick so much and gained 30 pounds after being on prednisone for years, it stopped working and my intestine got fistulas all over. The infection took over my body. My legs hurt so bad i could not walk. My GI told me as much as he didn't want to there was no choice but to do a bowel resection at 22 years old. During my bowel resection where the Surgen took 17 1/2 inches of my small intestine around my ilium, they discovered a mass near my pancreas about the size of a golf ball. The surgery was longer then they had told my parents and because of bleeding issues i was put in the ICU for 2 days and able to leave the hospital after 3 weeks. Unfortunately 3 months later i had to return to Hospital so the mass could be removed, when they got in it was the size of a grapefruit. The dr said it was growing fast and becoming malignant. They were able to remove the mass completely.
I was in remission for almost 15 years after the surgery only having IBS and arthritis. Another issue i had frequently while in remission was Kidney Stones about 4 different occasions and in 2000 I had 2 large hernia's from weight gain. Now I was going through divorce so again extra stress then i already had. I also had a 5 year old daughter (who I had by C-section in 1995)
I wasn't until 2007 I came out of remission when it became a daily fight with Crohn's again but this time the added issue of Fibromyalgia, I just didn't know what it was called until finally diagnosed in 2014.
I have tried 3 biologicals Cimzia, Humira and Stelara, while also taking 6MP on the Cimzia. The first 2 stopped helping me and the Stelara made me catch 4 viruses in a 5 week period. I am done with biologicals, besides i dont trust them and stress about cancer while on them. I was never able to do Remicade because its an infusion and my veins are impossible , but I have seen several papers taking about liver disease and possible connections to Remicade so just as well all though now i have a Liver disease called NASH (nonalcoholic steatohepatitis) so either way thats where i am now. Trying to loose weight and eat more veggies and hope not to flare.
I now am only taking LDN Low Dose Naltrexone and Delta 8 for pain. Along with vitamin B12, D and now E for my liver. I have been on LDN for 5 years it helps some as long as I stay away from grains and of course anything that could cause a blockage considering my ilium is the size of a ball point pen now with lots of scar tissue.
Im tired but happily remarried, my daughter is happily married so trying to focus on my faith and getting my body better.
keeping positive is key and not always easy but when I get ready for the day make-up and all, it does make a difference in the way I feel ( most days) I hope the Stelara continues to work for you, it always can be a challenge. The inflammatory arthritis can sometimes be like fibromyalgia I’m sure, where some days it’s harder then Crohn’s to deal with. I wish you health and happiness! 😊
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