Hi, my name is Stephanie, I am 40 years old and I was diagnosed with Ulcerative Colitis three years ago. I’ve been flaring now for about nine months with not a whole lot of relief.
Some more details:
I live right on the Canadian border in New York. I run a registered daycare which has become hazardous to my health as my current and longest flare was brought on when I contracted rotavirus from one of the children I care for. I love my job and am very upset that if I my symptoms do not improve soon, I may have to leave it behind.
Current Colitis Symptoms:
Right now I visit the dreaded room anywhere between 7 and twenty plus times a day. I’m bleeding over half the time, have some mild abdominal pain and burning. No real sleep and now I am having some neurological issues. Left sided numbness and dizziness.
I’ve been on Ascol, Lialda, Canasa, Hydrocort, the dreaded Prednisone, Colazal, Remicade, and now Humira. I also take Prilosec, Bentyl, vitamin d3, potassium, allegra, a probiotic, a Multi-vitamin, and attarax for sleep.
I took my loading dose of Humira , two weeks later the next two injections, and now I am due to take my maintenance dose. A week ago I had a dizzy spell followed by left sided numbness in my face and down my left arm. I also had very brief weakness in my right arm. Later The dizziness went away fairly quick but I still have a little numbness across my left cheekbone and some mild intermittent numbness throughout my left arm. I’ve been researching on line and found a few other cases where this has happened. I’ve also read about some people with IBD having similar symptoms without Humira.
Has anyone else experienced this with or without Humira? If on the humira, how long before numbness, dizziness went away? Did you continue the Humira? If so did the neurological symptoms get worse?
My mother is a nurse and is trying to encourage me along with my doctor to take my next Injection. I really want to take it but I have to admit I am also a little terrified. I can’t get into a neurologist until the end of the month so I’m left to make this decision on my own.
I am so grateful for my husband, he really is my rock! I don’t think he knows what to say with this particular problem. He’s worried right along with me. I’ve been told I am running out of treatment options. My doc says there are only two left. I am really hoping that if I read about some others experiences I will be able to come to a more informed decision.
Medications Stephanie has Used:
The mesalamine family has taken a toll on my liver, The doctor I had before prescribed a lot of prednisone which was terrible to deal with but did always help to pull me out of my flare. He along with my new doc really do not want to use anymore of that. On Remicade I went into anaphylactic shock. I REALLY am running out of options. I have found that i am lactose intolerant. I am not gluten sensitive. I drink a lot of ensure and am still working on my diet through process of elimination.
written by Stephanie
submitted in the colitis venting area